Hi my name is clair and I have just joined.
I am 6 days post op for Geniculate Neuralgia.
I have had the pain for 6 years and could not get a diagnosis until I sent my notes to America.
I went to Pittsburgh for the surgery as noone in England would touch me.
I ended up having surgery twice.The first time the surgeon said he moved and padded loads of blood vessels from nerves.He said they were bigger and more of them than he had ever seen before.The nervuus intermedus was tucked under the 8th nerve and all of them were squashed together maming it hard to get to but as he had done so much he hoped that would be enough and woke me up/The pain was horrenndous I cannot even describe it.I was screaming in pain.The surgeon explained if he went back in I would definitely lose my hearing without a doubt as the stem cell test showed damage even with water touching it.I didn't have any choice and thought hearing loss one side is livable with so he went back in.
When I came round from the second op the ear pain had gone and despite feeling like I had been hit by a bus I was over joyed.
20 hours later it came back.
I am now left with 100% hearing loss on left side.Difficulty in swallowing food and have to wash anything down with water or I choke.Left sided facial weakness, severe double vision which means I cannot even walk unaided as I am very dizzy and wobbly.It is very hard to focus on anything and when moving everything is jusst a blur.
I have been told all symptoms apart from hearing loss should improve within 6 months but I am so scared it is untrue.
Has anyone else had MVD and had these problems and come out the other side cos I really would love to hear from you.
I feel so lonely and despite family telling me it will get better I just want someone who understands what I am going through.
Thanks in advance
Clair x

Hi, Clair.

I had MVD done a yr ago (also in Pgh). I didn't have the problems that you are going through (other than the "hit by a bus" feeling). I did, however, want to tell you I'm sorry you are going through so much right now!

Hang in there!!!

At least here for support

B-

Hi B thank you for your post it means a lot.
What did you have MVD for and was it successful?

I have had 2 MVD surgeries in the past year. the second in Pittsburg. I believe that the Dr in Pittsburgh are the best and most knowledgeable on TN. I would trust their opinion and as hard as it is wait.
IMy first MVD was only successful for less than 8 weeks. the second MVD found I needed more padding at the outer limits. my TN seems to be better. My experiences with both these surgeries were totally different. my recovery from the first was much easier even though the TN pain came back My second MVD was much harder, had much more pain, had excess air in my head ( no air head jokes please) and the front of my tongue was numb. the numbness did go away over several months and the sever head pain did go away over a period of weeks.
I feel my second surgery was done very well. MVD are big surgeries and really do take time for your body to heal. it is a very scary thing to not know. listen to your body, rest and try to take it a day at a time.
MVD are not without risks and sometimes even the best can't prevent some of these complications. I also had severe pain in the back of my head that was constant after my first MVD. I had a third surgery to look at this and my occipital nerve was shredded. They think that it got caught in the retracttor during first MVd and no it was not done in Pittsburgh. I don't blame anyone for this. it is what it is and was a risk. I now am getting ready to have a 4 surgery in 2 weeks to have a stimulator unit placed to help with this pain.
Do not give up hope, I truly believe their are always options and I do trust the dr in Pittburgh. you are in good hands
easygoing

Thought an update was necesssary.
Since last posting things have not gone so well.
I was discharged from hospital and apart from the side affects listed above and the expected surgery soreness I felt ok.For three days I was pretty good and even ventured out all be it in a wheelchair because of the vision problem.I was still getting shocks of pain but the pattern of pain was different and there was times where I had no pain which was a first in 6 years so I was feeling pretty positive.
Three days on I started getting an excrutiating headache and during Sunday night it was so severe I woke up unable to move or alert my husband and just lay crying with the pain in my head.Morning came and I was taken to ER where I was given a lumbar puncture and the pressure was extremely high.They drained some off and gave me a cocktail of drugs and eased the pain a little but to cut a long story short two weeks later I am still in hospital and it turns out I have had a small stroke. I have a lot of left sided weakness mainly in my leg so am waiting to go for two weeks in house re hab.
Baring in mind I live in the UK and I was meant to be in the US for 10 days and I am now in my 5th week this has been a bit of an emotional ride.
I have an 11 year old daughter at home and it has been so hard fro her to understand too.
Easygoing my surgery was actually for Geniculate neuralgia not TN but obviously still MVD hence the reason I posted here as GN is pretty rare I cant find anyone who had the surgery.
Are you not scared having so many MVDs?When do you decide enough is enough. Please don't take that the wrong way it isn;t meant to be judgmental just a concerned question really.
You say the occipital nerve was shredded so what affect has that had on you?Head pain I guess.
My NS said there is no more surgery he can do as he has cut the nervuus Intermedus so that is all that can be done.
It is good to be able to talk to people in a similar situation and know you are not alone in one way but in another it is sad to know there are so many people out there suffering this awful pain.thanks for the support and lets hope rehab can get me back home soner rather than later x

Sorry it has taken me so long to reply and also I can't even put into words for the emotions I feel for what you are going through. I have not posted because I live on the I near banks of north Carolina. this is where the hurricane Earl glanced. they expected it to be fairly nigh storm so I had a lot of preparation to do. we have 2 boats which had to be taken out of water and everything secured on dock, around house.... we were lucky, the storm petered out and it was nothing really. have lived on coast for years, so I am used to this, just takes a lot of work.
about your questions. My ON pain feels like TN kind of, but in back of head. my pain starts at base of neck and runs like a rams horn and into my eye. I have constant debilitating pain. it feels likeI have a steel bear trap clamped I to my head and it is just gripping away. I get sharp stabbing pain and shocks. it is with me 24 hrs a day and never stops. I also get pain thru my left eye, which they say that pain is probably like cluster headache pain. it comes and goes on and off all day long. the pain is so severe, it makes me nauseous and I occasionally throw up from it. I have a hard time eating and in the past month it has been so bad, I have lost 20 pounds. I cannot afford to loose anymore weight. I have not been able to eat so far today from pain, keep throwing it back up.
I am using a high dose fentanyl patch and percocet for break thru pain. I have been thru all the anti seizure drugs and anti depressants and none of them work any longer even at the max dosages. I am 46 and can't move without the narcotics and with them I can barely function and then only some of the time. I cannot live and that is what keeps me trying to get better. it is a very hard decision and a very scary one. I do know the risks and know I do have a chance of having your problems, but eternal optimism, horrid debilitating pain and not being able to function keep me trying.
I have had a total of three surgeries. my first MVD was not very bad considering it was brain surgery, but I was left with the shredded nerve. my second MVd was harder. I woke up with intense head pain and they discovered I had excesst air trapped in my head. I was ordered flat on my back for days with oxygen in the hopes that it would dissipate the excess air. it was really horrible. I could have had a lumbar puncture and then I had a 20 % chance of having to have a bleed. I choose to wait it put and see if ingot better. it did go away. took several weeks.
the second MVD left me with no more TN pain. I had a third surgery to explore my occipital nerve and find the cause for the Intense pain in the back and side of head. they discovered my nerve shredded, probably from the retractor. I did not have thes first MVD in Pittsburgh. The Occipital nerve was shredded in the first MVD.
it has been 4 months since my third surgery. I came home and decided to see if the pain got better, if I could treat with drugs.... the usual nerve drugs no longer work at all. the strong narcotics take about 20% of the top pain off at the most. the pain is not getting better, it is getting progressively worse. I also wanted to look at my different surgical options, the different surgeons and try to make an informed choice if I did another surgery. I have had help from a dr here in my home town to try to figure what my next step would be.
I had a choice of having a stimulator implant, which is not as invasive as MVD. it may or may not work. I do not like the idea of something in my body and having the leads... it also will not end my pain, but may make it small enough to be able to function. I had a choice of 2 dr I liked, one in Arizona and one it Pitt. this is all they do. stimulator implants and they concentrate on the occipital.
my other option is where they go in at the c2 and crack the spine and get to the origin oft the occipital nerve and basically cut it. the statistics for this surgery is 90% success and 10% with the pain the same or worse. my surgeon for this said these are not the worst odds, but not the greatest either. he was very honest with me and gave me people to talk to that have had both outcomes to speak directly with. it is a rare surgery and they only preform it couple of times a year.
when I came home in April, I really had hoped to adjust, the nerve to calm down and be able to live with meds, but I cannot. if I do not take the narcotics, I really cannot move the pain is so severe. I understand your story of laying, holding your head, crying and not even being able to talk. that is what it is like for me as my pain meds wear off. I do have occasionally better days, but these are still horrible. I continue to try to keep putting my foot in front of the other and trying to stay a Fu crooning human being.
I have chosen to try the stim implant and leave for Pittsburgh on Sept 6. I will be there for at least 2 weeks if everything goes well. I am very aware of all the complications I could have, even from just another surgery, but I feel I have no choice, but to try something. I also know I could regret it. I am sure you wish you could take back having ever come to America.
I am so sorry for the loss that you have had. I hope that things slowly get better and the pain reduces. I will be in Pitt until Sept 20. I would be glad to meet with you, if I am able. it can be very nice to talk and see someone who understands. Also, please continue to update us.

Easygoing

easygoing - hope your surgery has gone okay and that you will get some major relief.

todd74 - I had MVD a month ago for GN. During the surgery it was also discovered that I had TN as well. I've had no pain from either since the surgery. But my voice has been very hoarse since, and I also have problems swallowing food. Like you, I must was every bite down with liquid or it simply does not go down. I have actually had a couple of scary moments from this.

I will pray for both of you and hope that you both see some great improvements.