Last summer I had an MRI and it showed a syrinx in my spinal cord from T4 to T12. I have severe pain on a daily basis. Have been seeing a Neuro Surgeon since. I have had 3 MRI's since the first one to keep an eye on any changes in the size of it. Surgury is the last possible option but I have been told that it is not a cure. Basically a shunt is put into the spinal cord to drain the fluid but there are no guarantees that it will help or that the cyst will not fill up again. As the surgury is very dangerous the nuerosurgeon is taking a wait and see approach. Which is good as I don't think at this point I would even entertain the thought of having it done.
I am now seeing a Pain Management doctor. She is basically experimenting with different kinds of medications and injections in my back. I am on Morphine right now, slow release morning and night as well a break through Morphine during the day. Right now I think that I have the pain under control. I would rate it right now as a 5 which I can live with. I know soon the Morphine will no longer be as effective and that is why my Doctor keeps switching things up. I think the scariest part of this is not having a doctor who has any real first hand experience with my condition. I feel as though I was given the diagnosis and then left to figure it out myself. As it is a fairly rare condition I have yet to find a specialist or anyone for that matter that knowes anything about it. I need to know more about this other than just the name of it. I would love to talk to anyone that has the condition. Someone who maybe able to lead me in the right direction to find alternative help or for that matter any help. The thought of for ever being on narcotic drugs just so I can function on a daily basis is a terrifying thought. I am 46 and a mother of 3 and I refuse to just give in and give up on my life as I once knew it. So if anyone can give me advise on this it will be truly appreciated.
Jennifer in Ottawa , Canada
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