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 am begining to think that they don`t know what to do about SM and that we as their patients are just ginny pig`s to them one tell you that you can`t do the things that you used to do and then another one tel`s you that you can.
Then when it comes down to treatment`s they have all sort`s of thing`s that they can`t agree on and now it is too late for me because at the time my Doc said this is the only thing to do.Since he is no longer in the same practice that he was in and can`t be found and I have to go to a different Doc this new one tell`s me that what the other one did was not what should have been done.
What do they think we are some kind of self healer`s that can preform miricales on ourselves.If I could do that then why the heck do they think I went to them for in the first place.I know get off my soap box but this is my life that I am talking about and now it is like they messed me up and tere is nothing I can do about it.
Has anyone else had this done to them??
What did you do?
Is there anything that will help??
Or are we at the mercy of these Doc`s that think they know all the answers????
Please submit any comment`s you have on this subject.
Then when it comes down to treatment`s they have all sort`s of thing`s that they can`t agree on and now it is too late for me because at the time my Doc said this is the only thing to do.Since he is no longer in the same practice that he was in and can`t be found and I have to go to a different Doc this new one tell`s me that what the other one did was not what should have been done.
What do they think we are some kind of self healer`s that can preform miricales on ourselves.If I could do that then why the heck do they think I went to them for in the first place.I know get off my soap box but this is my life that I am talking about and now it is like they messed me up and tere is nothing I can do about it.
Has anyone else had this done to them??
What did you do?
Is there anything that will help??
Or are we at the mercy of these Doc`s that think they know all the answers????
Please submit any comment`s you have on this subject.
deleted_user
SM is a hard one for any doctor who doesn't deal with it on a day to day basis. i know how you feel, but keep asking questions even if the doc seems upset with you. don't let him just talk over your head or talk about you like your not in the room. make sure your included in the conversations.
deleted_user
I know exactly what you are saying. I am so fustrated on trying to find a doctor who is willing to do the research on SM. I am scared if I don't do the research then something bad will happen because the doctors are not willing to help me. I just learned recently from reading reseach that I should not strain myself because it could make things worse, this would have been nice for a doctor to mention, you think? I just don't think anyone wants to be bothered. It is very depressing.
Monte
I am also finding it hard to find a new Ns for when I am going to need to have one.The doctors that I had in Denver only had the one NS that knew anything about SM and Chari I malformation and he took another position in a hospital in California,which is ok but I now live in New Mexico,just a little bit to far for me to drive...lol...
deleted_user
I understand how you feel ever Doctor I have seen have treated me like a lab rat. They try different medications on me every vist and get upset with me when they dont work. My Pain Management Specialist told me last month he is tired of treating me because nothing seems to help me. Now he wants me to seek Psychiatric help he said the pain I feel is not real. So, it's all my fault that I have this disease and he does not know what to do. I get very frustrated sometimes but I know I cant give up I know there is someone out there with the help we need and one day we are going to find them and get the right answers and treatment we need.
deleted_user
just new to this group and hope I can talk and help at times. Baz
Join the Conversation