A Release Of Pain: My Migraine Surgery

So, if you follow me on Twitter or on Facebook, you know that I was talking a lot about seeing a surgeon about my migraines. The consultation I had scheduled yesterday took longer than I anticipated, and I walked out of the office with a completely numb head, and a date for when they will shave, cut and snip snip snip.

Occipital Nerve Decompression Surgery. August 9, 12:30pm.

I have suffered from migraines my entire life. As a child, I would go to the doctor complaining that my head hurt and I would be told that it was just my imagination, that I was dehydrated, that I had done it to myself. Take tylenol, take aspirin, take something that would ease the pain, but never really would. I spent days in a dark room, drapes pulled and the world cold and dark and silent trying to get my head to stop hurting.

Then, in college, I was in a car accident that turned those headaches into migraines. I was miserable, hopped up on meds trying to kill the pain. Prescribed narcotic pain killers, muscle relaxers and anti-depressants to try and make me feel better, but of course none of it worked. I lived through the pain, forcing myself to get used to it and do what needs to be done anyway. I lost more days, more events due to the pain. I even spent the night of my initiation into my sorority with a mind shattering migraine, and can barely remember the night.

Years later, my parents force me to see a neurologist in order to figure out a way to get them under control. Dr. Doty was awesome, listening to me explain what the pain was like and how horrible I’ve felt. I actually had a migraine in her office – and I was desperate for relief. She gave me Maxalt to take instead of the Imatrex I was on, and for the first time in years…something worked with little side effects. I continued to see her.

I’ve been on a plethora of medications for them and I almost always end up with them not really working long term, or with side effects that leave me worse off than in pain. But when Dr. Doty gave me a nerve injection into the back of my head, I felt relief. I would get a migraine within a few hours of the injection that would last about 4 days, but once that lifted, I would be free to turn my head and move freely without pain. It would last about three months, give or take depending on that time, and then I would go in and get another one.

A few weeks ago, Dr. Doty suggested I go and see Dr. Falluco about surgery. Since I wasn’t responding well to medications, since I still had 4 day migraines even with the meds, since they came back the next day after the medications, but got great results from the injections….we decided to see if I was a candidate for the migraine surgery. I got an injection while I was in Dr. Doty’s office (and proceeded to get a 4 day migraine afterward) and made sure to get a referral to Dr. Falluco.

Dr. Falluco’s office called me a few days later. I made an appointment for the end of the month – which was yesterday.

I was nervous sitting in the waiting room. I filled out the necessary paperwork needed by insurance and HIPPA laws, and then I filled out the migraine profile paperwork. How many days of migraines have I had in the past 3 months? 20. How many of those days have kept me from being able to function normally? 10. How many  migraine days have left me unable to visit friends and family, do household chores, or otherwise function? 5. So out of the last three months, 35 days have been riddled with a migraine so bad I have to mark it a 6 or higher on the 10 point pain scale. Not good.

And that doesn’t even take into account how I feel pain on a daily basis. On good days it’s a 2-3.

I got a full exam from Dr. Falluco and then he said he wanted to do some injections to test things out. The fact that I was coming off of a migraine on Sunday had me wary. I was sitting in his exam room, with my pain at a 3-4 that moment, coming in flashes….an injection was not what I wanted. But in order to test the nerves, since you can’t x-ray them, you have to get them. So I sign the paperwork, watch the nurse grab the needed supplies and try to calm my heart as I wait for the doctor to come back.

All I kept thinking was wow. That’s a lot of stuff in that syringe, and that’s a big needle.

During the injections, Dr. Falluco told me to let him know where I felt the pain from the numbing agent. It was a local anesthetic, which of course burns when it’s injected. On the right side of my head, I felt it go down to behind my ear and down my neck like it was supposed to. But when he did the left side of my head, the side that gets the migraines…well I felt it go behind my ear. And I felt intense burning at the injection site. Not once did I feel it go down my neck.

I laid down on the bed in the room for a while because my entire head was going numb and I felt weird. I felt like I had my glasses on the top of  my head when they weren’t there. I couldn’t feel the pull of my ponytail holder. I didn’t even feel the paper covered pillow resting I was resting on. As long as I didn’t move, I was great. I was coherent. I just…I couldn’t feel my head.

After about 10 minutes, I was walked out to file the proper insurance paperwork, hand over my FMLA paperwork, and make an appointment for the surgery. I have to call him and go in when I have a migraine so he can see what’s going on during a migraine, but the surgery is scheduled for August 9. We have to wait for insurance approval and all that, but I’ve already made the decision: no matter what insurance says, this surgery is necessary.

Nerve Decompression Surgery is simple. Imagine a water balloon with a belt around it. When it’s just a water balloon with a belt around it, and there is no squeezing it’s fine. But picture the belt being tight around the water balloon…imagine the balloon bulging around the muscle. That’s the problem. It’s not supposed to be doing that, and that’s essentially what I have going on. The surgery is just going to go in and cut that belt off so the nerve can relax and I can ditch the migraines.

Here’s the details from his website: http://www.plasticsurgeryjacksonville.com/headaches.html

So there you have it. It’s going to be crazy and awesome and terrifying all in one bundle of chaos. But the fact stands: I could lose migraines because of this. I could be better because of this. I could be “normal” and run full out, not go slow for fear of migraines. I could hold my niece with my left arm, with no fear of migraines. I could turn my head left with no fear of migraines.

It could be epic. I can’t wait.


17 thoughts on “A Release Of Pain: My Migraine Surgery

  1. charene Whorton says:

    How exciting that you may be migraine free!! I have occasional headaches and they bug me, but I can’t even imagine what you must be going through on a daily basis. Happy to hear there may be a solution for you. Wow, you’re gonna be lightening fast after this is all over!! Happy thoughts for a speedy recovery.

  2. AM says:

    Am researching occipital decompression surgery for myself, and stumbled upon your site. How did the surgery go? How is the post-op course? I have heard that you can have bothersome nerve symptoms all over your head and face for up to a year, and for a small percentage, these nerve sensations may be permanent. Have the migraines ended or improved? Would you have the surgery again? I hope and pray that you are a surgical success! AM

  3. jlloyd64 says:

    So glad this story was done! I too have suffered from migraines for over 30 years. On August 23, I too had the same exact surgery by Dr. Fallucco. Because of the types of migraines I have, I will also be undergoing another surgery to free up the nerves at the front and temporal areas. Dr. Fallucco will be doing this surgery as well. I am already experiencing unbelievable relief from the first surgery. My children are getting to know the real me finally. With their ages of 25 and 21, they have never known me without my migraines. I am beyond thankful that my neurologist referred me to Dr. Fallucco!

    • jljohnson says:

      Hi, Kasey!

      I did have the surgery, and I feel great! It’s so crazy to not have migraines. Okay, check that: I do have migraines still but in 5 months I’ve had 3, and of those three, it’s only been at most 4 days of pain. Kind of crazy since I used to have 5-7 days of migraines at a time.

      I HIGHLY recommend it. and be warned – if you are super active, recovery will take longer than expected. I thought I’d be running again just a few weeks post surgery, but it took 4 months because of the numbness and whatnot. I’ll totally take it though, given the alternative.

      Keep me posted on how you feel! 🙂

    • Dolly says:

      I know your post was a while ago but very curious how did the surgery go and if you don’t know telling me about your dr that performed it, Im really looking for relief from these migraines, thanks!

  4. Becky says:

    I know this post was from last January but I am also getting the surgery in a few months… I have a few questions for you!
    Was it really painful when you woke up from surgery? How long did it take for that numbness to go away, the full 4 months? Any other advice before I get the surgery?
    Did they have to shave your hair? Even tho that’s the least of my worries, I’m just curious though 🙂
    Please try and get back to me asap as I’m super nervous.
    Thanks!!! Glad you are better.

    • jljohnson says:

      Hi, Steve –

      Are you asking about the trigger point injections? Specifically, I had a cocktail of steroids and numbing agent injected directly into my occipital nerve to numb the pain and lessen the swelling of it. This was before the surgery. The surgery itself cut into the muscle around the nerve so that it was no longer pinched.

  5. Rachel Glasgow says:

    I’m hoping you still read comments here. I’m a 20+ year migraine sufferer…the last 8+ have been chronic migraines. I do Botox, Imitrex, Fiornal with codeine, chiropractic care…and I still suffer. I’ve only started thinking it’s got to be something specific that cause my migraines. Areas in my neck always start a migraine…laying wrong, sleeping wrong, turning my neck in a certain direction for several minutes can start a migraine…I’m exhausted. The surgery you had interests me and scares me at the same time. I’d love to talk to you more if you have the time. Thank you.

  6. Angie says:

    PLEASE tell me how the surgery goes. I to have suffered from migraines for over 20 years. I have been placed on disability due to the fact that I average 21 days a month of migraines of about 7 to 8 on the pain scale. I have injections at home to try and get me through. But, i only get 8 shots a mnth. And i can only take 2 shots in a 24 hour period. I am currently arguing with my neurologist on getting surgery. He feels they are still in the experimental phase. And have no proof of success. I am very interested in seeing if you get ANY relief. I would take even the slightest improvement at this time. Thank you for listening and I hope all went well for you!!!!

    • jljohnson says:

      Hi Angie! It totally worked for me. It’s been 3 years and now the only migraines I get are hormonal or because of bad weather. It’s a life saver and a life CHANGER!

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