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After 2 rounds of Botox therapy and 2 MVD's over 12 years ago Mr.Twitch has returned!

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robert78247
robert78247

For whatever reason, I was one of the chosen few designated for "twitch duty".It started out very innocently but gradually worsened to the point that I was referred to a neurosurgeon. He wanted me to avoid the surgery and opted instead to start me on Neurontin,

.I was not in favor of ingesting any kind of medication,since it would only treat the symptoms and not the root cause so I was referred to a visiting neurosurgeon from Hahnemann Hospital in Philadelphia.(I live right outside of Trenton,N.J.)This doctor held a clinic in St. Francis Hospital in Trenton.Long story short, he tried 2 rounds of Botox-20 units at 2 different sites week1 with no change.The next attempt was 80 units at 3 different sites (enough to paralyze a horse,he remarked),but the result was the same -no relief. Eight months later,I underwent my first MVD at the University of Penn in Philly and another failure.So three and a half months later I was referred to Dr. Amin Kassam at the University of Pittsburgh where I finally met with success.After 4 plus hours on the operating table (my wife was starting to get nervous because she was the last spouse waiting in a waiting room that 4 hours earlier had been jam packed).Dr. Kassam said that on a scale of 1 to 10 I was an eleven!This was due mainly to scar tissue that had formed after the first operation.Trying to find a neurosurgeon willing to perform a "redo " operation is no easy task,but this is one of Dr.Kassam's specialties. From the beginning of this odyssey, I experienced many of the side effects that they told me could occur including an asymmetrical smile from the Botox although according to my wife the right side of my face appeared to be 10 years younger than the left.I also experienced triple vision after the first operation each time that I opened my eyes(this Lasted 26 hours)By triple vision I mean that I saw everything in 3's.I had a paralyzed vocal chord which caused me to whisper only for a week.My hearing was adversely affected .The customary nausea was in evidence along with a wobbly gait.The right side of my skull had been violated twice in three and a half months,so a certain amount of pain and discomfort were to be expected and ,needless to say this was the case.But lo and behold, the eighth wonder of the world-the healing power of the body made an appearance and for twelve and a half years all was well ,but recently I have begun to experience a lower lip/middle chin sensation reminiscent of my past experience, so I think I will once have to contact Dr.Amin Kassam who has now taken up residence in Milwaukee,Wisconsin.Hopefully ,he will once again be able to do a "redo" of a "redo". I am currently a New York Yankee,Philadelphia Phillie,Philadelphia Eagle sports fan and am beginning to think that there might be something to the old stress angle.The Pope just paid us a visit,maybe I can request some prayers from his Holiness. Oh well,wish me luck.

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0 likes, 4 replies

4 Replies

  • Roseann
    Roseann robert78247

    Posted

    Hi Robert; I love your style of writing and your humour, but not the fact that you've endured so much in the name of HFS.  I hope the latest symptoms are not HFS related; it's unusual to start in the chin area I think, and many of us who have had surgery do get the occasional weird symptoms that frighten us to death.  But I'm sure you know your body better than anyone else!  Just to reassure other readers I can report that I had surgery after 9 years of HFS and it was very straightforward here in the UK with Nik Patel, but Botox wasn't a resounding success for me beforehand.  I've been spasm free for a couple of years and am keeping my fingers and toes crossed, and will of course give the Pope a call if things get worse again!!!   Just wondering if you are a member of the Facebook groups:  Facebook Hemifacial Spasm International Support Group and Facebook Hemifacial Spasm Worldwide Support Group?  They are both incredibly good and the first one seems to have more of the US members on it I think; it also has stacks of fantastic information and a few people who have had x 3 MVD too!  Hoping that you'll manage to limit the stress a bit and that the current symptoms will just go away and never come back again.  Take care Robert and thanks for sharing your story with us all on this UK site. 
  • robert78247
    robert78247

    Posted

    I'm" Mr. Twitch " from the above entry and I just wanted to expand upon and add some afterthoughts. When I said that it started out innocently enough, I meant that I had just exited my eye doctor's office wearing sunglasses because of  the eyedrop thing which is  administered  when you go for your annual eye checkup,and your pupils are in a very dilated state.The eye twitch continued for 2 weeks straight in an unrelenting fashion before I decided to make an appointment  with my family doctor. He advised giving it another 2 weeks, which I did but with no cessation of the twitching symptom. So the good doctor referred me to the neurosurgeon who suggested that I start taking Neurontin  on an increasing dosage schedule which could have earned me a starring role in one of today's zombie flicks.He said that the MVD procedure was not "Mickey Mouse " surgery & that there were many serious side effects that I might experience.So, I was referred to the visiting neurosurgeon from Hahnemann Hospital out of Philadelphia who opted for the Botox protocol which did not work.He referred me to UPMC in Pittsburgh,Pa. but unfortunately the health insurance people felt that they had someone,in house, who could successfully perform the operation.WRONG! WRONG! WRONG!It would take an entire evening to describe that debacle ,but suffice it to say the situation got worse in that the eye twitch now progressed to the hemi-facial spasm stage. I was a high school guidance counselor during the day and 3 nights a week in an alternate evening hihg school. The facial spasm was relentless to the point that the facial muscles on the right side of my face were exhausted to the point that I had to apply pressure with my right hand to the right side of my face in order to control it as best I could (all the while wearing sunglasses indoors because of the fluorescent light trigger).In my initial remarks , I failed to mention that in the year 2000, I had a radical nephrectomy (complete kidney removal) for what was thought to be renal cell carcinoma but which turned out to be a nonmetastatic lesion known as an unkocytoma.A simple removal of the lesion ,followed by some good stitch work and I would still have 2 functioning kidneys today but unfortunately 'tweren't to be. The point is I was able to undergo both MVD's with only 1 kidney. The kidney doctor said that the kidney needed to be hydrated and everything should work out.Thankfully he was right.I also had a mild case of high blood pressure at that time which further complicated the issue but that did not become a factor.When I met with the surgical group at UPMC,they assured me that they could alleviate from 66 to 99 percent of my symptoms ,so that told me that I was in for some "residuals" post -op.There were long stretches of time that I felt 100% symptom free,but something tells me that my teflon inserts may unfortunately be on the move.Right now I can adjust to and live with I'll call'" twitch light".One piece of advice that I would like to leave you with(I realize that "Free advice is oft' times worth the price you pay for it." ),but CHECK the credentials of your operating surgeon very thoroughly because if I can direct your attention to your little finger nail - that's the space in in which a major operation ,known as a retro mastoid crainiectomy , will be performed.Skilled surgeons only wanted.Have a great rest of the week.
    • Roseann
      Roseann robert78247

      Posted

      To say your luck hasn't been the greatest is a bit of an understatement Robert!  So sorry that the nightmare appears to be resuming.  I hope others will read what you have written and take note.  It's so important to insist on the right surgeon for the job and to never accept second best or not very good at all.  Take care and do hope things improve of their own accord; it must be incredibly hard in the job you do.
    • robert78247
      robert78247 Roseann

      Posted

      If the hemi facial spasm support groups ever branch out into and focus on trigeminal neuralgia ,I would like to relate to you my wife's sister-in-law's experience with this malady.She suffered with this painful monster for years;her doctor had her on 19 pills daily-10 in the morning and 9 at night.The condition would go in and out of remission,but when it was out of remission and active ,the 19 pills were ineffective and useless.She said ythat if I could undergo 2 MVD,s in a 3 1/2 month span of time,then she would venture into previously unchartered waters for her and hope for success.She was somewhat apprehensive at first because she worked in the health field and researched this condition of hers very extensively and discovered that she had a very aggressive form of the affliction.When she discussed this concern with Dr. Kassam,he simply told her that aggressive forms of trigeminal would be treated aggressively and that is how he planned to proceed.So,she decided to proceed with the operation and it was a resounding success .To this day she is pain free. Her liver,kidneys,stomach,nervous system and whatever other body parts are affected by 19 pills, each and every day ,sent out to Dr. Kassam a collective THANK YOU! Happy to say that she is pain free to this very day.With respect to my condition,I did some detective work and discovered that too much of just about anything can have unwanted consequences, and in my case organic dark chocolate ,86% to 93% strength cocoa, appears to be the culprit.After I excluded it from my diet , the chin/cheek movements have subsided.When the doctors at UPMC assured me that they would  eliminate between 66 and 99 percent of my symptoms,I thought to myself that I,m fairly certain of what a 99% symptom free condition would be like,but if those two 9's are turned upside down and become  a 66, I'm not sure of the range, scope and degree of the symptoms that I would be experiencing.My question would be-When does a 66 become a 65 or lower? Oh well, something to think about in the future if and when those God awful symptoms take center stage again in my life.For now ,I have to get rid of some intense dark chocolate bars!(Too much caffeine) Au Revoir
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