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I have undergone mvd surgery just over 6 weeks ago to rid of my left-side hfs but the spasms are still present to date. I am not sure if they would disappear eventually but I hope to get my surgeon's opinion when I see him at the end of the month, and also to find out exactly what was done during surgery. I have found the comments by members of the hfs association very helpful and copied below comments by those sufferers who were spasm-free only some considerable time after surgery.
My spasms were actually worse for the first year after surgery. I continued to have Botox for the next two years, but was finally able to go without them as it appeared my nerve was beginning to heal itself. I don’ know if others have followed as long a relief period as I have, but I am here to testify that my recovery is now almost 100% after over 4 years. I had considered a second MVD, but the first surgery had many complications and I just could not bring myself to think about even running additional tests to see if a second MVD was warranted. I count myself blessed that just waiting did prove to be all I needed to do. (Steve Anderson)
Became "SPASM FREE" 18 months following MVD #2. (Steve Barone)
I had my MVD three weeks ago and still have spasms. They seemed to ease up for week after surgery but I think that they are just as bad now as they were before the surgery. The doctor told me it could take up to six months to become spasm free. I am very discouraged at this point. I thought that I would wake up and be spasm free.
Sometimes I may get slight incidental spasms while drinking hot beverages or eating, but not frequent. Completely symptom free as of the end of February, 2008 (4.5 months after surgery. (Rob Bindler)
My MVD was on 05/13/08, almost eight months ago, and I’m now “Spasm Free”. It was a very difficult surgery according to Dr. Kaufmann and he did say it could take several months. For all the members that are post-op and waiting for the spasms to stop, have patience and don't give up hope. (Allen Brow)
After 9 months of my MVD I now consider myself to be “spasm free”. I haven’t had any spasms for a few months now but wanted to wait and be sure before I said anything. I want to thank all the HFSA members as if I hadn’t found the group by accident, I probably would not have had my surgery or had contact with all the wonderful people that I have met or spoken to since joining. (Gwen Cameron)
As of 06/12/07 (mvd 06/10/04), I never really noticed when the spasms went away, it was so gradual. It is great not to have a jerky face any more. (Vickie Capps)
Now 8 weeks post surgery, although I’m not spasm free yet, significant improvements are apparent. Not surprised since I have had HFS for 25 + years. I am optimistic that things will continue to improve. (Brian Carter)
Spasms completely disappeared after a few weeks. These days I sometimes get a tingling around my eye when I am stressed, but I used to get that before HFS and many others get it too. I would not think of it at all if it were not for my history.
At this time I do not have any spasms and feel wonderful. The spasms were really bad right after the surgery and for 6 months after. Then they were completely gone for 2 months and then returned only when I talked or smiled (social oppression). For the last 3 weeks, I have not had any spasms and everything seems completely "normal". I love it! (Bonnie Driskill)
I had five offending vessels and Dr. Casey was able to reduce the lateral spread by 50% during the procedure. I was released to return home the next day. Unfortunately I was one of the 5-8% to develop aseptic meningitis a week after surgery. My understanding is the condition was caused by an allergic reaction to the teflon felt material used to pad the nerve. After being on a heavy dose steroid for a few days I developed irregular heart beats and the dose had to be reduced. I was able to return to work a few hours today and plan to return full time next week. I lost some hearing on my MVD side but hopefully it is temporary and in fact it has improved over the last 3 weeks. As far as the spasms are concerned, the only thing that I have noticed is a slight pull at the corner of my mouth occasionally. Dr. Casey wants to give both the hearing and the spasms a full 12 week recovery period before we make any judgements on either. (Steve Eiseler)
Update as of 09/03/07 (mvd 09/16/04) - It took almost 3 years for my face to calm down to no spasms, I am now "SPASM FREE. Thank Dr. Jannetta and Dr. Casey very much, you are a gift to us. (As of 09/05/06, still trying to recover. I feel dizzy and tired most of the time and still have some spasms. Had a CFS leak complication during my MVD and I believe this may have added to problems and made the healing process much more difficult. I also am suffering vertigo, loss of hearing and cognitive deficits and confusion. I have been to several rehabilitation centers for this and they taught me to cope with these complications to some degree. I’m still seeing neurologists and continue in my therapy). (William Farly)
It took 3 months after my MVD for it to happen, but I am "SPASM FREE"! YIPPPPEEEE! (Diana Fell)
Absolutely thrilled at this stage to report that I am 95% spasm free after having the op in Oct 01. Went off botox in June 2004. Spasm free after 3 years! Each year gets better! (Pamela Floyd)
Update as of 06/28/08 (mvd 10/12/06) – I have finally become “SPASM FREE”. It has been over 20 months since the surgery, but I have been spasm free for a couple weeks. I would get a spasm maybe every couple of days, but would only last for about 5 seconds. But for the last couple weeks, NONE. Everything I went through was worth the feeling I have now. Everyone is so happy for me & can't believe the difference in my face. People actually thought I had a stroke because of the way I looked. No more.! I just hope & pray that this will continue. If not, I would not hesitate to have it done again. It is worth it to me. (Mary Ann Glasco)
It took six months for my spasm to totally subside and I have been spasm free for six months. (Fred Goodhue)
After going home I got an infection on the wound and had to go back for another three days. They had to reopen the wound and clean it out. The spasms are still with me, but not as severe. The doctor said it might take several months for the spasms to disappear. Also when I woke up from the M.V.D. my voice was weak. So on 08/19/03 I was sent to another doctor (head & neck Oncology) he stuck a camera up my nose and down my throat. What was found was my vocal cord (surgery side) was paralyzed. (Martin Gutierrez)
Had MVD done yesterday. Spasm still occurring. Very concerned. Researched and found that it's very common to have spasm after the operation. Milestone to look for slow disappearance of Spasm:- 1 wk (still spasm but little less), 6 wks(almost 80% gone), 3 months (over 95% gone and 6 months (should be completely free of spasm).
First MVD had no effect, MR scan revealed another section that appeared to be compressing nerve so underwent further surgery on different part of nerve. After MVD #2, it took until October 2007 (mvd 06/01/07) until I became spasm free and life is wonderful!! It took a while to fade away but I'm now confident that the spasms have stopped.
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