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.
Hello I've been diagnosed with a syrinx for c5 to t1 measuring 3mm in size. I've seen a neurologist and a neurosurgeon who both believe that my syrinx is an incidental finding and that it is not the cause of some of the problems I've been having. I've been told that all my mri's show a stable syrinx. Ive just recently in the last four months have had health problems including; nausea, icy hot sensation over body that come and go, extreme fatigue, muscle weakness, dizzyness, and occasional blurred vision, I've also had some loss of full sensation in my body. I have an app. to see a Chiari specialist next month so hopefully I get more answers. I was just wondering if anyone has had these symptoms and how fast they occured. It was literally like I woke up one morning and felt completely different. I've also been diagnosed with anxiety/depression. The only thing that makes me feel half way normal is my anti anxiety medication so its hard for me to differ the symptoms of the syrinx and my anxiety. Any advice would be appreciated. Thank you! Also Chiari and trauma were ruled out so there saying I have an idiopathic syrinx.
You will find that even the "Chiari and SM" specialists may tell you that your syrinx is too small to be causing your symptoms. They will call it a "persistent central canal". I have an idiopathic syrinx as well. Mine runs from c4- t8, and measures, at largest dimension 5mm at C5 - C6 level. However, the rest is approx 2.5 mm wide. I have a thin central syrinx, and then I have a paracentral syrinx, that starts and stops twice throughout alongside the central syrinx. The doctors told me that the central canal is benign, however, the paracentral component is not. They said this could be causing my symptoms, and maybe it's not.
I know that most of my symptoms are coming from the syrinx, I have done alot of research and all signs point to the syrinx. My neurologist thinks that I also have some other medical condition as well. My hands and wrists have been swollen now for about 10 months. He's sending me to a rheumatologist because he believes that I also have an autoimmune disorder, a connective tissue disease. I've already been to one, however, he blamed all of the symptoms on the syrinx. Very frustrating. The neuro told me to make the next rheumatologist pin it down, and not blame everything on the syrinx. Well, if you know how doctors are........
I have been through hell, as I'm sure you are finding out that having a rare condition is NO fun. You will also, probably, find that the Chiari specialists mostly specialize in Chiari, and not neccessarily in syringomyelia. With a syrinx your size, you will probably be told that they can't operate, because the cause is unknown, and the syrinx is too small, the shunt that they would have to use is bigger than your syrinx. I'm not saying that this is exactly what they will say, you may have very different circumstances than I, but I just want you to be prepared, in case that is what they tell you.
Make sure that you do alot of research into syringomyelia before your appt. with the specialist, so that you will have a more informed set of questions to ask him, and so you will understand the terminology that he will be using. At the very least, you should be able to get from them a good treatment plan to follow. However, if there isn't anything surgical that they can do, you may be back at square one. You will find that the "specialists" in CM/SM, don't really do anything for a "small syrinx".
I just went through 4 days of solumedrol infusions a couple weeks ago, not at first, but right now, it seems to have helped lessen alot of my symptoms, and now, I have alot of energy. This is why my neuro believes that it isn't just the syrinx at play.
Good luck to you in your journey, I know that I didn't give you anything positive to take from this, but try to keep an open mind. They may just find that there is another condition at play, hopefully one that can be successfully treated. For your sake, I hope that is the case.
As far as the anti-anxiety meds, if I may ask, what are you on? I find that the meds that most help alot of my symptoms, are antidepressants. They believe that chronic pain signals, work on the same level as depression receptors, so they help with chronic pain. I don't find the antiseizure meds help all that much, and their side effects are just way to intense to be able to have any quality of life. Tegretol did help me, but knocked me out and gave me a full body rash. My neuro doesn't believe that narcotics help with neurological disorders, so he does not prescribe them. I have been on some for an injury in my lower back, however, I don't think that they did much of anything for the pain.
Hang in there! You can also visit www.asap.org or www.conquerchiari.org. (could be .com-don't remember). There is some info on these sights that may be of help to you.
I hope and pray, that whatever it is that ails you, is something else that can be found and treated, and you can get on with your life! Congratulations on your recent nuptials! At least, I assume you are the bride in the photo. LOL
Funny you should mention your hormones being out of whack. I have hypothyroid, and suffer from alot of fatigue. I have been on levothyroxine for almost four years now, and I never really noticed any change since I've been on this med. I also have a high inflammation level as well. I didn't need a test for this, as my hands and wrists are very visibly swollen, just don't know why. My appt. with the rheum is on the 1st. I'll post whatever may be useful. I find it odd, that we both have a "small syrinx" and suffer like symptoms, some of which would not be caused by the syrinx. I wonder if the syrinx itself can cause another condition, and that condition could be secondary to syringomyelia. I have read that those of us with SM, have an average life expectancy of 47 years. They say that the syrinx isn't the cause of death, rather an intercurrent disease usually is. Does the syrinx put us at a higher risk for these "intercurrent diseases", since we aren't functioning at a normal level? I guess that would be a good question for my neurologist.
Symptoms, I don't always experience all of these symptoms all at the same time. I may have one or two or three at a time, and then the combo changes on any given day. Some of them I have all the time.
Here we go:
I have numbness and tingling in both of my hands and up my left arm up to my elbow. I have a burning sensation, feels like I am on fire, in my hands, up my left arm to my shoulder, the top and back of my head. I get a squeezing feeling in my fingers, like someone has tied a rubberband around them and is trying to choke them to death. I have pain in both of my hands, and arms, my neck, upper back and shoulders. Can be anywhere from dull aching pain, to sharp shooting pain, to "I can't move my arm" kind of pain. I have extreme muscle stiffness in the upper half of my body. I get muscle fasciculations (fancy for ticks or twitches). I have had these in my inner ear, in my left elbow, in my left pinky, feels like I have them in my diaphram (spelling?) and it makes my upper chest jiggle-try explaining that one while at work!
I have swollen hands and wrists, have had joint pain, but recently had solumedrol (steroid) infusions. It brought some of the swelling down, not all, and has helped greatly with the pain, and gave me some energy. My Neuro thinks that these symptoms are due to some other illness that has yet to be diagnosed.
I notice that my pain comes on even stronger after any kind of straining. Like: Laughing, singing, crying, shouting, lifting etc. I get severe pain in my neck and right shoulder sometimes that immobilizes me. I can't move my right arm, and my neck is stuck leaning to the right side. If I move it it is very painful. I have to wait for it to work itself out.
Lately, I have developed symptoms of Raynaud's. My fingertips get really cold and turn blueish purple colors. They are ICE cold. So cold, it hurts. This is what I think frostbite would feel like. On the other hand, my hands also get bright red on the palm side, and white on the back side, and are very warm, almost hot, to the touch. Visibly notice something is not right.
Let's see, what else? I always feel fatigued. Everything is a chore. I don't care to do anything that I don't have to do. Just thinking about it hurts. I am not, nor have I ever been a lazy person. However, the way I feel all the time, I only have enough energy to go to work, come home take care of my son, and NOTHING else. Although, these solumedrol infusions really gave me a good deal of energy. I hope it lasts a while. I don't wanna go back to a Zero energy level.
The fine motor skills in my left hand are diminished. Say, when I'm trying to cut my food, my elbow will make my hand twitch and I throw my utensil, or drop it in my lap. It can also make my pinky and ring finger on my left hand immobile. Whenever I try to hold something small with my left hand, those two fingers will become frozen in place.
I have no temperature sensation in the outer half of my left hand. Light breezes or sunlight on my skin, make my arms feel like they are on fire. Things that aren't usually painful, are painful to me, and things that are usually painful, aren't painful. I've lost all the reflexes in the upper half of my body.
I'm sure there are more, can't think of them at the time. Oh yeah, my memory that was once extraordinary, is now short lived. I sometimes forget in the middle of a sentence what I was talking about.
I have insomnia if the meds aren't controlling my pain. I get a sharp stabbing pain in one or both of my ears, upon hearing certain sounds. I believe they call this dysphonia. I am having difficulty swallowing.
It wold be nice to see a list of your symptoms for comparison also, if you don't mind. I will add to this list if I can remember. Sometimes, I forget what symptoms I have until they happen again.
Beck
In the meantime, I have the following:
Head- severe headache in the lower back part of my scalp. Feels like a burning pain. Rushing, pulsating sound in ears. Foggy brain. Memory problems. Double vision. Dizziness and balance problems. I keep running into walls.
Upper body- Severe shoulder pain on left side. Sharp, shooting pain that radiates from my shoulder down to my fingers. When the pain isn't there, it feels tingly. Sometimes I can't close my fingers. And when it's not tingly, it's numb.
Mid-body- Severe back pain. Almost right in the middle of my back, although sometimes it radiates over to the left side. When it's not hurting like heck it goes almost completely numb. For some reason, that's worse.
Digestive system- I go between being constipated (hello hemorrhoids) to having diarrhea. Unfortunately, when the cramps hit I never know which one it is going to be.
Lower body- Weakness in legs. Feels like I am walking through molasses.
Other- Extreme fatigue. I break out into a sweat trying to get dressed, brush my hair, whatever. I sleep about 10 hours, wake up, eat something, and then need to rest. The fatigue brings me to tears.
Current medications: Multi-vitamins, iron tablets, Tylenol PM.
Tests performed: Thyroid (fine), vitamin B12 (392), iron (13 and that's great for me).
Diagnosis: Chiari malformation with a 8mm herniation. syringomyelia in my lumbar.
Verdict: Neurologist says that none of my symptoms are Chiari or syringomyelia related. He said it was a combination of vitamin B12 deficiency and restless leg syndrome. My PCP and I said thank you very much. She is now sending me to a neurosurgeon.
How I feel: Like crap. There are days when I literally cannot move. I feel like I am becoming paralyzed. I am in constant pain. I hope to hear something about my NS appointment tomorrow.
Unfortunately, you're not alone as far as the docs go. I think they think that they're just supposed to make conjectures, drop it all in your lap and watch you flounder. All the while laughing behind your back as though you are some sort of drug addict, pill seeking crack whore. Okay, well maybe they don't laugh behind your back, so much, as right in front of your face.
I had an NP to a neurosurgeon hold up a few strands of her hair to tell me how tiny my syrinx was, and said that it was a persistent central canal, not a syrinx. I was completely upset, told her that she needs to go clarify with the doc, cause' that's not what he told me. She came back in apologizing, and I was there for almost a whole other hour. Lecturing her on how to treat people, and her trying to make sure that I wouldn't put in a complaint about her.
The autoimmune disorders do take a while to diagnose, if they don't show up in the bloodwork. I wonder, though, what the likelihood is that it would be an autoimmune disorder. If there are numerous people with SM, and we are all having these symptoms, then why couldn't it be from SM? I think that they just don't know shit, and the doctor's have become lazy waiting for some sort of test to tell them something. Instead of using their brain and a book to help figure it out.
I am so sick of wasting time at doctor's offices. The next one that I go to and they tell me "I don't know what that could be from", or "It's probably from SM (even though Neuro says it isn't)", or "It's too small to be Sm", I am asking for a refund. I mean, really, what are we paying these people for, when I could've told them more about my condition than they'll probably ever know!
But I digress............