To those who have opted not to have surgery

[Maureen101]

Has anyone been successful in managing chiari  1 malformation for years
without surgery or drugs?

What has helped you?

Thank you for your reply,
Maureen

[selmaS]

Hi Maureen...haven't seen u around in a while....how r u?.....and I have to agree with Sue...we all have had this since birth, and I know I have compensated in order to do things for yrs.....so if u want to put off surgery u would have to have reg MRI's to check on herniation and make sure u don't develope a syrinx....and compensate in order to continue to move forward...which even after surgerty is a good possibility as well.
if u wait too long for surgery and u have some extreme symptoms and conditions it could be permanent ......chiair can stay one size for a long while or it can grow quickly...everyone is different.FInd a chiari specialist and follow his/her suggestions....it's all that all of us can do.
I am not saying u will get worse or have perm damage....but there is no cure.
Over the yrs I found meds do nothing for it.....so I am very seditary.  do a little at a time, because I know if I do this or that how I am going to feel, on top of how I am already feeling.
I don't remember ur herniation or symptoms.....if  u have meds that work for u, by all means give it a shot, but u have to be comfortable with ur chiari dr and the surgery.

I hope this is of some help.

Godspeed
"selma"

[Hursty48]

Hi there.
I guess since we are all born with it we have all lived with chiari 1 for years without treatment or drugs of any kind. However I think you maybe meaning after symptoms have become apparent or chiari has been discovered through testing for something else.?
Its when the headaches get really bad, or the back and neck pain and the vision, and the balance etc.. etc.. that i guess medication or surgery starts to be a priority.
I hardly ever took a pain killer ever until about a month ago when all of a sudden the symptoms became full on - until then i guess what symptoms i had - had been put down to anxiety and stress or else i had them all my life and it seemed normal so i didnt notice anything was wrong.
I couldnt go on now thought without possible surgery or drugs.
Cheers
Sue

[mark931]

i have lived with type 1 chiari for the last three years due to the hospital taking a long time to do the neccessary tests