Peripheral Nerve Decompression Micro Surgery

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  • #40558
    Profile photo of teenazless
    teenazless
    Participant

    After exhausting all available migraine treatments , my 17 year old daughter was told that she had to learn to live with the pain. Our family did not like that response. After searching on the internet, we came across a story about nerve decompression surgery. After months of pain, we contacted Dr. Ducic of Georgetown University. He preformed the surgery on my daughter. In recovery my daughter was smiling! I had not seen a “real” smile from her in over a year. The is a relatively new surgery. My daughter missed the social aspect of her junior year in high school, she was given a temporary disability due to the headaches and felt very alone. Now, she is enjoying her time as a senior in school and doing well in her classes! Her story can be found at mydaughtersheadache.blogspot.com.

  • #42737
    Profile photo of Ellen Schnakenberg
    Ellen Schnakenberg
    Participant

    Teenazless, I’m so thankful that your daughter was able to find relief. I wish this surgery was going to benefit everyone, but alas, it is not to be. That said, I think every Migraineur, especially if they’re chronic, is going to smile at the thought that at least one person is feeling better now as a result.

  • #47199
    Profile photo of Rhonda
    Rhonda
    Participant

    I have been approved to go see Dr. Ducic for a consult. I will let everyone know of my progress.

  • #47216
    Profile photo of Ellen Schnakenberg
    Ellen Schnakenberg
    Participant

    Thanks Rgfurr ๐Ÿ™‚

    ~Ellen

  • #48277
    Profile photo of Rhonda
    Rhonda
    Participant

    Hello everyone,

    Well, I had surgery with Dr. Ducic on Feb 10. He removed all 16 nerves in my forehead, temples, above my ears and the back of my head. I am so excited to say that I have not had any migraine symptoms since. I have had no migraine pain, no sensitivity to light, no sensitivity to sound and no nausea. I can walk outside in the sun now. I have not had a pain free day in 4 years. There is some discomfort from the stitches (I get them out tomorrow), but nothing remotely close to the pain I had before.

    For those being told that you must learn to live with the pain, this is the best decision I have ever made. I paid for the entire surgery up front so I was able to get all nerves done at one time.

    I chose to go ahead and remove the nerves to ensure I would not have to have surgery again if decompression did not work.

    I am also already applied for jobs so I can go back to work.

    I have also been earing foods that were triggers before with no pain.

    • #48352
      Profile photo of Ellen Schnakenberg
      Ellen Schnakenberg
      Participant

      Rgfrr,

      Please understand that, if these foods were triggers before surgery, they are still triggers. Migraine is not a headache but a neurological condition, and exposing yourself to attacks you may not feel, could still be dangerous.

      I am glad you are happy so far with your surgery and that you ended up better off instead of worse. Much can happen in the months and years yet to come, so please be vigilant and maintain your Migraine management. These just eliminated a few triggers, not your Migraine predisposition and ability to get them again. I’ve heard of some disasters so bad that headache specialists as a group right now are telling patients to NOT seek this surgery. Period.

      As a neuralgia/neuropathy patient, this is intimidating to me, and I’m glad to see that you’re well. I may end up needing a different type of decompression surgery, where the nerves are actually decompressed and teflon material put in to cushion them. This is totally different. Yours wasn’t really decompression because the nerves were cut, not decompressed, and that is a big problem a lot of people are having with it. Cutting can result in some serious problems down the road. That and many surgeons interested in finding more patients, are calling it a cure. Thank you for not doing that today, and encouraging others with your experience. ๐Ÿ™‚

      ~Ellen

    • #49870
      Profile photo of kitchenharpy
      kitchenharpy
      Participant

      There is a lot of subtle pressure by doctors to find triggers. While they certainly exist, maybe some patients subconsciously “find” some to please their docs and feel like they are making progress by identifying a cause.

    • #83924
      Profile photo of outgrazing
      outgrazing
      Participant

      WOW WOW WOW! Thank you all. Its taken me collapsing in a car driving and going to the emergency room to get here. Over the years I have been told to take more vertigo medicine, you must be an alcoholic, and a neurologist out loud laughing at me because I met with a vestibular physical therapist after 20 years of talking to doctors. *SIGH

      I found Kevin Crutchfield only because the physical therapist was able to do a couple tests and see that my issues were caused by the several concussions that I have gotten from doing crazy horse stuff. I drove back to my GP and screamed that I was not leaving until I got a referral for the best concussion specialist in the Washington DC – Baltimore area. A nurse that had a football player teen ran out with one.

      Kevin did the blocks and told me to schedule the surgery with Dr. Ducic but I have waited so I could do the research and see what my head would do. Everything is a science experiment to me. Well I type this with my ears ringing…again…sight bad….again and a migraine that is reminding me where I started with these things over 10 years ago. *SIGH

      I am blessed that I am within driving distance of Dr. Ducic and I have all of your stories that I can use to bring myself to make the appointment.

  • #48683
    Profile photo of mheadacherelief
    mheadacherelief
    Participant

    I have a similar story like your story but this incident happens on me not my daughter or son. I remembered that I lost my three years college life for this migraine problem. Now I only passed simple 12 standard . Though I lost my education life but now I am happy that I am not having problem with migraine at this moment.

  • #48865
    Profile photo of kitchenharpy
    kitchenharpy
    Participant

    My 23 year old daughter has her life back after having surgery done by Dr. Ducic at Georgetown. She was desperate and depressed after 7 years of chronic daily migraine. We live in Oregon, and are not wealthy, but every penny I spent getting us there was more than worth it. She had 3 nerve decompression surgeries, spaced 3-4 months apart, on the back of her neck, temples, and finally above her eyes. The interval between surgeries is necessary to be sure the surgery is helpful. As soon as I saw her in the recovery room after the first surgery, I knew I had done the right thing. She still loses 4 or 5 days a month due to hormonal fluctuation, but the difference is phenomenal. Many neurologists are negative about this surgery and I wonder if it involves some turf issues, as plastics docs usually perform the surgery. One myth is that if Botox doesn’t work to help the pain, then this surgery won’t work, which at least one reputable study has shown not to be the case. My daughter tried Botox three times to no avail (as well as every other treatment on your list), but the surgeries were very successful. She suffered serious harm from some of the other remedies, but not this one. Dr. Ducic and Georgetown have our undying appreciation and gratitude.

  • #49849
    Profile photo of Rhonda
    Rhonda
    Participant

    Hi all,

    Well another update. All is going well, I am off all migraine meds. I am taking a med to desensitize my nerves while I am healing since I had all 16 nerves done at once (I did them all because I paid out of pocket since my insurance did not cover it.). I should only take it for another month, then no head meds.

    I have just been shrinking, I have lost 30 pounds since Feb 10. Please understand, I have not tried to loose weight. My doctor and I believe it was a combination of my response to pain and my reactions to all the meds that made me gain so much. I have actually been eating more since surgery because I am not constantly nauseous. My sugars and blood pressure have also dropped.

    Just an FYI, my nerves were extremely malformed and clustered. Also one of my nerves in the back of my head had grown through my bone.

    I understand that this is not approved by the medical community, but, neither was Botox. Also, chiropractic was frowned upon when it first came out. Without experimental treatment, medicine would not find cures.

    • #49873
      Profile photo of kitchenharpy
      kitchenharpy
      Participant

      I am so glad to see you are doing well, Rgfurr. My daughter has great results also. While there is dissent among neurologists, this surgery is approved for treatment of intractable, chronic migraine (you’d better believe our Managed Care provider would never have paid for 3 surgeries if it wasn’t).

    • #82232
      Profile photo of owr25
      owr25
      Participant

      I saw Dr. Ducic too. But did not have the surgery. I did not want to have no feeling in my head all the time. Now I am thinking again about the surgery. What do you think? How did it make your head feel?

    • #82262
      Profile photo of rosie.smiles
      rosie.smiles
      Participant

      owr25,

      I had nerve decompression surgery in May 2016. The only nerves they actually removed were at my temples. The nerves above my eyes and at the back of my head were decompressed (the muscle removed from around the nerve and then the nerve was surrounded in fat to cushion it), and I had nose surgery too. By six months, my feeling was nearly 100% back, and I was 100% migraine free right after the surgery. I like this surgery because it seems to have less permanent side effects than the procedure where they actually remove a lot of nerves, and nerve decompression has a very high success rate; but that is just my take on it. Whatever the case, I wish you relief!

      Take care,
      ~rosie.smiles ๐Ÿ™‚

  • #49852
    Profile photo of Rhonda
    Rhonda
    Participant

    Ellen,

    You are right, excision is not decompression, perhaps we need a surgical category for this as well. Decompression was the closets description to choose.

    – Rhonda

  • #49855
    Profile photo of Rhonda
    Rhonda
    Participant

    Ok, I am stupid, I could have create a new chat, please disregard.

  • #49867
    Profile photo of kitchenharpy
    kitchenharpy
    Participant

    The mention of horrible outcomes dropped here and there seems vague and anonymous–the success stories are specific and posted by individuals with direct experience. But I don’t think anyone should make a decision not to have surgery (or to have it, for that matter) based on rumor, vague fears, or unsubstantiated stories. Do some digging and get as many real facts as you can.

    • #52469
      Profile photo of teenazless
      teenazless
      Participant

      I agree, kitchenharpy.

      I believe most neurologist are just uninformed regarding nerve decompression. It would help if the headache specialists could properly diagnose patients. After determining our daughter had a neuralgia and not migraine w/wo aura, the idea of nerve decompression made sense. She had two surgeries-one area was decopressed and another area had nerves excised.

      These surgeries are basically carpel tunnel surgery but on the nerves in your head.

      As far a nerve excision, it has been done for many years. It is not a new procedure. That is why it is important to find properly trained surgeons to do these procedures.

      By the way, our daughter just finished her sophomore year at Purdue University. This spring she was accepted into the Pharmacy program at Purdue. She also is receiving a scholastic scholarship. All this after barely attending school her Junior year of high school due to headpain. Nerve decompression surgery allowed her to go on with her life. As the others here, we are very thankful for the work Dr. Ducic does.

      Our website address has changed to http://www.mydaughtersheadache.com

  • #50515
    Profile photo of Rhonda
    Rhonda
    Participant

    Hi all,

    Another update. I am still doing well. My tingles from nerve pain are doing much better. I can now tune it out. I have actually started applying for jobs to go back to work. One thing that Ellen said was that foods that were triggers before surgery would still be triggers after. Well, I have introduced bananas and orange juice back to my diet with no issues. I guess it means everyone is different.

    Kitchen harpy, thank you for your comments.

    This surgery for me was a true blessing that I will always be thankful for. I went into surgery on February 10 with a full blown migraine and walked out of surgery with no pain and no headache since surgery. I really cannot believe it.

    – Rhonda

  • #58929
    Profile photo of Julia
    Julia
    Participant

    Did everyone who had the nerve decompression surgery have tender spots on the head? My son does not have the tender spots and wonders if he could still be a candidate for the surgery

    Julia

  • #58932
    Profile photo of teenazless
    teenazless
    Participant

    Hi,
    Getting an evaluation from a surgeon would be best.
    There is specific criteria that should be met to be considered for surgery.
    Has he responded at all to nerve blocks?
    I am on several headache and neuralgia forums. There are a lot of assumptions made without the expertise of a surgeon/doctor.
    Regarding so many treatments.

  • #58959
    Profile photo of Julia
    Julia
    Participant

    I have searched the internet today to try to find examples of adverse events from having nerves excised. I have not been able to find any negative stories. Can the people who know of adverse events please tell me what they are? What are the long term negative effects of nerve excision? We are planning to get an appointment with Dr. Ducic and want to go in with as much knowledge as possible in order to ask the right questions. My son says he thinks the nerve excision sounds like a miracle and he doesn’t understand why more people do not do it. He has been lying in a bed for months and desperately wants his life back.

    Julia

    • #59053
      Profile photo of Rhonda
      Rhonda
      Participant

      Hi Julia,

      Well I had my surgery Feb 10. I had 16 nerves excised. The only adverse or negative is that anywhere I have hair on my scalp (not including eyebrows) is forever numb. These are sensory nerves so everything moves, just numb to the touch. I can feel my ears. The advantages go on forever. I have lost over 100 pounds (I was bedridden for years) AND the best news of all, I have been hired for a new job back in the technical field and start after the new year. I cannot say enough about the advantages. The best option is to send in the form to Ducic. He called me on a Saturday after I submitted on a Friday. He is amazing.

      Good luck.
      If you want to talk more. respond and we will come up with a way to talk privately. I can answer many questions.

      -Rhonda

  • #58989
    Profile photo of kitchenharpy
    kitchenharpy
    Participant

    My daughter has had 3 of these surgeries (done by Dr. Ducic) and has had no long-term adverse effects from them. For a few months there was first tingling (like when a limb “fall asleep” and you get a “pins and needles” sensation when it wakes up) and then itching. She was tired for a few months. Now she is a full-time University student doing very well in her business major. No doctor is perfect, but I have dealt with many, many physicians in my time, and I would trust Dr. Ducic’s opinion to be expert, honest and objective.

  • #60378
    Profile photo of kitchenharpy
    kitchenharpy
    Participant

    For those who are interested, there is a good article about surgical approaches to migraine on the Healthcare Professionals Network site, with links to a recent article in the medical journal Plastic & Reconstructive Surgery. The journal article cites studies that show excellent success rates and minimal adverse events.

    • #60385
      Profile photo of teenazless
      teenazless
      Participant

      Kitchenhsrpy, Can you post the link? Thanks, Teena

  • #60571
    Profile photo of kitchenharpy
    kitchenharpy
    Participant
  • #60996
    Profile photo of Alison
    Alison
    Participant

    I have had two nerve de compressions, one above my eyes and one on the back of my head.
    Neither worked and the right hand side of my head is permanently painful and tender. I felt better for a few months while the numbness lasted, but as the nerves recovered the migraines came back.
    This was in Berlin with a Dr Meuhlberger.

    Could you tell me please Rhonda where Dr Ducic practises. I have daily migraine and would have further operations if they helped.

    Alison

  • #61423
    Profile photo of Katie M. Golden
    Katie M. Golden
    Moderator

    @felix16,
    Dr. Ducic is a plastic surgeon at Georgetown University Hospital in DC. He was one of the original pioneers in nerve decompression surgery. Before you meet with him, they require that you see one of the neurologists in their headache department who will perform several nerve blocks around the suspected root of your pain. If you respond well to the nerve blocks, then you are likely a candidate for the surgery. I went through this process at Georgetown, but it was determined the surgery would not help me. Dr. Ducic and the others in the headache department are amazing!

    -Katie
    Migraine.com Moderator

  • #61425
    Profile photo of teenazless
    teenazless
    Participant

    Hi,
    Dr. Ducic is in private practice. I don’t think he practices at
    Georgetown at this time. Drducicplasticsurgery.com has his contact information

  • #61429
    Profile photo of Katie M. Golden
    Katie M. Golden
    Moderator

    @teenazless,
    Thanks for correcting that! Looks like he left Georgetown last year and is now at George Washington.
    It’s been years since I tried to qualify for the surgery so I didn’t realize he had left.
    Thanks!
    -Katie

  • #61453
    Profile photo of kitchenharpy
    kitchenharpy
    Participant

    If you are from out of the area (we are from Oregon), Dr. Ducic will review your medical records and determine if you are a candidate. Peripheral nerve blocks had been of some temporary help to my daughter, while Botox was not at all helpful.

  • #62295
    Profile photo of 4mtnlvrs
    4mtnlvrs
    Participant

    I am scheduled for nerve release surgery with Dr. Ducic next week. I am really excited to finally be getting the surgery but starting to get nervous about the post-surgery recovery period. Can anyone who’s had the surgery provide any insights / tips regarding the healing process? Thank you ๐Ÿ™‚

  • #62307
    Profile photo of teenazless
    teenazless
    Participant

    What area is being addressed 4mtnlvrs?

  • #62310
    Profile photo of 4mtnlvrs
    4mtnlvrs
    Participant

    The back of my head. Although Dr Ducic did say it could be the first of 2 or 3 surgeries.

  • #62311
    Profile photo of kitchenharpy
    kitchenharpy
    Participant

    Try not to fly for a couple of days after surgery, if possible. The wrap-around cold packs for your head are very helpful (get an extra cold pack for the sleeve so you can freeze one while you use another)–you may need this even more after the numbness from surgery wears off. Getting a hotel room with a fridge is a good move. Expect to be tired for a few weeks–be nice to yourself!!! The itching will last for a while and drive you a little crazy, but it’s worth it.

  • #62314
    Profile photo of 4mtnlvrs
    4mtnlvrs
    Participant

    Thank you so much, really appreciate the advice. Just ordered the cold packs. I am wondering… did you have problems with lying your head down to sleep after the surgery? Dr Ducic suggested laying on 4 or 5 pillows but I usually can’t lay on more than 1 because it kills my neck. Would truly appreciate any suggestions. Thanks!

  • #63083
    Profile photo of cdfjones
    cdfjones
    Participant

    I am strongly considering dr ducic. I am worried about recovery and pain. Can anyone walk me through the after surgery process. Aldo does insurance cover any part snd if not how much yo get all 4 areas done. I need my life back. Thanks.

    • #63086
      Profile photo of teenazless
      teenazless
      Participant

      cdfjones,
      Regarding insurance, i really depends on your policy and diagnostic coding. not all policies within a company will cover the procedures. Fortunately, both of my daughters surgeries were covered with our UHC poilcy. We do carry a policy that is one of the highest tiers and offers good coverage. I think Dr. Ducic could better advice you on recovery when addressing more than one sites at a time. My daughters recovery was fairly quick-back to normal activity with in a week. She did have residual bruising and swelling after that but it was barely noticeable. Her first surgery was the brow area and the second surgery was the temple area. Are you on any of the Facebook pages for On or nerve decompression surgery?
      Teena

  • #63134
    Profile photo of cdfjones
    cdfjones
    Participant

    I am not, was not aware but I will check into it. Thx teena

  • #63191
    Profile photo of SBTome
    SBTome
    Participant

    Hi! I had the nerve decompression surgery on April 2, 2015 (about 5 weeks ago). So far I’m feeling great, I have the tingling and the tenderness, but I have very high hopes that this was the solution! I’ve had chronic daily migraines/headaches for 13 years (I’m only 33), and I feel like I’d tried it all. I had my surgery in Houston with Dr. Perry, it’s been a great experience. I’d love to hear other people’s stories too. It seems like everyone here is going to a doctor in DC and I just wanted to let y’all know there was a great surgeon in Houston too. Thanks and I hope everyone finds some relief or continues feeling well!

  • #63194
    Profile photo of cdfjones
    cdfjones
    Participant

    What area did you have decompressed?

  • #63197
    Profile photo of SBTome
    SBTome
    Participant

    I had the ones on the back of my head worked on.

  • #63272
    Profile photo of JBWEBB
    JBWEBB
    Participant

    My husband just had his surgery the first week in April in Houston with Dr. Echo. He had 3 migraines since – and then he had one on Sunday and one today. Very depressing. He was having them 24/7 for over a year. He has had them since teen age years and he is now 60. They escalated severely about three years ago for some reason. botox worked, just a little. relieved the constant pain, just a bit. Now his migraines are not as bad – from about a 6 to 7 to about a 4. But still, it’s very depressing that they might be returning. Maybe it’s just a bad week for him. We do need to see about the nasal surgery. He had the decompression done on the forehead and the back of the head. He was very numb but now it seems feeling is starting to return. He is so down right now because of the two this week. He wants to go back to work and get on with his life, but that doesn’t seem to be in the cards. Dr. Echo was great. I do highly recommend him. He is very professional and seems very talented without any narcissism. Very good bed side manner. My only complaint is it is hard to get through to his nurse.

  • #63515
    Profile photo of cdfjones
    cdfjones
    Participant

    How long are you all having to stay on pain med’s?

  • #64580
    Profile photo of Rhonda
    Rhonda
    Participant

    Hi 23ajbyd,
    sometimes nerve decompression does not work for everyone. Dr Ducic warned me in advance that his experience is ~80% success rate. This is also based on the screening the doc does. I was so sick. I decided to completely remove my nerves and skip the decompression step. I head an amazing recovery. I had 16 nerves removed all around my entire head. No bruising, no pain at all, no itching, and just the tingling( like when your foot goes to sleep and starts to wake up).
    You doc should have explained that IF it does not work, excision may be the next step. Dr Ducic has created a special tip to put at the end of the nerves to prevent them growing back. If they grow back, there are concerns that they will grow back in a bad way. Ensure your doc addresses that before you decide. I Wales into surgery in extreme pain. And not had any migraines since that day on Jan 10, 2014. I have my life back and was able to start interviewing for jobs 6 months late (please note I was bedridden for a few years before the surgery due to 24×7 extreme pain)

    Please reference my next post for details for Dr. Ducic.

    -Rhonda

  • #64583
    Profile photo of Rhonda
    Rhonda
    Participant

    Hi all,

    Dr Ivica Ducic is in the Washington, D.C. area. He was with Georgetoen University, but has opened his new office to concentrate on our nerve issues. If you google “Ducic Washington, D.C.”. You will find him. His webpage isn’t fancy but it does have lots for you to review.

    He does NOT require you to see a doctor in his office. I am in North Carolina and the first and only time I saw him in person was at 6:00 am just before my surgery. This was because i was completely comfortable with his ability. He also answered all my question and concerns before the surgery via emails and phone calls. He always has people travelling to see him and makes allowances for that. He does require documentation from you personal headache specialist and tests like MRIs to ensure you have eliminated other illnesses.

    I was able to ride 5 hours in the car home the day after my surgery. If you must fly, ask dr Ducic how long you should wait due to the pressure changes during flights. You can read the updates of my recovery in the history above.

    Make sure you follow directions on cleaning and removing the stitches. Also arrange who will remove the stitches in advance. Because I did 16 nerves around my entire head remived, it took an orthopedic surgeon nurse 1.5 hours to remove all the stitches. But even with having a lot of incisions, I still walked out of surgery a new person. This is the best thing I have ever done and I wish I had done it years earlier.

    Just a bit of info. My headache neurologist said ” if you do the surgery, I will not be your doctor anymore because you will be worse after than before the sugery.” I was devasted I had this doctor for the 4 years while I fought the constant headaches. I decided to do it anyway…..I am so glad. I spent over $300k over 4-5 years on co-pays, meds, Botox, etc. I payed $26,500 for the surgery center out of pocket for my surgery (a family member took money from his retirement). You do the math. My health was not going to make my doctor money. My sickness would. Do the research and make an informed personal choice. Listen to all the opinions, good and bad, and decide. Be sure to listen to the bad and decide to accept if the bad really does happen. To me, being numb and itching a little was very little compromise to get my life back. I was lucky no itching at all…just numb because I removed the sensory nerves., now I find that numb feeling is really not a big deal..I don’t care if my hair is numb. But that was a decision I had to make for myself. Get second opinions and talk as much as you can to the people that have actually had the surgery. They know better than any book, doctor or research paper. They experienced every second of being sick and every second of the recovery. For me the recovery was a walk in the park compared to the pain and sickness. Also, choose the best surgeon for skill and patient reviews. Traveling a little further may be daunting and a little more expensive, but may be the difference between recovery and continued illness.

    – Rhonda

  • #64754
    Profile photo of Rouge4815
    Rouge4815
    Participant

    Hello All,

    I have suffered with migraine headaches off and on most of my adult life, however it seems that they progressively became more frequent as time passed. I was diagnosed in June of 2007 with Multiple Sclerosis. Over the years, my neurologist prescribed every preventative and acute migraine treatment prescriptions available in order to find something that would provide me some relief. Some would work for a while and then would no longer help. I had Botox injections every three (3) months for 4 years and those were beginning to wear off before I was due my next round of injections. I tried herbal combination therapies without any relief. I had acupuncture therapy, physical therapy, and massage therapy. All were a temporary fix to a chronic problem. I had Nasal surgery for a deviated septum so I knew that was probably not a cause to these frequent, at least 2 to 3 times a week, migraines. My migraines were occurring most times right above my left eye.

    A friend told me about Dr. Mark Khorsandi at the Migraine Relief Center in Houston,Texas, that one of his clients told him about that performed Surgical Nerve decompression for migraines. I, like most everyone now days, turned to the internet to explore this new information I had received. I read all about the therapies that were offered at the clinic and the prior patient testimonies and decided to pick up the phone and make an appointment. I was tired of not living, just being in pain in the bed most the time with a migraine. I was able to get an appointment right away and made the 5 hour drive from Louisiana to Houston. This trip turned out to change my life.

    I brought all my MRI and recent medical information with me to the appointment. I unlike some people did not tell my neurologist I was seeking this option. My appointment was very detailed, Dr. Khorsandi spent a lot of time discussing my prior and current treatments which meant a lot to my husband and I. While there a nerve block was performed over the area of my left eye and I had immediate relief. At the end of the consultation it was decided that my best treatment option was nerve decompression surgery.

    Since we were from out of State and I was wanting relief so badly, Dr. Khorsandi and his staff worked to get me into his schedule for the following day. So on 4/8/2015 I had outpatient nerve decompression surgery, I returned to our hotel after surgery, had no pain and no headache. I was amazed at how I felt. I did the ice packs throughout the night and returned to his office the following morning on our way back to Louisiana. He removed the bandages and provided my post op instructions. The trip back home was great, no pain and no headache.

    For days and weeks following my surgery it was like I was sitting waiting to have a headache, but thankfully, have not had a migraine or any headache since that day. Next week will be 3 months since surgery and I feel great. I had also been diagnosed with fibromyalgia and would hurt all the time. Since my surgery, that pain has diminished completely, I truly think that the generalized pain I was experiencing was referred pain from the migraines.

    My husband is not a fan of surgery of any kind, however, when we had the consultation with Dr. Khorsandi he was positive that this was the best option for me and had the utmost confidence in Dr. Khorsandi and his staff. Today, he tells everyone that this has been the best thing for me and our life.

    I have since visited my neurologist, he is thrilled that I have relief. I am no longer on any medications for headaches or fibromyalgia and my blood pressure medications have been lowered (hoping eventually to get off of that too!). In the last 8 years, for the first time I am taking hardly any medication. I do have the tingling and still a little numbness but most feeling has returned. Even if the feeling had not returned, I can handle the numbness over a migraine any day!

    I would recommend anyone that has suffered with migraines to seek out surgical options. I have recommended many friends to do their research and provided information to contact Dr. Khorsandi in Houston. A quick flight or even 5 to 8 hour drive is well worth the relief I have experienced. I am enjoying life again.

    We all know that nothing is 100%, not even medications, I believe that if there is a solution to a problem….why waste time on a temporary fix with medications. Do the research and make an informed decision. Dr. Khorsandi’s clinic has a website with a lot of information to assist in making an informed decision, and a monthly newsletter which is very informative, themigrainereliefcenter.com

  • #64760
    Profile photo of Katie M. Golden
    Katie M. Golden
    Moderator

    Rogue- thans so much for giving us details on your surgery. I’m so glad this has worked for you!
    -Katie

  • #65417
    Profile photo of lagirlmigraine
    lagirlmigraine
    Participant

    First of all, I just want to say how thankful I am to have found this forum with so much information and kind people willing to help others.

    BRIEF history- I am a 22 y/o F from LA. After having mono & trying some strong prescription medicines I developed a headache that never went away. That was Apr ’13, 27 months ago. Dec ’13 I had to drop out of university. Since then I have barely been able to leave the house except for doctors appts & hospital visits (which are often). I have tried EVERYTHING- acupuncture, neuro/biofeedback, medicinal leeches, botox (2x, 0% relief), transnasal nerve blocks (3x, gave me 60% relief for a few hours), almost every pill available (I finally gave in to trying Topamax a few weeks ago & feel lousy on it so far).

    ANYWAY. I found out about this surgery when I was desperately researching for a possible “cure” last fall and came across a Texas girl who was fixed by a Dr Bardia Amirlak in Dallas. I messaged her, she gave me lots of information and told me how happy she was to have he life back. When I optimistically mentioned this surgery to my headache specialist (a top doc in the state), he immediately shot it down (there definitely is a turf war) and i was discouraged, and forgot about it until I came across a few more miracle stories this month.

    I keep hearing about this DR Ducic and I feel like this could be a huge answer for me. I never saw pills as an answer. I think for someone who has chronic headaches 15x a month, or someone who is going to grow out of them, pills are the way to go. But i have a VERY sensitive system. Pills are a big reason why I got a headache in the first place, and for me I only see them as band-aids (with side effects). I’m happy to hear that people have gotten major relief from DR Ducic. Does anyone know of any doctors performing this surgery on the west coast? I see above that someone wrote about Dr Khorsandi who is closer. It is difficult enough for me to travel 30min to a doctors office, I can’t imagine flying 5+ hours, getting surgery, and having to stay there for at least a week (luckily I could stay with family, or perhaps a hotel. But having anxiety/agoraphobia, it would be very scary to be away from my room).

    I would appreciate any advice, input, and support. Thank you all in advance.

  • #65420
    Profile photo of teenazless
    teenazless
    Participant

    Lagirlmigraine,
    My daughter got her life life after two surgeries with Dr. Ducic. Like you she tried numberous medications, DHE, biofeedback, acupuncture & nerve blocks just to name a few things. She got limited relief from nerve blocks-just a few hours. She was treated by one of the hop headache doctors at Northwestern in Chicago. She was told he was options of options and she would need to learn to live in pain. She was only 16 years old! We read about about nerve decompression surgery and the rest is history. She opted for the surgery without any support from any of her doctors. Her story is at http://www.mydaughtersheadache.com.
    There is a doctor, Dr. Peled, in San Fransisco. He and Dr. Ducic studied Peripheral Nerve surgeries at the Dellon institute. Their philosophies regarding these surgeris are very similar. There is also a Dr. Guyuron doing these surgeries, He also address the sinus area.
    It is most important to find a surgeon with experience and peripheral nerve training. Surprisingly, these procedures are typically done by plastic surgeons.
    If you like, please contact me through my daughters website. I can share my contact information from that site.
    I hope yo find relief!
    Teena

  • #65423
    Profile photo of lagirlmigraine
    lagirlmigraine
    Participant

    Teena, so grateful to have (re-)stumbled upon your wonderful, informative website this week. It inspired me to do more research on this surgery again. As I have had this awful headache for so long now, it is so easy to feel completely hopeless. Especially when every treatment leaves me feeling worse instead of better. Reading your daughter’s amazing success story, among others, has given me a glimpse of hope.

    Thank you for all of the above information. Traveling to DR Peled in SF would be MUCH easier for me (my mom could drive me which takes flying out of the picture). It sounds promising that DR Peled and Ducic studied together and have similar practices.. my only concern is that if I do end up doing this surgery, I want to make sure I have it done by the best in the business, to ensure the highest success rate possible. I have not heard so much about Dr Peled (there is also not as much information on him), but I will do some more research. If there is not much of a difference between his surgery/practice and Dr Ducic’s, then I will definitely see Dr Peled. A 6 hour drive versus a 6 hour flight is a big difference (especially when recovery is involved.. it would be easier on my mind to know that I’m closer to home).

    Thank you again. Once your daughter became well it could’ve been easy for you and your daughter to completely sign off from all of these forums but instead you are still on here, helping others in pain. Thank you.

  • #68582
    Profile photo of paulette
    paulette
    Participant

    Im have front side and back of both sides nov 3 cant wait little nervous about this because it is costly and what might not work but as of now there isnt any other option for me I have tried every thing ng i have found and nothing i have bad migraines day and night 24/7 all seasons and all types hormonal stress light sound. smell and just because im having mine done in boston by a plastic surgeon i have had many neurologist and many opinions i tried all of them i was seeing one at new englands “best” not really the head of headache center in new england for migraines and all types of headaches i told him that i went for a consultation in boston he knew the dr straight off threw his pen on the desk and said if you continue to go to that dr we are done here!i of course said oh no i was just seeing what it was about he gave a rant for about 20 minutes about how bad this surgery is and there is no proof or enough studies on it also he had a patient that it hadnt worked for and she was left deformed she had some indentation on her forehead sooo longstory long after 6 months he said there isnt any other medications for me to try and he said im one of his most difficult cased meanwhile i WAS still seeing the plastic surgeon behind his back because with such bad pain all options should be open thank goodness i did because it takes a while to be aproved for such a procedure and that dr never helped me so im so glad now i have no quality of life and the case that the neurologist spoke about was the only case i have heard of that went bad

  • #68585
    Profile photo of teenazless
    teenazless
    Participant

    It is very important to use a surgeon with experience and peripheral nerve training. I would ask what doctor he was referring to. The team that took care of our daughter at Northwestern Memorial was happy she found relief. However, the team at the headache clinic had no interest in knowing about her surgery and recovery.

  • #68591
    Profile photo of kitchenharpy
    kitchenharpy
    Participant

    For some reason, headache clinics that do not do this surgery don’t seem to have the slightest interest in it. Either they don’t bother to really look into it or, for the cynics among us, they don’t see any profit in it. And there is profit in migraine treatment. My daughter spent two very expensive weeks at an in-patient program in Michigan–which not only was no help, but it seemed they made people they couldn’t help feel like it was their own fault. There are some great plastic surgeons out there, including Dr. Ducic but not only him–do your due diligence. If they are any good, they will be honest about your chances of success. My daughter had her last of 3 surgeries two years ago and it was the best thing we ever could have done. She is an Accounting major at a good business school and has a 3.9 GPA. Before the surgeries, she was lying in a dark room most of the time. She still has hormonal-related migraines about 20% of the month–but that 80% improvement gave her a life.

  • #68597
    Profile photo of paulette
    paulette
    Participant

    the plastic surgeon im seeing is a very well respected surgeon i looked up any thing i could and couldnt find any un happy people he has 100 happy patients so far with this procedure he gave me 9p % success he meets with other Plastic surgeons that do this in usa once a month he also has neen ov tv with patients that seem happy as well

  • #68600
    Profile photo of paulette
    paulette
    Participant

    the plastic surgeon im seeing is a very well respected surgeon i looked up any thing i could and couldnt find any un happy people he has 100 happy patients so far with this procedure he gave me 90% success he meets with other Plastic surgeons that do this in usa once a month he also has neen ov tv with patients that seem happy as well im going to try and do a yputune video as well b4 and after

  • #68603
    Profile photo of teenazless
    teenazless
    Participant

    I totally agree, kitchenharpy. Our daughter was treated at Diamond Headache Clinic. They only offered medication and did not search for a cause for her constant pain. The staff there has since changed. There is a pain management doctor on staff. I would assume that nerve blocks are now an option. They kept all treatment in house. They had No interest in helping my daughter function. The medications they gave her aggravated her pain and the side effects were awful.

  • #68609
    Profile photo of cdfjones
    cdfjones
    Participant

    Is it allowed to ask about approximate out of pocket cost for migraine decompression surgery? I have both Caremart and BCBS Federal insurance. I would probably be looking at 3 sites, occipital, temples and eyebrows but I gather they would be taken 1 surgery at a time. I recently had a second occipital ablation and this time it worked. The area is numb with no pain. However, the temples, top of the head, behind the eye pain as well as increased vertigo and nausea and neck pain is what I’m dealing with now. (Still). I’m on my 6th year of chronic pain and am really wearing down.

  • #68816
    Profile photo of paulette
    paulette
    Participant

    Please excuse my misspelled words my fingers are obviously to big for my keyboard,I did pay in advance 15 upfront insurance covers nothing for me i have harvard pilgrim its the best in new england,although I’ve been denied they have approved every thing I have needed in the past the dr said they dont do sinuses with the other trigger points unless they are bad so a few days ago thedr called and said they were bad and needed to be done the same time this was found with a 3D ct scan.I am doing b4 and after youtube video so people like me can see results from someone undergoing this procedure I’m have 6 sites done on tuesday morning i will post on youtube Wednesday

    • #68954
      Profile photo of Adriana
      Adriana
      Participant

      Paulette please look into Blue Cross Blue Shield of MA, my husbands company is based out of Taunton and we had HPH but switched over to Blue Cross Blue Shield of MA Sept 1 and my nerve decompressiom sirheru was approved in less than 24 hrs! My surgery was 10/13

      Today I am 22 days post Decompression surgery and could not be happier. Im a little afraid reading posts from those who say they where pain free during a “honeymoon” phase but I am taking it day by day.

      I had my procesure in Chicago at Northwestern Memorial. Dr. Mohammed Alghoul waa my surgeon! He is amazing and I could not have asked for a better doctor. I stumbled across this procedure after reading and article in our newspaper and I am sp grateful for this opportunity.

      If anyone has questions please feel free to ask i would be happy to answer what I can 😊 Also i began a blog following me through this journey so pleaae feel free to take a look wew.themigrainelife.com

  • #68819
    Profile photo of cdfjones
    cdfjones
    Participant

    I will keep you in my prayers. I am exploring my tmj issues as I found a neuromuscular dentist that swears he has helped many migraine patients find relief

  • #68840
    Profile photo of paulette
    paulette
    Participant

    yes i also have that and grind the dr says this should help this as well thanx for prayers i will neef them

  • #68867
    Profile photo of cdfjones
    cdfjones
    Participant

    I will try to find u on utube. God bless.

  • #68984
    Profile photo of Newdancerco
    Newdancerco
    Participant

    I’ve had both decompression and excision surgeries, they give different results but both work if done right. Dr. Afifi at UW-Madison did both of mine, and I am considered a success (I went from daily 8+ pain to usually not passing 5 and most days staying at 2-3). Not perfect, but a huge difference nonetheless.
    I ended up doing them because my neurologist gave up on treating me. She said that neurology didn’t think the procedure worked but plastic surgeons did, and had done studies on it, so give it a shot. (Neurology hadn’t done the studies, and it seems different kinds of doctors don’t trust each other’s studies as much as their own specialty’s versions of the same studies.)
    The first time was a true decompression procedure across the back of the head, and after almost 2 years when a migraine tries to hover there I can feel it, but it doesn’t hurt. It also doesn’t tingle, etc.
    The second procedure included both decompression and cutting nerves in my temples. The cut nerves areas DO tingle, especially when touched during a migraine. The tingling happens whenever those nerves want to fire (ie, hurt) but can’t, so the worse the migraine, the worse the tingling, but it never gets bad. (Bad as compared to the feeling of blood coming back into fingers/toes when they’ve fallen asleep.)

    It doesn’t work for everyone – the testing was critical in determining if I was a good candidate, and the first procedure was more effective than the second. But both helped, and I’d do either again in a second.

    • #68990
      Profile photo of Adriana
      Adriana
      Participant

      Funny, when I contacted my neurologist for a referral t try to get into see Dr. Alghoul he had not heard of the procedure. To date he has referred over 15 people to my surgeon for consultation.

  • #68987
    Profile photo of Adriana
    Adriana
    Participant

    Let’s try this again! I had typos previously so hopefully they are fixed now!

    (@Paulette please look into Blue Cross Blue Shield of MA, my husbands company is based out of Taunton and we had HPH but switched over to Blue Cross Blue Shield of MA Sept 1 and my nerve decompressiom surgery was approved in less than 24 hrs! My surgery was 10/13)

    Today I am 23 days post Decompression surgery and could not be happier. Im a little afraid reading posts from those who say they where pain free during a โ€œhoneymoonโ€ phase but I am taking it day by day.

    I had my procedure in Chicago at Northwestern Memorial. Dr. Mohammed Alghoul was my surgeon! He is amazing and I could not have asked for a better doctor. I stumbled across this procedure after reading and article in our newspaper and I am so grateful for this opportunity.

    If anyone has questions please feel free to ask i would be happy to answer what I can 😊 Also i began a blog following me through this journey so pleaae feel free to take a look http://www.themigrainelife.com

  • #69098
    Profile photo of paulette
    paulette
    Participant

    Adriana to late i already had it done Tuesday in boston cash 15k so far so good i look like i had my but kicked alover the worst for me was haing all the wraps and packing up my nose no sleep for three days i didnt even lean my head on anything because of how weird it felt

  • #69101
    Profile photo of Adriana
    Adriana
    Participant

    Im so glad you where able to have done.

    I did mot have the inside of my nose so I can only imagine how that feels.

    The back of my head still bothers me Im waiting for the day it doesnt bc its uncomfortable to sleep. But so far everything has gone well. I hope the same goes for you 😊

  • #69122
    Profile photo of paulette
    paulette
    Participant

    i have done a youtube video b4 and after there are 3 so far nerve decompression surgery for migraines

  • #69242
    Profile photo of paulette
    paulette
    Participant

    adriana the back of my head is killing me as well i have 3 huge zippers on the back of my head one zipper on each temple eyes just feel tired all the time i should not say killing me because its not a painful surgery its uncomfortable ive had quite a few major surgeries and this is very uncomfortable i almost feel like there is some type of vice squeezing my head tight like a wine barrel and its strapping thats arund it i took pain meds the first night then i realized it wasnt doing anything for my discomfort

    • #69245
      Profile photo of Adriana
      Adriana
      Participant

      @paulette Im so so sorry!

      I remember that even now almost a month post surgery the bacl of my head kills and my temples must be bruised inside or something because they hurt. What your feelimg is normal I took my pain meds for 2 weeks before I was able to stop them. My eyes felt the same esp when looking at my phone or laptop. Stay strong what you are feeling is totally normal, just keep telling yourself its goong to be well worth with it in the end…

      Feel better

  • #69248
    Profile photo of Adriana
    Adriana
    Participant

    I had my first migraine after 25 days Sunday. I definitely was not ready for it. I know the dr’s said a few here and there may occur but emotionally I lost it I was in tears so afraid the migraines where coming back with a vengeance ๐Ÿ™ so fsr thats the only one and it only lasted 4-5 hours bt its my only one so far!

  • #69359

    Hi Adriana,
    I’m glad you are feeling better! It can be traumatic after a migraine break, to have a migraine again! Recently someone here wrote about that actually: https://migraine.com/blog/other-side-break/
    Anyway, I am glad you are doing better overall!
    Be well,
    Lisa

  • #69608
    Profile photo of paulette
    paulette
    Participant

    well i have had a 3 day hormonal migraine it was very stubborn and strong alo i woke sunday night at 2. am with another and ฤบast night and today guess there is no hon ymoon fase for me im hoping it goes away soon

  • #69620
    Profile photo of Adriana
    Adriana
    Participant

    Keep positive Paulette.

    If you where like me and suffered day to day with migraines even just a few days of relief is better than none!!!

    Hang in there

  • #69806
    Profile photo of paulette
    paulette
    Participant

    yes you are right,everyday i was awakened by a violent migraine. every day all day migraines its huge not to have them everyda ive just been so worried it might not work

    • #69812
      Profile photo of Adriana
      Adriana
      Participant

      Yeah thats the scariest part! That we are so used to our lives with migraines that we dont know how to live without them.

      Im still learning!

      But I def cherish the headache free days!! ๐Ÿ™‚ hope your doing well Paulette

  • #70277
    Profile photo of paulette
    paulette
    Participant

    well i have had about 6 migraines ugh hoping it dont get much worse ive got a question have you been having shingles type burning on your face? my face has been burning mostly at night and the back of my head stil squishy with fluid please let me know jow you have been as far as discomfort and such thanks

    • #70286
      Profile photo of Adriana
      Adriana
      Participant

      Oh Paulette I am so sorry! BUT 6 is probably a little better than before (I Hope!) I havent had anything near shingles on my face, a few little zaps here and there but that is it. I def do not have fluid in the back of my head and my dr has checked it 3x since my surgery and said the area is healed well.

      Its still numb for me back there, but def no fluid and my hair is growing back which my dr said ads to the discomfort. Other than that Im good. What has your dr told you???

  • #71510
    Profile photo of paulette
    paulette
    Participant

    i now am having migraines most days they wake me up from sound sleep but they are not as intense as before maybe at a 5 at most but a strong 5 i am not getting migraines from my neck area or from smells so far only on the right side temple the healing of this procedure is very anoying i have burning shingles pain on my eyelids for head and top of my head followed by the typical itch that wont go away i am taking lyrica its helping but not fully has anyone gone through this that can relate all input welcomed

  • #71513
    Profile photo of Rhonda
    Rhonda
    Participant

    Hi Paulette,

    Can I ask a few questions:
    1. Who did your surgery?
    2. Did you do the decompression or did you have the nerves removed?
    3. Can you tell me which nerves were worked on? (Forehead, temple, above ears, back of the head, etc)
    4. How long ago was your surgery

    I had my nerves removed. I had no itching. I did have some burning (like pins and needles), but not till months later and it was just distracting. I could not take lyrica due to side effects, so my doc used plain old opiates, which worked fine while the nerves healed.

    – Rhonda

  • #71543
    Profile photo of Adriana
    Adriana
    Participant

    Oh no Paulette!!! I hoped the surgery would have gone better for you. I actually have a follow-up today with my surgeon and I am going to ask him to do the nerves in the nose if he finds it appropriate. My migraines dont go further than a 5 either but I have also only had a handful other than thiese past 2 weeks while Ive battled a bad cold. My temples hurt for a while as well but the doctor said it was healing. I guess there is good and bad in all surgeries! I hope at least you feel a little better!!!

    @rhonda those questions are for Paulette correct???

  • #74177
    Profile photo of makelemonade
    makelemonade
    Participant

    @rhonda, the $26,500

    Was this everything included (hospital stay, surgery, specialists, etc.)?

  • #74180
    Profile photo of Rhonda
    Rhonda
    Participant

    Hi, the $26,500 included everything for the surgery center. Mine was not performed at the core hospital which would probably be much more expensive. I did have post op melds I had to get at a local pharmacy. This amount did not include the doctor’s surgical fees. That would depend on the Doctor you choose. But everything else was included.

  • #74189
    Profile photo of makelemonade
    makelemonade
    Participant

    @rhonda, after everything was said and done, what was the total cost? How are you doing today?

  • #74216
    Profile photo of Rhonda
    Rhonda
    Participant

    @makelemonade the medicines were not much so, the total was $26,500.

  • #74243
    Profile photo of makelemonade
    makelemonade
    Participant

    @rhonda Has the surgery still been effective two years on? Thanks for all of the responses!

  • #75007
    Profile photo of OrangeAlert
    OrangeAlert
    Participant

    Hello. I ask for opinions and comments on my situation because I am in a bad place, and need help understanding things from others. I flew to a suburb of Cleveland, Ohio to have Nerve Decompression Surgery by Dr. Guyuron. My comments are in no way meant to suggest any wrongdoing or failure about my surgeon. I am 4 weeks out, and since Nerve Decompression Surgery, I have only had increased pain: migraine and surgical. In addition to Decompression, I think the nerves in my eyebrows were removed ot cut out. Four days after surgery a large portion of numbness went away, and I found myself at a 200% increase in pain (by that I mean double the pain of pre-surgery. Now it is abot a 50% increase. Let me be clear that by “pain” I am not speaking to the tingly, itchy, distracting nerve activity. For the first 2 weeks, my entire eyebrows and the area around them was the worst. I had mini icepicks of intense migraine pain. I also had different pain: searing burning nerve pain. The eyebrows searing nerve pain subsided pretty well, the temples then started burning. Back to the eyebrows: The migraine (I think) pain is still constant, fluctuating in intensity. I was and am taking generic Vicodin and alternating triptans into the mix. Aftet 20 years, 6 months ago triptans stopped working and gave me rebound headackes, hence the analgesic pain control. I used to and am again now pressing hard into my eyebrows where the pain is. Ice no longer helps. I will stop here and hope for comments. I have had 4 non-migraine surgeries, and have no history of pain or problems with surgery. Did anyone have just increased pain? Did it eventually subside? Was surgery with someone else necessary? How long did it take to subside. This pain can bring me to tears and my morale is bad. The Surgeon has supported me which has resulted in several Toradol shots, 1 ER visit, Medrol packs, narcotics. All have helped. My local doctor has supplied the narcotics. I do not have any addiction problems. He is not stingy, but I actually need enough to dose and treat about 3 times in 24 hours. I have enough for 8 hrs, and dip into a lower dose for the next 8 hours. Then I am miserable, sleep, or can’t sleep. This works, but a dose increase is not in the plan of my Doctor, and I don’t want to be on it 24 hours a day either. We are trying Botox next. Sorry long and disjointed. Thank you.

  • #75289
    Profile photo of makelemonade
    makelemonade
    Participant

    @rhonda

    A few more questions!

    1. Do you still have relief 2 years on?
    2. If you don’t mind, what migraine medications were you on before that you were able to come off of?
    3. Is the permanent numbness tolerable?
    4. Would you do this again if you could go back?

    I take antidepressants and wonder if I just went for this surgery if I would even have anxiety or depression. I keep thinking maybe I could have the results you have if I have this surgery.

  • #75364
    Profile photo of Rhonda
    Rhonda
    Participant

    Hi make lemonade,

    Answers to your questions:

    1. Do you still have relief 2 years on?
    Yes, I am doing great. My eyebrows bother me in bright lights, but that is all. I am planning to make a trip to my surgeon to see if this can be fixed too.
    2. If you donโ€™t mind, what migraine medications were you on before that you were able to come off of? I was using nerve blocks every 2 weeks and Botox. As well as lots of nausea medicine. I really do not take much of anything now.
    3. Is the permanent numbness tolerable? The numbness felt weird for a couple of days but now it is like my security blanket that the pain will not come back.
    4. Would you do this again if you could go back? YES! YES! YES! I wish I had not waited years for my neurologist to experiment on me with drugs whose side effects that made me horribly sick and gain over 100 lbs. One drug called DHE, damaged my heart permanently.

    So do I mind having a numb head rather than excruciating pain and no medicines with side effects…..YES!!!!!!!!!!

    Every surgeon and every surgery is different. If you choose a good surgeon who will screen you to ensure you are a good candidate, then you should consider it. BUT, you must accept that it may not work for everyone. That is a decision only you can make.

    In reference to your anxiety and depression, the surgery will not solve that problem. But if you can alleviate the pain, you can then concentrate on working with a phsyciatrist to resolve that.

    Thank you,
    Rhonda

  • #75409
    Profile photo of makelemonade
    makelemonade
    Participant

    @rhonda What exactly does it feel like to have I numb skull? I want to opt for full excision as well, but am scared of that feeling being unbearable (but then again so are migraines right?)

  • #75535
    Profile photo of Rhonda
    Rhonda
    Participant

    @makelemonade. Being numb feels weird at first, but your body goes ” ah, ok, this is the new normal”. And then you don’t notice it anymore. I was perfectly willing to be numb in place of the pain. This was a very easy side effect for me to accept and live with.
    The numbness is in no way unbearable, it just feels different. The migraine pain was unbearable.
    After a few days I didn’t notice it anymore and was just so happy about the success of the pain being gone.
    One other benefit is that you will not have sensory nerves so, you will not have any incision pain.

    I hope this helps you,
    -Rhonda

  • #75565
    Profile photo of makelemonade
    makelemonade
    Participant

    @rhonda!

    Thanks so much for all you input. I’m so glad you are still on the boards reporting how you are doing!

  • #75610
    Profile photo of rosie.smiles
    rosie.smiles
    Participant

    I am new here, but I just wanted to say that I had migraine surgery (nerve decompression and nose surgery) 2 1/2 weeks ago and I’m doing well! I still have pain in my head, but the migraines are dramatically improved!!! It was definitely worth getting done since nothing else worked for me; and I would encourage others to look into it if nothing else is helping!

  • #75739
    Profile photo of Rhonda
    Rhonda
    Participant

    Hi Rosie.smiles,
    What exactly did you have done to your nose. I have heard people reference it,but would like to learn more. Can you explain and/or provide a link?
    -Rhonda

  • #75760
    Profile photo of rosie.smiles
    rosie.smiles
    Participant

    Hi Rhonda,

    I had a septoplasty and partial turbinectomy done. (I had a deviated septum and nasal contact points where the septum and turbinates were touching.) My surgeon talks about it a little in his FAQ page: http://www.northeasternmigrainesurgery.com/faq/
    He also talks about the nasal surgery a little bit more here:
    http://www.northeasternmigrainesurgery.com/migraine-surgery/

    It does tend to take longer to feel better and get results if you have nasal surgery done–it takes awhile for swelling and irritation to get better. My nose is still somewhat sore and stuffy, but it’s improving.

    I hope this makes sense and is helpful; I think the nasal surgery is kind of difficult to explain.

  • #75856
    Profile photo of paulette
    paulette
    Participant

    I had the nerve decompression surgery in Boston by a very well-known plastic surgeon it did not work for me it was November 3rd and I still have my daily headaches my head is numb I had all six sites done and I have all my migraines back now I’m dealing with the pins and needles in my head is extremely itchy because the nerves are trying to heal and the back of my head I can’t even brush my hair because it hurts butt I would have done it again you know if they gave me
    some kind of hope the worst part of healing I think was having my nose stuffed with gauze I had to pay cash because my insurance did not cover it

    • #75865
      Profile photo of rosie.smiles
      rosie.smiles
      Participant

      Paulette,

      I’m sorry to hear the surgery didn’t work for you and you are in so much pain still. Did they test with Botox or nerve blocks or do any imaging before the surgery?

      I hope you get relief somehow…

  • #78866
    Profile photo of makelemonade
    makelemonade
    Participant

    @rhonda,

    Is there any way to get in touch with you? Either by phone or email? I am seriously considering the procedure and would love to have someone to talk to who has had the procedure done (excision, especially to the extent you have).

  • #79256
    Profile photo of Rhonda
    Rhonda
    Participant

    Hi makelemonade, I would be glad to talk with you.
    Please send your contact info to Redmigraine@gmx.com and I will call you.
    I’m excited to answer any questions you have.

  • #79436
    Profile photo of Rhonda
    Rhonda
    Participant

    Hi all,

    Does anyone know how to send a private message within this forum. I have looked everyplace I can think. I want to send one to @ makelemonade

    Thank you, Rhonda

  • #79628
    Profile photo of Joanna Bodner
    Joanna Bodner
    Keymaster

    Hi there Rhonda,
    I also sent you a direct email regarding this, but this feature is temporarily disabled due to work being performed on site enhancements.

    Thanks for your patience and look for the updates in some time to come!
    Joanna (Migraine.com Team)

  • #80120
    Profile photo of makelemonade
    makelemonade
    Participant

    Hi @rhonda! I sent you an email. I am just seeing your message now. I had not been back to this forum in a while. Thanks so much for reaching out to me, I hope you got it.

  • #80612
    Profile photo of kitchenharpy
    kitchenharpy
    Participant

    It has been 3 years since my daughter completed her 3 surgeries. She is graduating with a degree in Accounting in two months and entering a Masters program. She also has a part-time job. I am so proud of her and so grateful to Dr. Ducic. There are still menstrual migraines once a month, and these are no picnic, but compared to the chronic daily pain they are manageable. The nerve decompression surgeries made the difference between no life at all and being able to live successfully in the world.

    • #80621
      Profile photo of Katie M. Golden
      Katie M. Golden
      Moderator

      @kitchenharpy,
      Thank you so much for sharing your daughter’s experience with nerve decompression surgery. It’s great to hear a success story, especially three years after the surgery.

      You must be extremely proud of her and her accomplishments!

      Best to both of you!
      -Katie
      Migraine.com Moderator

    • #80648
      Profile photo of rosie.smiles
      rosie.smiles
      Participant

      Kitchenharpy,

      Thanks for sharing the success story! I had migraine surgery earlier this year (nerve decompression at my temples, the back of my head, above my eyes, plus nasal surgery). I got it all done at once and it took 7 1/2 hours, but I was glad not to have to go for more surgeries. It was a huge life-changer for me. I think of it almost as a miracle and I feel like a different person. I pretty much had no life before, and now I am 100% migraine free (not even menstrual migraine!)!!! I still get some “regular” headaches, but they are not as severe or as frequent as before; and usually respond to OTC meds if I have to take them. I am drug and needle free! I am excited about this surgery and what it could mean for other migraine sufferers. Oh, and neither Botox nor nerve blocks worked for me but this was still a huge success! Thanks for sharing your daughter’s story…you never know, it could make all the difference for someone else. Someone took time to share a success story with me, and now here I am–finally migraine free!

      Take care,
      Rosie.smiles

    • #80690
      Profile photo of Katie M. Golden
      Katie M. Golden
      Moderator

      @Rosiesmiles
      WOW! Your story is amazing. With all of the surgeries, were they all aimed at your migraines? Or did you have other issues that pieces of the surgery also helped? For example, did you have a deviated septum that was fixed and while they were in there they focused on the nerve bundles in that area? Can I ask where you had this 7 1/2 surgery performed? I’d love to learn more. And I’m so glad you now have relief!
      -Katie
      Migraine.com Moderator

    • #82265
      Profile photo of rosie.smiles
      rosie.smiles
      Participant

      Hi Katie, just wondering–did you see my reply to your questions? ๐Ÿ™‚

      ~Rosie ๐Ÿ™‚

    • #82268
      Profile photo of Katie M. Golden
      Katie M. Golden
      Moderator

      Hi Rosie!!
      Thank you for reaching out. I know that I read your response and must have meant to come back to it and respond, but…it must have gotten buried.

      I really appreciate your detailed responses. I’ve not come across another patient or a doctor who has done such extensive surgery (especially all at once!). I read through his website and it seems like he was trained as a plastic surgeon, which is typically they type of surgeon who does nerve ablation or nerve decompression surgeries. He had to coordinate and consult with your other doctors to perform all of the other surgeries that day, that shows some dedication!

      How was the approval process with your insurance company for such a long surgery? To me, it would make sense to do it all at once, plus there has to be some cost savings in there too. However, insurance is always tricky. How much did you have to fight to get this approved?

      Lastly, how often do you see him now, if at all? It sounds like you don’t experience migraine attacks anymore so I doubt you’re doing Botox. Are you being followed by a neurologist? Or have you found that you don’t need the specialized care since the success of the surgeries?

      Thanks Rosie!!
      -Katie
      Migraine.com

    • #82280
      Profile photo of rosie.smiles
      rosie.smiles
      Participant

      Hi Katie!

      You’re welcome! I am detail oriented, so I enjoy this type of thing. Yes, from what I’ve read, most people’s migraine surgery is not this major. My migraines were awful and my pain was very wide-spread, so we got the whole works done.

      Yes, he is a plastic surgeon and has (what seems to be) quite a successful plastic/reconstructive surgery practice. He’s really a wonderful surgeon and I can’t imagine having anyone else operate on me for something like this. We felt privileged to have him and to be living that close, when people come from all over to see him. I think it’s great having a plastic surgeon do this procedure since he did such a great job at hiding the incisions! You wouldn’t know I had it unless I showed you the scars in my eyelids and under my hair, which has grown back nicely by now. Yes, it made sense to do it all at once…you only pay hospital and anesthesia fees once! Plus, I figured if I was going through it and would be resting and recovering, then I may as well get it all over with at once. He did give me the option of not doing it all at once (he said it can be kind of hard for some people to handle if you have a packed nose, black eyes, plus incisions at your temples and at the back of your head), but I figured I’ve survived so much already, I can get through this too. I made it though fine and was so glad I wasn’t going back for more surgeries!

      We never got the surgery approved. My insurance denied it (I have Anthem and apparently they are notoriously bad for approving things), and so we did the first and second level appeals, made phone calls, and sent letters (letters from medical people who had worked with me and letters about all I had tried without relief, etc.), but they absolutely refused to approve it saying it was “experimental, investigational, and not medically necessary”. The doctor said we could try an independent external review (his billing person said she requested it months ago and we never got it…it’s supposed to go through the insurance company, and it seems kind of funny to me that nothing happened with it…anyway, we’re still trying for it because this really should be covered). We tried so hard to get approval, and, as far as I know, did everything we could to help the process. This was all while I was waiting for the surgery and I was absolutely miserable. It seemed I was sick with a migraine more often than not, and it was really hard battling though all this difficult and confusing insurance stuff. I had nothing that helped me, except for hydrocodone which I used sparingly when I couldn’t stand the pain, which my neurologist mercifully prescribed for me since he was completely out of good options. Anyway, I couldn’t schedule surgery without insurance approval or else paying out of pocket, which I definitely couldn’t afford, and I was so desperate for relief–migraine surgery seemed my only hope of ever having a normal life again.

      Well, I am part of a very wonderful church (not a large church) and the people there really wanted to do what they could to help. They knew that I had been dealing chronic illness (other surgeries and chronic problems) for a long time and felt it was time something was done to get me the procedure I needed–thankfully there even was an option out there for people in my condition. These wonderful, caring people covered the whole cost of my surgery, and it was all gifts. It was so amazing to be shown love in that way. After such a long and grueling battle with chronic pain and illness, the support was encouraging and was what we needed to get through this. And now here I am, migraine free!!!

      I saw the surgeon at three weeks (the stitches were taken out nine days after surgery by primary care since the surgeon is two hours away, and I was glad not to travel) and then two months (which was July). I had one follow-up appointment with my neurologist. He was very impressed! He hadn’t heard of this surgery before I talked with him about it, but he said he might start sending other patients up to this surgeon since it did so much for me. At that appointment we were able to discontinue (or start decreasing) all medication I had been taking, either abortive or preventative, since I was migraine free; and I am totally done going to neurology, unless something unexpected comes up. I also followed-up with primary care, and she was impressed and I am done seeing her about headaches and migraines. No more prescriptions, Botox, nerve blocks, etc. for migraine! I have an appointment with the surgeon on Monday, actually. I haven’t seen him since July, but I’m pretty sure I’ll get a good report. After that I will probably see him at one year after the surgery, which is next May, and that might be all I’ll go back there. So many people have told me that I look so different, so much better–even people that I hardly ever saw and didn’t think they would notice. Since the surgery isn’t supposed to change your looks, I would ask them what looks so different now. They say that before I always looked tired, tense, and in pain (that would be on “good” days…most people didn’t see me in a full migraine); and now I look relaxed, happy, full of life, etc. I am extremely grateful…for getting a life again, for the people that helped make it possible, and for many people who faithfully prayed for me.

      Sorry, this got longer than I intended again (how does that keep happening?!).
      Take care,
      ~Rosie ๐Ÿ™‚

  • #80714
    Profile photo of rosie.smiles
    rosie.smiles
    Participant

    Hello Katie!

    Thanks for asking, I am so enthusiastic about this and happy to answer questions. ๐Ÿ™‚ Yes, all the areas of the surgery were aimed at my headaches and migraines. (I had chronic intractable migraine, and chronic daily regular headaches…in other words, when I wasn’t having a migraine, I always had some kind of headache or pain in my head and neck. I thought I had two issues going on: migraines and “regular”/tension headaches–but the neurologist said that the symptoms I had even with my tension headaches were “migrainous” and shouldn’t go along with just tension headaches. He said he thought all my headaches were some type of migraine. Then when I talked with this plastic surgeon who later operated on me, he said he thought all my headaches were caused by the same issue, too…so it was comforting to me that two different doctors of very different specialties agreed about that.)

    Yes, I did have a deviated septum. (I also had sinus surgery two years before the migraine surgery. The deviated septum was mostly fixed in that procedure. It didn’t really help the headaches a lot like we had hoped; but it definitely helped my sinus problems like the pressure, congestion, ear issues that went along with that, etc.–so sinus surgery was worth getting done since nothing was helping my chronic sinusitis and I tried everything. The ENT said my septum was pretty good afterward–not completely straight, but then hardly anyone has a perfectly straight septum.) So my septum wasn’t too bad, but enough off to be worth operating on again, and I had “nasal contact points”. I think that’s a bit more difficult to grasp or explain, but it’s when you have points where your septum and turbinates are touching and that creates irritation that can trigger headaches. So, yes, in a way, I had other issues that this surgery also fixed (like some minor congestion), but the focus was migraine. The surgeon said the work on my nose (septoplasty and partial turbinectomy) should also help my allergies (that is, help me not to mind them so much with the turbinate reduction, etc.). Also I have a history of TMJ issues. I actually had TMJ surgery a few months before the sinus surgery, in 2014. I had tried everything for that as well and had a pretty severe case of TMJ dysfunction, so bilateral TMJ arthroscopy was my last and best option. That really worked, as far the jaw joint issues, but I still had muscle pain along my jaw/side of face and headaches in my temples–from clenching and grinding, I guess. So all that to say, the migraine surgery also helped my “leftover” TMJ pain. When I had the consult with the surgeon, and we were talking about what areas were my “trigger spots”, we were deciding about my temples. He said, instead of decompressing that nerve by taking away the muscle around it–they can’t really do that since it’s your chewing muscle and necessary, they just cut the nerve. He said that would probably help the tension and pain and headaches related to my jaw. TMJ-related problems weren’t the big issues for me, the main thing was migraine, but relief for all of my facial pain problems sounded pretty good. They told me that all these problems–TMJD, sinusitis & allergies, and headaches & migraines–were not separate problems, but really all went together. It did for sure help the pain and tension in my jaw area. Although this isn’t a fix for TMJ and he does nothing with the joint itself, it helped the residual pain from the TMJ ordeal.

    My surgeon is David Branch, MD in Bangor, Maine. He is wonderful and I give him the highest recommendation. He’s been doing this for a long time and is one of the pioneers in migraine surgery. Here’s his website: http://www.northeasternmigrainesurgery.com I live in Maine, so it was great–barely two hours away from home. He has people come from literally all over, so living in the state is pretty good. Thankfully, I was able to come home that night after the surgery (it was a loooong day, especially for my parents!). There’s nothing like being at home in your own bed when you’re sick or recovering! He operates at an outpatient surgery center and two local hospitals in Bangor. I had my surgery done at one of the hospitals (because that was the first place I could get in at)–St. Joseph Hospital. Their care was superb and I would also highly recommend them. They were really above average. Maybe this was more information than you wanted…but does this answer your questions? Please ask if there’s anything else you’d like to know!

    ~Rosie ๐Ÿ™‚

  • #83990
    Profile photo of DoxieMama
    DoxieMama
    Participant

    I found this forum trying to research other’s experiences with this surgery. I’m struggling a little right now and am hoping someone else has been through this and can offer anything – advice, commiseration, moral support?

    Just a little history: I’m 40 years old and had decompression/excision surgery on 8 November of last year. I’ve been suffering migraines since age 13, and EVERYTHING has been a trigger, but mostly weather (which I have no control over). I’ve tried every medicine and treatment (SNRI, SSRI, opiates, elimination diets, DHE, nerve blocks, Botox, SPG blocks, seizure meds, biofeedback, massage therapy, beta blockers, etc. etc.) under the sun and have seen at least a couple dozen neurologists, primary care doctors and ER doctors. My veins are beef jerky from all the infusions and I missed my eldest child’s college graduation because I was hospitalized after DHE gone wrong. To make matters worse, now any time they need a vein, they can only access it via painful PICC line or central line due to the brutal infusions so a quick ER jaunt isn’t even an option.

    I was finally directed to a headache clinic in Dallas, that specialized in migraines, by an ER doctor whose wife suffered migraines and really felt for our plight. Unfortunately, while they opened up more options, nothing helped for the last year and I had to give up my full-time job, and, well frankly, my life. My husband had to drive me 2 hours into the city at least once a week to get injections and miss work himself because I never knew how I’d react – lucky me, the side effect queen. Living in the dark of your bedroom stinks and I hear depression is a co-morbidity but how could you not be depressed when you live your life hiding from noise, pain and everyone you love. My husband married a well woman who within months couldn’t do anything resembling living, help support our household, or even vacation since every vacation off work since our honeymoon has included a hospital stay instead of a resort – plus who with chronic migraine would dare plan a vacation?!

    Even the migraine specialist, who was a neurologist btw, finally reached the point where all we had left to try were more medicine combinations – not even new meds, just new hellish combos. I was still in pain but now also suffering a traveling sideshow of side effects from the meds that were almost as awful. I mean the icing on the cake is weight gain, hair loss, insomnia, drowsiness, muscle pain, elimination issues (feast or famine), mood swings, hot flashes, etc. etc., right?! Let me also add that during the testing phase, they discovered a cyst on the pituitary gland close to an artery and I went through a barrage of tests with a neurosurgeon to determine if this was causing my pain, added to it or was worth the risk of operating and ultimately decided it was not. Now, I just go once every year to get a PICC line for the day and new scans. Still, it was like waiting on presents Christmas morning, because you PRAY there is something wrong because that means there is the possibility of fixing it.

    All this crescendoed into a do-or-die situation where I had to reassess my life and conquer these migraines or give up and be disabled – but I could no longer live with it. Finally, my neuro referred me to Dr. Bardia Amirlak at UTSW with whom she had interned. Even though the Botox had not worked, the nerve blocks done on only one side of my face DID work which was a ray of light after a very dark year. Things moved quickly after that and he scheduled the surgery, approved it through my insurance and set up the PICC line to get started. I don’t have to tell any of you who have been through this that we know there are risks. My risks were always a little scarier because I’m a medical bad luck story – like the WORST. If Final Destination had been based in a hospital, I would be the star. I ended up with extra bleeding and the worst case of nausea in the world, high BP, etc. Since we lived two hours away from the nearest decent hospital, he kept me an extra couple of days to get it under control.

    Once I healed from the immediate pain, I felt great. I had a headache, but not a migraine… FOR 21 DAYS! I had taken 2 months off work on disability to really get over this once and for all. I had some issues with BP but took my pain meds and such for a couple weeks and then started adding normal tasks and moving about to my routine to be ready to go back to work after the Christmas holidays. I actually enjoyed the holidays with my adult children for the first time in forever because I got to PARTICIPATE! Unfortnately, also during this time, I began to wean off the last of my migraine preventatives.

    FLASH FORWARD: I am miserable. I get these “brain zaps” that feel like someone is playing pincushion with my scalp a hundred times a day, and they make me visible flinch like I’m having mini seizures. I have had 2 migraine free days in the last 10 days. I’m so depressed that number one – the thought this was all for naught, and number two – that this was our last ditch effort and it failed. My work, my job, my kids, my parents – all these people that depend on me bought into my “miracle cure” philosophy because while I knew there is no cure, I needed hope. I’m hoping the “honeymoon” phase is over but that maybe some of this levels out over the next few months to a year. The surgeon reassured me that while most people get immediate results, some can take up to a year to see the full benefits.

    Has anyone else experienced this heartbreaking setback? I can talk all day about this to my friends, family and coworkers but no one really understands how awful this up-down battle is.

    • #84170
      Profile photo of rosie.smiles
      rosie.smiles
      Participant

      Hi DoxieMama,

      I’m so sorry to hear of your experiences. It must be terribly disappointing and discouraging. I’m not sure that I can help you or answer anything for you, but I can offer compassion at least. I had excellent results with migraine surgery, but I did feel pretty rough at first. My head was quite sore and even though I didn’t think I was getting any more migraines, it was hard to tell at first how much it helped since my head hurt so badly. I’m not sure about the “brain zaps”, but I did get a lot of itching and tingling and feeling like bugs were crawling over my head as the feeling was coming back. It’s been 8 months for me and I’m doing great now…just a few small areas of numbness and occasional itching. The numbness and “creepy-crawly” feeling was mostly better by 6 months. The doctor did tell me he allows a year to fully recover. (I’m not sure how much you got done, but mine was pretty major–I got operated on above my eyes, my temples, the back of my head, and my nose.) He said, at the 6 month visit in November, that he still wants me to be careful about what I do–i.e. not combining too many of my old triggers because sometimes people get better with the surgery, but then do too many of the things that used to trigger their migraines and it can bring them back again. It’s not that I have to go around being afraid my migraines will return, he just wants me to be smart about what I do and not freak out if I actually do get a migraine (though I’ve been migraine free since recovering from the surgery). I don’t know, but I wonder if you got back to normal too fast or got off of your preventative meds too soon? That’s just a thought, don’t know if there would be anything to that…

      Please know that I care about what you are going through, and wish you the best.
      Take care,
      Rosie ๐Ÿ™‚

  • #94617
    Profile photo of ndw6888
    ndw6888
    Participant

    Whew. This is a hard topic to read. I burst into tears three seperate times reading the good and bad. I haven’t been able to find people with chronic daily migraines like me. It feels both a massive relief and pretty horrifying that I’m not alone. I hope everyone here finds a path of health, support, and coping.

    Also like everyone here, the list of treatments I’ve done is long. I have weather based migraines,and have been fortunate enough to have a career as a traveling speech language pathologist (fortunate in that I am able to try out parts of the country that are easier on me AND fortunate enough to have had the combination of support to amazingly keep my job). Even with the moves to “good migraine weather,” I am stuck in the cycles of ER visits, doctors who don’t know what else to do for me, and a husband who has given up quite literally all his individual life (family, career, friends) so that I can find a modicum of existance.

    I want to provide my experience in evaluating treatment options and the guidelines I use for myself based on my professional ethics in my own field of treatment as a speech language pathologist; specifically, evidenced-based practice. Evidenced-based practice is comprised of 1.quality research, 2. expert clinical experience, and 3. patient values. All three are vital in establishing the most effective, high quality care. That is, I try to make my decisions for finding options that give me information for all three. High quality research doesn’t always transfer to a good trestment in clinical practice. A particular doctor’s positive experience doesn’t either. And neither will have the best outcome if they don’t take into account listening and collaborating with us as patients. Doctors are the experts in medicine and we are the experts of our personal experiences in our own bodies.

    I expect my doctors to communicate the research with positive and negatives clearly addressed, communicate their clinical experience with the treatment, and collaorate with me to help me have truly informed consent. If they don’t do this, my personal guideline is directly communicate my concern and/or to not continue with treatment with them.

    That being said, being a part of the medical community, I am skeptical of most treatments. Though not to say I’m not willing to try them. Studies for migraine treatment are somewhat notorious for limited study design. Far and away, I don’t think it is from ill intent trying to dupe, but mostly from the complexities of the disease, a really diverse population, limited understanding of of how and why the disease does what it does, and limited funding. Then, even with the best studies, there is the reality of those of us that are, for all intents and purposes, medical outliers. My docs across the board have told me the probabilities of my adverse reactions are incredibly small, but they occur all the same.

    Reminder: I’m a therapist, not a doctor. I’ve read all the studies I can get my hands on for nerve decompression. The studies are, as folks have mentioned, from plastic surgery. Typically blanket turf wars aren’t present in ethical medical communities (not to say bias doesn’t occur). Neurology and plastic surgery have different foundational perspectives of body function, based on their specialties. It’s similar to the way I view my patients in comparison to an occupational therapist, psychologist, or ENT. The best hope is collaboration between the specialties. This can be a difficult hurdle, but I ask my doctors to talk to each other. Then I ask them to explain it to me. If a doctor is not willing to answer questions, listen to you, or gives you round about responses, be direct in your concerns. Try and prepare for doctors visits. If you can’t start reaching out for a “medical ally” who can help you. Don’t be afraid to call your doctor’s office to ask for expectation on how long a visit will last or to ask if they can give you an expectation for what a particular visit will entail. I try to make friends with as many people in my provider’s office as I feasibly can. I want anyone I can get on my team to help me when I know I can’t function.

    The migraine community is invaluable. The support and creativity of folks here trying to grapple with the disease is incredibly important. We need each other’s experience and stories. I know it helps me to read them.

    I try to be mindful of any provider that *primarily* pushes success stories in their practice information. In so many ways, these stories are so hopeful. However, any ethical provider will explain the risks and avoid using terminology that seems too good to be true. I think that is, in part, why many headache specialists can be so skeptical of newer treatments outside their specialties. If you have doubts or questions, express it and keep expresing it if need be. For example, I went into a myofacial pain specialist dentist. It was an effecient, beautiful clinic. The initial visit was professional, they provided a packet of research and informational material, and the doctor step by step explained my results, diagnosis and treatment options. However, the patient-doctor communication was poor. He didn’t listen to my medical history, directly answer questions, or provide explanation or theory to how the treatment or diagnosis is connected to my symptomology. Instead he said, we’ll fix you and that he’s had many women just like me and they now are all feeling good. The patient information packet was for a different diagnosis than my own, and the research had no tie to migraine symptoms. I don’t blame him for citing success stories, but the communication breakdown was a read flag and ultimately I made the choice to forego treatment because I couldn’t say that I was truly given informed consent. Now it could be that the treatment is effective as “off-label” or that it is currently experimental, but the conversation was never had giving me the opportunity to make an informed decision. If the doctor didn’t listen to me in the beginning, there is a chance he wouldn’t listen to concerns throughout the treatment.

    The reality is that it is good marketing to provide patient success stories and it helps build patient trust. There have been some interesting studies throught the years showing how strongly patient outlook affects positive outcomes. I’ve had conversations with my doctors on the benefits of the placebo effect. I am willing to try relatively low-risk treatments with murky studies if nothing but receiving the benefits of the brain believing I’m doing better. Conversely, there is a solid foundation of research, expert opinion, and clinical experience of the effects of depression, amxiety, and high stress negatively effecting patient outcomes. These effects (positive or negative) are not huge, but they are enough to make a significant difference in patient experience. (*Please understand that a diagnosis of depression or anxiety is truly NOT comparable to an upbeat attitude. While psychological treatments like mindfulness-based cognitive therapy, biofeedback, Acceptance and Commitment therapy, etc can be invaluable coping techniques for anyone with migraine, all forms of mental illness require assessment and treatment by qualified professionals).

    To complicate matters further, some research suggests that feelings of empowerment (such as actively seeking or trying treatment) can have the feedback loop of positive a positibe outlook boosting the placebo effect. That is, if you are in a dire place, even the prospect of having an option to explore can provide a placebo boost. However, as so many of us have experienced, the loss of this boost by a failed treatment can be detrimental to our outlook on life. This is a primary pain of chronic disease. You’re not failing or stupid or wrong for feeling this. Providers are also aware of this.

    There have also been some informal surveys on doctor experience in treating chronic disease. Doctors have reported everything from feeling personal guilt of not being able to “help” payients to ethical concerns about continuing to see and charge patients that have had plateaued progression. Some doctors say that it is most ethical then to transfer patient care back to primary care providers and recommend counselling/coping services. Don’t be afraid to ask your doctor if directly about their choices if you start to feel abandoned by their care.

    I’m not done exploring decompression surgery as an option. I suppose I’ll update you as I progress in my journey.

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