I had MVD surgery on my left side Dec. 14th....12 days ago...First few days I had minor TN pain, little shocks and big headaches....then TN shocks went away....days 7 thru 9 post surgery some weird burning pains on the back left side of my tongue went on and off for three days...I have never felt this type of pain before..but it was tolerable and not shocking...the burning pains went away after three days...and now I am in my third day of ZERO TN PAIN...I still have headaches of which I simply take ibuprofen...and the surgery pain lessens more each day....but the good news is I have now weened myself from TEGRETOL...I had 200 mgs three days ago..and thats it...I already have more energy. Yesterday I walked five miles and I will do so again today.....I will keep giving my fellow TN travelers progress reports right along...
Vic: I am so happy for you. I had surgery the same day and unfortunately my experience was very different. I am still happy that yours went well. Any idea how long you were in surgery and if the time would be a factor in how long it takes to recover? I am still on so many meds I have to write it down to keep track. They gave me antibiotics at the hospital but none when I left, however I did get thrush (yeast infection in my mouth) from the antibiotics I guess. It has still not totally gone. I have had so many pains I couldn’t describe them all to you. Each day a little better but this is going along as quickly as I had hoped for. I can’t drive because of the meds and I feel trapped. I have had horrible TN pain but it didn’t last long. It would come and go. All the other pain I guess is from the surgery. Numbness in my head and left ear. One day my bottom lip was totally numb but that went away. My neck is still stiff and sore. I could go on and on about the pain. I get up and force myself to shower, get dressed and move about but then I am so exhausted that I’m usually in bed very early. I am terrified that this won’t go away. I need the pain to go away so I can get off the meds. Some of my meds aren’t related to the TN but here goes the list of what I am taking: Synthroid, Claritin, Flexeril, Neurontin, Percocet, Diflucan, and prescription mouthwash, Any advice?
Hi Cathy…I was in surgery 3 hours or so…the only drug I was on was tegretol…and tegretol after surgery…I was on a morphin drip for a short while after surgery…and then super strong tylenol…and tegretol…I had lots of normal surgery type pains and headaches along with a two day nausea bout…my right ear still feels like it has some fluid in it and the left side of my face is very numb, but it was numb before surgery from previous ballon/glycerol procedures…my advice to you is to stay positive, positive, positive…get used to being positive…your long list or cocktail of meds confuses me because I know not what most of them are supposed to do…but pain meds can cause depression and snap your energy away…your goal is to beat the pain…you have taken a huge step by having MVD surgery…now you are on the path to being pain free…it has only been 12 days…everyday you are going to get a little better and everyday you are going to be able to take just a little less amount of drugs…try not to sleep in the day time as well…as that makes sleeping at night much harder…try and walk, walk some and later walk some more to build up strength…and drink lots of fluids, tea, coffee, water, fruit juice to purge your body…God Bless
Thanks Vic! Your words were very encouraging. I am having some trouble with my memory. I couldn’t remember my PIN for my debit card today. I’ll be half way through a sentence and then can’t remember what I was going to say. I have tried to back off the meds but then I have bad pain. I am going to try today to space out the meds a little more. I have to say that I am better today with the pain. I still have an extremely dry mouth and some of the thrush is still there. I can’t really taste anything. I will try to stay positive. I really need to go back to work by the first of the year because I’ll run out of leave time. So once again thank you so much for the encouragement. I will try to stay positive. I hope you have a speedy recovery.
Hi Vic, No regeats having the surgery? I cant beleived you walked 5 miles less than a month after having surgery. Wow! I am schedule to have the MVD surgery on Jan 6,2011 Just want to be pain free and off these Darn Meds… I wish you the best of luck… Thanks Diane
Congratulations on making the decision to have the MVD surgery. I have had it twice - both times I thought I was recovered and went back to work sooner than I probably should have (within 3 weeks). I had a desk job. I don't think it hurt me, physically, but mentally, I made more mistakes at work than I normally would have.
You both need to heal in the time frame your body needs, not necessarily what the "textbook" says. You are both different people and have different needs.
I wish the best to both of you. I think you made good decisions.
Hi Diane, no regrets at for having the MVD for me...I walked miles..its true, but I took a few rest breaks along the way....I glad your having the MVD but you have to make sure you a doctor with much experience as absolutely possible with this very specialized type of surgery...that is the key to upping your odds of a successful surgery....point blank ask the neurosurgeon how many MVD's he has performed...if its a low number...find someone else..I recommend the educational based hospital to a community type one because the pool of experience is much larger....good luck and I will be your corner Diane...may your new year become pain free...Vic in San Diego
Hang in there. I am sure your pain will get better and your strength will improve. I didn’t force myself to get up. I just rested and slept as much as I could. My surgeon said that some people do have some cognitive problems although there isn’t a reason for it. My TN pain didn’t go away entirely but my medications made the pain very tolerable. I am praying you get full relief. Did your surgeon tell you that it is possible that the pain will get better with time? My surgeon told me that and it was true. I felt better after surgery but the pain continued to get better for about 5 or 6 mths if I remember correctly. Jackie said she went back to work at a desk job within 3 weeks. I went back part time in the 3 weeks and it was very difficult. I was so confused and felt overwhelmed. But I think exhaustion played a big part of that. Take time to rest as much as possible.
Thanks Liz. I sure would like to have Vic’s experience. My fear is that the pain isn’t totally gone and this has been such a difficult recovery I would be afraid to go through it again. It has been very hard. The pain is getting better each day. But the pains that shoot through my head just scare me. I can’t imagine how Vic can walk 5 miles. I get exhausted easily. I am going to try to go home today. I have been staying with a friend since I was released because I don’t have the support I need at home. I might even try to drive today. It seems like I have a good day and then a bad day. I need to be back to work some time next week and just not sure that’s going to happen. Trying to take Vic’s advice to stay positive. I’m struggling though.
Hi Vic, I am so proud to hear your good news. I had MVD surgery 4 months ago and I am still on 400mg of tegretol daily. My surgeon told me to stay on it for at least 6 months to a year and let the nerve area have time to heal. I was wondering how long you had TN before you had the surgery done? Hope you have a very Happy New Year!
Hi Linda...I had TN for over five years...during that period I had gamma knife radiation, and four balloon glycerol nerve blocks...the last nerve block was last February and I had only 4 months of partial pain reduction....my neurosurgeon wanted to do another gamma knife but would also do an MVD if I requested...but he had only performed a small number of MVD surgeries over his career. I found a more experienced MVD who operated 16 days ago..I have been off Tegretol for 6 days now...no TN pain at all since shortly after the surgery...It seems to be working out great...I keeping my fingers crossed and praying a lot...everyday I feel better and better...I wake up in the morning and my first thought is ...hey.. no TN pain shocks..and then I stretch a big big smile across my former aching face and give thanks to God...Happy New Year !
My daily prayer is for all of us to find the right treatment and./or medication and that everyone feel as well as I do now. And that those of us who are having good days, that the good days continue.
Hi, Vic , Thank you for the reply. It is wonderful to wake up and not have to worry about when the TN strikes are going to start. I am still afraid to stop my medication and I had my surgery 4 months ago. I still have some very small shock like sensations above my upper lip. It is like TN but it is so minimal it just lets me know it is still there. I also have a lot of numbness in my tongue and lips. I was wondering if you have had any of this. I am so happy for you and hope you have a Happy New Year.
Hi Linda, I don’t know if I have any new numbness because the left side of my face is and has been very numb because of the balloon/glycerol procedures…this numbness will never go away…I have no painfull facial spasms or shocks. I used to have quite a bit of aching pains sort of roll through my teeth on the left side as well but that now is history…so far so good 17 days post op…Happy New Year Linda