Chiari 1 do I have decompression surgery ??

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hi I Ve been diagnosed with chiari 1 hindbrain herniation (11 mm) and my N.S is Mrs A. White at QE hosptial (uk) .My surgeon strongly reccomends surgery but I am so scared of how it will leave me after reading stuff on the net ! 

i suffer every single day with excruciating pressure headaches , dizziness , nausea,blurred vision ,tingling of limbs,severe neck pains the list goes on .i survive on pain meds 4 hourly .

i m also concerned how long I will be off work as I dont paid whilst off sick . I know health is more important but I m a single mom with bills to pay😔. My dr is vague regarding success and recovery and as to whether it will be dangerous if I in time if I don't have decompression surgery ? 

Anyone who can give me experience /advice would be greatly appreciated 

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  • Posted

    Hi Mandy, my name is Chad. I am registered at QE as well. I've been diagnosed since 2010 approx.

    I was seen by Mr Gan and then Mr Kuruvath and now both of are no longer at QE. The only NS makes sense is Mr Graham Flint. It's very difficult getting hold of him. I got to see him after 5 years of waiting. GPs don't have a clue what they are on about. I am on lots of pain killers which are taken every 4 hourly just like you.

    Try to make an appointment with Mr Flint and I would not recommend surgery but evey one is different.

    Keep in touch so we can chat further and perhaps learn a thing or two.

    Talk to you later & stay positive.

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    • Posted

      Thanku for replying 

      I m due at QE 16 th February . Can I ask did u pay to see Mr Flint ? 

      I haven't seen him as yet 

      thanks

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    • Posted

      Hi Mandy,

      No, I did not pay to see Mr Flint. You don't have to pay to see the experts. Just tell them that you are not satisfied with all the answers and would like to see Mr Flint as he is the most senior NS.

      Let me know if there is anything else I can do.

      Regards.

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  • Posted

    Mandy I can only speak about how it was for myself. After the surgery I was surprised that it wasn't as bad as I had thought it would be. Once recovered I was happy I had done it because the headaches and other symptoms were gone.

    I continue to have chronic pain because I'd waited so long my body created a syrinx inside my spinal cord Be certain you get a surgeon who has experience with chiari

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    • Posted

      thankyou for taking time to reply . 

      I don't have a syrinx at moment but does it mean if I leave things I may develope it ? I've never had this explained .

      Could I ask where you had surgery and how long recovery was ? 

      Thanku

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    • Posted

      Hi Mandy. Yes you can develop a syrinx if you wait too long for surgery because it's the progression of chiari that causes it to happen. I can not stress enough tho of the importance of having the right surgeon to do the job, even if you have to travel. Chiari is rare and you are raging a war against it. Like before I can only relate what happened to me. If I had not waited so long, I wouldn't have Syringomyelia.

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  • Posted

    There is a website at. .. wacma.com there you will find so much info. It's short for WORLD ARNOLD CHIARI MALFORMATION ASSOCIATION. so much help for newly diagnosed people

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  • Posted

    Hi,

    I had a 13mm herniation and had surgery in 2016. Surgery will help stop the herniation. It is not a cure for Chiari. As everyone will tell you, make sure you get a specialist. You might check out Chiari on utube. There is a lot of info. Unfortunately, in my case, I had cervical fusion surgery prior to the chiari surgery. I haven't recovered well. The important thing is to try to have a positive attitude. Also, seek guidance from a mental health professional. Please let us know how things turn out.

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    • Posted

      thanku for replying . 

      Did you have surgery in Midlands ? 

      Ive got N S appointment on 16 th feb will let you all know what happens 

      thanku 

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  • Posted

    Hi Mandy5611 go for the surgery as soon as you can is my best advice.it will only get worse
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    • Posted

      thanku for replying 

      this is what I'm interested in finding out whether it will get worse or not ? I've asked NS several times but they won't commit

      thanks 

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    • Posted

      Hi Mandy. The problem with decompression op for Chiari is that it affects people in different ways. You could be up and about after a week (some do as reported on here) others take longer. The QE staff obviously couldn't commit to a time scale, as stated everyone is different. And again it depends on the type of op, say you had to have cauterisation as well as decompression it might take longer. Sorry to sound so pessimistic but remember if you don't have the op things only get worse. In my case before op if I coughed I passed out, (dangerous!) not now thank goodness. How would that effect your life passing out?

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    • Posted

      Hi I have passed out twice in the past year doesn't happen regular but I know what you mean 😔

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