MVD
Posted , 3 users are following.
It really does get better. I was very depressed and discouraged. It has been a year now. At 4 months the double vision disappeared. I have numbness on my left side that is hard to get used to. My mouth is always very dry and eating is not enjoyable. I realize that I am lucky and it could be so much worse. I would never consider another surgery. They do not tell you the dangers of nerve damage before surgery. All I thought about was making the pain stop. It has but now I have other problems to deal with. I am just going to get over it and enjoy my life now. I hope you can also. Do not let it consume you.
1 like, 2 replies
maryam20950 kathy75678
Posted
Hi KATTY, I had MVD not once but twice 21 years ago, you are right before the surgery, the Doctor never say how this surgery is going to be Dangers, when I had first MVD, I've got paralysis at the left side and my TN'S pain, not it did not get better but got worse too, I was crying and asking for help. The surgeon came to me and said we should do the second MVD, and after two weeks He did the second surgery that I'VE got worse than ever. And I came home with all the problem that I've got after the surgery. my surgeon was very famous, but I NEVER forgive him, after that he was running if he sees me in the hospital he wanted to get rid of me, anyway, after that I tried to write with the left hand and every thing that I was doing with right transferred to the left side.
After few years my paralysis got better, but right side is weak, and my right hand especially with my finger I can not feel anything, after 20 years just about a few months ago, I found out, I can hold pen with my right hand, but holding is not exactly the same as 21 years ago but I can write. For my TN'S pain, I CONTINUE TO SEE PAIN CLINIC, THE PAIN IS VERY BAD, VERY PAINFUL, I am holding up, and there is no more choice, what I can do, nothing.
I finished my school with all these problems, I have a family with 3 gorgeous sons. I am trying to enjoy my life with my family, with this horrible pain.
laurel3865 maryam20950
Posted
Hi Maryam20950,
Your situation sounds very much like mine. I also had 2 MVD's by same surgeon. He assured me I will be pain free after the 1st MVD. I was completely numb from scalp to chin and with 24/7 pain in addition to 24/7 constant involuntary movement of facial nerve/trigeminal nerve twisting, pulling and spinning in my mouth, face and head. No more TN shocking pain, but this very aggressive involuntary movement with severe buring pain 24/7 left me with depression, anxiety and panic attacks (none of which I have ever experienced prior to MVD). The surgeon assured me redo the MVD will solve the situation because he believe the teflon had shifted and irritate the facial nerve. Well, the 2nd MVD made it so much worse. I had to quit my very well paying job due to no sleep, no energy, double vision, numbness, dizziness (had to walk on walker and needing assistance for approx 6 months), anxiety and panic attacks where I couldn't be alone. It was and still is the craziest thing. I used to be active and very social. Now I tend to hide from people, even close friends. Yes, the do not tell you about nerve damage or other possible pain. And I feel the unlucky statistics like us never get documented in files. I have exhausted all top notch physicians, specialists, neurosurgeons and so on and so forth in Houston. I even flew to California and Pittsburgh to see other top neurosurgeons. At this point, no one can help me nor do they want to touch me. Even Mayo Clinic wouldn't give me a consultation because they said they have never heard of a condition like mine (severe pain caused by 24/7 involuntary movement of twisting, pulling and spinning every second of every day nonstop since Sept 2014).
I am very happy for those who got pain relief from MVD, but I feel the staticstics of the unfortunates are far greater than what is being reported. Currently I am also on narcotic pain meds and they give about 30% pain relief for the most part. But some days the pain is so severe, even narcotics don't help. None of the anti seizure meds helped me. I wish you and others like us get pain free days somehow, someway. At this point, only God can help us.