I had been living undiagnosed for years and on a follow up MRI after partial discectomy and lamiinectomy, a syrinx was found and I finally had answers to all the severe pains, headache and numbness/tingling sensations that I have. But I'm not getting any support. My family physician had never heard of a syrinx and I am not getting any help from any of the other doctors I have seen. All I hear is that when I lose function of some body parts, surgery will be required to "try" and drain the cyst. I'm very happy to see I'm not alone in my sufferings, but is what I'm being told acceptable?

Hi, my name is Lynn and I am the mother of Wayne who left a message on October 16th. Wayne has now been hospitalized and only has basic movement of his left arm. His breathing is difficult, has hiccups almost constant due to weakening system, hoarse voice (very difficult to speak) and this tires him alot. His Drs are preparing to install a shunt on the left side of his head to alleviate built up fluid. One person asked if this was a good prospect, Wayne has had one since he was an infant and it worked great until now. The fluid flow has decreased therefore we are praying that the buildup on his spine is due to this blockage. If not the Doctors are going to operate on his brain stem, which as we all know is a high risk,to drain fluid. He has a great attitude and thanks to this site he felt not so alone with this dibilitating disease. Its scary for all but you can only hold your head high and pray to God for the best outcome. Thats what Wayne has done !!! This is not a disease that many have however there are lots of people inquiring so maybe its time to get the word out that this is as strong as cancer just not as well known. Please take heed that there has to be hope!!! I am sure without asking Wayne that he sends his thanks and hopefullness to each and everyone of you reading this. I know I pray for you all. Wellness to each of you from a loving mother.

My name is Wayne I was diagnosed with sm in 2003 but the symptoms may have started as early as 98-99 in my knee. It seems my sryinx is filled from top to bottom wth fluid. I have had hydracephlys since I was born , which I was told, people with this are susceptible to sm. As of 2007 I was not able to do physical work but now I can no longer do much of anything on my own. As some of the others have said I can not feel difference between hot and cold, touch and feel is gone, walking with cane but with help because balance is horrible. However, there is no pain which is lucky I guess. I need help getting dressed and have hard time feeding myself ( get help now with some things). The last 2 started just in last month. I also have hard time breathing and swallowing. My voice is hoarse because my right vocal chord is weak. I have no use of my right arm and losing the strength in my left. It is possible I could be in wheel chair very soon. This has brought upon great psychological efffects, which I am coping with, as I am person who likes to do things for myself. I am talking to OT for help around house for myself and my spouse but I am also looking for more opinions from neurosurgeons about an operation. I have been told there is someone in Montreal that specializes in sm so I am trying to find out the name of dr to let my family dr know. I am glad I found this site as I felt like I was the only one.

please help me.iwas diagnosed 2 1/2yrs with sm from c3-t1.i have 3 cysts growing horizontally.the drs thought that a shunt from my neck to my stomach would help.it won't return what i have lost but will prevent it from getting larger.everything i have read about the shunts are problematic(they clog and cause further nerve damage)So i decided not to do it.have any of you had the surgery and found any comfort or success?please let me know.also, besides the same discomforts you all have i also have extreme nausea.have any of you found anything that works for that?

Pamela, I was diagonosed with SM in Nov 2008 C4-C7 -T12 my pain is in between my neck very cape like and my shoulders, my right arm, the dr. prescribed me Topomax for nerve pain and it works wonders. I hope this helps you... I see a neorologist for pain and follow ups.

I was recently diagnosed with SM 3-26-09.caused by trauma in a car accident in 95. I have been told for years nothing was wrong with me and to go home and be a wife and mother and to see a depression specialist. Then one day I could not walk and the pain was out of this world. I went through a series of testing and the NS found it. My symptoms are leg pain. I have a hard time walking. My arms and hands go numb. My voice is hoarse. My back and hurts all the time. My feet are numb. Trouble with bladder and other. I just want to know if anyone else experiences the horrible pain and numbness in the legs as I do. What stage am I at and what is my future. I am relieved to know what I have but now I am left with so many questions.

I was diagnosed with SM a week and a half ago. They have found that I don't have CM or a tumor. I am afraid of what the future holds and it seems that I am now falling apart physically since I found out. My arms go numb when I sleep but the doctor told me my syrinx is lower so it should not be causing my arms numbness. My lower back hurts terribly but I have no idea if its because of SM or not. In the whole process I have recieved not one offer of help with the discomfort from any of the doctors who have seen me. It seems they don't even know anything about it. I am frusterated and worried. Thanks for a place to get comfort and find answers.

A year ago I didn't know that Syringomyelia and Chiari even existed. Now I search the computer daily, trying to figure out what my the future holds, for my 14 year old daughter, diagnosed with SM, August 2008. Ironically, she use to play this song, by Simple Plan, over and over a few years ago...before we knew. I'm still in shock and maybe denial that this thing has invaded our lives. Hopefully, I can be more positive in the future....

sites like this are so usefull as u feel unlistened to and as if ur pain must be all in ur head, which u know its not. i was rearended by a cement truck two years ago and am in constant pain, awaiting results of my brain scan. both my mother and son have sm

I am 45 now. Iwas dx with sm 1-1-09. Ican remember unbearable pain at age 9 after an accident,the only relif was hot baths all night long,my doctor said it was growing pains. I found at letter from my father a week ago it said his shoulder was killng him and he had no feeling in his toes.That was in 1983 he passed in1991 at age 48. I never knew the unbearable pain he was in. My younger brother was in pain mangement for 5 years and was in agony. His back was so stiff in the morning we lost him at the age of 39. I do know that the warmer weather here in Florida helps, The weather in Michigan and Tennessee was also unbearable. The hot soaking and swimming floating in the water would offer relif for the moment. My daddy always wanted to move back to Canada,his granfather came from London Canada. I have to go to Shands university in gainsville Florida on January 27th,2009. They've already sent a letter about the surgery. If anyone has had the surgery please e-mail me. My bowel and bladder are starting to be affected. I've had trama after tramma to my back and neck area over the years. But had these same symtoms with the leg pains.Plenty of diagnosises but no cure . Keep the faith Canada.