Surgery relieves 15 yrs of Transformed Migraine

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Mon, September 29, 2008

I am writing because I have had severe migraines for 15 years that started after a car accident. I have been on 30 different medications, with very limited success. The migraines have been daily for several years. I have seen top headache docs all over the country. I even was hospitalized in Lahey Hitchcock Clinic and was hospitalized 3 times at Diamond Headache Clinic - a clinic that sees patients from all over the world and is world renowned. I was always compliant with my medications and suffered the side effects in a desperate attempt to get relief.

Last year I heard from a fellow migraine sufferer whom I had met at Diamond. She

had been to a neurologist named Dr. Pamela Blake who told her her migraines were caused by occipital neuralgia. She did a series of nerve blocks on her and determined that she was a candidate for occipital nerve decompression surgery. (The occipital nerve is a large nerve the runs from your spinal cord up the back of your head. There are two of them, one on each side of your head). She had chronic daily migraines. She had an outpatient migraine surgery that is outside your skull. She awoke without a migraine! She has continued to do well, with just a rare easily treatable migraine. She was like me failing multiple attempts to get control of the migraines without success.

I have seen Dr. Blake, and she is absolutely wonderful, she determined that my daily migraines were also caused by occipital neuralgia. I am a neurology physician assistant, and my headaches appeared to be classic migraines. I had no symptoms of what neurologists would say was typical of occipital neuralgia.

I have had occipital nerve decompression surgery by Dr. Dellon a professor of neurosurgery and plastic surgery at Johns Hopkins in Baltimore. The surgery was August 20th. I am 70% better and I continue to improve. I worked a full week this past week!. I have spent large chunks of time in the last several years not working and its been five years since I have worked a full week. The docs say to give it 3 months to see the full effect of this surgery.

I am now on a mission to spread the word about the diagnosis of occiipital neruralgia. If you have intractable migraines, please discuss with your doctor whether or not occipital neuralgia may be contributing.

Do it, Do it for yourself, Do it for your loved ones.

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Tammie

10/ 1/08 7:57pm

I have been to 3 major hospitals, and 4 top neurologists. I have had the migraines for 5 years with no days of relief. I have done the 4 week detox, biofeedback, phychologist thing twice. No help either time. I am told I am nonresponsive to all of the medications out there. I fall down, blackout, loose vision in my eyes, and spend a lot of time in bed. I have found nerveblockers do not work. The onlything effective is pain nedications. I am from Pennsylvania, and my doctor today said to go to the Hospital in Chicago, Diamond something. I am not sure what they will do there so I googled it and saw that they do the biofeedback and same routine as I have done in the past. What is the surgery you are talking about? Is it something different then I have mentioned? I am to the point I just wish I were dead, and have no where to turn. I would love if you could let me know. I have also not worked in 5 years, and I wish I could just have one day with no migraine. I am lost and really hope that you could help to imform me of what is working for you. I am going to try botox on tuesday, but they say they are almost convinced this is not going to help me, but no doctor will see me. I also had a stimulator put in and that almost killed me.

Iammelanie

10/ 1/08 10:11pm

Tammie,

DO NOT GIVE UP. Continue to do the biofeedback. Continue to ask for answers. I can not diagnose you by email. I can say that the physicians at Diamond Headache Clinic care deeply for their patients, a good headache doctor never gives up on their patient. Go to a headache clinic, there are other headache clinics that are closer to you, such as Jefferson in Philadelphia (good docs -- but very rude staff in my experience) and Clinics in NYC. If your doctor clearly tells you that they don't think a treatment will work for you, then they are far from being a good doctor. YOU MUST ALSO BELIEVE IN THE TREATMENT, YOU MUST ALSO BELIEVE YOU CAN GET BETTER. IF you read nothing else about headaches -- remember that. BOTOX has worked for scores of patients like you, patients who have tried multiple other medicines. Start telling yourself that you will find the right doctor, you will find the right treatment and that you are beginning to heal. Tell yourself this over and over and over and over.

Be open to what your doctors tell you. If they believe you are depressed, than seek care for the depression. If they believe you are not giving medicines an accurate trial, then hear them out. If they believe you are seeking controlled pain medicine than tell them you will sign a pain contract with them. Ask them why they think you are resistant to all medicines. Hear them out. They very well maybe jerks, but they just might say something you need to hear and even still be jerks.

Your note says you are falling, you need to know why you are falling. Ask your doctors to deal with one issue at a time. On one visit the falling. On the next the headaches. Unfortunately doctors in reality do not have enough time to spend with patients. When you go to thedoctor ask them to evaluate your occipital nerves for tenderness to see if you may be a candidate for local nerve blocks, botox injections to the nerves, or down the road surgery.

Hang In There, you are not alone.

Surgery relieves 15 yrs of Transformed Migraine

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