Well I just found out that I have Syringomyelia :( I went in to see my Nero Surgeon to see what they had seen on my Milo-gram and Lumbar Puncture and They said that everything looks good but they don't want to do surgery until it gets large enough and becomes elongated then they will go in and drain it. He said there is so many nerves there to go into and we can do eruputable damage that we really have to think about if it waivers the risk to wait or go in now. I told him that if I am in this amount of pain now I cant imagine how much pain and how much damage it will do when it gets big :( Then I go see my Nero Doc, not the surgeon, say I don't understand why he wont go in now because there will be so much damage done by the time they go in there. so I want some help to know what anyone thinks. I don't know how long or how I got this. Mine is not the kind of SM that was passed down its from either some trauma or? Mine is rarer then the other that is passed down because its from a non known origin. I am in need of information on this its brand new to me please help me...

Diane46, did you ever have some kind of back injury or brain injury. I don`t know if the brain injury had anything to do with my SM but they told me that mine is caused from the back injury that I had in 1992. I had 5 compression fractures in my neck ,thorasic,and lumbar spine. And that is where the Syrnix`s are located.As far as havining the surgery or not to, I just don`t know what to say. I was told that I had to have it because my spinal cord was swelling and causing weakness and numbness in my arms, hands, and legs. But now all the NS and Neurologist that I have been to since we moved(away from Denver) have told me that they don`t do any kind of surgery until the syrnix is very long(as in longer than 4inches).I hope that this has helped some,I know that it is going to be a long and painful journey and I hope that you can find the right doctors for you.

Hi Monte can't say that I have had the issues that you are having with your NS and neurologist but I can tell you from my experience with my neurologist he described my syrinx from T5-T9 and to do any kind of surgery would be like picking watermelon seeds with a sledge hammer now being from Canada Dr's do tend to vary from area to area if you are having a pins and needle type of pain in your arms that means the damage can be reversed however if numbness is now present then the damage can not be reversed with surgery or a shunt you need to find a NS and a neurologist you can trust if not you may have a more difficult time being treated and this can slow down any chance that you have to have the syrinx corrected

Lori ,glad to become your frien don here and on facebook . The thing O don`t understand about the NS and Syringomyelia is that so many different things that the doctors have said about my symptoms and case . The first one was that it is a rare disorder and that because my syrnx in my c-spine was causing my spinal cord to swell causing my hands to go numb and the burning sensation in the tips of my fingers . Well within 5 months of my diagnoses I was in surgery having a shunt put in . The numbness is still there but the burning has sort of subsided ,I say sort of because it comes and goes . The pain in my back has pretty much stayed the same all along except my neck has more pain .I think that is because of the surgery and the arthritis but no one will say for sure , I was also told that since I was moving from Denver (where all this began) to a small town in New Mexico that I needed to get a new NS that was some what close to where I live . I have tried but they either think I want to have more surgery or they just end up telling me to go back to the doctor that did the surgery in the first place. Problem with that is that he has since moved to some place in California . For one thing I don`t want to have more surgery because the first one took 91/2 hours and I had a reaction to the anathesia and was throwing up for 4 days and had to stay in the hospital until they thought the throwing up had just been the anathesia . Not my kind of a fun time . Since moving here I have had to deal with driving over 200 miles to see about getting any kind of treatment . The driving is bad enough but when one doctor says things like I was seeking surgery (which could cost me my SSDI ) to others just sending me to a pain clinic where all they want to do is give me injections in my back for muscle pain(which is not the case) the pain is in my spine not my muscles .Yes I do have muscle pain too but if they could address the real problem instead of trying to give me a placebo shot it might be different . Oh well guess I am just venting but you would think that the(the docs)would all get together and come up with just one set of solutions ,and then if that dosen`t work go on to the next step . What do you think am I over reacting or is there just nothing that they can really do to help so they are jus using me as a ginny pig .Sort of a hunt and peck type of guessing game ?

Pain management clinics are great for the quick fix but they are supposed to look after your mental well being as well as your physical have they ever suggested physio therapy? Sometimes even a T.E.N.S machine can be of help in regards to the stiffness you may experience aqua therapy is also supposed to be very benefical for those with SM as swimming is one of the few things we can do without causing any further damage to the syrinx. As for your swelling issue you should ask about having a lameinectomy where they chip away some of the bone in your spine to relieve the pressure around your nerves which should also reduce the tingling not so much the numbness or burning

I have done the water thearpy and loved it but can`t get anyone to write a permant script for it . I am on SSDI and have limited funds so can`t afford to go to the pool very often ,If I could get a doc to write a long term script then maybe it would do some good . PT is also good but then agian no one wants to write a long term script . I do used a thearpy ball and it helps some . I also have two tenns units but they only give limited relief and you have to wear them all the time so that when you need it you can use it without having to get someone to help hook you up to it .Can`t quiet reach the places that I need it by myself . I like riding my bycycle for exercise and it is a low impact of arobic form of exercise .Just don`t go doing the extreme bike paths and it helps .

Hi..I had a cervical spinal cord tumor removed 9 years ago that left me with syringomielia. My NS has told me many times that a shunt is really the last option. I have alot of neuro issues both from the surgery to remove the tumor as well as from the syrinx. Basically my doc told me that shunts almost always get clogged and you will most likely end up with repeated surgeries. It really is the last possible option in my opinion and I would only recommend it as a last resort if your condition is getting considerably worse. I absolutely love my doc. I am not sure where you live but he is at Tufts medical center in Boston. Dr Carl Heilman. Chief of Neurosurgery.