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Title: surgical repair Post by sandy2475 on Feb 16th, 2004, 2:20am I have watched this site for 5 months trying to find out if there was anything I could do to help my husband who is 57. Now I have to share what has happened to us so that all of you can re-question your physicians. About 14 years ago my husband started with the pain on the right side of his face. It would come, mostly in the winter, and then in the summer it would go away. For several years they treated him with vitamin B and antibiotics. Then he was sent to an ENT and they took out a turbinate and fixed his deviated septum and told him that would fix the problem. But of course it didn't. He lived with it the best he could - until two years ago it hit so severly it put him into an irregular cardiac arrhythmia and into the hospital with a morphine drip since the blood pressure was now sky high. He was sent to a neurologist who for 2 years has treated him first with depakote (that wiped out his short term memory so bad they changed to topamax) and prednisone. It helped but he never had relief. He was diagnosed as chronic and for the last 2 years, he has never been able to come off any medications. Last Oct. he went into a sunct syndrome and he was upped to 500 milligrams of topamax a day and 80 milligrams of prednisone per day. Even at those levels he was still not able to sleep, drive, work, eat or even wash his face without horrible pain. He was finally sent to a neurosurgeon to have the radio frequency procedure done, told he would have numbness on that side of his face, but would finally have relief. The neurosurgeon interviewed my husband for about 40 minutes and calmly said - you do not have cluster headaches - you have trigeminal neuralgia. This surgeon specializes in a procedure call microvascular decompression and that is what he wanted to do. There is a lot of information on the procedure (MVD) on the internet. The nerve damage does not show up on MRI or CT scans. On Feb. 3rd my husband had the procedure done and from the moment he woke up he was pain free. The pain of the surgery was so much less, that all he needed was 2 tylenol that day. He was discharged two days later and other than weak from 4 months of being in bed - he feels great. I normally do not get on the internet because I am not very good at it, but I know the horrible pain that all of you suffer and I had to share this story. Please re-question your physicians. If my husband had pushed harder - he would have never had to suffer like this. The one thing that the surgeon said was a tell tale sign for true cluster was that there will be family history. If there is no family history, then something else is going on. I wish all of you a cure - please do not give up. A miracle has happened at our house and I pray that you will find the same. |
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Title: Re: surgical repair Post by Prense on Feb 16th, 2004, 9:16am Outstanding news! However, the following does not seem to be true based on research so far... on 02/16/04 at 02:20:47, sandy2475 wrote:
I was just conversinig about this with someone yesterday about this very thing. Your story is precisely why there is the cluster quiz here and why we frown on self diagnosis. Unfortunately, there are docs (neuros included) who do not know the difference. Not just between CH and TN, but CH in general. I think there are many folks who are misdiagnosed with CH, just as I believe there are many folks misdiagnosed with something other than CH. Thank you for sharing this! Chris |
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Title: Re: surgical repair Post by thomas on Feb 16th, 2004, 3:39pm I am really glad that your husband has finally gotten some relief. :) |
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