Frustration after MVD

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1

I'm 25 years old and had my MVD surgery about 6 weeks ago. I was doing fine during my recovery (Only stayed in the hospital 2 days) and rested for 6 weeks before I got the OK to return to work. During my recovery,I had hints of an electrical shock in my right temple, but my Dr suggested that the nerve just needs time to heal since it has a vein touching it for all my life. The TN actually started to show itself about 1 1/2 years ago when I started a new job as a veterinary laboratory technician. I work alot on the computer and a microscope, so when the angle of my head changed to use the microscope, the pain became apparent and grew worse as the day went on. Numerous times I found myself in the ER and finally at a neurologist who diagnosed me pretty easily. I was put on medications over the year, bouncing between them because they either didn't work or the side effects were so severe that I was either put in the ER or couldn't function at all. The worst was carbamizopine (sp?), as it made my joints give out with severe confusion/dizzyness and eventually uncontrollable twitching. I also has a 2 nerve blocks performed, but they targeted my occipital never (have issues with that too) and they hoped that by silencing that nerve, the trigeminal would calm down. Needless to say, it didn't work. Finally, I saw a surgeon and had my MVD performed on March 22 2012. Like I said, it seemed to have worked - But now that I'm back to work, the pain is returning. Not as strong, which in turn allows the occipital neuralgia to rear its ugly head. I'm on Keppra 500mg 2x a day, whch helped when I was home on disability, but it's not really doing it's job anymore. Infact, I'm facing side effects of fatigue and dizzyness/confusion slightly and my hands seem to have on and off edema to the point where my wedding band hurts to wear. I was afraid that my line of work would bring the TN back on, and it seems my fear has been realized.

I'm not sure what to do. My Dr seems to outright refuse to do anything more surgical and almost looks at me like I'm lying about the pain. I'm tired of the medications and their side effects and pretty much living off of percocet to just get through it. I feel like all this is doing more harm than good and I wish he had just cut the darn thing to begin with. I'm depressed and lost. I'm only 25. Should I really have to suffer this much?

2

Hi, i know how you feel, im no where near where you are treatment-wise, ive only had TN a couple of months but the severity has grown so rapidly its upsetting, even more so when i found meds that rid me of pain but i had to stop them due to severe side effects and now being weened off them and in so much pain that cocodamol has no effect, im at a loss and my studies are suffering because of it, please know you are not alone as ive found myself asking over the past week "im 23 years old why should i be suffering like this?!?"

your not alone, take care x

3

Oh,man. I'm sorry to hear you've recently discovered about your TN. Have they found a cause via MRI yet? I have 5 MRI's during my treatment prior to the surgery and they couldn't find a cause until I actually had the MVD. I had a vein that would fall and touch the vein constantly, moreso when my head was at a certain angle or if I worked out then the electrical shocks occured with every heartbeat. Right now the pain isn't like beforev - Before I wanted to just end it because of how much pain I was in. Hopefully, if you do opt for the MVD, it'll work for you.

4

Hi Katie

I jsut had the MVD surgery April 3rd 2012 and I had a bit of small twitching right after and they said that the nerves have memory and need time to forget.. So, I did not get discourage. As the weeks went on it seemed better.. then I returned to work 4 weeks after and on the friday sharp pains starting happening in my left temple causeing aweful pain and the twitching was pulling now. My surgeon seen me right away and he seen it for him self and said wow this is not the twitching you had but pulling now.. but he reminded me nerves have memory so with the help of my husband and family I am not going to get discourage . The surgeon has ordered another MRI, Spinal tap and CFS test just to make sure nothing is wrong.. but stay positive because stressing makes it worse I found. take care!

5

After seeing all you have been through I have to ask would you still recommend Dr. Valerio at Cleveland Clinic?

6

what about Gamma Knife?