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MVD effects - good and bad

Posted , 2 users are following.

karen56071
karen56071

Bob - What a pleasure to hear from a MVD "alumni" from UMPC.  It was so nice of you to write to me.  It sounds like you have experienced a much more difficult time than I did with multiple MVDs and I commend you for being a survivor.  Although I had HFS for 17 years, I had a successful surgery without significant side effects.  I live in Colorado and went to Dr Kasam at UPMC sight unseen until the day before surgery.  I followed in the chat room with other HFS victims and decided he would be my best pick.  I can't say enough nice things about him or the nursing staff at UPMC.  I, too, periodically experience some familialr pulling and movement on the left side of my face, even now.  Fortunately they usually disappear in about 2 weeks

  I'm a nurse but somehow never considered the anesthesia being a cause for the larynx paralysis.  I did have a 5 hour surgery then but really haven't had to have anesthesia like that for the last 15 years.  Could the symptoms possibly just now be showing up?  I will discuss that with the voice Dr.  I am going in onTues for a procedure that will involve having a filler injected into the paralyzed side of my voice box to hopefully help my voice. It's exhausting to speak because I have to push the air thru my airway so hard to get sound out.  I'll let you know how the procedure goes.  I am wondering how difficult it will be with the left side of the voice box permanently enlarged.

Have a good weekend.

 

0 likes, 3 replies

3 Replies

  • robert78247
    robert78247 karen56071

    Posted

    Hi Karen,it's Bob from Jersey.What a coincidence ! It was none other than Dr Amin Kassam along with Dr. David Horowitz who performed their magic on me.It took 4 hours on the operating table with some twists and turns during the delicate,complicated procedure, but they were able to raise the victory flag.Both doctors have left UPMC.Dr. Horowitz has taken up residence in a nearby facility(according to Lois Burkhardt) and Dr. Kassam is doing what he does best in Milwaukee,Wisconsin.He was in Santa Monica ,California where he worked in collaboration with a Dr. James Kelly (if my memory serves me correctly)and then he made the move to a hospital in Canada and as of this date,he is in Milwaukee,Wisconsin.I didn't want to lead you astray with the long term side effects of multiple anesthesia events,because based on what you had written ,I think the scar tissue building up at the site of the teflon pledget application around the good old 7th cranial nerve is the probable cause of your voice issues.But I am not really qualified to render a diagnosis,but I wouldn't hesitate to contact Lois Burkhardt at UPMC because she did some post op research for me when I had some questions.I was really surprised that you put up with this condition for over 17 years.In my case ,the time span was 3 years,4 months and 1 week. I had gone in for my annual eye exam and when the dilation drops were administered that seemed to start the downward spiral because as I exited the eye doctor's office, wearing sun glasses ,I experienced the first of many twitches to follow.I went back to the eye doctor after 2 weeks,then my doctor who referred me to a neurosurgeon and the basic message was "Give it time,it will go away. We all get twitches." Of course the twitch devolved into a hemi facial spasm which really was annoying because I was a high school guidance counselor and I had to explain to my counselees that I really wasn't winking at them; it was really this  weird condition that I had been blessed with.They accepted that explanation and were very understanding.After spending  many years as a high school counselor,I was presented with the opportunity to work at a nearby college as an advisor and I just celebrated my 10th anniversary there.By the way , our Nursing Department is in a state of flux -two directors in 1 year.It really is a very demanding program.Well, time to call it a night. Please keep me up to date with your voice issues and the resulting findings.I really hope that everything  goes well for you.Things do have a habit of working out for the better if we maintain a positive attitude. We UPMC alums have to stick together and support each other as the situation warrants.Take care and above all stay healthy!
    • karen56071
      karen56071 robert78247

      Posted

      Hi Bob, Karen from Colordo  here.  What a coinsedence that we had the same surgeons at UPMC!  I actually never  had the pleasure of meeting Dr Horowitz when I wasn't under sedation.  I had only met Dr Kasam once before the surgery because we had only flown into PA the day before my office visit.  At first I was a little startled because he looked so young, with his spiked hair  and small stature.  But he was an ace in the OR and that's all that counts.  I'm glad to know the surgeons whereabouts and that they're still going strong.  I also surprised to know that Lois Burkhart is still in the business.  I communicated by email her many times before surgery.  If I knew how to reach her I'd love to know the percentage of post-ops who develop this  surgery site granulation years down the  line.  I haven't kept in touch with the other HFSA members to kmow  how  they are doing.

      You mentioned about me lasting 17 years with HFS before getting treatment.  Remember, this took place from 1984 -2001.  I had extensive dental crown work done on my left side and almost immediately noticed a flutter in  my eye.   So after several weeks I went to an eye Doctor, who promptly sent me back  to the Dentist, who said he'd never heard of that  kind of thing happening.  In the meantime my cheek began moving  slightly and I went to 4 neurologists, none  of which diagnosed  me.  in  fact, one said I was having mini seizures and put me on epilepsy meds.  After about 10 years I went to an ENT who  immediately diagnosed me  with HFS and said I could try Botox and finally surgery.  The Botox made  me look like I had a stroke.  So I  began doing research online and found out there were a lot of us who were suffering from  the same thing.  Thus my road to PA and surgery.  Doctors just weren't very enlightened in the matter in the 80's and 90's,  at least out in this neck of the woods.

      As far as my granulation goes, my voice Dr is sure my voice box problems are related to it, just like you are.  He did the procedure on my voice  box last Tues,where he put filler into the left, flacid side.  I was very hoarse that day but he told me to sing at the top of my lungs all day.  Sure enough,  the next day I  sounded like  me!!  I still need to go to speech therapy to gain more  range and volume to my voice and the filler only lasts 3 months.   Medicare  didn't cover the procedure.  Guess it was considered cosmetic. (? ) Anyway, I'm grateful for the reprieve from  hoarsness and croakie voice  for a while.

      I do know one thing for certain.  I wouldn't consider  having the  MVD again under any circumstances.  I'm 72 years  old  now and it nearly killed  me  at 57.  Ah but, always consider the old saying, "Never say never." 

  • robert78247
    robert78247 karen56071

    Posted

    Hi Karen, Bob from Jersey checking in "Never Say Never" wasn't that the title of a James Bond thriller a few years ago? I'm glad that your voice box filler worked.I remember my post- op loss of voice experience where the only sound that I was able to audibilize was a faint whisper. Of course the doctor's instructions were to not whisper. So, just like you I had to force air through the vocal cords until the situation stabilized and I regained most of what I had lost.I don't remember how I was able to get my hands on my  entire operation from beginning to end ,but I was floored to see the types and amounts of anesthesia that is used to  (A )put you out,(B)keep you alive,and finally (C) return you from the land of suspended animation.My biggest problem post- op was being given the wrong medication.Instead of my blood pressure meds, I was given God only knows what,but for over a month my heart rate was over a hundred beats per minute 24/7 .Whether I was in a vertical position, a horizontal position or somewhere in between it was the same old story -- instead of lub dub ...lub dub, it was lubdublubdublubdub...and it took quadrupling my blood pressure to quell the situation.When I had my first MVD in Philadelphia I had triple vision when I came to.The critical care doctor came to pay me a visit ;,he explained to me that during the course of the operation, the surgeon had inadvertettly touched a cranial structure that he shouldn't have but it would resolve itself within 24 hours(it took 26).That was not an easy 26 hours..From what you wrote,it appears that in a matter of three months or so you are going to be back to page one,square one,chapter one with your voice issues. Well it's that time again when I have to get ready for tomorrow's work day ,so once again,congratulations on regaining a part of you that you weren't so sure would return,but things do have a habit of working out (for the better). Keep me posted. Bob from Jersey.

    ng

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