Is a specialist necessary?

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I belong to a forum on Facebook and was diagnosed in May 2016 my neurosurgeon is suggesting surgery in the FB forums they tell me he is not a Chiari specialist and I should only see 1 of the 3 specialist which are not even remotely close to me I'm in Oregon . My other question is they're saying I need a connective tissue disorder test, sleep test, and complete MRI before the surgery but my doctor never mentioned any of this should I seek a second opinion ?

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  • Posted

    Yes, yes and YES!!!!!  PLEASE do what you can to get to a Chiari specialist.  Not to be harsh but this is brain surgery.  Wouldnt you want a specialist?  The sad thing is that there really arent alot of true Chiari specialists available to most people.  Ask your neurosurgeon to prescribed. something to help manage your symptoms until you can get to another docotor.  The tests you mentioned should be done before surgery should even be considered,  Most doctors will try to manage symptoms for a while before rushing right into surgery (unless of course you have a severe case).  Please research this yourself as well.  There is alot of information out there including doctors research and medical publications.  The more that YOU know the better you will be!!  Good luck to you!
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    • Posted

      There aren't very many specialists!!! Because it is a rare condition. While this is BRAIN surgery, you will have trouble finding a specialist because there are very few!!

      What this disorder boils down to is your quality of life. If you are in constant pain and drugs don't help and decompression surgery is recommended, there may not be time to find an "expert." The longer your brain is squished, the more likely you will lose functioning of movement, balance, etc. You have already lost functions which you may not be able to get back.

      I was diagnosed via MRI in Nov. Then, I met with a NS, and a Neurologist and had multiple other tests done to find some other reason for my symptoms. And my symptoms kept getting worse. By the time I finally got the CINE MRI done- April, I was a lot worse. I am 57 years old and I am running out of time to get my damn brain fixed- so I did the surgery with a second NS.

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  • Posted

    The thing about Facebook and any forum you are in is that you may get information which is not correct. The problem with Chiari is that very few. Doctors know what it is. There are only a few "specialists." Be very cautious about the Doctor you pick because there are some out there who are pushing surgery when it's not really needed.

    When it is necessary is when there is cerebral spinal fluid blockage. This fluid cushions the brain and spinal cord and lack can cause loads of problems.

    Has your doctor performed this surgery before? How many does he do per year. What exactly is he planning: cut piece of occipital skull out, cut part of C1 vertebrae. Does he use a Dural patch to cover the opening in the skull. Is he shrinking the tonsils back up into the skull? Many surgeons won't open the Dural layer- which you have to do if want to see the brain and shrink tonsils.

    You should have an MRI, Cine MRI prior to surgery. The sleep apnea test can wait till after. If you are close to a teaching hospital, you may find more NS who know more about Chiari.

    If unsure, get a second and third opinion.

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  • Posted

    hi there, ust isten to Linlel get the best specialist...I was pleased that i hve done my surgery, I am drug free now... (not even paracetemol)
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  • Posted

    Hi, Yes chronic fatigue is a symptom. I have been with this for over two and a half years. I have become a fraction of the person I was. I have very little energy now and the tinnitus has become worse. I tried ro battle it out and do some light exercise but each time I did I became ill with an extreme attack of the symptoms, acid reflux fatigue, dry throat, tinnitus, tremors and pins and needles all over my body. I am on my 2nd neurosurgeon as the only thing I don't have from the effects are headaches. My head feels numb most of the time and I feel drousy and slow. I don't look ill so that's another issue as no-one can see the symptoms. I keep positive and enjoy life. I feel I aquired this after an accident as that day I became ill and have been ever since. I had been fit and healthy prior to this. It's a comfort for me to read your post as you have a similar story to mine. It's so frustrating as doctors

    aren't informed enough about this. Last night I had more extreme symptoms

    as my head amd neck were under pressure from fixing something in the house yesterday. I think it's a good idea to take notes when you see the consultant because of the little know complexitites of this condition. Keep fighting and good luck.

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    • Posted

      I am the same way with the headaches I get one every now and then but not constantly. And it's so crazy because I was just sitting at my desk one day and my back starting shooting pain my pcp kept saying it was a pulled muscle for 2 months then my MRI revealed my c5/6 disc was herniated that's when they also discovered the Chiari this started 3/16 I can't imagine living like this for over 2 years I'm 39 and I feel like 89 most days and yep everyone is like gosh your so happy and friendly and I just "smile"

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