Surgery although no syrinx???

[Givenstrength]

How many of you has had or going to have the decompression surgery even though you have no syrinx or other problem that call for the surgery? Like had it just to try and help relieve symptoms?

Got my results from my spine MRI today and he said there is no cyst right now but what appears to maybe the start of one. So he wants the choice to remain mine as of now. I'm on strict orders to call him if my symptoms worsen especially if I get weaker or number in my arms/hands. If not he wants to do a follow up apt in 6 months. But he said that it's so crowded and blocked that I will more than likely eventually develop a syrinx and will have to have the surgery.

So I feel stuck! I don't WANT the surgery at all but I am tired of the pain! And I know it's not a definite that the surgery will take the pain away either! I also have a busy life with three small children and don't really have time for surgery right now anyways so I'm pretty sure I'll be waiting but just wanted halls advice! Should I try to plan it sometime or should I wait and see if a syrinx develops and just have to have the surgery?

[blondeballerina07]

The episodes of my oxygen sats dropping low always happened very quickly, and I never really felt a shortness of breath at all, I just completely stopped breathing and was unable to breath on my own. After a year and a half of seizures I was able to "feel" when something was not right and one may have been coming on, never from shortness of breathe. This was just my situation, from the way my doctor explained it to me, he is a chiari specialist, is that the brain stem controls our breathing. Breathing complications are rare with Chiari the most common being sleep apnea, and then in a small amount of cases there is the problem where the respiratory system arrests. He said that it is not typically associated with shortness of breath and that that is typically caused by something else. Again this is just the information I was given, but you know your body best. Hope it helps!

[selmaS]

Chiari can affect breathing as our brain stems r compromised...and that is the control center for everything  that functions within us.

Smoking is detrimental to ne one that smokes, but more so for someone with heath concerns like a chiarian...I am sure u r aware of all the dangers of smoking, but it can add to ur symptoms and issues with chiari.

Is ur NS a chiari specialist?

"selma"

[Givenstrength]

I told my NS that I've been really short of breath lately even to the point that is scary and my fingernail beds are even a bluish color... He marked if off being the reason I smoke. Which is a horrible habit I know and trying hard to break but I've smoked for 13 years now and just started having shortness of breath a week or so ago. I haven't had amy seizures though.

But I thought I have read that chiari can cause breathing problems. I really like my NS but concerned that he isn't concerned about my breathing???

[blondeballerina07]

I had the surgery with out having a syrinx, but I had associated problems that was casuing my oxygen saturation to drop into the 20's and cause seizures, so when that was determined to be the cause I was not left a choice because of the risk of losing the ability to breathe.

[selmaS]

Hi...I did not and as far as I know do not have a syrinx.

I do have other related issues/conditions tho.

Surgery is a means to slow progression of the condition, but once a syrinx does form u run a higher risk of perm nerve damage, so u want to try and avoid that.

No, u may not get rid of ur current symptoms, but may help it from continuing to get worse.....and then again, u may have adverse reactions to meds or the procedure itself.

There r no guarantees.

I also have a bulging disk in my cervical spine for as long as I can remember...after my PFD surgery.,my disk slipped further and is now causing the same issues as the herniation.

Surgery unless an emergency situation, it is ur decision....

Get another opinion and I pray this is from a chiari specialist.....this is a choice u have to make  when it is right for u.

"selma"

[Givenstrength]

Oh and he also said I have a bulging/herniated disc in my neck which is causing a lot of the neck pain but the decompression surgery wont help that and feels it's not severe enough to have a separate surgery to fix it.?