Update on the light at the end of the tunnel

Several months ago, I wrote to tell everyone about having had migraine surgery. I was less than 2 weeks out from it, but was excited nonetheless to have had fewer migraine days in that timeframe. Now that I’ve had 4 months, I thought some of you might be interested in an update.

In the 3 months following the surgery, I had 2 migraines bad enough to keep me home. Each was 2 days long. I was able to plan outings and actually go, and even went to see Maleficent in the theater, TWICE! And once was 3-D! (I love going to movies, but the volume has been too much for me, especially when combined with the flashing bright lights. And 3-D was a nightmare.)

While things did not work out smoothly in every aspect of life (I was fired for missing work too much during the months leading up to the procedure), the surgery was a success. I am having about 1 migraine a week, and only about 1 every 6 weeks that is incapacitating, a huge improvement from nearly daily incapacitating agony.

The surgery was occipital nerve decompression, where he removed part of the muscle covering the occipital nerves and padding them with fat from the hip. This keeps the muscle from clamping down on the nerve. I think of it like the nerves in the lower back- if you pinch the nerve in your back, your leg hurts. Once you relieve the pressure, the pain dissipates. Same here- essentially, a pinched occipital nerve caused my temples to hurt, so we relieved the pressure.

Dr. Afifi, at the University of Wisconsin Hospital Plastic Surgery department, did the work. Evidently the plastic surgeons stumbled on to this during brow lifts- patients came back saying “what did you do? You fixed my migraines!” So the doctors started to look into it. Neurologists don’t seem to buy it yet, as (at least according to my neurologist, who specializes in headaches) no neurologists have done the studies, only plastic surgeons. But I remember 20 years ago when they said the same thing about BOTOX, and now everyone admits it works. I’m thrilled my neurologist was willing to step outside her comfort zone in a last ditch effort to find me relief!

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Comments

View Comments (4)
  • Katie M. Golden moderator
    5 years ago

    THis is fantastic!! I’m so excited for you. I really appreciate that you shared the results with us.

    I’ve not had the surgery, but I’ve heard that with any surgery or treatment plan, that you have to remember that whatever triggered your migraines before the surgery will still trigger them- you just now how a higher threshold. The surgery helps you to not be as senstitive to the effects, but remember to continue to stay away from things that cause your migraines and it should make the effects last even longer in between headaches!!

    Best Wishes!
    -Katie

  • Jules2dl
    5 years ago

    That is wonderful news! I’ve been curious to hear how successful the surgery for migraine is. Did you have to go through several months of Botox treatment prior to the surgery to locate which nerve was being compressed and at what point along the nerve the compression was occurring?
    I have objections to trying Botox.
    So glad the surgery worked out for you!
    😉

  • Newdancerco author
    5 years ago

    However, I did have several years worth of BOTOX data available, from before it stopped working (it worked until I had a child, then pregnancy/childbirth changed my body chemistry and it became ineffective).

  • Newdancerco author
    5 years ago

    No, because BOTOX stopped working for me. Instead, we used nerve blocks to determine if the surgery was likely to work and where to do it for maximum benefit. The nerve block was a mix of marcaine (or something similar) and a steroid like prednisone.

    The blocks only lasted about 3 weeks, at best, but they helped figure out if the surgery was likely to work and where to do it for maximum benefit. BOTOX works for this as well, but lasts longer between treatments and requires more needle sticks. I hate needles.

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