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 don`t know where to really start on trying to talk about what is going on with no one really talking about SM and how it has affected every ones lives and the things that we like doing but can`t.I know that it is very hard to open up (at least it is for me).I have been on here for a long time and there have been a few people that come and go and then others come and they don`t see much going on so they just move on to other places or just drop out of site and you never hear from them agian.I have not ever deleted anyone from my friends list because there is alway`s hope that they might come back and join in some of the discussions or just drop a line and see how every thing is going.I do know that it is getting harder for me to think of any thing more to say about what this rare disorder has and is doing to me.I was diagnosed in June 2005 and had surgery in December 2005 so I had to learn a lot about it in a short time.I know that I had symptoms for 5 years before it was diagnosed,probably because of it being rare and my doctor at the time just thought it was in my head.I don`t really know why it took so long but it did and I have to live with that.
I just think that we need to talk more to each other for suppoort and to try and help each other to understand that we are not alone.I just know that when ever I have tried to get people to start talking it seems like only a few want to join in.I don`t know what to do to make this group more out going or to open up and tell what you feel or just to complain or just talk.I want to tell every one that it will go away but I just don`t know.It hasn`t in me and I know of some that have said they have had it for years and others have had it for only a short while.My diagnosis was not a good one in that I have 3 of the syrnx`s and none of them are small.That it probably happened when I had the wreck back in 1992 but then no one really knows(chassing rabbits agian).
Getting back to why I am writting this,I would like to see more particapation by them members on this site but I can`t make anyone that joins this group stay or join in the discussions,I wish that I could it would make this group one of the best groups here at DS.But I can`t.Well enough of my rambling I guess I will leave it to you who choose to discuss or not just would like for you to think about things and TALK more often.
I just think that we need to talk more to each other for suppoort and to try and help each other to understand that we are not alone.I just know that when ever I have tried to get people to start talking it seems like only a few want to join in.I don`t know what to do to make this group more out going or to open up and tell what you feel or just to complain or just talk.I want to tell every one that it will go away but I just don`t know.It hasn`t in me and I know of some that have said they have had it for years and others have had it for only a short while.My diagnosis was not a good one in that I have 3 of the syrnx`s and none of them are small.That it probably happened when I had the wreck back in 1992 but then no one really knows(chassing rabbits agian).
Getting back to why I am writting this,I would like to see more particapation by them members on this site but I can`t make anyone that joins this group stay or join in the discussions,I wish that I could it would make this group one of the best groups here at DS.But I can`t.Well enough of my rambling I guess I will leave it to you who choose to discuss or not just would like for you to think about things and TALK more often.
When I feel a stabbing pain in my upper back, I have my husband squeeze me like a big bear hug and "crack" me. It helps. I don't know if it is the syrnix or disks, but since I don't know I won't ask him to do that anymore. I don't want to mess things up.
Also thanks for the point about not using traction. My husband also feels that if he wraps is body around me and pulls me apart, it will help stretch me out. I hate when he does it. Now I have an excuse for why he shouldn't.
Jen
Boy the chiropractor`s here sure don`t advertise anything about accupressure or kenesiology.I guess I am going to have to try Lubbock,Tx. agian maybe they have some one taking classes at Texas Tech.I might get lucky in that area since that is where most everyone goes around here when they have some thing that the doctors here don`t know about.
Jen,as far as letting anyone "crack" my back any more I don`t let them.If they even act like that is what they are going to do I tell them point blank NO.If you can`t treat me without doing that then I am out of there in a flash(well mabye not a flash but a slow shuffle).And this is comming from some one that has went to chiropractor`s most of my life,maybe that is one of my problems.You know that if you pop your knuckles they always said that your joints would get bigger,I don`t know if that is an old wives tail or not but I do have big knuckles and I used to pop them all the time when I was younger.Can`t do it now because I think my joints would break if I did...lol...
Another thing that used to help my pain before I started this recent deterioration was massage therapy. I have a friend who just graduated from massage school and when she raised her "friend prices" so she could pay back loans, it put her outside of my budget. She told me to try La James, which is a national school for cosmetology and massage. The students have to do so many hours of massage before they can graduate and their prices are ridiculously low as compared to a clinic. If it's something that you think might work, you could probably do a google search for massage therapy schools in your area to locate something close by.
Have any of you tried a cranial osteopath?
I didn't always feel like the osteopath was doing much but I'd feel a lot better a day or two after.
For me it gave short term relief but was quite expensive.
I may have to start looking at going again. Today at my hospiatl follow up appointment I was told that there is only one other possible reason that my head pain is till there and the surgeon is unlikely to want to treat it because of associated risks.
The consultant suggested that draining this may make a difference. It would be dangerous to fo though. His theory is that it may work because I wasn't in pain for 2 weeks after the shunt was put in place or when I was attatched to an EVD (3 years ago when this all started after decompression surgery.)
They didn't readjust the shunt or do any other scans yesterday we just compared all the previous ones and I asked lots of questions1
I have not posted much on this site because my symtoms are minor compared to some of you. And....it is taking so long for me to get in to see the neurosurgeon.
I did get 2 epidural injections which helped with my low back pain due to dics degeneration but nothing to help the mid back pain. I still have to get up at night and sleep in my chair because the pain is so severe!!
I like this site, I read the posts and draw support and encouragement from everyone.
Please don't stop posting it is helpful to some of us out there even though at times the information may not apply to the individual needs.........it does hit home when the time is rightj!! have faith, we are all going to have to rely on that to get us through.
Allen