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Spasm-free post-MVD surgery?

Posted , 5 users are following.

YKL
YKL

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.

(Don Bennett)

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.

(Simon Dixon)

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).

(Tashi Gyeltsen)

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.

(Stuart Hicken)

1 like, 23 replies

23 Replies

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  • YKL
    YKL

    Posted

    Hello,

    Thank you very much for sharing your experience with us. Dizziness is very common post-mvd surgery judging by other hfs patients experiences. In my case, the dizziness was well-controlled whilst in hospital and for 2 days after. When it recurred around day 10, I looked at all the medication prescribed upon discharge and nothing labelled specifically for dizziness. I saw my GP and he thinks the scopodum patches (to be placed behind alternate ear every 2-3 days) should stop the dizziness. I tried but it did not work. The dizziness went away on its own after 2-3 weeks. Then at my follow-up consultation 2 months after the surgery, I was told that I should have continued taking the ondemet tablets prescribed even though leaflet says it is for the treatment of nausea and vomitting, neither of which I suffered.

    Do you feel that the pattern of your spasms have changed? If so, it is a good sign that they will calm down eventually. Even if they are the same, do not despair as some patients who became spasmfree have mentioned that their condition was in fact worst for the first year after surgery. I think the process is best described as "varied and unpredictable" as mentioned in some medical journals I found on the internet. A great deal of patience is called for. The most that one can do is to request another mri scan to see whether another surgery is viable, but again medical research suggests that at least a year should allowed for.

    Please do not hesitate to ask if you have other questions. It helps me greatly to share post-surgery experience to gain a better understanding of the condition.

    Best wishes.

  • april417
    april417

    Posted

    I had MVD surgery early November, 2013. My spasms went away immediately. I am very fortunate to have found an amazing neurosurgeon. I had two nerves with determination bouncing on an artery. My spasms were severe and affected the entire left side of my face down to my clavicle. My eye didn't open for almost two years. Almost a month after surgery I ended up in the hospital. I was so dizzy that if I even opened my eyes I vommitted. My ear hadn't drained and my incision was infected. I couldn't walk without holding onto someone or something for more than a month. All side effects from the surgery. I still get dizzy and now my left eye flutters at times. Nothing too major. I get exhausted quickly and still get slight dizziness. Sometimes my scar area had a slight pain and I still have a slight site stuff neck. My doctor told me I was his most affected patient both before and after surgery. I had the worst spasms he'd seen and the worst case scenario for side effects. Does anyone have any information that might help me? How long will I have the soreness in the neck? Will my fluttering eye go away? It want until early February that I could really enjoy the spasms being gone due to my face not moving almost like I had botox on the left side and then the dizziness. I am very lucky that they went away during surgery. My surgeon spent 7 years under the doctor who invented this amazing surgery.
  • april417
    april417

    Posted

    I'm sorry demyelination, not determination.
  • bbee
    bbee

    Posted

    hello, April417, I totally sympathise with your experience, as I had hemifacial spasms for 10 years before I had the surgery. Similar to you, the spasms extended from my eye brow down to my neck and I could also hear the spasms, like little jack hammers inside my ears. After the surgery, I also experienced significant nausea. I ended up seeing a vestibular neurologist several months after surgery who referred me to a vestibular physiotherapist to help me learn how to manage the dizziness. I tried not to take medication unless I had to. I was given some exercises to compensate for my dizziness/balance. Apparently, the nerve that control the facial spasms are located very close to the balance (dizziness) and hearing nerves, so I was told, it is unusual for these neighbouring nerves not to be bruised or damaged during surgery. My surgery was in late Dec 2012 and the dizziness SLOWLY disappeared and today (14 months later), I am glad to say, I no longer feel dizzy when I turn my head. Hang in there. As for the spasms, my treatment before surgery was botox injections every 2 months, but these only alleviated the symptoms, allowing my eye to open. Since surgery, the spasm were still intense for months afterwards, but I think I stopped noticing them about 10 months after surgery. The intensity of the spasms also lessened over time. My surgeon explained the rubbing of the artery on the nerve had worn down the myelin and for the myelin to recover, it takes time. He also suggested/strongly encouraged me to take Vitamin B12, as it aids the recovery of the myelin. I no longer experience any spasms (though when I have the occasional twitch, I do panic, these these were transient) and everyone now tells me my face looks relaxed and "normal".All the best with the dizziness/balance.
  • douglas35113
    douglas35113 YKL

    Posted

    Hi

    I had MVD surgery on May 5,2014 as of today (july 6) i still have spasms.I have lived with this for about 8 years.There are times when it is better briefly but then its back.there are times when i think i should have not done the surgery.

    • YKL
      YKL douglas35113

      Posted

      Hi Douglas,

      I think 2 months post-surgery is still very early days. The consensus among all those who have undergone mvd surgery seems to be around 6 months for any improvement or complete disappearance of the spasms to show. May I ask who was your neurosurgeon?

      Best wishes to you.

    • bbee
      bbee douglas35113

      Posted

      Hi, Douglas,

      Please don't loose heart.  During the recovery post surgery, I also questioned whether I should have had the MVD when the spasms continued, but they slowly went away.  My neurosurgeon had told me to take Vitamin B12 to aid the nerve's recovery.  I had the spasms for 10 years before having the surgery, thus, the surgeon explained it will take time for the nerve to heal and become spasm free.  I noticed I no longer have the spasms around 10 months after surgery.

      All the best with your recovery.

    • douglas35113
      douglas35113 YKL

      Posted

      Dr van lovern with USF.had the surgery in tampa.He was recommend to me by Dr wilberger from pittsburgh,pa
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