Syringomyelia Support Group
Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.
I have moderate to severe tremors in my hands and legs. My syrinx is not related to Chiari malformation and is located in the middle of my back. Has anyone else experienced tremors, pain, numbness, muscle twitches, etc in their arms/hands even though their syrinx is not cervical? My neurosurgeon seems to be stumped about why I am having these symptoms in my arms/hands even though my syrinx is lower. I wonder sometimes if the syrinx has a change in pressure, could it affect your CSF farther up your spinal cord and cause problems with your hands and arms?
I'm sorry, but I do not have an answer to your question, only more questions, and a story to relate. Did they do an MRI of your C-spine, or only your T-spine?
My syrinx is from C4-T8. When my symptoms first started, I had pain in face, neck, arms, hands, upper back, shoulders. That was when it was C-4 to T-1. Now, I have been having symptoms that would make sense if my syrinx were higher up than it is, including: drop attacks, difficulty swallowing, twitches in my inner ear, dizziness, headaches (weird headaches, more like immense pressure in the base of my skull), these aren't all my symptoms, just some of the newer ones that don't make sense with the location of my cyst. My last mri was in 8/11, which showed it C-4 - T8.
I have not been able to find any answers about whether or not it could have expanded further upwards towards my brain. They say that I don't have chiari either, at least my mri states- posteria fossa unremarkable. So, I'm guessing that means that I don't.
How did you acquire your syrinx? I have read on many sites, that if you sustained a syrinx due to spinal cord trauma, then you can form a cyst higher than the level of trauma. I'm not entirely sure, but I beleive they said that you can also experience symptoms higher up.
I went to my neurosurgeon with the new symptoms, and they ordered an MRI of my C and T spine. I get the MRI on Sat, and appt. on Monday. Boy, do I ever have questions to ask. I can report to you his opinion on whether syrinx can cause symptoms higher up than the level in which it is formed.
That's about the best I can do.
Hang in there,
Rebecca
My neurosurgeon ordered MRIs of my brain, c-spine, t-spine, and lumbar just to rule any other conditions out. My neuro said that nothing showed up that would be causing any issues with tremors. I do have some issues with ruptured disks in my neck, but he felt that the tremors/weakness, etc in my arms and hands were not related to that either. The other strange thing is that the symptoms in my arms/hands occur at the same time that my leg symptoms flare up. I think my neuro is really stumped by this, but he also doesn't have that much experience with syringomyelia.
I am actually not 100% sure how I acquired my syrinx. I had a car accident about 2 years ago. They did MRIs of my spine because I was having lots of pain and they just happened to find the syrinx. My neuro says he doesn't think that the car accident caused the syrinx, but in his opinion, it just made it symptomatic. But, there's really no way to know for sure because I had never had an MRI of my back before that.
Were you able to make your appointments? How did everything go? I would love to hear more about what your doctor says.
Thanks again for responding! I was beginning to feel very alone on here :(
Amanda
I saw that you had pain in your face and then I saw another post where you mentioned trouble swallowing. I don't have either of those, however, I do have these weird tremors around my mouth. They usually occur at the same time as the tremors in my hands. It can be really embarassing sometimes when I'm out because my lips and mouth will start to "quiver". Have you ever experienced anything like that?
Thanks again!
I did go to the Neurosurgeon on Monday. It was one of the most awful doctor appointments I have ever had. Not because of the news I received, but because of the way I was treated. I can explain more later, if you would like. But, on to your question.
My syrinx is still the same size, I have a "central canal" and also several small syringes that run parallel to it. They believe that the syrinx is causing most of my problems. They do not think that it is what is causing the burning pain on the top and back of my head, difficulty swallowing, swollen hands/wrists, facial pain, "drop attacks", or dizziness upon standing. He thinks that those symptoms may be coming from some other source, not sure what. My syrinx is too small to do the surgery, which I wouldn't even want it if it was large enough. No thank you.
Tremors in hands, yes I have those. Mostly my left hand, and it is a "positional tremor". Meaning, when I hold my arms out in front of me, my left hand starts to shake. This began as recent as November 2011. I was diagnosed in November 2008.
I can't remember for sure if my lips ever quivered like that. My left hand though, as I am typing this, doesn't exactly want to do what it is told. It's like my middle to pinky finger want to push down even though I'm not telling them too. It's making this take forever. I have also had my left hand seize up, or cramp, on me in a weird position and it was a while before I could get my fingers to move.
My neurologist told me that the tremors are indeed related to the syrinx. Anytime you have a neurological disorder, this can happen. My syrinx is c-4 - t-8, he said that this would not cause pain in my legs and feet, but that later on down the road it will cause motor problems in my legs and feet(will walk funny).
Now, I know that they say that when you "injure" your spine, it will cause problems at and below the level of injury. But, I am having problems in my head that would be indicative of a syrinx higher up, which I do not have. My NS, doesn't think these symptoms are related to my syrinx, but my neurologist does. I have muscle twitches in my inner ear, muscle spasms at the back of my head(which I didn't even know was possible), I've been having difficulty swallowing, positional headaches (really weird), dizziness upon standing, burning pain on the top and back of my head. I would think that, since part of the spinal cord is damaged, it could possibly make other things go haywire. Who knows? I'm not a doctor, but then again, the Dr.'s don't really know either. None of them seem like they're gonna go lookin' for an answer neither.
The symptoms that I have in my neck, shoulders, upper back, arms and hands are as follows: Burning pain, muscle spasms, muscle twitches, loss of temperature sensation in half of my left hand, desensitized sensation to painful stimuli in the left half of my body, non-painful stimuli causes very painful responses in the left half of my body(breeze hits my arm, makes it feel like it is on fire), numbness and tingling, raynaud's in both hands, tremors, gag reflex gone, no reflexes in upper half of body, last but MOST DEFINATELY not least: pain, severe and constant chronic pain. I'm sure there may be a few that I am missing, but who's counting anymore anyway?
I think that logically, a change in pressure of your CSF would cause problems wherever the blockage is, however, it is a matter of controversy. Some doctors believe in "Chiari 0", some don't. Chiari 0 is when there is not enough space in your skull for your brain, however there is not any tonsil herniation. So, hypothetically, chiari 0 would cause a csf flow problem, and could in turn cause pain and other symptoms further up than the level of the syrinx.
My neurologist believes, if it walks like a duck, quacks like a duck, it is probably a duck. He's of the opinion that most, or all of my symptoms, no matter where they occur, are a result of my syrinx. I have swollen hands and wrists, for quite some time now. Had blood tests ordered, xrays, ultrasounds of my hands, and everything showed up negative, except CRP. C reactive protein, is an inflammation marker. Mine was twice as high than normal, it is non specific. Does not tell you where it is coming from. Saw my neuro, GP, and a rheumatologist for this. The GP and the rheumatologist are stumped. My neuro thinks it is from the syrinx. I did some research, and I did find where, a very long time ago way before Mri's, red swollen ugly hands used to be a sign of syringomyelia. They call it marinesco's succulent hand or marinesco's sign. Funny, I did a search and found it, and the doctors (NS, not neuro) that "specialize" in syringomyelia and chiari never heard of it. Now, I get the added pleasure to go to the neurologists office next week, all 5 days, to receive steroid injections for my hands. Not sure what all this entails, but, not looking forward to it.
Do you think your lip quivering, could be a muscle fasciculation(or twitch)? Sounds like they're moving independantly, and not on your command, so it seems that it would just be an odd twitch. I get one in my eyelid, and one just under my eye. Sucks, the more I go looking for answers, the more I find that there are none. At least not any new answers to be found.
Keep me posted on whether you find out anything on your symptoms. Hope this was of any help. Probably not, I'm prone to rambling now, it seems.
Chin up!
Rebecca
I too have had some pretty awful doctor appt experiences related to my syringomyelia. I've been incredibly discouraged about finding proper treatment because I've been to 3 neuros and 2 NSs and they all treated me the same way....like I was a bother to them because I asked questions. 2 of them acted like a syrinx was no big deal and that no kind of treatment would ever be needed. 1 of them practically raced out of the room while I was trying to ask questions. Honestly, I think they just don't know much about it and are either too busy or too lazy to research it.
I have an appt with Dr. Green at the Miami Project next month. He's a world renowned specialist in syringomyelia so I am praying that he will have some answers and some compassion. The way I've been treated makes me so angry sometimes! How do you think those doctors would feel if the roles were reversed and they were the patient?
Thanks so much for telling me about the Chiari 0. I had not run across that in my research yet. I'm also glad to hear that your neuro told you that tremors could be related to your syrinx. My neuro told me I had nothing that would be causing tremors in my hands and legs and that I just had a benign, unexplained tremor that I would have to deal with the rest of my life. He didn't want to give me any meds for it either.
The lip quivering I have always occurs at the same time that my hand and leg tremors are really bad. It doesn't feel like a twitch, it's more lie when you are really cold and your teeth chatter uncontrollably.
On another note, I have had some success in decreasing my tremors by going to physical therapy. I don't know if this means the tremors are related to something else or if maybe the therapy somehow helps release pressure on my spinal cord. Have you tried PT?
Thanks again! Hang in there. You are most definitely not alone!
I hope that your appointment will prove to be fruitful. Is the doctor renowned for his treatment of Syringomyelia, or Chiari Malformation? I find that the doctors that specialize in Chiari, seem to be only somewhat interested in syringomyelia. It is more of a secondary condition to them, so they do not pay it much heed.
I have noticed, more so recently than before, that my symptoms have started "flaring" in immediate response to any kind of straining that I might do. I know that they say straining will bring on your symptoms. The only symptom, and perhaps the worst one, that I used to notice upon straining was pain. Now, my left hand will cramp up, my neck will become immobile, my arms (usually only one at a time) will become immobile. Not immobile as in paralyzed, immobile as in: I can only raise my arm so far before I get this horrendous pain in my bicep and have to bring my arm immediately back against my chest because the pain is so bad.
Have you noticed if your tremors act up upon any kind of straining you may do? Including: lifting, laughing, talking, crying, singing, "pushing", yelling, etc. I know that I have pain all day long. Sometimes during the day it becomes unbareable. But I don't have to be doing much for it to do so. Even just one of the things that I have listed above might set it off.
I just started up PT again for my neck, etc. I went to PT for my lower back issues. I feel it helped, even if just a little bit. The tens unit seemed to do a really good job of keeping my pain under control. The first time I went to PT for my syrinx, the Physical Therapist knew nothing of my condition. Boy did it show. Everything she did, or wanted me to do, made me hurt worse. This lady that I'm seeing now, seems to know more about my condition and physical therapy in general. I've only been to her once so far, I see her again on Tuesday. I hope I have a better experience with this one.
Keep us posted on what your new doc says. I hope you have a positive experience this time.
Beck
regards, malc.
Were you able to go se Dr. Green? If so, how did it go? I've been trying to get an appointment with him. Was one of the doctors that you saw Dr. Powell? Thanks!
Dr. Green is the only doctor I've seen so far that actually knows what he's talking about! He was able to explain so many things that none of my other doctors have been able to explain. He also made me feel much, MUCH better about everything. My other neurosurgeons had freaked me out by essentially acting like it was "if" I'd be paralyzed, but "when". Dr. Green said that it was very unlikely I would ever be paralyzed and that it was more about managing the symptoms. He recommended pilates and other ways to strengthen my back and neck and he gave me tips on what to avoid in order to keep the symptoms from flaring up.
It truly was a great experience and I highly recommend Dr. Green and his staff! Good luck and please let me know if you have specific questions. Take care, Amanda
Thanks for your quick response. When I spoke to their office they told me that I have to see Dr. Alameda and if need be I would see Dr. Green after. So, I'm assuming that is just the way they generally handle new patients. My syrinx is at T7-8. I went to see one NS on the west coast who did not know anything about it and made it out like I was going to die from this thing. I went to Dr. Powell in Ft. Lauderdale who said it was nothing to worry about and not causing my problems. He said it is just muscular. The pain began to the left of the center of my spine which was stabbing pain. Then I had burning in my shoulder blade, then pain spread to my shoulder then my neck, etc. Now it seems like all of my upper body hurts. I have weakness in my arms, on and off trembling, and numbness in some of my fingers. It feels as though I am being squeezed around my ribs, like I have a corset on that makes it hard to breath. I also get frequent migraines. Did you have any of that? I've been going for massage therapy for three months, but it is not going away.