I know what you mean..no one wants to choose this surgery and if there is no choice on the patient's side then more then likely there will be left over issues as a result.
Wanting surgery and feeling like symptoms warrant it also may not be the correct way to look at it either.....granted we do not know when or if symptoms will worsen...but if there is a CSF obstruction we know left untreated a syrinx can form...and that is regardless of current symptoms.Left untreated a CSF obstruction can lead to not only the formation of a syrinx but once there and left alone, it can lead to perm nerve damage.
My surgery was done to prevent a syrinx from forming....when I was first DX'd I too felt like you, I did not have the severe symptoms, and others here seemed worse off...but with time and info from my Dr I understood just how my Chiari was not only affecting me but my overall health
Thanx for your reply Selma seen a lot of you around the forums with great replies!
Being in the uk it's kind of hard to get information on the surgeon I seem to find?
He did give me his number but I can't remember where I've put it lol (my memory is absolutely terrible at the moment) so will have to ring the hospital on Monday unless I have another thing like that I'll be off to a&e because it was scary haha
I'm being seen to at the Walton Nuro centre which is highly rated and reports having surgeons familiar with chiari.
My ns name is Niel Buxton.
I have a full spine MRI on the 16th at his request to look for a syrinx or any other problems to be safe.
Reading most people's posts bar this flare yesterday my symptoms are quite mild but I can relate to all of them over the last year. Things like ibs and acid reflux I've had all my life so I do think chiari could be responsible for them after researching about it.
I have been offerd the decompression if i want it but I just don't think my symptoms have been persistent/aggressive enough to justify the invasive surgery.
Not a nice situation as you will know yourself there's no guide book to this thing so knowone to tell you if symptoms are going to get worse so I have been quite anxious latley to have the surgery or not as I've also read about chiari, in some cases rapidly progressing and surgery isn't a cure more of a prevention. I'm age 30 right now and not getting any younger lol! If this episode I had becomes a recurring thing that will be more than enough to give me the kick I need to say yes to surgery or if anything comes back on the MRI.
So sorry for rambling haha
Hi and welcome to the Chiari forum.
Your symptoms are typical Chiari symptoms.....since Chiari affects the spinal cord and brain stem any and all symptoms could be due to Chiari.
BUT it is important to rule out ALL related conditions as well.
Chiari symptoms can cycle and flare so we are told to avoid certain activities which can trigger a flare.....we enjoy when the symptoms seem to leave and pray for them not to return.
Do you know a true Chiari specialist?