Hi,
I am gathering more information about MVD. I was told by a physical therapist that he has seen clients who had MVDS with balance problems for years. He also said that he has seen these same people have cognitive impairment -- permanent -- with short-term memory and with the ability to recall things.
(I have these issues on the meds and they drive me nuts.)
Has anyone experienced either or both?
Thanks,
JanetM
I have had two mvd’s and while I have many issues still, it has been none of those. I only get those problems from the meds. Maybe she wasn’t working with all the information and maybe their issues were actually from medications? I went to physical therapy after my first mvd because of my horrible stiff neck and residual pain at the surgery site. No balance issues at all. Most people who are in physical therapy post op are there pretty shortly after surgery, so my guess is those patients would still be medicated anyway, and may even have some short term issues presenting. It can take up to a year to fully recover from mvd. Just my .
2 cents.
I had severe balance issues after my MVD (for about 2 months), but they resolved on their own. My neurosurgeon referred me for physical therapy to help with the balance, but I never went.
Could you please tell me about the other issues you are still having? It would help me a great deal. Thanks, JanetM
HCal said:
I have had two mvd's and while I have many issues still, it has been none of those. I only get those problems from the meds. Maybe she wasn't working with all the information and maybe their issues were actually from medications? I went to physical therapy after my first mvd because of my horrible stiff neck and residual pain at the surgery site. No balance issues at all. Most people who are in physical therapy post op are there pretty shortly after surgery, so my guess is those patients would still be medicated anyway, and may even have some short term issues presenting. It can take up to a year to fully recover from mvd. Just my .
2 cents.
I don’t recover we’ll from anesthesia and it takes several months to clear out of my system so I have struggled with that after both surgeries. My first mvd went really well. I woke up pain free, and although it took me awhile to get on my feet I was doing pretty good. I did have a csf leak about 6 weeks post op which my surgeon said was weirdly late after the surgery to get one, but I’ve always been the one to get the weird things. I guess since you have TN you can probably relate to that! About 4 months in my pain started coming back. By 6 months it was back with a vengeance and my surgeon said he needed to go back in and see what was going on. When he was in he made the decision to “rub the nerve” to try to get it to reset. Because he irritated the crap out of it my attacks have been worse, more intense, and more frequent since the surgery. My surgeon says they will calm down over time and hopefully go away altogether as the nerve heals. I’m only 5 weeks out from the second mvd. I’m pretty sure I have a csf leak again, so going back to see my surgeon’s PA on Thursday.
My current list of complaints is as follows: still having the same pain as I did post op (maybe even worse), the incision site is quite sore (I had to do pt for this last time. The physical therapist said she thinks I have this rare condition where your skin is stuck down to the fascia underneath which makes everything really painful so this may not affect others like it has me), possible csf leak (it’s small and contained under the skin under my scar), motion sickness upon sitting or standing (this has been only the past week and seemed a bit better today), EXTREME fatigue, I’m hot all of the time and having hot flashes to boot (could be my meds. I’m on even higher doses of neurontin and tegretol than I was before surgery and also dilaudid and norco), my gastrointestinal tract is a mess (happens with most surgeries plus all the meds), and my neck is super duper stiff. I think that about covers it.
I still have faith in my surgeon and the mvd. I am making an appointment with my area’s guru of face pain just to get a second opinion and make sure we are doing all the right things. For some people this surgery is a lot easier. I don’t recover well as I said so my journey was going to be rough whether my pain was cured immediately or not. To complicate things I had sinus surgery 2 months before my first mvd. We already knew I had TN, but I needed clean up from a bad sinus surgery in 2001 and we we are hoping my some magic chance that putting me under for that might stop the pain cycle. We knew it would more than likely aggravate the pain though, which it did. So in less than a year I’ve had 3 surgeries on my head, two of them were brain surgeries.
That is my story. Please don’t let my issues scare you from getting mvd. Most of the people hanging around here are here because they are still in pain. You probably won’t read as many positive stories about mvd here as there really are because they don’t need the support group once their pain goes away. I would choose mvd again in a heart beat even knowing what I know now. The other procedures damage the nerve permanently so I’m saving those for my last resort options. As long as I am young and healthy enough I will take every other option than something that damages the nerve like gamma knife or rhizotomy. If you have any questions I am happy to answer them.
Hi Janet, i have had 2 MVD ops. Both successful. Had to have 2nd one as a car drove into the back of mine resulting in me banging my head. Which moved the pad in head from 1st op. My recovery from both was very good. Only if you suffer like we do can you imagine the relief of suddenly being out of that awful pain. I had a little bit of unteadiness on my feet for probably a month after 2nd op. A bit like feeling your on a boat when your sitting down, or when i got out of a car my head took a moment to adjust to suddenly not moving. But i have to say if the TN returned i would have the op again. I really couldn't function on the amount of medication i originally was on. Everyone is different as is peoples recovery. I consider myself very fortunate to have had extremley good surgeons, and a supportive family. Tracey
Hi Janetm,
Sorry you are having these symptoms after your MVD. I asked my neurosurgeon that same question, his response was no these sx’s cannot ocurr. So what can cause these things to happen. I was told its probably from the tegretol I take. I have read the side effects of this med. and those sx’s can happen from this medication. Not sure if you take this medicine, but what I do know is that am experiencing same symptoms. I met with my doctor on Monday and said to him I wish I could come off this medicine necause of the way it makes me feel. If the medicine works thats the trade off unfortunately. I never thought after MVD I would still be taking this drug never mind increasing the dosage. I suppose there are other options of medications to try. Talk to your doctor maybe he van try another medication which may have less side effects. Hope you find what may help you. Good luck and hang tight.
My Best
Thank you for answering. I am sorry that it has been so difficult. And I hope they can get the pain to stay away once and for all. I am going to have to think if I have more questions and I appreciate your willingness to answer them. I am glad you great surgeons and a supportive family. :) JanetM
HCal said:
I don't recover we'll from anesthesia and it takes several months to clear out of my system so I have struggled with that after both surgeries. My first mvd went really well. I woke up pain free, and although it took me awhile to get on my feet I was doing pretty good. I did have a csf leak about 6 weeks post op which my surgeon said was weirdly late after the surgery to get one, but I've always been the one to get the weird things. I guess since you have TN you can probably relate to that! About 4 months in my pain started coming back. By 6 months it was back with a vengeance and my surgeon said he needed to go back in and see what was going on. When he was in he made the decision to "rub the nerve" to try to get it to reset. Because he irritated the crap out of it my attacks have been worse, more intense, and more frequent since the surgery. My surgeon says they will calm down over time and hopefully go away altogether as the nerve heals. I'm only 5 weeks out from the second mvd. I'm pretty sure I have a csf leak again, so going back to see my surgeon's PA on Thursday.
My current list of complaints is as follows: still having the same pain as I did post op (maybe even worse), the incision site is quite sore (I had to do pt for this last time. The physical therapist said she thinks I have this rare condition where your skin is stuck down to the fascia underneath which makes everything really painful so this may not affect others like it has me), possible csf leak (it's small and contained under the skin under my scar), motion sickness upon sitting or standing (this has been only the past week and seemed a bit better today), EXTREME fatigue, I'm hot all of the time and having hot flashes to boot (could be my meds. I'm on even higher doses of neurontin and tegretol than I was before surgery and also dilaudid and norco), my gastrointestinal tract is a mess (happens with most surgeries plus all the meds), and my neck is super duper stiff. I think that about covers it.
I still have faith in my surgeon and the mvd. I am making an appointment with my area's guru of face pain just to get a second opinion and make sure we are doing all the right things. For some people this surgery is a lot easier. I don't recover well as I said so my journey was going to be rough whether my pain was cured immediately or not. To complicate things I had sinus surgery 2 months before my first mvd. We already knew I had TN, but I needed clean up from a bad sinus surgery in 2001 and we we are hoping my some magic chance that putting me under for that might stop the pain cycle. We knew it would more than likely aggravate the pain though, which it did. So in less than a year I've had 3 surgeries on my head, two of them were brain surgeries.
That is my story. Please don't let my issues scare you from getting mvd. Most of the people hanging around here are here because they are still in pain. You probably won't read as many positive stories about mvd here as there really are because they don't need the support group once their pain goes away. I would choose mvd again in a heart beat even knowing what I know now. The other procedures damage the nerve permanently so I'm saving those for my last resort options. As long as I am young and healthy enough I will take every other option than something that damages the nerve like gamma knife or rhizotomy. If you have any questions I am happy to answer them.
Send a message to Red on here -- and ask him for short/long term MVD follow up data - he's got it all!