Chronic Migraine Sufferer since 13 years old/Received Successful Nerve Decompression Surgery

In between my worst migraine growing up at first it was only once or twice a year. I would suffer other migraines that my mother took me to doctor after doctor, neurologists, eye doctors, tests, finally the last neurologist referred me to a psychiatrist because really there had to be something mentally wrong with me (this was when I was still a teenager). Over my lifetime (now 47) I have had hemiplegic migraines, and migraines from all of the following: hormones, barometric pressure, rain, snow, stress, excessive heat, excessive smells, and sinus infections.

I have read many of the posts below and been on many of the medications mentioned. I am still weaning off my Topamax; However I have not had to take a narcotic since my surgery on April 1st 2014. I posting this so those of you with the Chronic Migraine Suffering know there may be another option. My surgery I had the nerves over my eyebrows, temples (temporal) and my greater occipital decompressed. I have not suffered a migraine since. Even the outpatient surgery is less pain and suffering than my migraines.

Happy to answer any questions anyone may have if it will help any fellow sufferer.

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5 Replies

  • Hi really interesting and thrilled for you. what exactly was involved in the surgery?

  • I'm also curious about the procedure. The Migraine Surgery in Harley Street, following Botox tests for suitability, will remove the muscles over the eyebrows (corrugator muscles?) but that doesn't sound like decompression. Unfortunately, I didn't respond positively to the Botox injections so I was not deemed suitable for the surgery. After 65 years, I am getting as many migraines as every - several every week! I'm eager to know what decompression is!

    The Migraine Centre has suggested Greater Occipital Nerve block injections as a possible help for me but as I have not yet heard of anyone having any success with these injections, I'm hesitant about wasting money on them.

  • I'm a cluster headache sufferer. Do you know if the nerve decompression would work for me? I have had some success with Occipital nerve block injections but don't like the side effects (losing hair moods etc).

    Did you have this treatment on the NHS and who referred you for it?

    Thanks for your help


  • I had received botox for about 2 years with some improvement. Nerve blocks at my Occipital nerves and my temporal nerves (& over my eyebrows) did help me, however my migraines were so bad and my insurance only covered injections 1 every two weeks. For my cluster migraines I actually received some relief from oxygen treatments. My doctor sat me in a room and put an oxygen mask on me it helped at first quite a bit so I was prescribed an oxygen tank & generator.

    As for the surgery helping with only cluster migraines I cannot say. I suffered from so many so often. I found the surgery myself and the doctor was a plastic surgeon, many still consider it experimental (my neurologist did). My Primary Care Physician agreed that I needed to do something and supported the surgery decision. It is becoming more accepted, as I just received the EOB from my insurance (after paying in cash for the procedure) that they paid for it. If you Google migraine trigger surgery or migraine nerve decompression surgery you can find the pros and cons to it and the full medical history. I myself am pro for those that have tried everything else and have that "rattle when you walk" feeling from taking so many medications.

    I had all of my nerves addressed with the exception of the trigeminal nerve. This is an outpatient same day procedure. I was back to work exactly 14 days later, and it probably would have been quicker if above my eyes did not have to be done (swelling & all). My 3 month appointment is 6/4/14 and I have gone through every trigger I have. With the exception of ones I wont ingest or expose myself to. I have been given my life back even though I still feel all the spots on my arm where I received steroid shots to break a migraine they will fade.

  • Thanks very much for your reply. I will look into this (the meds didn't work for me either and I HATED topamax).

    Thanks for taking the time


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