I did some research on the internet and read many reports saying that decompression surgery has a better outcome if you do not have sm.Mine did not take and i have both.I had sm in thoracic and now have it at c7 headaches and neck aches every day fluid build up in my head.Ct scans show fluid,mri does not.Going through the 50 thousand dollar surgery for decompression,i have found no relief and i know now the pain was not from chiari but syringomyelia which i still have daily only worse since surgery.

That is very unfortunate that surgery did not help you. If you don't mind maybe explaining some of your symptoms your syrinx is causing? Also, have you been diagnosed with an autoimmune disease along with like lupus or ms or something? I have a cervical syrinx from c something to t something and doc says its so small he didn't think it would be causing anything. but i'm going through some bad stuff with my hands for past month and a half I think.. red hot flare ups and feels like tips of fingers are different now. not numb yet though. I have had tingly feet for several months now. Very mild though so it doesn't bother me much. Just want to know why I am having this stuff and no one has any answers for me.

I was told even though drs don't know a lot about sm yet.Some of them had heard very little,that the sm impinges on the flow of spinal fluid causing less feeling in extremities.I had a sm burst last halloween,before the burst i could feel very little in my legs and my arms hurt.When it burst i had a black eye and sore ribs, for several weeks i was in terrible pain.Then it got better for a while until i started hurting in another part of my spine and they found another one at c7 if i am up alot i lose feeling in my legs again.They told me it would keep happening.Rest is the only thing that seems to keep it in check.Keep the faith,know you are not alone.

Thanks for replying.. just wondering too before it burst you had little feeling in arms and legs.. after it burst did it change the feeling in arms or legs? And, I am having at times trouble with breathing but nothing too drastic so hard to bring to drs attn.. do we with SM have the upper respiratory problems too.. or do you? just having trouble in crowded places it feels like all the oxygen has been sucked out and full of thick warmth or something.. and sometimes when laying down in bed.

Yes for quite some time before the burst i had trouble breathing too,in fact they told me i had chf copd asthma and after the burst they told me my lungs looked good when they did a TEE test.I had chiari all my life and just found out in my 50's,always had pain,but lived with it.They don't know how long had sm but i would guess since my 30's.Burning pain in my spine.Just before the burst it hurt so bad to move my arms tears would run down my face from the pain.

For longer than a month too,my blood pressure went through the roof like 210/160 and after the burst it was 120/60 and under right away and has stayed down.

Hi lolak and EnlightenME. If I may join I have some similar symptoms and some accumulated information that might relate. lolak...Have your neurosurgeons considered repeating the decompression? I understand the procedure when successful usually dissipates the syrinx on it's own once the flow has been properly restored. If not what about the possibility of shunting the syrinx? I had a syringo-subarachnoid shunt inserted in September and most of my symptoms improved immediately...not to say I don't have surgical complications, some of which are severe however it might be an option if your quality of life could improve. And if you don't mind me asking I am intrigued...I have never heard of a burst, could you explain what that is? EnlightenMe...there has been absolutely no statistical correlation between severity of flow interruption and severity of symptoms so don't feel your small syrinx to be innocent of causing your discomfort, they can cause symptoms at any size. Also, I too have extremity tingling and burning sensations but including numbness. This burning, numbness and tingling is called paresthesia and is often caused when pressure is put upon, or when damage occurs to spinal nerves (called peripheral neuropathy) such as with syringomyelia among other disorders. There are medications that can alleviate some of these symptoms such as tricyclic antidepressants as in amitriptyline and anticonvulsant medications such as neurontin and lyrica. Also the spinal cord houses the nerves that control the diaphragm so paralysis can be a severe symptom of nerve damage...but very rare. I would consult your physician just to be safe, however this is also a very stressful disorder and anxiety often takes the shape of feeling breathlessness. I hope this helps.:) Meggie

talking with you all does help with knowing other people know so much more than my own doctors. they don't really offer any of this type of information at all. thanks to both of you for replies. my brain isn't working to well these days so i will keep this short for now. thanks again

Everyone is different,but a lot of the symptoms are the same.I also have other battles such as degenerative disc and joint disease.Many of my discs are dried out.I just wanted to share the warning signs before a burst.All they could have done is drain it,then they just return.I would not have the surgery again.I had fluid build up in my brain before i even went back for my post surgical appt.I also have memory problems,and i search for words.I was told that it was normal after a craniotomy.Enjoy each day as it comes,and accept the disease.That is what gets me through.All i have found out about syrinx bursts is on the internet.Which i looked up after it happened to me.