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MVD didn’t help me

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jocelyn27476
jocelyn27476

I am 58 years old and have been suffering from HFS for more than 10 years . For the last 7 years I was getting Botox every three months . It was a hit or miss thing . Eventually  the Botox was not  effective anymore just left me with right facial muscle weakness  . My smile was asymmetrical. I am from NY went to the best hospital and had the best doctor ( based from credentials)  for my MVD surgery on May 15.  Stayed in the hospital for 2 days . I was just a little nauseated and I couldn’t swallow, but incision site was pain free . My voice was hoarse for 2 months, I still have a salty taste in my mouth up to now and  my appetite isn’t back . Three months post op I started hearing this whooshing sound on my right ear, the rhythm of my heart beat . My right eye closes when I chew and eat . I was willing to trade all of these to facial spasm but 3 days ago (4 months post op) I got the spasms back. I am so frustrated.

I am just writing this because I thought MVD was the last resort , but in my case it didn’t help me . 

0 likes, 5 replies

5 Replies

  • laurel3865
    laurel3865 jocelyn27476

    Posted

    Hi Jocelyn,

    I am so sorry your MVD didn't work, but unfortunately it doesn't always help everyone. I had 2 MVDs for trigeminal neuralgia. Both were done by my original neurosurgeon, whom also supposed to be the best in his field, but unfortunately for me, it caused me more damage than the TN pain I had for 12 years prior to surgeries. I now suffer from 24/7 involuntary movements of facial nerve twisting, spinning and pulling in my mouth, lips, cheeks, scalp (the entire right side). This happened 5 months after the first surgery and did not improve so after 13 months post op, the neurosurgeon suggested a redo and assured me I will benefit from a redo. Well, the 2nd MVD made it so much worse. I lost my hearing, had vertigo for 7 months, had to use a walker. I was nauseated all the time, can barely walk due to the dizziness. I never went back to work and had to give up my very well paid career and got on disability. This was four and a half year ago. I went into deep depression, had major anxiety and panic attacks daily. I once was a very successful, independent woman but now became very needy and could not be alone. I was housebound for a good year or so. I searched for all top medical professionals to help me and no one would touch me. They all said I should not do anymore surgery. Even Mayo Clinic turned me down. So, now I live with this crazy painful sensation of nerve twisting in my entire right side of my face and scalp 24/7 nonstop. The pain is excruciating but God gives me strength to endure. I am not writing all this to scare you but to let you know that MVD does not always work for everyone. I pray your situation will improve and that you are just going through something that is temporary. May God bless you through your journey. 

    • jocelyn27476
      jocelyn27476 laurel3865

      Posted

      Thanks so much Laurel. I was already debating whether I should go for a second MVD if that will be the recommendation , but after reading your story I decided not to. I read the surgeon’s notes and found out that during my surgery to loss 900 ml of blood! 

      This illness can really change ones life . I don’t even have pains but if this spasms continues I also don’t think I can go back to work.  I hope someday they find a cure for us . 

  • Roseann
    Roseann jocelyn27476

    Posted

    Hello Jocelyn from here in the UK.  So sorry to hear your surgery hasn't yet given you full relief.  My advice would be to keep the faith a little longer.  Some people have setbacks that then right themselves.  I had surgery 5 years ago (after 9 years with HFS and at a similar age to you) and still have occasional flutters when I'm not feeling well or when a virus is imminent.  Sounds like you've had quite a rough ride one way and another - not everyone experiences these complications so sounds like you've been unlucky.  It might be worth getting another MRI scan just to confirm that all looks well?  A minority of people have to go back for a second MVD if a compression has been missed, but hopefully not you!  All best wishes and please don't give up hope just yet - I have one friend who took 18 months to be completely spasm-free!

    • jocelyn27476
      jocelyn27476 Roseann

      Posted

      I am so happy for you Roseann, Thanks for your encouraging words . I really hope that this is just temporary. 

      Roseann did your hair fall after MVD? 

    • Roseann
      Roseann jocelyn27476

      Posted

      Hi again Jocelyn, just to say my hair has been falling out for a long time now but I tend to think it is due to colouring it rather than the effects of MVD.  Certainly not bald yet!!!  All best to you, Roseann
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