Adventures in Migraine Surgery
I'm not a doctor or a clinician. Just a migraine sufferer. I wanted to share my experience with migraine surgery. It should be up to each one of us to determine the course of our treatment. Maybe my experience will help someone else.
In the Beginning
I'm excited. I'm nervous. I'm intrigued. I'm curious. I'm fearful. I'm hopeful. I'm happy.
Could this finally be the light at the end of the tunnel? Could relief be right around the corner? Can I get my life back?
All of these questions are running around my head as my wonderful husband drives me to the surgical center for Peripheral Nerve Decompression surgery.
My migraine story started in 2011 as told in "Migraine is my Mistress". Since then, a lot has happened. The migraines have morphed into a daily struggle. I wake up at a 2-3/4 pain level and end my day at a 6-7. On windy days I crawl into my cold, dark bed and cry in between vomiting sessions at an 8-9 pain level. Even the more powerful nausea meds don't help me hold down the triptans/narcotics. I puke up everything while watching the side-way -lightning-bolts-of-aura flash through the toilet bowl. It's miserable.
I went on FMLA leave from my job in October 2012. After another trip to ER for IV pain meds and fluids, my fiancé and family finally convinced me that the company I worked for was hurting me even more with the stress induced by my job. In January of 2013, my FLMA expired and I was terminated. The termination and loss of my career due to disabling daily migraines was a huge blow to my emotional stability. All the drugs I was taking only made me vomit and didn't really help with the pain. Battling fatigue was a huge effort. It seems like a lifetime spent in bed. Depression was barreling down on me like a train.
I am one of the lucky ones though. I have a prince charming who listened while I complained incessantly about my situation. He always made me feel so much better. I also had a great family who was there for me with kind words and a sympathetic ear. I don't know how I could have gotten through this without my wonderful support group. I got married in March.
It was "the best of times and the worst of times".
I also had great friends. One of them called me one day. "Did you see that news blurb about migraine surgery?". I checked it out (here). Hmmm....I was skeptical. What is a plastic surgeon doing treating headaches?
I my past life, I spent 15 years as a biomedical engineer in the San Francisco Bay Area. I started out testing medical devices in a lab and moved into clinical trials management. I was very familiar with medical research and my brain started to go into overdrive. As my husband would say "my geek was showing". I read as many papers as I could on Supraorbital Nerve Decompression and Occipital Nerve Decompression including the landmark study, Comprehensive Surgical Treatment of Migraine Headaches conducted by Dr. Bahman Guyuron. Dr. Guyuron's 5-year follow-up study showed promising results. There were also a number of YouTube videos from Dr. Ziv Peled and Dr. Kayvan Khiabani that were incredibly informative. Where have these guys been hiding?
According to the research, patients who had some success with Botox were good candidates for the surgery. I had my first round of Botox in December of 2012. It took a month for me to notice any real changes. I had a slight reduction in my symptoms. I still had daily headaches, but they weren't as intense. After about 6 weeks of some relief, the Botox wore off and I needed another round. I had a second round of Botox in April 2013 with the same limited results.
I talked to my neurologist about the surgery. She had never heard of it and was skeptical. "If it's so great, how come the neurosurgeons aren't doing it?" I thought that the neurosurgeons are probably not interested in this type of surgery. They make a lot more money implanting neuro-stimulating devices than they would doing a non-invasive out-patient procedure. Insurance companies aren't cooperative in reimbursing for this procedure and the medical device companies who make the neuro-stimulators have the upper hand in both lobbying and marketing dollars. Money-politics-bureaucracy-power struggles. The patients are just an afterthought.
But I've never been the type of patient who will sit by and let the powers-that-be dictate how to manage my disease. The doctors and corporations can fight their own battles. I wanted my migraines to stop. I want to feel better, I want to get better, and I'm willing to try any viable treatments that might be available. The procedure itself has been done for decades for cosmetic reasons (brow lifts, etc.). The worst that could happen is that my forehead is smoother. I wasn't scared of a little plastic surgery.
I contacted Dr. Christopher Khorsandi at the Migraine Relief Center here in Las Vegas and the adventure began. I went to the consultation armed with Dr. Guyuron's papers as well as other abstracts and documentation regarding the procedure. I was also armed with Dr. Jason Hall's tips on Finding the Right Migraine Surgeon. To my delight, Dr. Khorsandi was very familiar with Dr. Guyuron and had actually worked with him. He was well trained in the procedure and I felt very relieved and lucky that I had found a surgeon in my home town who could treat me. My excitement level, optimism and sense of hope started to return. We scheduled surgery for June 28th. Dr. Khorsandi's brother, Dr. Mark Khorsandi was going to fly in from Houston to assist in the surgery and they asked if they could videotape my journey. At some point, this story will be available on video.
I arrived at the surgical center with a typical level 4 migraine. I describe my beast as the "4-Headed Migraine Monster". Monster #1 sticks ice picks and nails into my eyes. Monster #2 attaches the vice grip to my temples and starts to screw it tighter. Monster #3 stands on the back of my neck and drops bricks onto the base of my skull and Monster #4 blows into my brain cavity until the pressure builds up like a big, over-inflated balloon. Sometimes all the monsters play together and other times only a couple show up to the party. But the beast is always with me. I was ready for battle.
The procedure lasted 3 hours. I had 3 areas worked decompressed. The technical terms are as follows:
• Neuroplasty of the Supra Orbital Nerve (the ones in my forehead)
• Neuroplasty of the Zygomatic Temporal Nerve (the ones in my temples)
• Neuroplasty of the Greater Occipital Nerve (the big ones in the back of my neck)
They also evaluated my supraorbital foramen to determine if there might be a narrowing or ridge in the bone hole that was pinching or constricting my nerve in some way. Everything looked good and this area did not require treatment.
I had 4-3/4" incisions on the top of my forehead in order to treat the orbital nerves. One-1" incision on each side of my temples to treat the zygomatic temporal nerve and a 3" incision on the back of my head to treat the occipital nerve. The decompression of the nerves was all done through these small incisions. The incisions on the top of my forehead and on my temples were all closed with dissolving sutures and surgical glue. The bigger incision on the back of my head required 9 staples. All of these incisions are hidden in my hairline and unless I tell anyone about them, they are invisible.
I remember waking up very confused.
"I can't find it" I said to the nurse.
"Can't find what sweetie?", she replied.
"I can't find my migraine. It's gone. This is so weird", I said.
The nurse went and got the doctor.
"I can't find it" I said to my doctors.
"The monster is gone. I can't find him. This is so weird".
Then I started to cry. Three years of pain, frustration, depression, anger all came oozing out of me. It really was weird. I had forgotten what it felt like to wake up pain free. It almost felt like there was something wrong me because I didn't have pain. I had redefined my "normal" to include pain. I was elated.
Then the anesthesia wore off.
Hubby got me home and into bed. I drank a lot of water and threw up. Drank more water, took nausea meds, ate 5 crackers and took pain meds. Then sleep, sleep, sleep.
I think doctors should tell patients that "ugly" is a side effect. Both of my eyes swelled up and turned black. My left eye was completely closed for about a day. My forehead was also very swollen. It feels like a pumpkin. And I was very sore and tender at the incision sites. I also had numbness above my eyebrows which extends to the top of my head. It's the same type of numbness I'd felt with Botox, only a little more intense. But all of this was to be expected.
And yes, I got a brutal headache. It SUCKED!!! But it felt different that the normal "ice pick, vise grip, brick block" migraine headache. This one was more of an intense soreness all over the areas that were operated on. I searched YouTube for an explanation and came across this great video by Dr. Fadi Nukta. I called my doctor and he confirmed that it's not uncommon to have a surgical migraine/headache after surgery due to swelling. My doctors said that my nerves were very impacted into my muscles and were in a "corkscrew" shape. I imagine that it took some extra effort to release those nerve cobwebs from the muscle. I'm sure there was a lot of poking, prodding, jostling around of tissues. I deserved to swell up. Still, regardless of the explanation, it was miserable. Once again, I was nauseous and vomiting from pain. My doctor put me on some steroids to try and reduce the swelling quicker.
It was a week of pain meds, crackers and more sleep, sleep, sleep. But I didn't regret a moment. The migraine monster was gone, or at least hiding for now.
My eyes are back to normal. I no longer look like I got in a bar fight with a motorcycle gang. My forehead is still numb and a bit swollen, but that's OK. My eyebrows move and as each day passes, the soreness is getting less and less. My incisions are starting to itch like they are healing. My husband tells me to stop picking at the glue that is starting to peel off. Hopefully I can get my staples out this week. They're starting to get annoying.
This morning I woke up with a level 1 surgical headache. I felt so good that I took my 3 puppies for a 30 minute walk. When I got home, I had a level 4 headache and I decided to try something completely new. I took a regular OTC pill instead of the narcotic/triptan that was my standard. To my delight, it seemed to help and I went back down to a level 2 all day. The little blue container was tucked away in the back of the medicine cabinet. It even had a little dust on the lid. It was so strange to be reaching for a generic OTC aspirin instead of a prescription drug. I thought "this is what normal people do".
I mentioned earlier that wind is my nemesis. This afternoon we had gusts of over 25 mph. My migraine monster remained at bay. I had a consistent level 2 headache all day. But again, it's a different kind of pain than the usual migraine. I think it's still surgical pain from swelling an not the migraine beast. Instead of running for the bedroom with a bag of frozen peas/ice and a fistful of triptans, I actually watched TV on the couch. I think I'm going to like this new life.
I am meticulously tracking my progress on my migraine diary. This week is the first week that I have woken up in the morning at a level 1/2 instead of a 3/4. I seem to be staying at a consistent 2/3/4 level throughout the day instead of morphing into a 6/7 (8/9 on windy days). Only time will tell how well I respond to the surgery. Hopefully, as the swelling goes down, so will the pain levels. One day at a time.
Summary for Now
I've been thinking about the difference between a "cure" and a "treatment". I don't think surgery is a "cure". But I do believe it is a "treatment option". But only after a neurologist has exhausted the current standards of care (drugs/Botox, etc.).
I will never believe that I am "cured". I will always have migraine disease. However, the debilitating symptoms that are manifested by a migraine attack have, for now, been reduced without the horrendous side effects I experienced with the standard prescription medications.
I want to stay optimistic while continuously tracking my progress as time passes. I'm so excited to see how I'll feel a month from now. I haven't been this happy in a while. I can't wait to start my life again.
Advice to Others
My neurologist knew nothing about this procedure. I printed out Dr. Guyuron's papers and took them to her. Her response was less than encouraging. So I took matters into my own hands and sought out a surgeon on my own. My neurologist's treatment plan was not helping me. The drugs she was prescribing had too many side effects and the Botox was too little, too late.
If you are considering this treatment as an option, discuss it with your neurologist first. If they are less than encouraging, it doesn't hurt to have a consultation with one of the peripheral nerve specialists doing this surgery around the country. It doesn't hurt to talk. There are a ton of YouTube videos and articles on this subject. Empower yourself by educating yourself on this disease and all the treatment options that are available to you.
There is always hope and you are not alone.
Which are you most sensitive to?