Had mvd surgery two days ago and it was a success!

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I am a 43 year old female living in Chicago that has had hemifacial spasms for the past 9 years. Since my diagnosis I have been getting Botox every 3 months and taking meds to minimize the twitching. Every day i hoped and prayed it would stop and over time it seems Ed to have gotten worse. I saw 3 different doctors that all told me that there were too many risks associated with the surgery. So I assumed I would just have to accept it until I met Dr Ricky Wong. He met with me, confirmed i was a good candidate and two days ago I had the surgery. The first words I said when I woke up from surgery was "it worked". The surgery worked and I only wish that I had it done years ago. He is confident that it will not return and that I am cured. If you are considering surgery, don't give up hope and if you are I. The states consider meeting with Dr Wong.

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  • Posted

    Hi Stephanie, just to say many congratulations on your successful surgery.  I also had HFS for 9 years before my own successful surgery and so I can share your feelings of elation.  Please be aware that you may get some spasms on your way towards full recovery, but the important thing is that your surgeon sees it as having been successful.  Don't forget to rest LOTS in the coming weeks - it can take up to 3 months to feel at 100% full strength again, and drink lots of water to aid your recovery.  Well done to you and Dr Wong.

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  • Posted

    Hello Stephanie,

    I am very glad MVD works out for you so that you can continue to lead a normal life.  I have also been thinking a little bit about MVD since someone else I knew responded well to MVD as well.  

    When you said it worked, did you mean that the twitches are completely gone or you have not experienced as much as before?  Do you have any side effects of surgery?  I think surgery like MVD is a big ordeal to go through with a lot of risks.  My hope is for your condition to continue to improve even if it has not completely resolved.  

    What about the medications you were taking?  What were they?  I am taking a combination of baclofen and lyrica as well as gabapentin.  Recently I cut down baclofen from 50mg daily dose to 5mg without an increase in twitches.  So I am happy to eliminate unnecessary medication from my body.  I will work on decreasing lyrica (50mg) as well as gabapentin (200mg).  They seem to help at first but only with increasing dosing.  I think the body adjust with or without this medications.  I am also using CBD oil plus THC and I find them helpful in controlling headaches as well as ringing in my ears and nighttime facial itches.  

    If it was not for my son and my wife, I will consider surgery in a heartbeat.  I am the only provider in my family and want to make sure I am there for them as much as they have been there and supportive for me.  But my condition is getting worse and at a point that it becomes unbearable, I will definitely seek out a skillful surgeon for help.  

    I am thanksful for you to share your story and look forward to hearing answers to my few questions.  Please feel free to respond to them when you are at ease to.  

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    • Posted

      Hi Michael

      The twitching is 100% gone.

      Before I met with the surgeon, I was told that the surgery was risky and may result in hearing loss and not likely the procedure would work. However when I met with Dr Wong he said 90% success rate and while hearing loss was a risk, not a high risk. The procedure he performed was to go through the skull, just behind my ear and pull back the blood vessel and wrap it with teflon. The teflon is in permanently and will not move, so the chance of me getting hemifacial spasms is very unlikely.

      I dont know if this is the same procedure performed elsewhere, but while it is brain surgery it went very smoothly and Day 3 after surgery I have some pain, but well underway to recovery. prior to surgery I was on clonazepam and Botox. While the meds helped to minimize the twitching, it was always there. So much so that even reading was difficult.

      I know how difficult the choice may be to perform the surgery or not, but in my situation I'm glad I did it and it was not until I spoke to the surgeon that I truly understood the risks and benefits of having the surgery.

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  • Posted

    Hi  Stephanie, I have had HFS for the past 3 years and now get Botox every three months.  I asked my doctor if he thought I should get the surgery done and he said there is no such thing as surgery for HFS.  I have no idea why he would say that.  He is a neurologist.  Anyways, I get the Botox on my right side and the last time I had it done my mouth went so paralysed many people thought I had a stroke.  He injected mmy eye area, my cheek area and around my mouth.  I am starting to think that maybe I need to see a different doctor as I am reading about people who have had the surgery with fantastic results.  I am so happy to hear that you are doing better and HFS free.  You are very lucky.

     

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    • Posted

      Hello Donnamikil,

      I would be cautious about injecting botox around the mouth and cheek as it can cause droopiness and asymmetry without adequate control of spasm in that area.  My injection is just around upper and lower lids (2 units at each of 2 locations of upper and 2 units at each of 2 locations in lower) and 3 units each around each location of crow feet area.  My doctor also suggested to injected a 2 units each on each location of contralateral crow feet area for balancing.  A total of approximately 28 units are applied each time.  This works best for me but might be slightly different for you. You might want to bring this up to your doc to see if any modication can be made but I think this is a good template since I have been receiving botox for a long time for my condition.  And so far I have not received any injection in my neck although i had tried in my cheek, around the mouth, and the chin before without the result I need.  Now I am taking lyrica and baclofen to control spasm as well.  One thing I find help a lot is sleep, a lot of exercise and especially yoga.  Also stay away from caffeine and minimzing alcohol.  Hope this help.  

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  • Posted

    Hey Stephanie, I wonder if you have a "thumping" on your right ear drum as I do and when I look downward the thumping gets worse.  When I close my eyes the spasms start and "pull" on my right cheek and right side of my mouth. 

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    • Posted

      Hi Donna.

      I can tell you that I know exactly what you are going through. For me Botox helped, but it was never a fix. I always twitched, always looked like one side was droopy or unbalanced with the other side. I would smile and never have a symmetrical smile. When I was diagnosed I was also told surgery was not an option. That it was too risky and wasn't guaranted to work with a very low chance of it working. I heard that from 3 neurologists! I don't know where you live, but if you are in the states, or if you can make contact with a doctor in the states I would recommend doing so. My doctor looked at my MRI and instantly knew I was a good candidate for the surgery. I also believe there are different procedures on surgeries performedand. Mine was done by making an incision behind my ear and wrapping the blood vessel with what my doctor said was tephlon. Hang on there. Don't give up. And i was always getting a popping sound in my ear.

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  • Posted

    Hi Stephanie, I responded to your - Been there,Done hat etc. inquiry and apparently it was "moderated"out of existence,so to make a long story short -my health insurance was the culprit. The "powers that be" preferred that I stay in network and after an unsuccessful appeal,I reluctantly went along with their recommendation and paid a dear price.So,31/2 months later I had my 2nd operation at UPMC in Pittsburgh . Happy to report it was a success

    . Wishing you continued good luck with your recovery.

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  • Posted

    Hello Stephanie,

    I just read your post about your hemispasams I also suffer from this and as you know it drives you crazy!

    I have been getting botox shots for a few years now and  would like would like a more perminite solution.

    I would like to know about Dr Wong can you please tell me where his practices is at in  IL.

    Thank you in advance on any information you can provide me with.

    Thanks

    Kathleen

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    • Posted

      Hi Kathleen,

      I'm sorry to hear you are also going through HFS. I always got my Botox treatments through the NorthShore hospital in Glenview, Glenbrook. That is the hospital I had my consultation with him but he only performs the surgery out of Evanston hospital. He may also have an office there.

      I highly recommend you see if the surgery is am option for you. it has made a world of a difference for me.

      Good luck!

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