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08-07-2010, 11:01 PM | #1 | ||
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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 |
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08-08-2010, 09:02 PM | #2 | ||
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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 |
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"Thanks for this!" says: | Burntmarshmallow (08-10-2010), supermoo (08-10-2010) |
08-10-2010, 06:56 PM | #3 | |||
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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
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08-23-2010, 06:01 AM | #4 | ||
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Junior Member
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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 |
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08-23-2010, 08:00 AM | #5 | ||
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Junior Member
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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.
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08-23-2010, 06:16 PM | #6 | ||
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Junior Member
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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. |
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