I have a question. My ex wife is considering Nerve Decompression Surgery for our 16 year old daughter who has had a Chronic Migraine for almost two years. She has been to MHNI, Cincinnati Childrens and now seeing a new Neruologist and getting massages, and going to a Chiropractor. I have done my research and what I have discovered is that most of the evidence for this is ancedotal at best. The studies done on this are small, and scientifically flawed. The Neurologist community and Headache Specialists are very skeptical. It is not even an option at places like the Mayo Clinic or Johns Hopkins.
So my question is has anyone had this surgery and does it work? I am an engineer by training and before I offer to shell out a large sum of money on a maybe I need information as this seems like snake oil to me.
Bear in mind while at MHNI she had nerve blocks and they did nothing for her, and when she was at Cincinnati Children’s she was a patient of the Headache Clinic. I just don’t know what the next step will be, and I want to be rational and methodical about this.
I know several people who have had great pain reduction from this surgery. However, I also know some for which it has done nothing. I’m not sure what the difference is other than it seems to be fairly successful for patients diagnosed with chiari malformation.
When I was considering surgical options several years ago, I considered both nerve decompression and a nerve stimulator. Ultimately I went with the stimulator because they do a trial to see if it works and if it doesn’t, it’s totally removable/reversible. Decompression surgery is permanent so that’s just something to bear in mind. However, the recovery time for decompression is significantly less than with the stimulator, so consider that as well.
I can get email addresses for decompression patients who will visit with you if you’d like. And if you have any questions regarding nerve stimulation, I’d be happy to answer those as best I can. There is also a great facebook group that has become the biggest source of info regarding nerve stimulation for headaches on the web. https://www.facebook.com/groups/232392623486874/
It works (at least for me) and Dr. Afifi at UW-Madison is amazing, but if nerve blocks don’t work I’d be cautious, since that is one of the indicators that the surgery will work. If the nerve blocks don’t help, what are they using to determine she is a good candidate? Ask. Going through the surgery when testing indicates you aren’t going to be helped would be devastating.
I have had both a decompression and an excision. While I was told that the study had very high success rates, I did not experience this success. In fact, it took me three years after the excision to be able to put any pressure on my head, including to put my head down on a pillow.
The best advice I can give has already been given , if the nerve blocks don’t do much for you, the surgery won’t either. The idea is similar so if the nerve blocks don’t work, then save yourself the time, pain, and money.
I have had a headache everyday for 18 years so I understand the level of desperation– that is why I tried it myself.
Another suggestion is a therapy coming out of Duke Neuro-radiology in which they identify whether spinal fluid is leaking out and causing low SF pressure headaches. If this is a cause, then they use fibrin glue patches to seal any leaks while allows the pressure to remain at normal levels. They are having really good success, but it only applies to people who are affected by specific headaches.
Good luck. And keep trying!!
I had the nerve decompression on the back of my head 3 years ago and it was life changing. I have had temptemporal migraines since then so I decided to have my temple done. I am 3 weeks post surgery and ththe pain is constant and worse. Has anyone else hadhad the temporal done with similar result?
I had migraine surgery done six weeks ago on my temples, back of head, above my eyes, and nose. It really worked! My head is still sore and numb at some places, but it’s improving. My migraines are SO much better. It’s like night and day difference. Oh, and neither Botox nor nerve blocks helped me before, but the surgery still worked. I got improvement almost immediately. What my doctor does has a 90% success rate and he’s never had anyone get worse. So sorry for all those that weren’t helped or got worse through surgery.
rosie.smiles – I just had my 2nd nerve decompression surgery done 2 weeks ago. You indicated success and I was wondering if you had any migraine pain right after the procedure. I got a migraine about 10 days after the surgery. This is kind of what happened after the first surgery – about 14 days after the surgery, the headaches came back. The surgeon only took 5 of my 6 nerves last year because there was a complication with the final nerve. After the 1st surgery, the migraines moved from my temple on the right side to above my right eye – right where that final nerve is. So 2 weeks ago, he took the final nerve too. I was just wondering what your recovery was like. Thanks in advance!
Thanks for contacting me–I am happy to answer questions if I can. Someone took time to explain it to me too… 🙂
Yes, I had wonderful success. I am migraine free!!! My migraines are all gone, and my “regular” headaches are less frequent and actually respond to OTC medicine if I have to take it (I’m totally off of prescription meds!). I am so thankful! The itching and tingling that I had when my feeling was coming back is mostly gone now, which is really nice. Most of my feeling has returned. (It’s been almost five months since surgery.) I did get all four zones done since my pain was so wide-spread. The doctor said I could’ve gotten one or two done and waited to see if that helped or if we needed to get the rest done; but I just wanted to get it all over with at once. I figured the recovery couldn’t be that much worse than living with chronic intractable migraine. It was a little rough, but not unbearable and was totally worth it. They told me that was wise to get it all done at once since, they said, it seems migraine pain can “migrate” to another area that wasn’t operated on. It sounds like that was your experience.
I did have quite a lot of pain right after the procedure. I was taking a lot of pain killers so it was hard to tell if it was migraines or just incisional pain (I had surgery on all the places I had headaches–above my eyes, my temples, and the back of my head–plus nose surgery, so it was pretty major). It was pretty bad the first few days, but I could tell that the migraines were much better soon after that. I had a lot of pain, but it didn’t seem to be migraines. However, what I was taking for pain (hydrocodone) was what I took out of desperation for migraines before the surgery because all else failed, so again, it was hard to always tell what the pain was. I went to church for the first time since the surgery after about two weeks…and I got a raging headache after that. I did feel somewhat sick to the stomach, but I was exhausted (we have long church services!) and it was probably too much activity…also I combed my hair in a bun so maybe that aggravated it. Anyway, all that to say, I did have some intense headaches afterward, but it more seemed like I got them from activity and exhaustion and felt sick because I was so tired, and not so much like the migraines I got before surgery that I couldn’t really find an explanation for (they seemed so random and I felt like I had migraines more often than not). Something to keep in mind is that it did take me quite awhile to feel really well. Even though I wasn’t getting bad migraines after the surgery, I was getting intense headaches and was really weak and tired for awhile (also I was quite anemic so that could’ve been part of the problem with fatigue and headaches). For several weeks I mostly just laid in bed with my head elevated and listened to CDs and such to keep me distracted. I’d say it took 1-2 months to feel well and be able to do normal activities. Rain really bothered me at first and made me pretty miserable, but that is so much better now. I guess the air pressure made swelling in my nose and eyelids where I had surgery. I also had some sinus trouble and infection after surgery, so that made me feel worse, but that has cleared out well and my sinuses and breathing are pretty good now. Regarding what you are experiencing, I didn’t really have a short period of relief and then have my migraines come back. The doctor said it would be normal to feel worse for awhile before feeling better; and it was normal, so I shouldn’t freak out, if I had a few migraines…especially since I had nose surgery and it can take awhile for things to calm down with that. But thankfully, I noticed improvement pretty fast and slowly but surely improved. I think I got a really good response and noticed improvement sooner than some people from what he said. Also, I got I-V iron infusions a few months after the surgery since my iron was so low. The doctor told me anemia can cause mild headaches (like pressure headaches, not migraines so much)…the infusions did seem to somewhat help the headaches and the lightheadedness and fatigue. Some days are still better than others, but in general I feel well. The headaches I get now don’t debilitate me like the migraines did. When I get headaches now, it seems they are often caused by either lack of sleep or my neck being tight.
Does that answer your questions? Also I’m wondering exactly what procedure you had done…the only nerves I had taken out were in my temples. The nerves above my eyes and at the back of my head were decompressed and then cushioned with fat; also I had a septoplasty and partial turbinectomy because of nasal contact points. I’m wondering if your doctor considered nasal surgery or if you have ever been checked for a deviated septum. I know not all doctors do that as part of migraine surgery, but I seemed to have a lot of nasal triggered headaches so my doctor said that zone was especially important.
I feel bad that this hasn’t helped more…I really hope something works for you. I don’t know about your case, but it could be that you just need more time for things to heal and calm down. I know two weeks after surgery I wasn’t feeling too well and had a lot of pain. My surgeon told me that I could feel worse before I got better. He said sometimes the surgery causes more migraines since they aggravate the nerves working on them (but then most of my nerves weren’t taken out, just decompressed), but that should be temporary…but I don’t know what your doctor’s approach is. Anyway, I hope this answers your question and feel free to ask if something doesn’t make sense or if you have more questions. 🙂
Thank you for your reply Rosie! Can we speak via skype if you have time. It would be very helpful for me, please. I’m thinking about a surgery. My e-mail: email@example.com, can you write me, please!
Hi Rosie! thank you for your reply and time! I’m from Kazakhstan and have headache for 15 years. I’m thinking about surgery. I’m sorry but I just want to see you via that you real and it’s not one of clinic versute plan. I’m sorry but I wand to be sure because operation is not easy thing.I want to apologize again. thank you in advance!