Chiari malformation with syringomelia

[Doris1971]

Hi folks

I have recently been diagnosed with the above - my syrinx is cervical.

I just wondered if anyone on here also has this. How have you dealt with it? Have you had the decompression surgery and how did you recover? How have you got on with coping with all the symptoms? How have you got on with the cost of travel insurance? Have you been declined insurance?

Thanks in advance for any replies

[weeleighluigi]

Originally Posted by Doris1971

Hi folks

I have recently been diagnosed with the above - my syrinx is cervical.

I just wondered if anyone on here also has this. How have you dealt with it? Have you had the decompression surgery and how did you recover? How have you got on with coping with all the symptoms? How have you got on with the cost of travel insurance? Have you been declined insurance?

Thanks in advance for any replies

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I don't have your issue, but i do have a -yet to be properly confirmed- CSF leak. My Neuro can't find it in my head, I have been referred to a skull based ENT cos my Neuro lost the will to live... the symptoms are 100% but he can't find it! Lol.

I have heard that chairi malformation can cause CSF leaks and that the symptoms can be similar. I struggled a lot for 3 years, eventually my Neuro put me on gabapentin, horrible stuff but it has really gotton rid of a lot of my pain.

I hope you get something that helps, look for a Facebook support group, they can be super helpful