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Diagnosed with Syringomyleia, need some advice

AnonymousUserAAnonymousUser Posts: 49,900
edited 06/11/2012 - 8:24 AM in Chronic Pain
Well, lets start out and give my background. I was on the old forum, but I guess I should break it down again. I am a 27yo male, and have had back problems since 1999.

In May 2007 I had an L4/L5 laminecomy for a 7mm herniation. I had major radicopathy (sp?) down my left leg, to say the least it was pretty horrible. After my surgery I felt pretty good, the pain was almost completely gone but I would occasionally get shooting pains, burning and stiffness.

After about 6 months I started to get back to my old self again. The pain came back to its old intesity, but not in a constant manner...it came and went as it pleased. My Nuerologist gave me Lyrica, took it for about 2 or three weeks and didnt like how I felt. I was gaining a little weight and I always felt like I was drunk. It did very little for the nerve pain. In May of 2008 I got another ESI to L4/L5, this helped a bit. But the pain I was in was still there, and was getting worse. My Neurologist told me straight out "There is nothing I can do for you, you have DDD and there is nothing else I can do. Come back in 6 months." H :T AHAHAH Eff that. Such a great doc huh, sorry your in pain gimme money please!

I found a new Neurologist and he immediatly sent me for a Thorasic MRI, to see if there was anything pushing on my nerves above the Lumbar that could be causing the pain, numbness, tingling, and minor weakness I have been having. Well, wouldnt you know the first MRI after seeing this Neuro for 3 weeks came back with a diagnosis of Syringomyelia (SM). I cannot recall what levels the syrnix is located, but it is almost my entire Thorasic. He said it is small compared to what it could be, but is in the 3mm range.

As it turns out, the more I research this problem the more scared I become. This disorder only effects maybe 300,000 people in the US, so there is very little reserach that has been done, and very few specialists who know about it. I was lucky enough that my new doc knew what it was.

I had another MRI of the Thorasic last week to make sure it wasnt an anomoly. But, due to the pain I have been in, and the new aches and pains that keep popping up, I feel that was an accurate diag. I have constant pressure in my middle back, and I have thought of it just as muscle tightness from the surgery and my body compensating for balance issues. Well,come to find out the pains I have relate 100% to SM. The syrnix, CSF filled cyst, in my spinal canal is filling with fluid and pressing against my spine. Thus, causing the presssure or tight feeling, and I assume is the cause of the lower extremety pain also.

I go to see the Neurologist tomorrow morning, but I am really worried. I have nothing for pain, he put me on Cymbalta. It has helped my outlook on the situation, because honestly I have been really depressed the past 8 months or so. Although, it doesnt help at all with nerve pain or anything he said it would. I really would like something for the pain because tylenol all the time just isnt good for the liver, and it doesnt help much anyway.

I was hoping there were others on here that have been diagnosed with SM and they could give me some insight and help. I really am scared, because this condition can lead to paralisis, and that is something I would really like head off.

Any help or suggestions would be much appreciated.

Thanks,
Mike
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Comments

  • Welcome back to spine-health. I too have a syrinx. It was initially diagnosed with my first MRI back in 06, and thought to be caused by acute trauma when i injured my neck, but it could be congenital. The doctor scared the h*ll out of me saying that it could even be a cancer of some type, and immediately sent me for a surgical consultation. Thankfully the surgeon knew a little more about these syrinx' and calmed me down! For the past 2 years we have been monitoring the syrinx. Doc said that as long as it remains stable, there is nothing to worry about. But no such luck, mine is now growing and could be the cause of some increased symptoms I am having.

    Mike, I've been told the treatment for SM is to have it removed, and that requires cutting into the cord. I think they sometimes put a shunt in to drain it. Until it grows enough that it puts us in immediate risk of paralysis, that is not an option, at least not for me. I would be interested to hear what they do for you. Hopefully someone else who has gone through this will post.

    My surgeon has said several times "a syrinx is scary". Great, if he is scared by them, what are we supposed to be?

    Cindy







    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Yup, my Neurologist also said that it could be a potential tumor. But I would expect a syrnix and a tumor (benign or otherwise) to appear different on an MRI. Seeing that a Syrnix is filled with CSF. So, I dont get why they say that. I guess to cover their butts in the event that it is a tumor. I dont have any history in my family of cancer, so I doubt that is what it is so I didnt worry to much about that. I worry more about the paralisis part. I have read up on the shunts, but I cant wrap my head around it #o. Seeing that the CSF is diverted down into the stomach cavity, could that cause more internal issues?

    Over the weekend I had a bout of major pain, and every breath I took hurt like I was being stabbed in the spine. They say that coughing, sneezing, physical activity can do this, but I was pretty sedentary this weekend just taking it easy.

    How big was your syrnix when first diagnosed? and what is the size now, and how fast has it increased in size?

    I assume that you have not had any surgery as of yet, but what has been done to help you?

    Thanks,
    Mike.
  • Initially it was about 3 mm x 7 mm. I don't know how large it is now, but when looking at the previous MRI and comparing it to now, it was notably larger. Maybe 5 mm x 12 mm or something like that. I need to find out the exact measurements. but then again, maybe I don't want to know.

    For 2 years my syrinx didn't change at all. but from hte MRI I had in April to the one I had last month, there was the change.

    Actually, I have had 2 neck surgeries, but they were not for the syrinx. The syrinx is just an added "bonus" to my complicated spine problems.

    Yeah, that confuses me about the csf fluid being redirected. My surgeon said if it gets bad enough to require surgery, they would cut into my cord and remove it. But I've also read the shunt stuff, so not sure which way is best. either way, I agree with my doctor. A syrinx is scary.




    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Well, I am confused now.

    My MRI w/wo contrast of Thorasic now shows that I am normal, no SM. They said it was either interpreted incorrectly or an issue with the imaging. Thats really nice huh.

    Although, the symptoms that I have do infact correlate to SM. Over the weekend I was in major pain and when I took a breath I could not take a full one. I could feel a very sharp pain along my spine and any movement would increase that pain. The doc said it may be muscular, but I know muscular pain, and that sure as heck was not it. But he would not take what I had to say into consideration.

    They are sending me for another MRI (thrid in 4 weeks) of my cervical spine and blood tests to for ANA, CBC & CMP, CPK, ESR, Lyme and Westernblot, and TSH. He thinks I may have Lyme Disease. But, I highly doubt that is my problem, and I dont know what the heck that other stuff is.

    I honestly feel that I am never listened to about these problems I am having. I am never given any pain medication, and everyday I have some bout of pain that would necessitate meds. I guess they see that I am young, and the tests they are giving me are not conclusive, so I must be lying to get drugs. I never ever beg for meds, I merely ask if they can give me something for the pain, and it is always No!. They just dont understand.

    I am totally lost, I am so angry now that I cannot stand it, and I want to totally give up and self medicate. I just feel that every doctor I see does not care or have any empathy toward me.

    Does anyone know of a good Neurologist in the Northern VA area, Leesburg/Reston Area? I know that forum rules state we cannot post that info, but please PM me if you have any suggestions of whom to see. I have a feeling that I may need to change Neruologists again, even though I have been seeing this new one for only about 2 months now.

    I am at my wits end, and am getting to a point where I cannot trust these hacks because they just dont seem to care what is happening.

    Please help me.
  • I can feel your frustrations. Even though having SM is difficult, at least it would have been a diagnosis and sort of validated your pain. Don't give up. Hopefully these tests will find the source of your problem.

    The good news is that you don't have a syrinx. Keep pushing the doctors to find out what is wrong. You're too young to give up! So sorry for your pain.

    Cindy
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • I went for a MRI in August of 2010 when they dignoised me with a syrinx.the size of 9mm in my c2-3 ,I have had a surgery that was done for a ruptured disk in 1990,The ruptured was between c5-6. I have had pain ever since... For the past few years my pain has gotten even worse. I have a stiff feeling between my shoulders and pain that effects the whole right side of my body...especially in the right shoulder down to the fingers...with numbing,aching,and terrible burning along with headaches.How do they know if you have syringomyelia that goes along with it. or do the 2 just come together? What are the symptoms of syringomyelia? Or is it just another word they use for syrinx? Looking for some info. if anyone could give me some.Have an appt. with a neurosurgeon the 25th of Feb. not sure if he knows alot about the diease since it is so rare.I also get dizzy alot.Just wondering if that could be a symptom.

    Thanks,Brenda

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