MVD for Hemifacial Spasm (HFS)

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3-4 years today  I've lived with this little booger that has consumed part of my confidence, my smile, sleep, confidence, my work performance and practically part of my life.

first about me and my current health.

I am 37-1/2 years old and this problem started sometime when I was 33. I will admit that during this time I wasn't as healthy as I would have liked, but I didn't have any major condition either. Perhaps my blood pressure was a bit on the high side. I did start working out shortly after the illness started and eating notoriously healthy. I think I started this to reduce my stress and because deep inside I knew that eventually I'd opt for surgery.

Today I am a healthy individual. My blood pressure is 120/79 my resting heart rate is at 55-59 bpm. I am 5'8" and weight 190lbs with a muscular physique. I have been working out intensively weight lifiting and cardio.

Why am i telling you this?

I am telling you this because in my naive thinking, I thought that perhaps if I got healthier my condition would lessen or go away. It didn't and it hasn't and its' gotten worse over the years.  I am also telling you this because tomorrow on 12/18/15 I will go through (MVD) Microvascular decompression and I will post my results and recovery time soon after.

One of the reasons why I waited nearly 4 years was because I was/am concerned with the recovery time. Unfortunately as a father and as a sole income I don't have the luxury of being away from work for 6 weeks as I've read other's have in other forums, which is why I am disclosing my current health before MVD surgery.

My neurosurgeon believes that because my health is strong that I will recover in no more than three weeks, possibly even two. I hope my body agrees.

I will post my results next month.

From a cost perspective, with insurance I will pay 5000 US dollars by the time is all done, which is my max out of pocket cost.

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14 Replies

  • Posted

    Hi Ruben, My name is Bob from New Jersey.I had 2 MVD's in the span of 3 1/2 months.The first that failed was completed at a very well known hospital in Philadelphia. The second one which was very successful was completed at UPMC located in Pittsburgh,Pa. The neurosurgeon who successfully completed what is known as a "redo" since it was the second attempt to correct the problem is Dr. Amin Kassam .In my case it was a matter of getting it done the first time versus getting it done RIGHT the second time.I contacted a number of MVD patients before my second MVD,and, for the most part each person's after effects from the operation were different;so all you can do is hope that, in your case ,you experience the milder side of the after effects.My second operation was completed in mid December. The pain subsided on Christmas Eve (what a gift !). I returned to my high school in mid January a week earlier than anticipatedThe team of neurosurgeons guaranteed me  relief of symptoms within the range of 66% to 99%.That indicates unless you are lucky and have an extremely skilled surgeon performing the operation ,you might experience a return of some of the symptoms but  they do go away.This was my experience .I recently had a scare with the return of some of my symptoms,but , thankfully, the symptoms have disappeared.

    I 've had this ebb and flow for over 12 1/2 years.Good Luck.You will enjoy being "twitch free".

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    • Posted

      Hi Bob

      I am Ruchishobu from Dubai. Can I know the more details of redo surgery? name and contact details of Dr who performed and personal experience and cost?

      As I got it done in Aug 2015 but it has come back after 2 months and i am in the same state of having full HFS on my right face.

      If it is ok may i get your Mobile number so that I may contact you after your permission.Thanks and waiting

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    • Posted

      Hi Ruchishobhu,This is Bob from New Jersey answering your request for information regarding my "redo " experience with hemi-facial spasm.Since there is a 9 hour time difference between Dubai and Hamilton New Jersey,then  6 pm; 7 pm; and 8pm your time in Dubai would equate to 9 AM; 10am and 11 am  here on the East Coast in the United States. My cell phone number is 1-609-731-0471. If for whatever reason we are unable to connect via the phone, I  will  give you  the  number   for Dr. Amin Kassam,the "redo" specialist who successfully completed my surgery.It is1-414-385 -7111 .His address is 2801 Kinnickkinnick River Parkway, Suite 630,Milwaukee ,Wisconsin 53215.I think that the times listed above will work for both of us. Good Luck!
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    • Posted

      thank u Bob.....I tried calling from 504961485 but call didn't materialise ...think u were busy ..Bob when did u perform the redo surgery and how much was the gap between the 2 surgeries ...what happened after the first surgery ..in my case after first surgery on Aug 10th 2014 my twiching had reduced 85% for 2 months but then it came back at a very rapid rate ....hope to get a fast response ....I am sure u will b blessed for helping others ...
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    • Posted

      +

      Hi Ruchishobhu, I think that I just missed your call this morning. I tried calling back to  a 971 number followed by nine other numbers but the robo response indicated that the call could not go through as dialed. Anyway, in response to your questions, -my first MVD took place on July 19,2002,and the second was completed on November 11,2002( approximately 3 months and three weeks later) basically because the right side spasms increased in frequency and intensity from day one. The total cost for the operation and the 4 day stay was $59,000.00 My insurance covered the entire cost because the insurance carrier felt that they had a neurosurgeon in network who could successfully perform this operation. WRONG!!! The situation deteriorated to the point that the muscles on the right side of my face were literally exhausted from spazzing all day long. I realized that the situation would not resolve itself,so I wrote a letter of appeal to the insurance company and they saw it my way.Fast forward to November 11th and after 4 days of extensive testing to find out which nerve or nerves  were misfiring,the successful 4 hour operation took place and voila "twitch/spaz free.The total cost was $102,000.00.The operation itself was followed by 4 days of rest and rehab.With respect to the possibility of the twitch returning,I was told  by the medical staff at UPMC in Pittsburgh Pa.that this was a distinct possibility, but that I had to keep the faith because the symptoms would eventually  go away on their own. So far they have been right .By the way ,the 2nd surgery (the "redo") took 4 hours on the operating table.Dr. Kassam stated that difficulty wise on a scale of 1-10 I was an 11.!In your case you will probably require some sophisticated testing of your brain in order to pinpoint the source of the problem. Then once you have all of the information check for a neurosurgeon whose specialty is "redo's and go for it. Good Luck. Don't hesitate to call.

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    • Posted

      thank u for sparing so much time to write the detail of your experience ....what do you think or suggest I should do now .....

      which doc u think I should consult with ....

      in my case my twiching had reduced after operation considerebly ..but now increasing day by day since one month littla more than it was before . different from your case ...

      I don't feel like meeting anyone in contrast to my temperament ...I was very outgoing and social person ...being so far away from US A its difficult to decide upon the future course of action ....need your guidance ...

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  • Posted

    Hi from the UK Ruben.  Thanks for sharing your story; it's good to know that you are in great health as you go for surgery and I hope your recovery will be a good one.  My own surgery was a great success, but it did take a good 6 weeks to feel even 90% strong again - my spasms also went away at 6 weeks post surgery.  I hope you will be able to give yourself the time you need to rest and recover; this is big surgery and needs respecting.  Hoping that you will have a very happy outcome and I'll be glad to hear how you're doing when you feel ready to post.  All the very best to you; go safely and may all your prayers be answered.
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    • Posted

      Hi all,

      I am now back home, 12/19/15 I am walking (a little dizzy) talking and best of all completely spasm free. I was in the hospital about 26 hours total and I didn't even realize the surgery was done when I woke up. I thought I was beign prepped for surgery.

      There is some pain but it's well worth it. Haven't been able to eat yet because of the nausea but it's getting better.

      Also, I was told that there were 3 arteries sitting on top of my nerve causing the spasms, he moved then and put a sponge to relieve the pressure and I was spasm free immediately.

      I'll post my recovery another day

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    • Posted

      Wow Ruben!  That's fantastic news.  Hope you have some meds for the nausea and that the dizziness will gradually subside.  I found that the nausea took a few days and the dizziness about a week, but we're all different.  You're doing really well to be able to post so early after the procedure - well done you and well done your surgeon!  You may find that the first couple of weeks are two steps forward and one step back, so be prepared to feel a bit less well once the steroids are out of your system.  Let us know how you are doing as you recover, and HAPPY CHRISTMAS to you - a wonderful gift indeed.  All best wishes, Roseann
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    • Posted

      wowwwww...it's so good to hear that ...congratulations ...

      a very very fantastic Christmas gift ..

      u can now enjoy life to its fullest ..

      where was surgery done and who was the doc....

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  • Posted

    Good luck and I hope you get perfect results!!! God bless
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  • Posted

    Hi Ruben,

    Well done for taking the plunge with MVD. Having, as you say, been a father and a sole breadwinner and lived with this emotionally destructive condition for a number of years,  I imagine that this procedure will be "all in a days work" for you.

    I hope you get the result you're hoping for,  that your recovery is a swift one and you can get on with your life spasm free. I had the operation two years ago this week and it took a year or so for the nerve to repair and for my face to gradually  settle down. For the last year, however, I have enjoyed the enormous psychological, emotional and practical benefits resulting from this-and every day I enjoy having the capability to smile and make eye contact reminding myself that I couldn't do either for many years. (don't want to sound smug....)

      Best wishes to you and every hope that you enjoy a similar outcome.

    Ed

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  • Posted

    UPDATE 12/27/15

    First, thanks all for your best wishes.

    Someone mentioned in the comments that he/she felt the pain after the anesthesia was completely out of the system and it isn't a lie. My first day back I felt fine but once that anesthesia wore out, I felt all the pains of the surgery in full fury. Dizziness, neck was so stiff, my head hurt all over the place from what I can imagine was the clamping device they used. I couldn't eat or sleep much on day 2, 3, 4 or 5.

    I was for the most part bed ridden with occasionally getting up to use the restroom. I was on meds for pain, mostly tylenol. The only thing that was somewhat bearable to eat was top romen soup (and I hate top ramen) and chicken broth with vegetables. I lost a total of 8-9 lbs in those 4 days.

    After the fourth day I started feeling a little better and started eating a little more day by day. dizziness is also gradually going away. and I can finally sleep for more than 4 hours at a time. In those 4 days I couldn't even lay my head in a position that was comfortable for more than 2 minutes before the pressure in my eyes and my head would make me stand upright. Any pressure would be too painful.

    Today I feel well. each and everyday I feel a smidgen better than the last, but as someone else eluded, there will be a time when you feel like your recovery is taking a turn and I agree is due to all the pills and anesthesia wearing off.

    For those contemplating the surgery, take the plunge, it's worth it. I'd do it again in a heartbeat even knowing the 4 days of hell I just went through. I am spasm free, still no issues and I can now smile and laugh without my face going crazy. I did suffer the hearing loss on the left ear, feels like I have an ear plug but I am getting used to it. It if returns I'll be happy, if it doesn't oh well, a small price to pay.

    From a psychological standpoint, I will agree that I was prepared for the surgery not working. My neurologist gave me a 75% chance of success and I would take those odds anytime in Vegas. I was pleasantly surprised to wake up spasm free. I also know that some have reported spasm coming back after a year some after 10. I will take what I get.  I was planning on taking 3 weeks off and truthfully I could return to work before that, but I am going to respect my body and take an extra week off to ensure good recover. In all I will be taking 4 weeks off before returning to work.

    Good luck to all those going for MVD surgery. Do your research and choose a neurosurgeon that specialized in that field for your best chance of success. Get in shape as much as you can before the surgery, I do believe it helps in recovery time.

     

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  • Posted

    Hi Ruben,Congratulations on having attained a successful outcome with respect to your MVD. I guess the old adage-"NO pain, No gain" applies to all of  us who have had to contend with this very annoying,very troublesome,very exasperating condition. The people that I spoke to before and after the operation all had different experiences with respect to post-op pain. The interns at UPMC (University of Pittsburgh Medical Center) do a very thorough follow up research study about a month after the procedure. I wish they would publish the results of this study so that for anyone contemplating a MVD, they would be better able to assess the full upside and downside of this major, big time operation, especially with respect to the experience with post-op pain.In my own personal experience with 2 MVD 's in a 3 1/2 month span of time (keeping in mind this occurred in 2002) , I did experience right side ,below the ear, skull pain since the site had to be drilled and then closed,and then redrilled and reclosed 3 1/2 months later at the same time placing, removing and then replacing the titanium mesh plate.In addition to that ,the teflon cushions had to be removed and repositioned and an inordinate amount of scar tissue from the first MVD had to be cleaned up.With respect to the possible side effects that I was advised could occur,I received a visit from many of them--pain,weakness,double or triple vision during the first 26 hours,hearing loss(which has since resolved itself),wobbly gait,vocal cord paralysis (which resulted in me being able to only whisper - this eventually also resolved itself) Even though my appetite was supressed after the first operation , I had this very strong craving for a Mc Donald's vanilla milk shake and if the truth be known ,I haven't had the urge for a milkshake since I was a teenager!One important reminder that  I would like to leave with anyone who might be reading this is to follow pre-op instructions to the letter of what they want and expect from you.In my own almost"' misadventure " the 2 week before instructions stated that I was to stop taking any medications from a list that they sent to me.(many of the medications had to do with known  blood thinners )There was no mention of any herbal supplements that I was taking that indeed did have a blood thinning effect.It takes a lot of emotional energy to psych oneself up to follow through with this major operation but now I  had to face the possibility that if I did not pass a very important blood clotting test ,my operation would have to be placed on hold for 2 weeks until the herbal supplements cleared my system.It would have been like going back  to page one,square one,chapter one and starting all over again.But luckily my blood clotting test results were in a range that they required to proceed with the operation .So here I am 13 years and 6 weeks later thankful ,in fact extremely thankful, to the skilled neurosurgeons who provide us with the relief that we so desperately seek. It's nice to be normal again! I'm glad that you experienced the high degree of success that you mentioned.Have a happy,healthy,"TWITCH FREE" NEW YEAR !
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