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I had decompression surgery in 1985 aged 15

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Leggs
Leggs

Hi , I'm very new to this site and am not sure exactly how much information to give .

I was operated on by Bernard Williams in April 1985 when I was aged 15 . I'd had headaches for 10 months , loss of feeling in my feet and pain between my shoulder blades . My cerebral tonsils were removed and the bone removed .

Following the surgery his comments were .. Not quite as curved as I'd like to see but pretty good .

I believed , apart from some mild ( compared to what they were ) headaches the operation was a complete success .

Recently 30 years after the surgery I have been experiencing severe headaches ( worse on coughing , sneezing etc ) blurred and double vision ,very very odd feelings of dizzyness and nausea and loss of consciousness , combined with some jerking of my upper limbs ( so my son tells me )

My GP has requested another MRI and referred me to neurology ..

I suppose my question is does this even sound like a possible recurrence and whom should I request to see for an opinion . I'm

So far out of the loop involving this condition

Kind regards

Leggs

0 likes, 5 replies

5 Replies

  • jennacyde
    jennacyde Leggs

    Posted

    I am sure you know that there is no cure for Chiari. The sugery you had was a treatment. I believe that Chiarians should be evaluated annually for changes. Not sure if you have been doing this. Good you are getting an MRI. You will need to consult with a Neurosurgeon that specializes in Chiari. There are very few of those. Is your original surgeon still around? I'd not can you find out who took over their patients? Possibly they treat Chiari. I cannot stress enough how important it is to see a Chiari specialist. Very few doctors understand it well enough to be trusted to treat it. It could possibly be that there is nothing they can do surgically. You had a good 30 years, which is great, I hope you find the answers and have many more.
    • Leggs
      Leggs jennacyde

      Posted

      Thank you for your reply ,sadly no mr Williams has died. I will have to research where the centre of excellence now is.

    • jennacyde
      jennacyde Leggs

      Posted

      Where do you live, I have a short list of recommended neurosurgeons.
  • b2wc97455
    b2wc97455 Leggs

    Posted

    Hi  I heard that even after operation, that can ocured again but its great though..your first oepration its succesful at least you have such a great 30 years quLITY OF LIFE.. ARE YOU FROM UK?
  • nihilo
    nihilo Leggs

    Posted

    The good thing is that you already have an MRI booked, which is what any specialist will need to comment on your condition. I am 2 years post surgery and am worse than I was before, however, my last MRI revealed a collection of fluid around the surgery site. Due to where it is I am experiencing symptoms almost identical to what you would expect before surgery, simply because the fluid is causing pressure where the old bit of skull was. My brain is normal and my surgery was successful as I no longer have an extensive syrinx and the flow of CSF has returned to normal in my spine.

    My point is that there are many other possibilities for a change in symptoms that do not neccessarily point to a reccurrence, and an MRI should give alot of answers.

    I must stress how important it is to see a specialist as jennacyde said, as they will be aware of other possibilities that may be the cause of your symptoms. Best of luck, please keep us updated.

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