Avatar_universal
Busy week...
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
Cancel
2 Answers
Page 1 of 1
Avatar_universal
Forgot to mention, I have also been diagnosed with a "borderline Chiari Malformation", at around 5mm herniation.  
Comment
Cancel
Avatar_universal
Comment
Comment
Submit Comment
620923_tn?1452919248

  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
Comment
Cancel
620923_tn?1452919248
Comment
Comment
Submit Comment
Your Answer
Avatar_universal
Answer
Know how to answer? Tap here to leave your answer...
Answer
Busy week...
Submit Answer
A
A
Recent Activity
620923_tn?1452919248
Blank
gjjl, and selmaS commented on gjjl's status
Feb 05
16744917_tn?1451270439
Blank
gjjl commented on 2016. A bumpy start....
Feb 04
16744917_tn?1451270439
Blank
gjjl seroma or spinal fluid leak... Comment
Feb 04
Top Neurology Answerers
620923_tn?1452919248
Blank
selmaS
Allentown, PA
7530528_tn?1428275172
Blank
AKC_75
TX
562511_tn?1285907760
Blank
Karen99
CA
1306714_tn?1327260680
Blank
linnielou232
muskegon, MI
Avatar_m_tn
Blank
Ball123
Avatar_f_tn
Blank
mikeysmom1995
Oxford, MI
Chiari Malformation Community Resources
Top Neurology Answerers
620923_tn?1452919248
Blank
selmaS
Allentown, PA
7530528_tn?1428275172
Blank
AKC_75
TX
562511_tn?1285907760
Blank
Karen99
CA
1306714_tn?1327260680
Blank
linnielou232
muskegon, MI
Avatar_m_tn
Blank
Ball123
Avatar_f_tn
Blank
mikeysmom1995
Oxford, MI