MVD problems
 

Hi my name is clair and I have just joined.
I have posted this in the occipital and other section but know a lot more people have mvd for tn than GN so thought might get more response.
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

Dear Clair,
I also have had an MVD, as well as another surgery to install a shunt. After my MVD, I did experience some loss of hearing, like my ear was full of water and I had to try to hear through it. The NS said that this was because the nerve to the ear contracts a bit when they work so closely to it. I don't know if this is what you are experiencing, but mine cleared up slowly over the course of many weeks. In addition, I had the double vision, very badly at first. My NS told me that the nerve to the parts of your eye that move it left-to-right are very delicate, and near the surgery site, and this is called "4th Nerve Palsy". I had it for 6-7 weeks, and that was SO scary for me - I was very afraid that it would stay. Eventually, my eyes adapted, and the nerve became less bothered, so now I only get it when I am very sleepy. Then, I see two televisions, and know that it's time to rest. I too had a difficult surgery, he found that my arachnoid layer was very scarred and wrapped tightly around everything, so he had to get it all untwisted when he was in there. It took an additional 2 hours to do, and no one came out and told my husband, so he was beside himself by the time that the surgeon came out to talk to him. After my second surgery, I again experienced very bad double vision, and again, it went away.
I hope that this is somehow a comfort to you, and I just want you to know that you are not out there all alone.
A big hug to you, Clair, and please write back if you wouldn't mind,
Lily

Hi clair, I'm being assed for an MVD I'm sorry your havin so meny problems hun. Just want to wish you luck. I'm from England so pm me if you want a chat ok. Jackie xxxxxxx

Dear lily and jackie thank you so much for your replies and sorry for the long delay in giving you an update.
Things have not been going to well in fact I am still in hospital as I type this.
Trying to cut a very long story short for you after normal discharge after the second surgery around 5 days post op other than normal post op pain and the side effects I already said about I didn't feel too bad. I had had a hearing test confirming I had 100%hearing loss on left side from surgery but other than that all other symptoms would improve over time.
Three days after discharge I got the most excruciating pain in my head I couldn't open my eyes lift my head off the pillow we called the hospital and they spoke to the surgeon who did my op and he said bring her straight in.
I've been here since.
When I got in they did a lumbar puncture and the pressure was seriously high so they drained some off and also gave me steroids and some other things.the pain improved for a while.
So again cutting it short I developed left sided weakness with my arm and leg and sensation was affected and they are saying I may have had a small stroke which isn't showing on the MRI scan they have just done a vascular scan. I also have gone and got blood clots in my leg so am on a heparin drip and all I want to do is fly home to my 11year old daughter who desperately wants her mum. We were meant to be in America for 10 days and this is the beginning of our fourth week.

Jackie can I ask where in the uk you are being assessed for mvd and what are they treating I'd it trigeminal neuralgia?
We tried every neurosurgeon possible I think but they would treat trigeminal but not geniculate.
Even frenchay in Bristol said no.

Lily did your surgery cure your problem. Your reply saying your eyes recover gives me hope cos that out of everything has been the most frightening and still is.
4weeks on still no improvement bit still early days. I have 4th and 6th nerve palsy a
But also have something can't remember what it was called off top of

Hi Clair, my name is Cheryl, I had MVD in Pittsburgh. Who is your Dr. and what hospital? I was at Allegheny General and my Dr. was Peter Jennetta, I had surgery in 05, but I still have alot of problems. I didn't go for the 2nd surgery.

Hi Cheryl I had dr horowittz at the Upmc. Was your surgery for TN and what problems did you have? I am so desperately trying to get back home and at moment but just keep encountering one problem after another. Admittedly mine is rather a rare outcome after MVD but it does show that what seemed a relatively straightforward operation can have bad outcomes.
I did look into dr janetta too but chose dr horowittz. I am still hopeful that things will be ok when all this settles down. Forever the optimist lol.

Clair,
Thanks for posting back, you have been on my mind - I can't imagine what it must be like to be stuck in a foreign country with complications. I am wishing you all of the comforting thoughts that I can muster, and pray that things improve. I also had very high internal pressure, and eventually needed steroid treatment and a lumbar drain to try to stop it from being so high. All in all 6 months of complications. Not to say that this will happen to you :eek:
In the end, the NS was able to stop the sharp shooting pains (TN1), but the trigeminal neuropathy (TN2) came back, and is still with me. That is the constant, incessant pain that will drone on for hours/days.
Wishing you the best, with all of my heart! :)
Lily

Hi Clair, Sorry for taking so long to get back to you, I hope you are feeling better. Yes the surgery was for TN, the surgery didn't work for me, I knew within days because I had pain right away. I can't always hear out of my left ear and have severe pain in it on and off. Also, around the outside of my ear feels like someone is pinching it I used to talk alot and smile alot not so much anymore I get aching pains around the jaw area hurts when I chew. My gums on the upper left side swell and I can't chew or the teeth hurt like a tooth ache. Burning cheek or feels sore like someone slashed my check with a knife. It sounds funny but my nose hurts inside and out sometimes makes me crazy (someone may ask you, whats wrong, oh my nose hurts! It sounds crazy.) Around my eye area, forehead and the side of my head at times. I may be forgetting something I'm not sure! I miss my old life, I haven't work in 2 years, I tried after the surgery but, it didn't work out. I worked as a dental asst. for about 23 or so years. On weekend and holidays I worked in one of the most beautiful flower shops in Pittsburgh! I am working on my own flowers in my garden when I feel up to it. Didn't have alot of time before. I know your feeling better now, after hearing about my mess! I take effexor rx, tegretol, and vicodin. I've learned over the years to enjoy my times when I feel half decent, and when I get up in the mornings I think what is the most important thing I have to do today. I work on that and go on to the next one. It takes me a while to get things done because I take time to rest my head sometimes longer than others. I'm here if you want to talk or know anything about Pittsburgh! Are you watching the Steelers on Sat. night? Take care. Cheryl

hello
 

sorry to hear about your plight... hoping you are felling somewhat better.. could you tell me more about your choice in doctor and medications..
kathleen:grouphug:

Cheryl I read your post with tears in my eyes as it is like reading a page from the book of my life.
Anyway 8 weeks on I am still in Pittsburgh.Ihave just finished a two week intensive rehab therapy to try and regain some movement after the stroke which affected the whole of my left hand side.
I left the hospital today so please keep praying I stay out as I have a flight booked for Sunday to go back to England.
I am going back home in a much worse state than I came but that is a chance I took and I cannot dwell on what ifs.The pain is still there if a little different in patterns.
Katie In answer to your question:
The surgeon choice was a matter of research and going on what I had read from other peoples experiences.Surgeons experience was obviously most important and two surgeons kept coming to the top so it was a choice of the two really.
I am on a new cocktail of drugs Keppra,Lyrica,Topamax and celebrex which make me feel awful but the keppra stops the stabbing pain that hits like a bolt from no where so I cannot stop taking that.The topamax is for the headach that I went back in with due to the stroke so I need to be on that for 4 months then taper it off.The celebrex is for any swelling left pressing on any nerves and the lyrica is for the constant droning gnarling pain that just never stops.Each one has its purpose but each one has its side effect and none are too good.
I feel like I am in a bubble and looking out into the real world from somewhere else.It is not an existence but I just hope it is a temporary thing until the meds kick in and the side effects lessen.
Cheryl where in Pitts are you?Is it anywhere near the hospital as if so it would be lovely to maybe meet up??
I am here until Sunday evening.
PM me if this is possible as I have no idea.
I hope you have had a good day at least and if you need to vent at any time feel free to pm me.
I also have Skype so that would be a good way to get in touch for free and be able to talk to each other.Just talking to someone in the same situation can be so refreshing sometimes :hug::hug::hug: