mattypain , You are not alone . It is a pain that I have sometimes learned to live with but there are times that it is unbearable and nothing helps . I don`t know what they are talking about when they say your syrnix (cyst) is not big enough ,symptoms are symptoms and no one should be telling you that it shouldn`t be causing you agony .I have learned from being here that the size of the syrnix does not matter . I would suggest that you find another doctor ,one that specalizes in SM and chiari malformation . And even those can be frustrating at times when they come up with some of the stupid things they say .I am sorry that you have this horrible disorder . I am glad to meet you and hopfully we can be of some help . If you haven`t downloaded the patient handbook then I would suggest that you go to either smawarness.com or to ASAP.org and down load it so you can have it as a refrance for yourself and maybe copy it for your doctor so he can learn how you need to be treated . But do get a second ,third and fouth opinion .See you around and take care .

So sorry that first site was suposed to be smawarness.ca not com . OOps.....

Unfortunately i have seen several doctors and specialists, and i can see that i am not alone in my frustrations either. They all conflict eachother. They said it is too thin for a shunt and too much risk because of where it is. I will get the patient handbook though and thanks for the reply.

Hi Mattypain and welcome to our little family here. you are never alone here. Have your Dr's tried you on Gabapentin? that will help with the muscle spasms and the twitching. It is not uncommon to have the pain radiate into other areas of the body. There are quite a few medications out there that can be tried but if you are concerned about narcotics there are non narcotic medications. Not everyone is affected the same with syringomyelia we are all affected differently... Monte and I both have syringomyelia but we suffer differently . Syringomyelia is also known as the "look good illness" because we all look like there is nothing wrong from the outside but inside we are a totally screaming. There is alot of different answers out there and no one dr is going to agree with another. First and foremost be careful with the epidural injections remember it is the spine that is having the issues and you do not want any kind of needles near your syrinx. My syrinx runs from T5-T9 I have arm and leg weakness as well as loss of bowels,ringing in ears,vertigo, can not walk long periods of time,or stand for long periods, and I can not sit for long periods of time I am always moving even when I sit to type my legs are always moving .. I stopped working in 2008 but got diagnosed in 2009 after finding a Neurologist who actually listened to me and took what I was saying serious. If you are having trouble with Dr's keep a journal and always ask for a second or third opinion whatever it takes also try and get into a pain management clinic and it never hurts to remind Dr's that you are the patient and you are in pain tell him that youo would not wish this sort of pain on your worst enemy I know it is not always easy to get your point across but be firm with them. Thanks Monte for mentioning the SM handbook that is a great place to start and for telling Matty to make a copy for their Dr. The Do's and Don'ts list is good too. Matty I also wear wrist braces on both wrists to give me the strength to lift with my hands when cooking or crafting. I am limited but I plug on as I am also looking after a disabled husband who has CDDD,parkinsonism,sock and glove syndrome, so its not easy just stay strong and keep that journal it helps stress what you deal with on a daily basis.
blessed be
Lori

Hi Mattypain, I'm sending you hugs. I just found this sight the other night and I couldn't believe how much it helped me to read and hear all the comments. My syrinx is C1 to T9. I had my original surgery 20 yrs ago went back to leading a "normal life" and didn't have horrible symptoms until about 5yrs ago when I started falling down. Unfortunately, my shunt had tethered my cord and the doctors blamed my new symptoms on my syrinx, so in turn I now have scoliosis which further complicates my balance. I feel your frustration with people not understanding the pain, one thing that drives me crazy with my family is that they don't understand some days are better than others but we are not able to predict which ones that will be. So i think they think I'm using it for an excuse not to attend events. Also I have days when my legs are weaker than others leaving me at greater risk to fall. I can't tell you how many broken bones, and stitches I've had. Hang in there you are not alone. It really stinks and I can say that even though I limp around and have horrible days, the good ones are the ones that count. Just take good care of yourself and be kind to yourself when you are having those horrible days.

Dear Mattypain, I'm so sorry you're hurting so much. Of course the syrinx is causing you pain. It doesnt matter how thin it is. My syrinx is from T5 - T8 and although thin causes me an incredible amount of pain. The GP said it wasn't causing the pain but the specialist in internal medicine said it most definitely was. The trouble is, most doctors dont have to live with chronic pain . I agree with Monte, get more opinions and keep telling them the pain is unbearable.
I find I have to take a cocktail of medications to numb it enough to function, although can no longer work as a nurses aide. There are a lot of us in the same boat with you. Sending you best wishes and good thoughts, Astralane

I am sick of hearing how our syrinx's can not be causing alot of our pain . Do they not realize that the spinal cord is really quite narrow it is only 12mm wide then when you add the fact that there are 31 nerves running up and down it along with blood vessels, fluid and other matter that normally makes up the spinal cord there is not much room to a syrinx into the equation. It is time these Doctors go back to school especially if they are from the old school ..the newer doctors are more open and at least will admit they don't know and then go and research it. Always get a second opinion or a third keep going until you are satisfied.
blessed be
Lori

I have syringomyelia also...covers the thoracic region of my spine. Dealt with this for 2 1/2 years before being dx'ed with MS. The pain is a pain that only "we" know. I cannot even describe it. Upon being dx'ed with MS, the pain in my legs/feet increased horribly!! I deal with it every day, still working full time but about to begin the process of filing for disability. I'm wearing myself out, day after day...I cannot even move from the bed until I take my pills and wait for them to kick in. I am currently taking neurontin and hydrocodone. May end up back at pain management before too long. I also do weekly shots of Avonex for MS. Fortunately, I have a wonderful neuro who understands the pain and helps me to be able to deal with it. God bless you...I know your pain