Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 I am thrilled to finally start getting some understanding of my condition, but there's plenty more " understanding " needed. 9 1/2 years ago I was diagnosed with and operated on for chiari/syringomyelia. Although the comment has been made that it was a successful surgery, they didn't walk in my shoes -- endure the treatment, nor nearly die due to a surgeons apparent lack of knowledge. Had my mother not been by my side during the whole ordeal, I would not be writing this today. But, her being a retired R.N. kept her alert to signs of trouble, and when further treatment was " refused " by the hospital/doctor she and my husband basically kidnapped me by ambulance to another hospital/surgeon where an emergency surgery was done, literally saving my life. I have learned more in the last 3 weeks, over the internet, than I have in the last 9+ years talking to doctors and surgeons -- it's really scarry. One question I haven't been able to get an understanding of is " decompression of the syrinx " . I assumed, hearing that term, that it meant the syrinx was gone. I was shocked when a recent MRI showed the syrinx, just as large as the original. I thought, and it was my neurologists assumption, that the syrinx had returned. But, after comparing prior MRI's, realized the syrinx was never gone. In fact, it was explained to me that the syrinx was decompressed; the spinal cord was collapsed -- which wasn't necessarily good, but definitely the better of the two choices. I'm afraid I'm terribly confused -- can anyone explain ? At the time of my diagnosis, the only " symptoms " I realized was that one day my right side went numb. It wasn't until after the surgery other symptoms occured, such as the weakness in my arms and legs, terrible sense of balance and stability, and so many more of my problems are actually related to this condition. If I'd only known then what I have just so recently learned. Another question. Do these symptoms generally worsen, in spite of treatment? Quote Link to comment Share on other sites More sharing options...
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