Syringomyelia

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Re: Syringomyelia

Postby mokus » Tue May 10, 2011 1:27 pm

hi, I am new here...
I have syringomyelia from T5-T11, it is long but thin (max 3mm) but no Chiari. Started having scoliosis in 2000, did a few x-rays but they could not find any reason for it, then last year in nov. I had an MRI and was told about the syrinx. Also I have L5-S1 bulgind disc, disc dessication in the thoracic spine with osteochondral bars. My scoliosis is getting worst, it is more like a pelvis tilt, it starts in my low back and then i have a small curve in the thoracic spine again.
I was having pain for years but for about a year I am having this burning pain in my upper back and neck and also my right shoulder. I am wondering, is my scoliosis caused by the syrinx?? or I developed the syrinx because of the scoliosis?? is there anyone else with scoliosis and syrinx only?! thank you...
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Re: Syringomyelia

Postby karenb » Wed May 11, 2011 2:25 pm

Hi Mokus,

I have scoliosis (thoracic region) and a thoracic syrinx (T6-T9), with no Chiari Malformation or Tethered Cord. I've also god bulging disks in my lumbar spine and arthritis and disc dessication in my cervical spine. I have no idea which came first (scoliosis or SM). What I do know is that they didn't catch the scoliosis until I was 29, the first SM symptoms (or at least those that had a major impact on my life) appeared when I was 33, but I wasn't dx'd with SM until I was 43...

Karen
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Re: Syringomyelia

Postby toport20 » Thu May 12, 2011 12:30 am

Hi everyone,

Just thought I would add my 2 cents into this long post...lol. I was initially diagnosed with no chiari and also no syringomyelia- just an enlarged central cavity. I noticed on my reports there was a minimal ectopia "herniation" of my cerebellum. This was a report from a very well respected Dr. in the Chiari community!

I went for a 2nd opinion, they're MRI's showed slightly larger herniation and a syrinx. It was suggested I have tethered cord surgery so I went through that. I never felt much better and had a followup with my GP and requested new MRI's and now things are much worse.

I don't understand what is going on, but just thought I might be able to help someone else who has been told they had idopathic syringomyelia. You gotta be your own advocate!
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
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Re: Syringomyelia

Postby mokus » Thu May 12, 2011 11:52 am

Thank you for your reply. I had an MRI of my neck and head in Jan. but the results came back NORMAL, no Chiari. A few years ago I went to see different orthopedic surgeons regarding my scoliosis and every one of them told me different things, one of them even told me that my scoliosis is due to my leg lenght discrepancy !!! when he didnt even measured my legs !!! Another one told me that I was born like that, another one told me that my scliosis is not that bad and to go back to see him only when I need surgery. And every one of them told me to go to the gym to strenghten my back muscles. ( I am not overweight) So I went to the gym almost 4-5 times a week even when I was in pain, because I was afraid that otherwise my scoliosis would get worse. Sometimes I had no strenght at all and I was feeling like crying but I did not give it up!!!
Finally I was able to ask my GP to send me for an MRI of my low back and luckily she asked for thoracic MRI as well, and that is when they found the syrinx. Now my NS thinks that the syrinx developed due to an old motorcycle accident (20 years ago). Who knows... for years I had only low back pain, only for about a year I started having this burning neck and upper back pain.
And because I was misdiagnsed so many times I wonder when I look at my MRI pictures (almost every single day) that maybe I have vertebral tumors as well???? !! Or am I just crazy ??!!
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Re: Syringomyelia

Postby susanp » Thu May 12, 2011 12:32 pm

Hi,

I have a thoracic syrinx from t6 to l1, 2m wide. I haven't been told I have scoliosis, but then I haven't been told much. I have burning pain from the waist down. I also have severe neck, shoulder and upper back pain, but my neurologist told me that the upper body pain couldn't be caused by a thoracic syrinx. I also sometimes have numbness and a little weakness in my left leg (kind of feels like it has "gone to sleep"). I just recently also started having bladder spasms and that's when my neurologist told me that she really didn't know much about thoracic syrinxes. She has referred me to a neurosurgeon at Duke, but I haven't heard from them. My neurologist and another neurologist I had seen previously at Duke both acted like the syrinx was nothing to worry about, but did say it could cause burning pain. I have read so many stories on this website and it scares me that this thing could really cause some permanent damage. It is helpful to hear from others who only have syringomyelia.

Susan
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Re: Syringomyelia

Postby mokus » Thu May 12, 2011 1:19 pm

I am sooo happy that I found out about this website, I feel that I am not alone anymore!!
My Ns told me that the burning pain in my upper back and neck is because of the syrinx and it is called neuropathic pain and gave me amitriptyline to take 25mg/day. After 3 months he reduced it to 10mg/day because of the side effects, I was verry dizzy, mostly in the mornings but now that I take less, I have more pain then before, even before I was taking the pills :-(
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Re: Syringomyelia

Postby karenb » Sat May 14, 2011 4:01 pm

Mokus,

Another helpful website is the parent website of this bulletin board - http://www.asap.org.

You might want to consider attending the medical conference this summer. They tend to be really great experiences - you get to meet lots of people like yourself, and there are a lot of great talks and break-out sessions. The info is at http://www.asap.org/index.php/get-involved/conference/.

I went to the 2008 conference, and also bought the transcribed conference presentations - it was a great learning experience, and I have used the notes a lot!

Karen
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Re: Syringomyelia

Postby mokus » Mon May 16, 2011 1:51 pm

Thank you Karen, I would love to go but I live in Canada... it is too far for me to go and far too expensive :-(
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Re: Syringomyelia

Postby arubcic » Tue May 17, 2011 5:36 pm

Hello All,

I was told that I have Syringomyelia but that in my case it is unlike caused by trauma and that I have no signs of Chiari Malformation which meant there was no reason to believe that my chronic neck pain was most likely unrelated. They said there is nothing wrong with my spine and they are treating me with steroid injections and that there was no surgical solution to idiopathic syringomyelia. They are insistant that there is nothing to be done and I am beginning to feel as though they think I am lying. I'm constantly asked if I am depressed. This is getting so frustrating please someone give me some idea of what to expect or where to turn.
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Re: Syringomyelia

Postby lady 59 » Tue May 17, 2011 10:17 pm

Arubcic,
Sorry to hear you have so many questions and no anwers. I don't know what kind of doctor you've seen but I'd suggest you get to a NL/NS as soon as possible and hopefully one that deals with these disease especially. Just post that you are looking for a dr. in your area and somebody will steer you in the right direction. Sounds like whoever you saw doesn't know much about this.
I also have syringomyelia, idiopathic, no Chairi. You said they told you there is nothing wrong with your spine? Syringomyelia has to do with the spine and although there is no "cure" there are options.
Where is your syringx? Have you had MRI's done? I'm not an expert in all of this, just have been going through all this myself for years and since finding this site was really clueless to it all. Start a new post like I said asking for a dr. in your area and I'm sure you'll get alot of replies that will be helpfull. Good luck & hang in there.
Mary
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Re: Syringomyelia

Postby reedy » Wed May 18, 2011 5:56 am

Rather than starting another post, the thing to do first is use the search function for names of good neurosurgeons in your area. This is discussed over and over on this site, so it will give you a starting point. If you don't find anything, THEN start a new thread.
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Re: Syringomyelia

Postby arubcic » Wed May 18, 2011 11:35 pm

I asked about the size and location of my syrinx and I was told that if it was something to worry about the doctor would have told me. I've undergone one nerve block and I've been scheduled for my second tomorrow morning. I had a cortizone shot to my left shoulder today and it is helping my shoulder.
I saw neurosurgeon 2 weeks ago and he told me that it was unlikely that my pain was related to my syrinx. I asked him what size, how long, etx., and I was ignored. I snatched my chart off the door and from what a read my spine is perfect, there are no indications of chiari malformation, thus I have idiopathic syringomyelia. All doctors act like extremely common. A nurse told me that lots of people diagnosed with syrinx and that I shouldn't worry about it. I'm not stupid and I've read everything I can get my hands on and what I am reading tells me that the doctors here in Tuscaloosa AL are idiots or are suffering from "idiopathic retardation" and that I need to find a specialist who knows what the heck is going on. Should I just relax and be happy that my symptoms are limited to a stiff neck and chronic neck pain, with weakness in my left shoulder and arm, strange blood pressure readings, and insomnia. Are those even symptoms which I should associate with my syrinx.
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Re: Syringomyelia

Postby arubcic » Wed May 18, 2011 11:40 pm

Sorry lady 59

Its in my neck I think between the C2 and T1 but I'm not a doctor and I barely understood what's in my chart. I had to memorize what I didn't understand and google it to figure out what it meant. This is the USA!! Why did I see 2 doctors who both told me they had no idea why I was being referred to a neurosurgeon before I finally snuck a peak and read my chart.
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idiopathic syrinx

Postby Julian22 » Wed Jul 27, 2011 3:24 pm

too have just a plain old idiopathic syrinx in my cervical spine. I was diagnosed 1 year ago so I'm coming up on my next MRI to see if it has grown. I would love to have a group of others to talk to about it.
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Re: Syringomyelia

Postby lady 59 » Wed Jul 27, 2011 3:48 pm

Jillian22 I only have a syrinx but mine is in the thoracic area. Why don't you start a new post and ask for people who live near you?
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