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What all do we all have in common besides ...

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camas
camas

Hemifacial Spasm/trigeminal Neuralgia?  Are the majority of us middle to low income?  Does our general practitioner refer us to a neurologist that is a specialist in hemifacial spasm and/or trigeminal neuralgia or do they just refer us to a neurologist that they know, or is it a random referral?  Do we all stay with one neurologist, or do we get pro-active and search for a specialist on our own.  What I am trying to make a point of is that it took me over eight plus years going to different neurologists that prescribe the same medicines that never work.  When I finally decided that I was going to find a surgeon that was experienced in microvascular decompression and I went to my neurologist to get a referral, my neurologist had never heard of the specialist.  I live in Spokane, WA and the specialist is in Seattle, WA.  It really makes me angry that I suffered for eight years with HFS when there was a specialist on the other side of the state that was an expert on microvascular decompression.  Do neurologists have that big of an ego that they can't say, "I can't cure your HFS, but I have heard of somebody that is very good."   

0 likes, 4 replies

4 Replies

  • Roseann
    Roseann camas

    Posted

    I totally agree with all you've said in the above post re having to be your own advocate in terms of getting to see the right surgeon/specialist.  I am in the UK but had the same experience of going through x 3 neurologists before I found the expert in this field and asked to be referred to him.  There is huge ignorance within the medical profession about HFS and its destructive effects on everyday life.  I don't think this condition is a respecter of class because I know bus drivers and refuse collectors who have it and I know barristers, teachers, pharmacists etc who are in this 'club'.  I've seen that quite a few people who have HFS also have autoimmune disorders but it's probably just coincidence.  I've also noted that although average age at onset is around mid forties, there are many young people who have it.  The Facebook Hemifacial Spasm International Support Group has quite few research statistics and a new research document in the FILES section.  So it's worth a read.  Hope life's good in Spokane; love that name.
  • Aoiaoi
    Aoiaoi camas

    Posted

    I'm completely agreed with you, I was referred to three neurologist of which they gave me Botox and the other wanted to give me Botox and also prescribe some medicine that almost kill merit hall the side effect. When I asked about MVD, the never heard about it and insisted on Botox which I don't want. I have been suffered with this symptom for more than 5 years. I had some good days and some bad days. Have to quit my job because if I'm stressed my eye (left side) will twitch real bad. I think I will go to see the specialist at John Hopkins Hospital and see what he can do for me. Sometime I feel that I'm too old (61) and my life will end soon and I give up going to see doctors but the symptom so bothering me.
    • Roseann
      Roseann Aoiaoi

      Posted

      Please don't give up!  I was 62 when I had MVD and I got my life back.  You can do it too.   Be strong.
    • gladys39971
      gladys39971 Aoiaoi

      Posted

      Please do not give up. I am going to be 70 in February and have been with HFS since August, 2013. I have been to my neurologist and when I told him about HFS op, he must have thought me crazy and said I could die having the operation. Lately I was seen by a foreign doctor at our general hospital, and she did me a series of tests plus cranial angiogram. I spoke to her about the op and she said why not, she said either its a success or i will remain the same. Unfortunately op is not done in my country and I would have to go to U.K but unfortuately once again it is too expensive and I cannot afford it. I am hoping that this doctor will be able to do something for me as I did mention a doctor in U.K. but have not heard anything since then. Normal people do not realise what we are going through. If I will be given the chance I will definitely do it, but for me this is I think wishful thinking, but even so there is no way I will give up. Wish you luck and all the best for the festive season.l
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