Chiari Malformation Community
Busy week...
About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

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
2 Comments Post a Comment
Blank
Avatar_m_tn
Forgot to mention, I have also been diagnosed with a "borderline Chiari Malformation", at around 5mm herniation.  
Blank
620923_tn?1405964489

  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
Blank
Post a Comment
To
MedHelp Health Answers
Recent Activity
620923_tn?1405964489
Blank
selmaS commented on photo
4 hrs ago
1755089_tn?1376057155
Blank
drewlevas uploaded new photos
6 hrs ago
10322227_tn?1409325110
Blank
chiaricarley I am excited about this com... Comment
15 hrs ago
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
Avatar_m_tn
Blank
Ball123
4816750_tn?1368808270
Blank
frankie_rush
New Tazewell, TN
5640779_tn?1375816966
Blank
desertstorm2009
AZ
979826_tn?1389039958
Blank
soccero
germantown, MD
Avatar_f_tn
Blank
Viva001
Chapel hill, NC
Chiari Malformation Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
Avatar_m_tn
Blank
Ball123
4816750_tn?1368808270
Blank
frankie_rush
New Tazewell, TN
5640779_tn?1375816966
Blank
desertstorm2009
AZ
979826_tn?1389039958
Blank
soccero
germantown, MD
Avatar_f_tn
Blank
Viva001
Chapel hill, NC