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Needing Info On Geniculate Neuralgia Surgery

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Old 07-27-2010, 03:24 AM   #1
jmurphy46254
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Default Needing Info On Geniculate Neuralgia Surgery

Greetings fellow space travellers,

I have been dealing with severe pain for a over a decade now. Been on every anti-depressant and seizure medicine possible. I have recently went outside of my healthcare system and saw a neurosurgeon on my own. The short of it is that I am being diagnosed with geniculate neuralgia.

My neurosurgeon has tried to talk me out of the surgery to fix the problem though. He says that there is a significant risk of having permanent vertigo so severe that I may not be able to walk. Has anyone heard of this? I have been trying to do research online and haven't found any mention of this risk.

He said that he usually only does this surgery when people are ready to commit suicide. Just because I chose to walk into his office instead of jump off his roof doesn't seem like a proper exclussionary criteria for surgery. He is the only one around me for hundreds of miles that even does the surgery.

Any advice?????????
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Old 08-07-2010, 02:17 PM   #2
todd74
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Originally Posted by jmurphy46254 View Post
Greetings fellow space travellers,

I have been dealing with severe pain for a over a decade now. Been on every anti-depressant and seizure medicine possible. I have recently went outside of my healthcare system and saw a neurosurgeon on my own. The short of it is that I am being diagnosed with geniculate neuralgia.

My neurosurgeon has tried to talk me out of the surgery to fix the problem though. He says that there is a significant risk of having permanent vertigo so severe that I may not be able to walk. Has anyone heard of this? I have been trying to do research online and haven't found any mention of this risk.

He said that he usually only does this surgery when people are ready to commit suicide. Just because I chose to walk into his office instead of jump off his roof doesn't seem like a proper exclussionary criteria for surgery. He is the only one around me for hundreds of miles that even does the surgery.

Any advice?????????
I am 6 days post op for GN.I had to have two MVD in two days as the first op left me in severe agony.I have 100% hearing loss on left side I have facial weakness onleft side,I also have severe double vision and am unable to walk unaided.All this and the surgery did not cure the ear pain. I have been told that apart from the hearing which is permanent all other side affects should get better within 6 months but I have to tell you I am so scared that I will be like this forever.I cannot even get up to go to the toilet in the night alone as the risk of falling is so high.
I did so much research and looked into all the risks and weighed them up and thought the chances were so low it would never happento me but I was unlucky enough to get more than one of the very low risk side affects.
Apparently my nerves were all squashed on top of each other so making it impossible not to touch or damage them.
Time will tell if it does improve butI feel very lonely and scared so if anyone else has any reassuring stories I really need to hear them right now x
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Old 09-07-2010, 09:37 PM   #3
suzel99
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Default Geniculate Neuralgia

After years of frustration and many specialty doctor visits, I have been diagnosed with geniculate neuralgia. I spoke with the neurosurgeon and neurologist about surgery but am undecided and am weighing pros and cons. I would like to know what some other ppl have done to get relief, how you manage your pain, how severe your case is, etc. Also, are you being treated at a major university?

I have never been able to talk with anyone who suffers from this so hearing your stories may help me feel like I am not alone.
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Old 09-20-2010, 04:12 PM   #4
suzel99
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Default jmurphy

Pls contact me. I have information about geniculate neuralgia surgery and have talked to a neurosurgeon at U/M. I am wavering back and forth about having the surgery however. Interested in hearing your story because I have been dealing with this for so long.
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Old 12-07-2010, 06:07 PM   #5
AmandaOttinger
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Default Mother has Geniculate Neuralgia

I read some of everyone's responses to GN. I created an account just to tell you about my mom. She has had GN for about 3 years now. She had TWO of the same surgeries in Pittsburgh and there is not a day that goes by that she is not in terrible pain. Not only is she in pain, as she was before, but she lost some hearing, and taste. She trips and falls a lot. Can hardly remember anything at all. Overall, she is not the same person as she was before. I'd advise anyone to not have the surgery.
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Old 01-02-2011, 06:20 PM   #6
YesSirMam
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My sympathies to your mother. If she hasn't already, contact TNA - trigeminal neuralgia association. Its not geniculate specific, but its the best assoc. i have found for cranial pain. The members have local area support groups that accept cranial neuralgias for what they are and need not be TN specifically. I now have friends who had the same fate as your mother - not responsive to surgery. Some 100% failure after multiple attempts, others had success after 3 or 4 tries. Most do find success after 1 surgical intervention. (those that have to resort to surgery, of course)
As a sufferer of Geniculate with a daughter, I have to tell you that you may feel worse than your mother does. GN sufferers will try about anything and accept any trade off to be rid of it. Its when all options fail that it is a real tragedy, like your mom. She's lucky to have a caring daughter as yourself. Rotten results isn't what anyone aims for, but surgery can and does offer people their lives back. My own daughter has fears of what I"ll be after my surgery (pending). Again, my sympathies to both of you, but please do not disparage what is can be successful. I do advise that surgery be only for those with maximum out of control GN.
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Old 08-01-2015, 12:07 PM   #7
Tyler2015
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Default My GN surgery story.

Thanks to all who have shared their stories, it helped me to find a DX and eventually get the right treatment. Now I feel as if life can go on as planned. I want to share my story so that it may help someone, like the stories that helped me. My story is a little different but basically the same.
I am a 36 year old male; when my symptoms started I was 34. Here is the basic time line: woke up with a swollen right eye, nothing visibly wrong, no redness, no infection, doctor was a little perplexed. The eye resolved itself and then about a week later I woke up with what I thought was an ear infection. Again, nothing that the docs could see; no redness, no infection. At this point the right side of my face was also numb, mainly around the right corner of my mouth and around my right eye.
Had first MRI about a month or two after the symptoms started, nothing was apparently wrong. At this point my symptoms where: Constant dull aching, burning in my right ear followed by episodes of an ice pick in the right ear canal which felt about two inches straight into the ear canal. Then I would have flare ups on the right side of my face, with the epicenter of the pain seeming to come from my right ear canal and would radiate outward to the right side of my face, mostly effecting my right I eye. I was then DX with Atypical TN.
After that DX I was put on a gambit of neuroblockers, with Tegretol being one of the worst. None of them really helped the pain, and made my life miserable. The only thing that helped at all was narcotics, which just took the edge off.
My new neurologist asked for another MRI and this time it revealed a vascular loop compression to support the ATN DX. I was then referred to UVA for Gamma knife. They were confident that they could relieve some of the facial pain, but none of the ear pain. I told them that the ear pain was constant and that is what I needed relief from, and that I could live with the face pain and numbness. The doc at UVA asked if anyone had ever mentioned Geniculate Neuralgia? My wife was with me, thank God, because it was such a short comment that I really wasn’t paying attention. She stopped the Doc and asked him to repeat what he said. On the way home my wife googled Geniculate Neuroglia (GN). That’s when we found other people who had similar symptoms closely lined up with mine.
From these blogs we found Dr. Gardner and his nurse Lois at UPMC. I asked my neurologist for a referral to UPMC after my wife talked to Lois and was given a tentative appointment and surgery time for about a month out. My neurologist gave me the referral and I worked with Lois and my insurance company to make sure everything was lined up. Dr. Gardner wanted a very specific MRI done which I had done in my home town and sent it to Lois.
I arrived at UPMC and they lived up to the hype. Even my mother, who is a nurse as well, was very impressed with the hospital. Went to the pre-op appointments that Dr. Gardner and Lois had scheduled for me. Then I saw Dr. Gardner; he said my symptoms were Atypical GN but he saw the problems on the new MRI. He told me that he was 90 to 95 percent confident that he could relieve the sharp stabbing pain and he was 50 percent sure he could relieve the constant burning pain.
At this point I would have tried anything, so I said let’s do it. And two days later I went into surgery. I decided not to look at the surgery on youtube, but my wife did and there are many videos, but for me it was better not to know all the details.
Anyway, I woke up from the surgery in more pain than I could have imagined. My neck felt like I had the worst whip lash ever, and then a MMA fighter was putting his knee on my neck. That lasted four days. Now I am about two weeks past surgery, and the results have been AMAZING. No sharp shooting pain. Little to no constant pain, which is very livable and seems to continue to get better as the ear fullness goes away. The ear fullness was a result of the surgery which they warn you about beforehand and the say can last up to approx. 6 weeks. My ear fullness is almost gone, my energy is getting back to normal, and discombobulation is almost back to normal and only brothers me if I push myself too far. I have been walking the track a lot. I feel like my hearing is the same as before. For the first couple of days my hearing would cut out just for a second, like someone pushed the mute button, but that only happened for the first couple of days and I was told it is very common. I truly feel in a week or two I will be back to 100%, which I never thought possible.
From the first symptom to surgery, the process was over 18 months. I read on here before that someone wrote never to give up. I thought that was kind of BS, and was feeling hopeless at times. But thanks to my friends and family, especially my wife, they wouldn’t let me give up and now I am very optimistic for my future. So, take it any way you want, but you shouldn’t give up. I know for the others out there who have suffered for years+ that is going to sound like BS, but they are making new discoveries every day, and they don’t fully understand everything yet. For example, one of the reasons my docs were so confused was my symptoms were affiliated with face pain and numbness which I was told are completely different nerves and that there was nothing in common. Well guess what? I now have no face pain and no numbness since right after the surgery; in fact it was the first thing that was noticeable to me.
Sorry for the long post but I wanted to help, like so many of your posts helped me. Take care and good luck, Tyler.
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Old 08-01-2015, 05:29 PM   #8
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Hey Tyler,

Congratulations to you and your Surgical Team on a successful resolution to a terrible problem. Being a TN/Neuropathic Facial Pain/Paresthesia sufferer, I know what you were going through. May your recovery be swift and complete.

For those who come after us, seeking information on the same issue, I want to thank you in advance for sharing your inspirational story.

Dave.
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Old 06-03-2018, 08:45 PM   #9
greydawn
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Quote:
Originally Posted by jmurphy46254 View Post
Greetings fellow space travellers,

I have been dealing with severe pain for a over a decade now. Been on every anti-depressant and seizure medicine possible. I have recently went outside of my healthcare system and saw a neurosurgeon on my own. The short of it is that I am being diagnosed with geniculate neuralgia.

My neurosurgeon has tried to talk me out of the surgery to fix the problem though. He says that there is a significant risk of having permanent vertigo so severe that I may not be able to walk. Has anyone heard of this? I have been trying to do research online and haven't found any mention of this risk.

He said that he usually only does this surgery when people are ready to commit suicide. Just because I chose to walk into his office instead of jump off his roof doesn't seem like a proper exclussionary criteria for surgery. He is the only one around me for hundreds of miles that even does the surgery.

Any advice?????????
Is your doc in Indy?
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