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Can Chiari Return?

Posted , 5 users are following.

debbie70359
debbie70359

I had Chiari with one of the biggest Syrinx’s the Drs had ever seen in Bristol (UK) just over 12 years ago, with hardly any symptoms, was found quite by chance. Had decompression surgery & after a very long recovery felt good again. 

However, recently been having odd symptoms, the last two months have been bad. Thursday I had a serious attack of Vertigo, which has now gone, but left me feeling dreadful. I have Dizziness, feeling sick, numbness in right arm & severe muscle weakness in both arms, ear pain, constant need to go to the loo, bright lights effect me, Back pain, the list is endless. When I mentioned all this to my Dr & suggested maybe it was to do with Chiari, she dismissed that immediately!

I’m convinced it is...so where do I go from here?? Anyone else in the U.K. with similar problems??

0 likes, 7 replies

7 Replies

  • sarah55077
    sarah55077 debbie70359

    Posted

    I have the exactly the same symptoms and  dismissed by Gp also,you just have to keep on about it to them,i am now back under the care of neuro surgeon at the QE Hosspital in Birmingham. My consultant said it is very rare that it returns but it can and I am going in for a lumbar puncture so that they can release some pressure. Really hope you find a way to get through to your GP. Goodluck x
    • yeltzer
      yeltzer sarah55077

      Posted

      Had exactly the same problems at my old GP and the QE. Old GP stated "you've had the op your cured." Still getting the old symptoms. Neurosurgeon says its down to migraines??? MRI QE say was OK, even if they didn't give me a follow up MRI till 7 years after op. oops. Had lumbar puncture, high but they said it is acceptable due to my size. Loosing faith in QE. I follow CM on a few help groups and it is quite often mentioned on those. Also if you look at the pamphlet issued on CM by the Walton Centre Liverpool they state symptoms can carry on even after OP and can get worse. Might ask to get referred  to there. Good luck.

       

  • b2wc97455
    b2wc97455 debbie70359

    Posted

    Hi there, it does not matter, whether you to QE, Bristol, Walton, Mayo, Chiari is Chiari, yes, they can come back again..it depend on each individual how they live their life after decompression..but prior the surgery you all sign the paper work....? its never sure..but its prevention to get worse..do you go back to your normal day to day life after decompress?..we should be careful..patient on chiari..have a high pressure..hence Lumbar puncture help..but then you have to keep having it occasionally..what about having regular yoga..reflexology and massage (no neck nor head massage though)
    • yeltzer
      yeltzer b2wc97455

      Posted

      Conflicting reports. My neurosurgeon wrote in a letter to my GP that about 20% of patients after decompression still had symptoms. I have symptoms that seem to be getting worse and asked for a new referral. That's when they realised I'd had no MRI after decompression op as they had forgotten me. Had follow up MRI 7 years after decompression which apparently was fine (took about an hour for MRI). Had Lumbar Puncture, as said previously, was a bit high but Surgeon said alright. He also said repeat symptoms after op were rare, and yes he was the one that wrote the comment about the 20%? The pamphlet from Walton does give a clearer picture of what to expect after decompression.

    • b2wc97455
      b2wc97455 yeltzer

      Posted

      Hi Yeltzer, how are you, still working part time are you?, the issue is whether you keep living like a normal life though, which I think as chiarian we can't , we have to be careful..(IN MY OPINION) if I carry something heavy..I will have terrible back, neck, shoulder, head pain the next day..as prior to surgery I never felt like that..I wALK EACH DAY..without yoga each morning..I doubt that I do not get back ache..I am not sure if it is because of post decompress..but I never had it before in my life..but the nice think is, after surgery..I have no horrendous headache, imbalance, unable to walk, nor swallow, kept blacking out..etc..etc..and drug free..so..there are lots of benefit of having decompress, but we have to be careful after that..you are not be able to play tennis ..or squash..like I used to ..so..yes..acceptance of our condition is paramount in order not to feel the symptom...but we must keep mobile..but gently.....  

    • yeltzer
      yeltzer b2wc97455

      Posted

      Unfortunately I had a bad recovery. Had the op the week before Christmas, unconscious that week but came home Christmas Eve, can't remember anything for the next 3 months.Needed 24/7 care  although was mobile I believe. Suffered injury by collapsing during that time. Hence with bad memory never worked again. I realise I was unlucky most people recover well. After 6 months carried on as normal however symptoms seemed to be coming back.Recently I realised  I had had some of these symptoms for the previous 40 some odd years with them put down to stress headaches etc. Long time Chiari. And yes I have been careful with my life since but tried to carry on as normal. Now I have constant pain in neck, nearly pass out if I cough or strain, even going to the toilet causes stress. Feel completely fatigued all the time. Have had all the usual symptoms returned, neck, tinnitus, eyes, muscles, memory ETC. Everyone is different and I think I am just one of the unlucky ones. Am on several CM sites and find there are a few more like me but most, a good majority, progress well.

       

  • cakal76334
    cakal76334 debbie70359

    Posted

    Debbie ..ask for an new mri..and check the csf flow..a cine mri..what kind of back pain do you have??
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