Microvascular Decompression Surgery

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i had Surgery 6 weeks ago for facial spasms and I'm still experiencing spasms, dizzyness, and hearing loss. Has anyone had the surgery and experienced these things.? If so, how long did it take before you were back to normal?

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  • Posted

    Sorry to hear that your recovery is taking time PJ.  Have you had your hearing tested yet?  Is it complete loss on one side or more of a muffled sense of hearing?  Certainly hearing loss can cause the balance issues so it's probably best to look first at the hearing.  As for the spasms, please try to be patient.  Many people take many weeks or even months for them to go away completely, but the important indicator is whether or not you are sensing any improvements.  My own spasms went away at 6 weeks post surgery but I know of one person who took over a year to be completely spasm-free.  I'm led to believe that only 30% of people wake up and stay spasm-free after surgery, the rest of us have to be more patient.

    Wishing you all the best in your recovery and in trying to find out why you still have these balance problems.  Some people are unlucky enough to lose hearing in one ear following surgery but it isn't common these days because most surgeons monitor hearing during the surgical process.

    Where did you have your surgery if you don't mind me asking?

     

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    • Posted

      Thank you for your response, it is very helpful. I had my surgery at the Medical University of South Carolina. My hearing is really muffled. I couldn't hear at all after surgery but now it is really muffled. My doctor told me to give it a few months. It been a slow process and I was starting to wonder if I made the right decision to have the surgery since I am now having equilibrium problems, hearing loss, and still having spasms 😅. You have encouraged me!

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    • Posted

      Thank you.  Someone on another forum posted this about the 'plugged up ear' feeling and I thought it might also offer you some encouragement, assuming that your hearing hasn't been lost:  I had posted earlier that I'd been experiencing a "plugged up" feeling in my ear on mvd side post op. I had my 4 week post op follow up this morning with my surgeon, so I addressed it with him. What he told me was quite interesting. He explained that while drilling the hole in the skull to get to the nerve cluster, a water cooled drill is used. This is to prevent the drill from getting too hot. The sides of our skulls are hollow and normally contain air. In using a water cooled drill, it's possible for some of the water to enter hollow sections of the skull that normally contain air. Once sealed, any remaining water will produce this plugged ear sensation. This is common and the water will eventually find its way into the inner ear where it will dissipate naturally. Note - not outer ear, inner, so it will not leak out of your ear. This put my mind at ease knowing it's a common condition in mvd recuperation. Thought this might be helpful to anyone else experiencing this.

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    • Posted

      I am also a member of the Facebook Hemifacial Spasm International Support Group and have noticed some enquiries about surgeons in South Carolina.  I don't think the group is aware of any surgeons in your state.  If you do feel like joining then you might be able to share your knowledge and experiences - just a thought!  Also the group is hugely supportive and will answer any questions you may have too.

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    • Posted

      Thank you, I was told MUSC was the only place in South Carolina with 1 surgeon there that performed the surgery. I was going to Atlanta until I found out about MUSC.
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  • Posted

    PJ, I am so sorry that you still having complicatons after your surgery.  I lived with hemifacial spasm (HS)/trigeminal neuralgia (TN) for seven years and seven months.  I went to all of the neurologists in Spokane, that I was referred to by friends and my family physician.  I finally gave up and emailed the University of Washington Neurology Department in Seattle, WA.  I had the microvascular decompression (MD).  When I woke up the twitching was gone.  The only problem that I still have that is related to HS/TN is the nerve pain.  The TN must have been damaged, because the length of time that I had the disease.  I still have to take hydrcodone.  The stress of TN was one of the reasons that I'm in the middle of a divorce.  My wife accuses me of being addicyed to painkillers.  If anybody else out there are still taking pain medication after MD surgery please reply to me.

    PJ, I found that going to physical therapy helped withthe pain.  I sincerely hope that your post surgery complications clear up.  I had to sign a waiver about the possibility of hearing loss.  I quess I was lucky.

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  • Posted

    PJ, I forgot to tell you that prior to the sugery I had two of my upper left back teeth extracted.  One of surgeons assistants at U of W Medical Center told me, "Sometimes we see patients that have had all of their teeth extracted on the side of the face that the HS has affected."  When I had the pre-operation surgery meeting, with Dr. Rostomily, he asked me, "How long have you lived with this. 'I told him a little over seven years.' "  He said, "I don't know how you were able to do it?"

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    • Posted

      Oh, another thing.  Where the surgeon made the incision, behind my left ear, past the scalp line and into the neck ... sometimes my neck gets very stiff.  I then have massage therapy
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