just diagnosed with CM1

[katemac]

i was sent for an MRI scan as i have unexplained patched of numb skin around my body - they have never been able to figure out what it is and it's getting worse...

well yesterday i want to the doctor to get the results of the scan, and he told me that i have CM1 with cervico thoracic syrinx.   he also told me it was congenital and that it was nothing to worry about and that it has nothing to do with my numb bits.

i have a follow up appointment with the specialist at the hospital next month - but that seems like a while to wait to get some more information.   i was wondering if anyone could help me out?  

could this be related to my numbness?   i also get dizzy, although i always thought that it was related to stress, or not eating regularly enough - could this be a symptom?   can the condition progress - is this common?

i would appreciate any info anyone has - thanks.

[Shane99]

You need to find a chiari/syringomyelia specialist. Few doctors are aware of this or aware of how serious it can become at any rate. Make sure you see a neurosurgeon and that he/she is a Chiari specialist.

[Aussie1222]

The numbness you are experiencing can be caused by either the chiari or the syrinx.  So if a doc. tells you he does not think it is from your chiari, ask about the syrinx.  The syrinx causes nerve damage - your nerves affect your ability to feel, or not feel - they ARE your sense of touch.  So if they are being damaged you certainly could feel numbness.

[katemac]

thanks for the advice - i appreciate it.

i am in th UK so the healthcare system is quite different to the US.   i'm going to my local hospital for a follow up appointment with the consultant who originally sent me for the MRI - no idea if they have a chiari specialist, i will check it out.

thanks again for the advice - i already have a long list of questions for the doctor!

[selmaS]

aiMelissa gave you some good info. Make sure your NS is a chiari specialist. Not all NS are well informed on chisri as you would like to think.
Yes numbness, dizzyness and a multitude of other symptoms go hand in hand with chiari. Do not let drs tell u because of the size of hreniation you shouldn't be symptomatic. Keep looking until the dr listens to u and explains that u understand and feel comfortable.

Good luck
Godspeed
"sselma"

[aiMelissa]

I have numbness and dizziness and a whole list of other issues.  Yes CM1 can progress.  And yes it is a big deal and not something that should be taken lightly, especially if you already have a syrinx.  It's not going to kill you but the symptoms can progress and cause irrepairable damage if not treated, when treatment is needed.

EVERY PERSON IS DIFFERENT.  You can read all the want about the topic.  A good site to go to is the chiari instititute website and watch their videos about chiari and syringomylia.  You can also go to asap . org and it has a lot of info

And it does take a long time to get into doctors that treat CM1.  Where are you going?