I had the chiari decompression surgery on March 8 2016 and I have symptoms worse and new

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The doctors keep telling me I'm okay and that it is all in my head . I have the worse symptoms than before and new ones . What should I do because no one is listening to how much pain I am in

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  • Posted

    I had my surgery 6 weeks ago on Sunday I feel my symptoms have become worse and the pain has increased since having it done. I thought the surgery would get rid of my symptoms it didn't. The new symptoms I have is I can't move my head left or right up or down. I'm at my specialist in July keep bugging ur doc u know ur body better than anybody. X
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    • Posted

      Hi Claireabella, I wish I could take your pain away too. Please have a swiftest possible recovery, I will be thinking of you. Xx
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    • Posted

      That's really kind of you thank you karen05086 ๐Ÿ˜Š u seem so positive, I'm trying to be like that and waiting to see if anything positive comes out of this surgery. โ˜บโ˜บโ˜บ
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    • Posted

      Hi Claire.. Sorry to hear your in so much pain I had my decompression in January 2016 walker to theatre... 7.5hrs later... Came out and have never kee since. I'm wheelchair bound out doors and dependent on a frame indoors... My pain is even worse I spend more time crying in mental and physical pain. Nobody is giving me any answers. Just passed from pillow to post. My experience has been so bad I've written a letter to the chief commission of he NHS for answer for such poor care. I really hope you feel better soon.... They say it's worse before its better I'm still waiting to se the better part but hope u have a speedy recovery

      Kelly xxx

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    • Posted

      Hi Kelly. I'm so sorry to hear that you are still badly suffering so long after your operation. I hope you get something positive back from the chief commissioner as this illness seems to be swept under the carpet by so many people in the NHS. Wishing you will start to get better soon hun. ๐Ÿ’ž
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    • Posted

      Thank you Karen... Yeah I no what u mean. Over here in the uk it's like a laughable illness nobody takes u serious or can get there head round it all. But I've joined a group with ppl from the states and they have like a chairi support day in September.... Do fun runs and all sorts just like we do for cancer over here. Ppl don't seem to understand that even this illness/disorder can be a killer and I've spoken to so many ppl who have listed loved ones because of it. It's scary really scary if you the one going threw it but, I think even family manners find it hard to grasp.

      I'm thinking of trying to look it's making this a public thing like make a charity and make more ppl aware about it. Thank you again Karen for your kind words. It's just so hard I've 2 small children aswell so this has Inpacted my whole family xx

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    • Posted

      Hi Kelly, you have my full support, its time people in this countrywere made aware of this illness, there never seems to be any media coverage on it. I will gladly help to start a charity with you, even a radio interview would be good. This could bring a lot of people out of the woodwork. Speak soon. Xx
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    • Posted

      Guess Kel230213, Before I was diagnosed properly with Chiari Malformation doctors would genuinely laugh at me for questioning about the illness. It was ridiculous going into appointments knowing more about this condition than the docs.It's only when I was properly diagnosed 2 years later they started to take me seriously.

      I think it's fantastic you want to make people more aware of the condition. ๐Ÿ˜€๐Ÿ˜€

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    • Posted

      I hope you feel better with the pain meds even though they don't work for me. It so upsetting how the so called doctors don't even listen to us as if we don't know what we are yearlong about. You can't possibly still be having trouble, all your problems are all in your head
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  • Posted

    I'm so sorry for your suffering Martiniqueo. I wish I could take your pain away. From what I've read, things seem to get a little worse before they start to get better, it will not be short haul but just hang on in there, don't you ever give up. I will be thinking of you and will pray for your swiftest possible recovery. Xxx
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  • Posted

    Hey there Im just reading what you said an I was the same way , I was in soo much pain for the longest time after I thought it was never gonna end. I had many MRI after an the docs said i was fine.. Did feel fine thats for sure... I had really bad anxiety from the surgery which made it worse for me ,as soon as I got my anxiety under control I got better may sound weird but the anxiety meds worksed with in days I felt better. An I was out for 3 months after thought it was never gonna get better almost did the unspeckable ..
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  • Posted

    I am so sorry to hear this, I had surgery last Feb 15 and it took a good 6-8 months to move head and kneck properly again , I'm sure it will settle down I was in a terrible state after and wished I'd never had it done but a year on although I don't feel the same as before the surgery (hard to explain) I don't have as much pain . Keep smiling I'm sure your through the worst of it, it can only get better. Rest as much as you can and try some heat patches on your shoulders xxx
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  • Posted

    Hi new to the 'patient' don't think it's in your head , it does take a while to settle I was off work for just literally over a year after my Arnorld charhi- malformation -syrinx . It took an awful long time . Even then it never completely went . 4 years ago April 10 th I had my 7 and a half hour operation , am now 6 weeks coming out of hospital after getting viral meningitis on the brain waiting to see neuroscience people next Tuesday ! As I'm suffering on and off with symptoms I had last time before and after my operation . I also have swollen wrist fingers hands nearly all the time going a deep mottled purple/ red colour . My neck is tender as well as shoulders . I do not feel the greatest and really did not think four years on id be here again , off work reviving a rubbish wage fed up and down wondering what the heck is going on with me . Reading up and finding out ( after I got told last time by top neurosurgeon that it was have operation or sometime soon you won't have the choice ...) that I could end up with the sprynx filling up and the same with the brain . Fed up doesn't cut itย 
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  • Posted

    No matter how many times you do it , if you need to go back to your Dr.s if no response see another Dr. It's your health and you need itย 
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