Chiari 1 surgery advice

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Hi all! I’m new to this and wanted some help/advice. I am a 26 year old female and found out my symptoms are Chiari related. I have daily headaches, vertigo, nausea about 3/4 times a week, I stumble at least once a day and sometimes my face gets tingly/numb. The doctor ultimately left it up to me if I wanted surgery. He did state if it gets worse I will need urgent surgery. I’m not sure what to do and would like some guidance from people who are dealing with this too. Has anyone has these symptoms and had a successful surgery or not as many of these symptoms with a successful surgery outcome? 

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  • Posted

    I have had surgery and my headaches have all but gone, still get mussiness and tired and pins and needles but it all depends on your chiari situation and how long the pressure has been on your spinal cords nerves how quickly you recover. I am told that some symptoms recover and others take longer good luck.
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  • Posted

    Hi 

    I have been in a very simalar situation as you, I was diagnosed in February with a chiari, I had been suffering from horrendous pains at the back of my head/ neck for years when ever I laugh, strain, cough, sneeze or play sport. Also I have started getting a numb tongue, so i was sent to the Walton Centre in Liverpool (who have been amazing) They gave me the option of surgery, I know it's such a hard decision to make, it's brain surgery at the end of the day lol

    However I have opted for it and had my pre op done last week and am just waiting for a date for the op. Can't say I am looking forward to it. But I am just trying I be positive about it :-) there are worse things to have and I am fairly lucky as some people on hear have much worse/severe symptoms.

    And If left untreated, the symptoms I have can get much worse so I just want it sorted now and not love in hope it doesn't get worse? 

    Hope this helps and keep your chin up. 

    Tom 

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  • Posted

    Hi Laurbabe1,

    I am suffering from your same symptoms plus more.  I had decompression surgery in 2012 and started getting bad again in 2015.  Now I have what you are experiencing; I take 3 Dramamine a day once the nausea kicks in.  I can't have any pressure on the back of my head and if I do I vomit.  Anyway, neurosurgeon is sending me for more intense MRI's and MRI full spine. My biggest fear is that they find nothing and I have to live declining in health.  Already I don't go anywhere in fear I'll fall, get in an accident, etc.  To answer your question is surgery successful? YES but most of the time it only lasts a few years.  I'm so sorry you have to deal with this at such a young age, but do your own research, educate yourself and you will find what's right for you.  Make sure to elevate your mattress under the mattress with books where your head is, but must be under the mattress and try a down pillow under your head.  This will help you with your balance.  Good luck and stay strong smile

     

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  • Posted

    I understand your concerns. I was diagnosed with cmf1 7 years ago but was bearable until a month ago. It has dropped from the base to past my C2. My neurosurgeon says it is time for surgery when my breathing & heart rate are effected. I have very few headaches though. My surgery is scheduled for 12/27. I am holding onto the thought that he said even though it is brain surgery they don't touch your brain which comforting & amazing. Prayers  it works out for all of us!

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