HI AGAIN LAURA, THANK YOU SO MUCH FOR YOUR REPLY. I UNDERSTAND MY DETAILS HAVE BEEN SENT TO YOU. SO DO YOU HAVE MY PRIVATE EMAIL ADDRESSES AS I CANNOT WORK OUT IF YOU HAVE THEM OR NOT I AM NOT IN A LOT OF THIS WEEK AS LOTS OF MEDICAL APPOINTMENTS. SO AM LIKELY TO MISS ANY PHONE CALLS YOU MIGHT MAKE WHICH WOULD BE SUCH A PITY. IF YOU HAVE MY EMAILS ADDRESSES IT WOULD BE LOVELY TO HEAR FROM YOU THAT WAY IF YOU HAVE TIME TTO DO THIS. LOVE AND REGARDS, HOPE YOU ARE KEEPING WELL AND PAIN FREE, SANDY
Hello Laura
Great to hear that your surgery was a success. Are you still painfree?
You mentioned that they cut your "nervous intermedius", I understand that this is part of the facial nerve. Did you have any problems from this? Did they realy cut your trigeminal nerve? How does that fell afterwards? Numbness? any problems speaking or eating?
What were your original symtoms that where leading to this surgery? Only GPN? Any facial pain?
All the best
Michael
Hello Michael,
I am still pain free and have no problems from the surgery at all. I had GPN and GN. I did not have facial pain. My pain was in my left ear and left throat/tonsil area. They decompressed by 5th, 9th, and 10 th cranial nerves and cut my nervous intermedious. I have no numbness or anything…no problems at all.
Please ask any other questions you have:)
Laura
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Hello Laura
Great to hear that your surgery worked and that you are still pain free.
What is the "nervous intermedious" good for and why did the cut it?
I do have this pain in the ear aswell and it most probably comes from the teflon sponge they inserted during my MVD of 9th and 10th cranial nerve.
Thanks
Michael
Laura, I'm newly diagnosed (yesterday) and also think I have geniculate symptoms. I've had it for 5 months - it has been hell. I'm so glad to hear you had a successful surgery! I'm hoping to get into to see a neurosurgeon at Emory here in Atlanta soon. I'm concerned that he / they may not work on geniculate type stuff but I'll see soon. In addition to heavy tongue and throat pain / spasms, I've got ear , around ear, eye, jaw, head, etc pain - heavy salivation, swallowing issues, teary eyes - all mostly on the left side but some on the right side - tongue pain is mostly on right for some reason. Also have a C1 transverse process articulates with left occipital. I'm on tegretol now I'm getting an MRI on the brain next Thursday and hope to see the neurosurgeon shortly after that.
good luck to you all - thanks!
Michael as far as I can tell the nervous intermedious has no real purpose other than to cause ear pain. I don’t miss it at all or notice one thing different…other than no pain.
Eddie it sounds like you might have GPN, trigeminal neuralgia (TN) and geniculate neuralgia (GN)…a trifecta of hell…my only advice is to see a neurosurgeon that specializes in surgery for these…NOT a jack of all trades neurosurgeon.
I wish you both luck.
Also please keep in mind that usually nothing will be found on the MRI. The MRI is used to rule out other causes such as MS or a tumor. Nothing was ever found on my MRI’s. A neurosurgeon who specializes in this knows this and will do surgery based on symptoms.
I have to agree. Although the reason is the person reading it might know what to look for. My 2007 MRI was read as negative but my neurosurgeon saw the tortuous vessel in 2012 causing at least part of my GPN...
Laura said:
Also please keep in mind that usually nothing will be found on the MRI. The MRI is used to rule out other causes such as MS or a tumor. Nothing was ever found on my MRI's. A neurosurgeon who specializes in this knows this and will do surgery based on symptoms.
Any scan is only as good as the person reading it. My neurosurgeon at UPMC who specializes in GPN also looked at my MRI and saw nothing. I was really hoping that my earlier MRI’s were just read by someone who didn’t know what to look for. I was terrified going into surgery not knowing if they would find anything…actually thinking they would find nothing because nothing ever showed up. My last MRI was done at UPMC the day prior to my surgery. They told me it was extra specialized to look for problems I may have, although they never mentioned another name for it. It showed nothing.
Great info - this Emory Neurosurgery dept is supposed to be good - but I fully agree that a specialist is the best route. This guy I'm seeing does list MVD as a specialty but also does other types of surgery. I want to get it done soon - I'm concerned that it is getting worse ..but I want to pick the right surgeon also - I'm going to look around - I'd love to see Horowitz if I can figure out the logistics. Thanks so much!
At least he lists MVD as a specialty! Your surgeon may be great. See how you feel after you talk to him.
If you do try to see Dr Horowitz the last I knew he had left UPMC and is working out of Butler Memorial in Pittsburgh. Also if you haven’t already you can google him and find his utube videos doing the same surgery I had. It was under Dr Michael Horowitz UPMC MVD or some mix of those.
I don’t live in Pennsylvania so getting there was a bit of a pain , but well worth it.
http://pabrainspine.com/about This is Dr Horowitz's new link. I'm going to put in a request to speak to his staff asap. So, it looks I'd need to go two or three days prior to surgery then stay in hosp / hotel for a week after surgery? I'll consult with this Emory doc - but if he doesn't cover all the cranial nerves / geniculate , etc , I'm going to opt for Horowitz. I can't risk having serious problems due to an incomplete surgery.
Laura,
I sent Dr Horowitz an appt request. What all did they ask for when you sent up your appt / surgery? I've got a referral neuro at Emory if I need it.
Thanks so much !
Eddie
Eddie,
At the time he was at UPMC and I emailed him on a Thursday night before Labor Day. His nurse Lois, who is still at UPMC, emailed me back the next day and asked some questions about my pain location. I was desperate for help and even though I was having attacks of pain every other minute and could barely talk I called her instead of email…her number was in the email…shockingly Lois answered the phone and I explained my pain. She said I had both GPN and Geniculate neuralgia. This was the first I had ever heard of GN. She explained the surgery and asked if I wanted just a consult with surgery to be set up if warranted at a later date or if I wanted a consult with potential surgery a couple of days after…WOW! I was impressed. I took the consult only appointment because I was so shocked that after 12 years of nobody taking my issues seriously or doing much for me to be like ok here is your potential surgery date…anyway …she just had me describe the pain, asked how long I had had it. Mind you, I am writhing in pain, choking, gagging, at times unable to speak, and crying through this conversation. Monday was a holiday and she had me in their office for the first appointment Tuesday. I didn’t know how I was getting there or where I was staying but I said I would be there and I was. Dr Horowitz and another neurosurgeon looked at an old MRI disc I brought. They interviewed me. Did a very minimal exam. Sent me down the hall to an ENT just to rule out anything else…he saw my and did a quick throat scope and sent me back. Then Dr Horowitz Asked extensively about my pain. What does it feel like? How would you describe it? Where is it? Exactly?? Tell us exactly. I could barely speak without the pain. Was taking 2600mg of tegretal a day, Xanax, and my friends Ativan…I told him that too…I said I am turning into a drug seeker and am taking other peoples meds…me who never even had a Tylenol for the birth of my kids…I said “it feels like I am being murdered all day long”…he said " there are many ways to murder someone Laura…how are you being murdered"? I said that I am being stabbed on my left throat, tonsil, and ear…he said he would do surgery but could guarantee nothing and I could end up deaf on my left side, unable to swallow, etc etc…and may be no better or worse…I said I don’t care please try something…he then Lois in who said he was away the following week and the appointment would be after that. I told her to tell him I would die from pain by then and could he please skip his vacation??? I was joking …well not really. She left to set up the first available appointment and came back laughing …she told him what I said and he told her to set me up for his week off and he would be there. My appointment for consult was on Tuesday and my surgery was the following Wednesday. I just love him! Lois too. Absolutely awesome.
What an amazing story...inspirational. This is such great info !Your story and everything I've read - including some bad outcomes - suggests that the only chance at real improvement - and not to fall into the drug/pain management spiral - is through surgery. I'm in the same mental place you were when you went in - and, now that I've made up my mind to have it I'm going to push to have it asap. I'll get on a plane tomorrow if they will do the consult and surgery this week.
I can't thank you enough Laura - I may have some more questions - thanks again!
Eddie
Don’t hesitate to ask. I wish you the best of luck. I went into it fully aware it may not work, but knowing I had to do something. I also knew I was in the best place to be with an expert neurosurgeon. If things didn’t work at least I gave it my best. Feel free to contact me at any time.