Chiari malformation help

Edited , 7 users are following.

i had decompression surgery 3 years ago in september comen im not sure if its normal or not but i still get headaches everyday also the back of my head is very tender and a little sore even when i run my fingers thru my hair n touch my scalp. i feel tierd all the time i still take medication but tbh i lm not sure if it accually helps when i get sore head at night i cant take my medication as it keeps me awake so 6 out of 7 nights i goto bed with a sore head diferent from what it was before my operation now it just seems to be the right side like the temple and obviouspy the sore numb strang feeling at the back anyone else like had operation a couple years ago and have similar kind of symtoms?

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  • Edited

    That's terrible,

    I'm sorry you're having such trouble.

    Does the doctor have an opinion about your discomfort?

    This is the kind of story that makes me want to cancel the surgery.

    I went 16 days in a row with a terrible headache. It finally relented on Thursday.

    It came back this morning. So tired of this. I hope you find some relief.

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  • Posted

    i havnt had the surgery yet but what u say is how i feel i have been diagnosed with fibromigia so they pushing blame on it and apparently symptoms can be same so they dnt wanna do surgery incase or leaves me worse of and im still same i totally get u abour pain i still have numbness down facw and see water and when i tell them about this aswell they really snt wanna do the surgery yet do u get the pain when you loe on pillow at back of akull going to sleep or sirring with head on pillow x

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  • Edited

    hi, I had surgery 3 half years ago and have spent all that time in pain. I've had several MRIs all normal, in the end ice had to be strong and work through different medication till I found one that helped. I'm on 300mg of pregabilin and although it was a tough few weeks getting my dose right for the first time in over 3 years I'm pain free! iv had my days of pain but nothing like I've lived with all that time. The neuro surgeon explained that although the fluid is flowing while ever I have herniation i will always be in pain and surgically nothing they can do.

    with chiari we all have different symptoms, i have a very sensitive scalp, pressure and soreness at my surgery site and obviously the headaches to name a few symptoms. its hard but try find a good GP who is willing to listen and help . Good luck x

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    • Posted

      I was on tramadol after my surgery it was awful coming off it the withdrawal effects can be nasty. I tried gabapentin too but found it didn't help. to be fair pregabalin is from the same family and equally you have side effects increasing it but I've been astonished how much it has worked. seek a new GP if you don't feel supported its taken me a while to find one I'm happy with and understands i know my body better than them. the issue we have is GPS don't know the illness so its finding a GP without an ego and works patient lead practice! Good luck x

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  • Posted

    seems thats all they give am on gabapentin and 30/500 paracetamol doesnt help geel like they dnt understand and then bad depresssion because so sore

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  • Posted

    my surgeon said i still have tonsil descent with alot of fluid in brain more than normal but because after they did a endoscopic third ventrical surgery theres a flow slow but a flow still doesnt help ive block ducts on brain too get numbness down face n arms feel like cant swallow at time but like everyone here its a fight to get thro day

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  • Posted

    Hi I had surgery 5years ago, not been easy but I'm on ondanstron and other medication as my side effects off surgery are nausea, dizziness.. I get the swallow thing now and again. My head is still sensitive and hair is even sensitive now and again... Had couple of follow up scans and all the consultant said was there is still space and nothing further they can do to see gp. They just supply me with head ache tablets and nausea medication.. I just try to keep myself as healthy as I can, good and bad days...

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  • Edited

    It certainly is. I can't do what I used to do but I'm thankful I'm not as bad as some with this, my heart goes out to anyone, just not enough known about it so feel like we are just passed on. X

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