Chiari decompression help

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Hi i had my decompression surgery april 2014. I still suffer with the pain but i now have shakey vision also on my last eye test my vision has gone down 2 levels amd i need to go back in 6 months. Has anyone eles suffered this, i cant find anything about this and wonder if its a mistake?

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  • Posted

    im not dealing with pain just a sharp stink in my head every now and again but as far as the vision when i look left i have to close my righ teye in order to focus and im now a little near sighted when i didnt use to be so it must be one of the effects after surgery idk -_-
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    • Posted

      Im sure i was never told of the risks to my vision, its a horrible feeling when your looking at something or someone and it starts to shake. My memory is rubbish, i forget most things, i used to be good at doing lots of things at once. Now i can only concentrate on one thing... I forget passwords but when i give myself a few mins away from it i remember again. Its a very scary place. Have you spoken with your surgeon about it?
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  • Posted

    I haven't I know that there are some things that ciome with the surgery like memory vision and other cognition skills I'm not too worried abot it because I'm still able to live a normal life and things are tolerable but if things worsen then i may see my surgeon
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  • Posted

    Hi Rachael, I had my decompression 4 years ago and like you still have all my symptoms, lately my headaches have become more severe my doctor has had to give me more pain relief. I too suffer with my eyes, whenever I ask my optician he tells me it's neurological. This condition leaves us with so many problems. I hope you this eases a little for you. X
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    • Posted

      Thank you for your reply. I had mine last march and recently had an appointment.my surgeon wasnt there nut i spoke to another member of hos team. They said my last mri showed the decompression had helped. And the cfs?? Flow was good.yet here i am Im awake now with head and neck pain and it feels like my left eye ball is on fire. I knew there was a risk the op wouldnt work, i really thought it would.. Id wake up pain free.. But it wasnt to be. Iv had this pain 11 plus years.. 10 of which being told i have migrains and that treatment not working.. Im already on lots of medication due to having spondulosis. I was given nortriptyline to ease the headaches and they have helped.. I have headaches the majority of the time instead of all the time.. Im told thats a good thing! It doesnt feel it tbh. I hope your medication helps x
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    • Posted

      Aww bless you Rachael, I know exactly what you are going through. Most people do very well after their decompressions, some don't have any relief other the headache eases, then there are the odd few for whom the symptoms get worse. You and I fall into that bracket! I've been referred now to three Neurologists and all of them didn't listen and blamed everything on Migraines!! I've had migraines, and certainly can tell the difference, lol. I'm on Gabapentin and Tramadol but as I said they're not touching the pain now so doc put me onto CoCodamol as well. My pain is the back of my neck and the top of my head! 
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    • Posted

      Mine too... Its horrible isnt it. It reaches another level when i do any kind of strain, bend over stand too fast... The throbbing stab pain.. A lot of drs over here now very little if anything about chiari, id never heard of it either lol.. I hope you get some relief soon.. X
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    • Posted

      Hi Rachael,  well I might as well have swallowing smarties for all the extra pain relief is doing! I've now got the cough headaches back too! I've mentioned this in another post. I belong to the Ann conroy trust and every year we have an AGM. There are Chiari specialists and one of them, a very eminent Neurosurgeon, Mr Flint says that people with Chiar should never see a neurologist. He said they don't even work from same page and know very little about Chiari. He says we should only ever be seen by neurosurgeons! I hope you are feeling a little better xx
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  • Posted

    Hi , I'm so sorry to hear that both of you never experienced any relief . I was one of the lucky ones . I woke up in intensive care and despite knowing if had an operation I knew my pain was gone .

    That said it has come back , the headaches started 10 - 12 years ago and at first I took every pain killer I could get and got no relief at all . So I stopped .. Stopped taking all pain killers and learned self hypnosis , like the slow breathing techniques they teach you in birthing classes . It helped , I can control my own pain ...

    That said a more recent development is double vision ,blurred vision and significant pain on movement of my eyes . Optician says its neurological . And now I keep blacking out . I've been referred back to my neurologist where I will ask to be referred to the neurosurgeons in Liverpool . As my research says that they are the best .

    Good luck I hope you can find some relief but I'm a firm believer that constant analgesia is actually counter productive over time .

    T xx

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