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Chiari 1 malformation

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michelle2106
michelle2106

Due to my chiari 1 malformation it has caused a large syrinx through my spine. I had surgery 12 months ago but they left the syrinx.

I have been and still am experiencing a sharp pain from the top of my arm down through my lower arm and into my ring finger every time I sneeze and it's only recently the pain is getting worse.

Is this just something I've to live with from here on out? All tips and comments would really be appreciated smile

0 likes, 3 replies

3 Replies

  • b2wc97455
    b2wc97455 michelle2106

    Posted

    Dear Michelle, I am sorry to hear about your condition, is there any chance for you to go back to your Neurologist/Neurosurgeon to explain all of that...it is not right..I am chiari sufferer and had operation 2 years ago, I am pain aND DRUG FREE...if they hadnot done a proper job they have to re ctify it..please be positive it is a light at the end of the tunnel..it took me over 6 months to get rid of some of the ache and pain
    • michelle2106
      michelle2106 b2wc97455

      Posted

      Thanks for your reply.

      Fortunately enough I've never been reliant on any pain killers. I'd only ever use them every so often.

      I met with my surgeons team two weeks ago and there was talk of putting stents through my spine to Get rid of the syrinx. I want to try avoid that for as long as possible as it's quite a risky surgery. I'm still undergoing physio because my neck is still quite weak a year in. I'm only 21 and the pain makes it hard to be active as the syrinx causes my back pain too

  • b2wc97455
    b2wc97455 michelle2106

    Posted

    Physio is good, but unfortunately you really need that shunt...but just cooperate with them ...or if you can stand it without pain killer or without rectify it then carry on with your present life..but should suffer..u are only young ..they are very expertise in doing shunt --- the fact is..our life also always at risk,..when we drive a car..go on holiday..they will always a risk of accident or airplane crash..u have to take that chance
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