Considering Leaving DS

Over the last couple of months I have been in so much pain and without any Doctor that knows anything about what I am going through ,I did the ask an Expert here at DS a question about Syringomyelia . I thought that it was a simple question but so far haven`t  had any responce at all  . The question I asked was why is there so many different opinions as to what should be done for SM .I was told by my neurosurgeon that I have three Syrnx in my spinal cord and the one in my C-spine needed to be shunted ,so that was what I had done along with cord detethering which took over 9 hours . I am still in so much pain that each day I wake up and feel like I am not going to be able to even walk . I do have to force myself to do things around the house but sometimes it feels like I am fighting a loosing battle with my body and now even the doctors . I now live in New Mexico where if I do get a consult with a doctor then I have to go through it all over agian and a few have even told me that they don`t want to even talk to me because I have had the shunt and cord deteathered . So I am stuck with no doctor and the problem is always going to be with me . I just don`t know what to do anymore . I am at the point where there is nothing that I can do and no where to turn for help .I can`t drive for any distance at all and it seems like all anyone wants to do to me anymore is to give me injections that don`t work .I say that because I have had a years worth of steroid injections at Texas Tech Spine and Pain Center and even did a nerve block that did nothing .I can`t go back to my neurosurgeon because he was in Denver but moved to California . Rocky Mountain Neurological Alliance is where he used to be at in Denver ,and they are still there but now I am 500 miles away and just can`t make that drive any more . Now my GP is even moving and I am forced to get another GP .Stuck agian with having to find someone that has even the basic awarness about Syringomyelia or having to explain it all over agian . JUST VERY FRUSTRATED !!!!!!!

Replies

deleted_user
deleted_user

I am sorry that no one has responded to you. I was referred to another site that people say the responses are much quicker. It is medhelp. Try that site as well. Hopefully you will get some answers.
deleted_user
deleted_user

I\'m so sorry, Monte!! The situation you describe sounds like one that keeps throwing obstacles at you, and you are not in any sort of shape to negotiate the obstacles. All I can suggest is continue to take baby steps forward each day, don\'t give up. You have to advocate for yourself and I know you feel too weak to do that, but that\'s the way it is for everyone. Just one step in front of the other and each day, try to make a tiny bit of progress. That\'s how the turtle won the race!

Wish I could be more help. God bless you.

Virginia