Risks of not having surgery

[pamelalg]

Is there anyone who has chosen not to have surgery for Chiari 1 and Syringomyelia? If so, are their symtoms mild??

I would appreciate any input.

Thank you-

Pamela

[DAWGS]

I've had symptoms 12 + years - sometimes problematic sometimes I feel great. Seen 2 specialists and 1 said no surgery the other said it's up to me (but he does a minimally invasive procedure). I think my symptoms are for the most part moderate but surgery is no cake walk either. So for each person it's different. I do not have a syrinx so perhaps that keeps me in the no. However the days I feel bad I feel like I'm still young I should have surgery, yet then by the next week I feel better and think I can handle this...UGH! Up and down, you know???

[Mazie1209]

I have, three of them :o) still can't decide!
Mazie :o)

[selmaS]

  If U have a syrinx already u really need to talk to a well educated and experienced NS on chiari and syringomyelia...then choose.....

[Mazie1209]

I agree Selma! I believe the main reason I am a candidate is because of my syrinx,how wide it is..and I show signs of minor nerve damage already.
Mazie:o)

[selmaS]

  How u feel and how ur chiari affects u should be the reason u choose surgery...not just bcuz u have chiari....not everyone is a surgical candidate.....

  "selma"

[Mazie1209]

Yep, fear and the fact I feel decent is probably my major reasons for not having decompression surgery so far!
Mazie:o)

[Mazie1209]

Hi!  That is totally me! I have  chiari 1 and i have a fairly wide syrinx.  I have seen 3 ns and 2 of the 3 recommended surgery sooner than later, the third said i could get surgery or  "defer" it as long as i get mri's every six mo and closely watched my symptoms, he also said i could regret not gettin the surgery.
Im still undecided, i feel good for the most part, headaches are controlled pretty well by neurontin. The syrinx,im told has already caused nerve damage, im told im "hyper reflexic" and i do get tingling in my arms and hands...so thats my situation, still undecided, but ultimately probably should. I do notice if i rake or do yardwork,even a short time causes burnin in my   shoulderblades.
Sorry so long! Would love to hear other stories!
Mazie :o)

[Samanthab259]

I had a big fear of having brain surgery but honestly its not as bad as it seems. Im not going to lie i had my ups& downs when i first had it done & now. But my NS was there for me. they give you plenty of pains meds so you dont sit there in pain. Im proud of my Zipperhead :)

[jenshead]

I opted out...no syrinx though.  I haven't seen a chiari specialist so there's no telling if I would change my mind after that.

I wouldn't consider my symptoms mild, but reading what other people on here go through makes me realize how much worse it could be.  The fear of brain surgery is still worse than the pain, so I'll suck it up unless things get worse.

[rod44]

Hi Pamela, the most obvious risk for a person (apart from quality of life issues) with CM not having surgery when it is recommended is the risk of a Syrinx forming in the spinal cord. If you already have a Syrinx then chances are the Syrinx will expand. This can cause irreversible damage to the spinal cord leading to all sorts of problems. Unfortunately surgery is not a cure but designed to improve symptoms and there impact on your quality of life. This is why it is so important to have a Surgeon with good experience of CM/SM.

Ray