My surgery for glossopharyngeal neuralgia and geniculate neuralgia!

Hello! This past Wednesday, 9/12/2012, I had my surgery at the University of Pittsburgh Medical Center done by Dr Michael Horowitz. I was terrified, but after 12 years of this life was unbearable. I woke up in recovery with NONE of my old pain…completely gone. Like a freakin miracle. I did feel like i was run over by bus, but 10 buses would have been ok. They found the problem right away. Two large vessels. Were sitting on my nerve. They decompressed the 5th, 9th, and 10th cranial nerves and cut the nervous intermedius. I had nausea chills and sweats after and was very tired. It is difficult to sleep in the hospital and I found it hard to move and get comfortable. You have to keep the head of the bed up to keep a headache away. I left the hospital Friday and am at a hotel with my husband. We have to stay in Pittsburgh until Wednesday when I get the staples and sutures out and another hearing test…they did extensive tests preop and monitor your hearing brain waves during surgery along with your nerves. I could hear fine post op but am a little muffled now due to swelling. Anyway…I am so glade to have the pain gone and now wished I had done this years ago. Please feel free to email me or ask me any questions on here. I am now a huge advovate for this surgery!

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Oh Laura I'm so happy for you, love hearing people who rid their pain! I sincerely hope your recovery has begun well and you recover quick enough to go home. Unfortunately don't do this surgery here in the UK for people very willingly :(

Best wishes to you and make sure you keep us posted on how you're doing! Amanda x

Did they add teflon ?Was there anything that showed on your mri since it wasnt a artery,what gave them the go ahead im getting mvd on nov 7 I want it tommorow but need to wait because im self employed and need to finsh my jobs Great to hear Thanks for sharing

So glad you are getting the surgery! What a difference it has made for me already. Yes, they used Teflon on the 5th, 9th, and 10th cranial nerve. When I get my sutures and staples out Wednesday I will ask more about what they found. I was a little out of it and didn’t ask any questions at the time. My MRI was done the day before and I didn’t get a chance to discuss it with the Dr… My swelling/fluid in my head/ear is getting better because I can hear better. It is kind of like I have a really bad cold and my ear is plugged feeling. I have a constant humming too in that ear that I am hopeful will be gone when all the extra fluid is gone. It is soooo fabulous not having that pain!!! I don’t care if I hear the humming forever and am deaf in that ear, but I feel I will be fine in a few more days. I am better everyday. Keep in touch and good luck:) it was scary, but the best thing I did!

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As far as the go ahead process it was so easy. After 12 years of messing around with nonsense in my hometown area i had a horrible episode and got on the computer and. E mailed University of Pittsburgh Medical Center. The nurse, Lois, emailed me back the next day. This was the Friday of Memorial Day weekend. I immediately called her and got appointment for that Tuesday at 930. Saw doctors and brought my old MRI disc with me from 2005. They just asked me questions and set up the surgery. The MRI and CT they had me do was done the following Tuesday, the day before my surgery.

Fabulous !!! I had Geniculate Neuralgia MVD surgery,at Allegheny General with Dr. Peter Jannetta. I awoke to a miracle also. I did have a couple of side effects that were temporary, but I didn't care.....the pain was gone !!!!

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Happy to hear you are doing well, and the surgery has succeeded.

I saw Dr. Fukushima in Raleigh for GPN the day you had your surgery, and he looked my MRI and said "see that? It's a big looping PICA which is causing your problem". I scheduled my surgery for October 25 at Duke Raleigh hospital. I had an attack in his office at the end of the consult. My pain Doctor had started me on Tegretol, and it has helped but I have this off and on for 6 years, and it comes and goes, this time for more than 5 months. I am ready to try something which might get me off of these meds, so I can go on with my life.

Thank you for providing some hope for those of us who are facing the same procedure.

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I am so glad you are having the surgery! I wish now i would have had it sooner. This disease never goes away. My attacks got closer together and lasted longer as the years went by…everytime it went away i was hopeful that it wouldnt come back…it always did. I really think surgery should be presented as an early option. Not years of pain and suffering before surgery. 10 days post-op now and i feel great! Not one hint of the old pain at all.

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Hi Laura -

Were you able to find out from the surgeon if he saw an artery issue in the pre-surgery MRI? I'm just curious to find people whose MRIs looked normal but still got better with surgery. My MRI doesn't show anything abnormal with my nerve - but clearly something is wrong and my pain channels are a mix of GPN and TN.



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My MRI did not show anything positive. The MRI was done the day before surgery and the surgery was happening if it did or didn’t show anything. They go by symptoms because this stuff often doesn’t show up on scans. I got my record, but the actual surgical report wasn’t there yet, so I still have to get that. They told me there were 2 large vessels sitting on the 9th nerve, but I want to read it for myself.

My MRI with and without contrast showed my left jugular compressed at the C1 and the right carotid loosely draped over the C1. I was told nothing could be done. Is it because of the location or because other things were noted which had nothing to do with the nerve. Maybe it is because of these issues which compromises surgery. Anyway, I have an appointment next month at the Cleveland Clinic. Hopefully, I will get some answers, if nothing else. Each person has to weigh what they think is best for them. I,for one, have had enough and would opt for surgery, if it is an option.

Good luck Nancy! You are going to an awesome hospital. I hope they can help you.

Thank you Laura. I am so happy you are pain free!! If you believe in prayer, please put my name on you list.

I will Nancy Jo!

Thank you so much for sharing your surgery story. I feel so fortunate to have found it. We are on the road to likely moving forward with surgical intervention for my daughter's GN, but it's so incredibly difficult to find any information. I've gotten my hands on 5 medical journal articles, but I'm struggling greatly with whether or not the risks are worth the gain and with how very little detail is out there for me to even weigh. Have you had any lasting side effects from your surgery such as tinnitis or vertigo or dry eyes?

Hello Lel!

I have had no lasting issues from my surgery. Everything was only during the recovery period and I was completely fine after about a month. The best part is that I have none of the horrific pain anymore. I am loving life. As a matter of fact I am now almost 5 months pregnant, a absolute surprise at age 42 ( 43 in two weeks). My best advise to you for your daughter is to find a neurosurgeon at a teaching hospital that is experienced in this surgery. Other people have gone other places and I can tell by what they had done it was not all that needed to be done…so their pain persists. The university of Pittsburgh medical center actually pioneered this surgery so I recommend them first. Dr Horowitz isn’t there anymore …he did my surgery, but another well trained neurosurgeon is there that has experience with this. I believe the Mayo Clinic, and others do it also…stick with these kinds of places. It is worth the traveling for the peace of mind. Please message me with any questions. I highly recommend surgery. The other treatments don’t work to completely fix the problem. This only gets worse with time and is unbearable.

Thank you, Laura. My daughter is currently going to the Mayo and we're working close with her neurologist there and the Chief of Neurosurgery. The issue we're running into is that she's so young (10) that they're very hesitant to do the surgery on a child. They're willing to though, but want to exhaust every other possibility first...which is smart and appreciated, but also incredibly frustrating because she's not getting any pain relief.

I'm so happy to hear you're doing well though and congratulations on your pregnancy!

I just really feel for her and what you are going through. After living with this disease for so long and knowing the incredible pain it causes I am hoping that she gets the surgery. She is young and will do well. A person can’t live with that much pain. As long as this is truly what is believed to be her problem, then surgery is the only cure. You can’t move vessels off of nerves with meds or other treatments. They physically must be moved and the nerves wrapped in Teflon. The meds make you tired and not yourself…although they help, they don’t cure and the pain is still there.

I am having the surgery next month. They believe I have Geniculate Neuralga Very nervous about possible side effects. Did any of you also have a facial weakness? I also have bilateral ear pain. I have been dealing with this for almost 11 months now. I see many positive posts but a handful of bad ones after surgery. Any words of wisdom?

Was your GN constant? How did it feel? Was it really painful and constant pain?