I began having symptoms of numbness and tingling in my toes and feet during late September. My doctor brushed off my symptoms and told me they were probably due to inflammation and ordered blood tests to rule out diabetes and told me to come back if symptoms didn't go away. The numbness and tingling progressed upward and at the end of October I fell really bad in front of some classmates who urged me to return to my doctor. She then referred me to a neurologist who was unimpressed by my symptoms but scheduled me for a nerve test to be safe. The test was rescheduled several times and by the time I was seen my symptoms progressed upward to above my belly button. The nerve test showed nothing but I must of got my doctors attention because he sent me for an MRI. I got the results of MRI and diagnosis of a syrinx in my thoracic spine on January 3. The neurologist wouldn't answer any questions concerning my prognosis or future treatment plans but instead informed that he wanted me to consult with a neuro surgeon and that they would develop a treatment plan. He referred all of my questions to the surgeon. As of today I have yet to here from a surgeon as, none will accept my insurance(the medical card). Supposedly my neurologist is looking into it for me but i feel clueless. I only know what I've read on the internet about this condition and I'm terrified. The thing is I'm a single mom and about to begin my 3d semester of nursing school in a week. I also like to work out and am trying to lose weight. I don't even know if I have a weight restriction. I'm scared to workout and freaking out bc I've been shoveling snow all winter likely unknowingly causing more damage. If I have any physical limitations, I will be kicked out of clinical! If my condition progresses or doesn't get better, what does that mean for my nursing career? I have all these questions but no one to ask them to. I feel so much pressure around my waist and legs and feel so uncomfortable all the time. Since September my symptoms have progressed and I don't feel like it's stopped progressing. I'm terrified. I'm worried about my career, my future, my kids.... Can anyone help? I know I'll feel better if I had some answers.

My thoracic syrinx was also found beginning with the symptoms you've explained. Do you have any pain in your back or neck? Unfortunately the sad truth about this disease is you'll be hard pressed to find a dr knowledgable in syringomyelia. Your best bet is to do research and try to find a dr familiar with the condition in your area, however a lot of times you'll need to travel to find one. I hate to be a downer but prepare yourself to encounter many medical professionals that either know nothing about or very little of the disease. Some of them will even tell you that it's not causing your symptoms or that it's "in your head". You know your body and you're going to have to start being your own advocate. If you do not get the answers you're looking for from the neurosurgeon keep looking! Many people do ok with a syrinx. However many people do not. Mine has been progressing to the point where I'm now forced to file for disability. I'm not trying to scare you either I'm just being honest. As far as your nursing classes go I'm pretty sure it's illegal to discriminate for a disability. They can't kick you out, they would have to make accomodations for you. In general as far as the sm goes they say not lift much or do much activity that requires straining. You should talk to a dr about whether or not they think it's ok to work out. You didn't mention the level of your syrinx? Is it large?

I totally agree with Erica. They finally did an MRI on my back after complaining about back problems and other symptoms after 30yrs. 15yrs ago they told me I had syringomyelia. They told me I had a syrinc in my spine that went from t-4 to t-10. At this point they only did MRIs every year to keep an eye on it. Although it hasn't gotten any bigger the symptoms have gotten worse. I have worked for 42yrs and very hard labor jobs. I worked on the railroad doing track mainance for 12 yes and now I'm doing street mainance. I also drive big trucks and run heavy duty equipment. I have a CDL. drivers license with I had for 30yrs. I can no longer go on. The one thing that has help me all these yes was my pain meds. If dot would have found out they would have taken my license. I manage to keep my jobs for a long time without any problems but the symptoms have gotten worse and I'm gonna get out while I can enjoy life.I don't know if this gives you any hope or not. I know I'm not book smart and bad at what I'm trying to say. I guess although I'm on pain med s everyday I still live a somewhat productive life. Hope this somewhat helps you.

Hi all "i'm new here " ,,,mine is from T8-T9 ,,thorax ,,and wasnt till an accident in 2008 mine FORMED so they say ,w/ a small tumor, pencil sized inside the srinx 1- 50 million chance )(the Dr's said the syrinx it was a direct result from being rearended at 40 MPH ..I was stopped ) went to 6 different Dr,'s / Neuro specialists .. then a specialist found the reason for the problem I have ,,( I WAS EVEN SENT TO A PSYCHIATRIST ) psychosematic ,,all in you'r brain ..,,reaction by Dr.'s ,, until Dr Frizzell in boise Id .he said I found the problem but cannot fix it ... background I'm 56 soon 57 ...drove truck for 30+ yrs ,,and now instruct , the pain level was a constant 8 to 10 when was in truck ,, I couldn't take it any more ..I'm ON DISABILITY NOW ..AND ON FENTANYL PATCHES ,,and tramadol for break through pain...this condition is an immediate DISABLING CONDITION ....! and they couldnt take the tumor out w/ OUT paralyasis ...as it's in central spinal canal , if they try to drain the syrinx it could damage the spine as well 80% chance ! once medicare kick's in I'm going to request a drain ,,,and a smooth wave Neuro stimulator ..I hate the fentanly ! I was told it would eventually paralyse me (wheel chair ) but the pain would get to me first ...then some have weakness / tingling w/ NO pain ...and the symptoms VARY greatly ....it's the pain that GETS ME ! I have kept my CDL ,,but NO Doctor will allow me to drive OTR ..and the DOT MED .card is w/ heavy exemptions ,,, and I wouldnt be able to pass a drug test any way w/ fent . not sure if any of my experience will help ,,,, I tried ..

Hi everybody, This is my very first post. I share your fears. I have a syrinx around T5 - T6. This was most likely due to surgery that I had 10 years ago to remove a meningeoma (benign tumor) in the same area. After my first surgery, I had weakness on one side and numbness on the other side. I went from a wheelchair to a walker to a cane to high heels after rehab. I had some remaining numbness in my toes but generally OK. This may give you some encouragement as my tumor was very big and the surgery pretty invasive and I still recovered. However, the last few years, like you, numbness increased to the site of my injury. I also have asthma which causes me to cough violently at times. This I know is not good for the syrinx. I am currently working with a neurosurgeon who has had some experience with syrinxes (He was the one who did my original surgery). I think he's great and very skilled, however, he is 70 years old. I would like to network for an experienced dr. in my area (New Haven, CT). I know its hard to find surgeons with experience with syrinxes. My blessings to all of you who share this problem. If this helps, I try to think positive, healing thoughts to push out those scary thoughts. I say "I'm healthy, I'm healed, I'm whole and thank God for His miracle." It helps me to cope.