any advice on the decompression surgery?

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After 30 years of being fobbed off with migraines and tension headaches I have now been told I have a chiari malformation and syrinx. My consultant also said that there is no flow around the back of my head which is causing the shoulder pain and headaches. He said he can justify me having the surgery but I said I would rather have a checkup in 6 months and then decide. I was ok yesterday when I had the appointment and was told all of this but today I feel really down especially as it looks like surgery is not always 100% successful. Can you let me know your surgery stories, good or bad, so I can make an informed decision? Thanks 

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  • Posted

    Hello vicky42275,

    I had decompression surgery in August and I had similar issues the fluid was not flowing properly as well. After the surgery my headaches went away but now I have nerve damage on the right side of my head. I would rather deal with the numbness than to have the headaches. I would say have the surgery you will benefit from it....

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  • Posted

    Hi Vicky,

    I was diagnosed with chiari 7 years ago & am now facing the choice of surgery. I have decided to go ahead with it to hopefully stop the progression of my symptoms. I have no syrinx.

    Perhaps it would be a good idea to get a second opinion or go back armed with questions & take someone with you to help with your decision.

    Chiari surgery never promises to make you a 100% better but does try to prevent your symptoms from getting worse.

    There are lots of websites about chiari but stick to the UK ones. The Ann Conroy Trust is worth a visit & has patients stories on there that may help you. Also, check out the Walton centre, Liverpool. Superb team of specialists in this field.

    Good luck!

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  • Posted

    March 23, 2011 i was diagnosed with Arnold Chiari malformation an was told if i didn't have the surgery I'd be in a wheel chair in 9 months cause proalisizest had already started in my hands an fingers... April 11 2011, I had the Arnold chiari malformation surgery an the removal of my c1 an c2 at the age of 33.. I was lucky I didn't really get bad headaches ,but I had problems swallowing , my vision was going things were fuzzy an when they weren't everything looked doubled an my balance was really bad I couldn't even walk a strieght line. Every once in a while my legs would give out an I'd drop to the ground.. The surgery lasted about 5 hours an I spent 4 days in the hospital an then sent home.. There was 13 staples in the back of head for about 10 days after was very uncomfortable but at my surprise it didn't hurt when they were taking out .. I had talked to a couple people that had the surgery also an 1 buddy was back to teaching yoga 4 weeks later.. Well that wasn't happening for me, I found that that the pain wouldn't go away no matter what I did..(even taking oxy) The only relief I got was when I had a warm shower an let the warm water fall on the back of my head.. Heating pads also worked a little bit but all in all I didn't take to we'll to the surgery .. I had a recovery of about 7-8 weeks ... I would recommend getting the surgery an not to delay , if you need it get it done an over with so you can go back to living a normal life... Just cause you were ok 1 day it's still there it didn't go away an symptoms I think are garantied to get worse.(did for me).. If you have the chance to have the Surgery you should jump on that cause there's many people out there that don't have that option... Now that the years have past I've relized that having the surgery was the best thing I could of done.. You just have to stay positive cause its not an easy thing to go through.... I wish you all the best in whatever decision you make..
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  • Posted

    Hi Vicki. 

    First and foremost, please learn as much as possible about CM as you can, so you can make an informed decision, but also research your DOCTOR as well. Your NS sould be a chiari specialist, focusing (solely) on CM and all related conditions. It is so important that your Dr is a specialist. 

    I have seen too many people worse because their doctor was not a specialist in CM. 

    I was very anti surgery. But I eventually found a NS that i trusted with my life. He did my surgery in 2013 and he did it RIGHT. 

    No - I am not cured, but he saved my life.  

    I run a support page on FB cthat has over 1300 members who support each other. Please feel free to join us. 

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  • Posted

    I was diagnosed with type 1 Chiari when I was 15 I had no flow at all and was told if I didn't have the surgery if be a paraplegic by the time I was 25 .

    It seemed a no brainer of s decision ( please excuse the pun )

    I' had 20 years pain and symptom free and now 10 years of uncomfortable but controllable headaches . Now vision and black out issues

    I am very happy I had the surgery , it most definitely gave me a life .

    Good luck

    T x

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