Busy week...

[anxiousjoe81]

So I was diagnosed last week with Syringomyelia (4.1cm C5-C7, 5mm diameter) and this week I have the following appointments:

Neurologist
Neurosurgeon
Cardiologist

I'm going to ask them about the following:

Testing for EDS, POTS, TCS.  

I'm going to request the following:

CINE MRI
Lumbar and Thoracic MRI

I hope to achieve from this appointments:

Understanding of surgical options and timelines.
Options for management of symptoms, specifically pain, fatigue and vision disturbances.
Further diagnostic testing of unknown areas of my spine.

Can anybody think of anything else I should be focused on asking or requesting?

Thanks in advance,

Joe

[selmaS]

  Hi some Drs will not do a CINE once u r found to have a syrinx, some still do it to get a better look at how things are moving, and if ur tonsils pulsate with ur BP.....

But having a syrinx, can indicate an obstructed CSF flow...unless u had an injury in that area?

Ask about overcrowding , or ur odontoid, ask if it is retroflexed......this is usually something that those Dx'd with EDS tend to have, but something to rule out.

Good luck

[anxiousjoe81]

Forgot to mention, I have also been diagnosed with a "borderline Chiari Malformation", at around 5mm herniation.