Decision about surgery - please help

[Miriam7]

I was diagnosed with Chiari about two years ago, after three or four years of symptoms getting worse. I am currently seeing a neuro surgeon who has put me on the waiting list for decompression, but I am not sure if the surgery is right for me. I am relatively lucky with the symptoms I have - my visions is blurred and I have a lot of floaters, my balance is terrible and I have quite severe fatigue, but actual head aches and neck pain are still episodic and not that common. The symptoms I have are definitely affecting my life, mostly because I am exhausted all of the time, but I'm not sure if it's worth the risk to undergo surgery. Has anyone else had the surgery and found improvements in vision problems or fatigue?

[selmaS]

  Ask the Dr suggesting surgery if they can do a CINE MRI to check CSF flow and also ask about the benefits of having surgery at this point, what they feel u will gain by having it and risks u face having it or not having it....

Only the Drs that have examined u can give u these answers.

I know it is not an easy decision to make, but u do need more info then them suggesting surgery.

[Miriam7]

Thanks for your comment. I don't have a syrinx, but I don't know about CSF obstruction. Since I live in the UK, it's hard to see a proper specialist - the NHS just send you to your nearest relevant doctor. Both the ophthalmologist and the neuro surgeon I'm seeing have treated Chiari before but can only advice me that I qualify for surgery, and must decide on quality of life. It is a very hard thing to judge!

[selmaS]

  Hi and welcome to the Chiari forum.

As Frankie mentioned we can only speak of our own experience....but, many times we do not have pain as the nerves are compromised and that can be a reason, so instead of just looking how u feel, also look to how ur Chiari is affecting ur overall health...such as do u have a CSF obstruction, a syrinx, or ne related conditions....

Not all with Chiari will need surgery, some just need to be monitored, and with the guidance of a true Chiari specialist will u be able to decide what is right for u,

[Miriam7]

Thank you for your comment! It's really heartening to hear you had such a good experience with the operation. I am just scared that I will have the surgery, and all the risks and healing, and my eyes and fatigue will still be bad. Very glad it has gone well for you!

[frankie_rush]

Hello and welcome to the community,  This is only my opinion and what surgery done for me.  I had the bad vision and terrible balance and my fatigue was mild.  I also had a few other symptoms swallowing and getting choked, slurred speech at anytime.  I had the surgery in July 2012 and eveerything has either went away or very mile.  Basically the only things I have is the fatigue still mild and it only happens when playing with the grand baby and she makes me try and keep up she is 5.  I haave got tingling, that is because my syrnix was the size it was the the nerves is still in the healing stage.  I had somne other issue from surgery but would do it again with no waiting.  But like I said this is only me.  You have to do what is good for you and what you feel good with.