Need help and Advice on Syringomeylia

[LilKara]

Hi,

I am 19 and recently found out that i have Syringomyelia, a syrinx starting at T5 going down to my conus, with suspicion of a secondary syrinx. I found this out from a MRI scan, becuase i am having persitant pain in my back, I had an X-ray which showed i have a slight curve in my spine - scoliosis - this was about a year ago. My consultant would not tell me anything about Syringomyelia just told me to wait to see a neurologist which i have to wait to get an appt.

My concern is that i am a sports coach and do not know whether i should continue taking part in activities i coach or if this is going to make it worse. I am trying to push to been seen as quickly as possible but hospitals hve to follow procedures, I am in agony with the pain in my back and that is just form walking around all day. I have tried co-codamol to ease the pain but it doesn't even touch it, i have had some of the symptons like headaches, stiffness in back, i am get shooting pains down my right arm.

How quickly should i been seen? Will my scoliosis complicate my situation?

Really need advice

Kara x

[LilKara]

Hi, Since my last post i have been to see a neurosurgeon, and he wasn't very helpful, he just told me to get on with it and there was nothing thay can do and that i should consider changing my carreer path.

I am not totally convinced, as my syptoms seems to be getting worse, i have recently been getting stiffness, numbness and severe pain in my hips. Does anyone else get this?
I am still getting pain in back as well as stiffness. And sometimes i fell like my body is shaking. Get most of this pain after walking.

Really don't know what to do, I am getting referred to a neurosurgoen at Kings College Hospital as suggested through the ann conroy trust.

Is anybody else in the or was in the same position as me? Scared that they are going to leave me to get on with it.

Kara x

[selmaS]

Hi Kara,

Syringomyelia (syrinx) is a cyst like cavity that fills with CSF and can stay the same size for yrs and go unnoticed or it can be jarred from an injury or activity...u should stop ur sports activities....

If the syrinx grows it can put pressure on the spinal cord....U will need a specialist in the chiari/syringomyelia field.Please stop by the chiari forum here on MedHelp.

If u have not had a MRI of ur complete spine u should...u need to check for tethered cord....it can cause scoliosis...And u do not want a nuerologist u need a neurosurgeron that again is a specialist in this field.

Hope to see u in the chiari forum

"selma"