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Next step?

Posted , 7 users are following.

marilyn02195
marilyn02195

Having suffered with hemifacial spasm for at least 15years I was offered the opportunity to have an operation earlier this year.Unfortunately it was unsuccessful and my original surgeon offered to operate again,three months after the first operation.I have subsequently had a second opinion and that surgeon was very negative about the chances of success a second time.I am now very confused and would like to know if anyone has the statistics about re-do's?

Marilyn

0 likes, 11 replies

11 Replies

  • LMxia
    LMxia marilyn02195

    Posted

    Hi Marilyn,

    Sorry to hear about your situation.

    In my case, my twitching did not stop until 6 months after. Only 3 months, how did the surgeon determine it was not successful?

    After my operation ( years ago) , my twitching seemed to be worse. But I was hopeful because my surgeon told me it was successful and it would take time to heal. I am very lucky and it did stop after about 6 months. I am grateful everyday ever since.

    I hope you recover soon.

    Sincerely,

    Lisa

    • sole4mar
      sole4mar LMxia

      Posted

      Sorry to Hear that. Please visit Dr Sekula in Pittsburgh, PA. He did my surgery 7 June and I am atolladero recovering. But Afrer my surgery i Will do surgery again With him. I have spasm Free after 10 year sufering With hemifacial spasm.
    • fiona1182
      fiona1182 LMxia

      Posted

      Hello LMxia,

      I'm about 4 months out from my MVD and my twitches seem worse sometimes. Can you tell me if/when you realised your's were improving or did they disappear suddenly at 6 months?

      thanks

    • LMxia
      LMxia fiona1182

      Posted

      It was a slow improvement. But the twitch felt different than before the surgery. I don't remember exactly when I started to feel better , it's been a while. I think it's after 3 or 4 month. At the 5 th month, I felt much better, and it was completely gone after 6 month. At times, I doubted and worried and thought it was not successful, so stay hopeful. It takes time.

    • cheryl13061
      cheryl13061 LMxia

      Posted

      It will be 3 weeks tomorrow since my MVD surgery at mayo clinic in MN. I am still having spasms every 5-7 min all day but they are gone at night. The surgeon says it could get better in 6 mo to 1 year but I cannot help but feel discouraged a little. They are not as severe or last as long. Can you tell me if yours stopped all at once or just got farther apart?
  • karen56071
    karen56071 marilyn02195

    Posted

    Sorry to hear of your unsuccessful surgery.  I don't know how much research you did before going with the surgeon who did it but I feel the surgery will be only as successful as the surgeon is talented and experienced.  I did research on surgeons for a couple of years before deciding on one to perform my MVD.  However, even the most talented can have failures.  I'm 15 years past having my surgery but remember many of my online friends had re-dos, with good results.  I have no idea what the stastistics are for successful re-dos or where you could go for answers.  Perhaps some other person in this chat room has the info you're seeking.  Good luck on your decision making.
  • sole4mar
    sole4mar marilyn02195

    Posted

    Sorry to Hear that. Please visit Dr Sekula in Pittsburgh, PA. He did my surgery 7 June and I am atolladero recovering. But Afrer my surgery i Will do surgery again With him. I have spasm Free after 10 year sufering With hemifacial spasm.
  • robert78247
    robert78247 marilyn02195

    Posted

    Hi Marilyn, My name is Bob and I am from New Jersey.I endured the gradual progression of a simple eye twitch to a full blown hemi facial spasm over a time span of 3 1/2 years.. I worked with a very knowledgeable neurosurgeon from Hahnemann Hospital in Philadelphia ,and he wanted to see if something other than a major surgical procedure would tone down or eradicate my twitching symptoms but no such luck.He finally referred me to UPMC in Pittsburgh Pa. and the specialist that he directed me to was Dr. Amin Kassam (who now has taken up residence in Milwaukee,Wisconsin).The only problem was my health insurance that detoured me to a neurosurgeon in Philadelphia,Pa.. After several unsuccessful appeals I finally went along with their suggestion.I had the surgery completed and the result was a mini disaster and my condition worsened to the point where my insurance carrier saw things my way and after a 10 day successful experience  at UPMC ,the promised results have been fully realized ( a 66 to 99 percent reduction of symptoms). The takeaway from all of this is to thoroughly check the credentials of the surgeon that you are going to entrust your brain to by actually speaking to the patients on whom he has operated .Then carefully compare the risks with the benefits and then decide on a course of action that will be right for you.The primary goal of your research should be a neurosurgeon who has an EXTREMELY high success rate with "redo's".This November 11th will be 14 years for me and those little teflon pledgets are still doing their job.Wonders never cease! Well, good luck and best wishes for whatever course of action you decide on .Keep us posted.Remember we are all in this together.Take care.
    • marilyn02195
      marilyn02195 robert78247

      Posted

      Thank you Robert for your advice.I think for the time being I'm going back to Botox and perhaps in the future surgery may be more successful.

      Marilyn

    • robert78247
      robert78247 marilyn02195

      Posted

      Hi Marilyn, I just wanted to pass along to you  something that I learned in an intake interview at UPMC regarding Botox.They asked me for what period of time that I had been Botox  free because the neurospecialists want you to have that neurotoxin out of your system for at least one year so that they not only get the job done,but they get the job done right when they perform the MVD.Also,if you take blood thinning herbals and you don't pass the blood coagulating test ,they will postpone your surgery for up to two weeks. That's a real bummer because you have to psych yourself up to follow through and go on 

      with the operation and then you discover that they give you a two week raincheck until you pass the test.Good luck with the Botox.Bob

       

    • marilyn02195
      marilyn02195 robert78247

      Posted

      Hi Robert,That's interesting about the Botox being out of your system.My surgeon didn't seem o think it mattered that I'd had a treatment only two months prior to operation .To me it makes sense to be completely clear of any drug before a procedure but I presumed about three months was long enough as that's how frequently I was having Botox.Fortunately I don't take any other medication.

      Regards

      Marilyn

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