Dr Vernon Rowe, Neurologist in Kansas City for EDS

[Zenzan222]

Hello All,
I’ve been digging into the Cranio Cervical Instability topic lately. I’m fairly certain I have some form of EDS or something like the Hypermobility Spectrum Disorder. I live in St Louis, MO, which is a geographical black hole on all things CFS and EDS. I found a doc who looks pretty good in KC - Dr Vernon Rowe of the Rowe Neurological Institute.

https://www.neurokc.com/headache-fatigue-hypermobility-syndromes-dizziness-ehlers-danlos-syndrome/

He looks like he’s got some specialization in diagnosing hypermobility issues. Anyone have any experience with him? I tried to search for any reference to him on this site but I didn’t find anything. I must admit I haven’t read everything! I’m still working my way through this treasure trove.
Im planning to make an appointment with him soon. Any feedback would be appreciated.

 

[andyguitar]

I've had a look on Dr Rowe's website @Zenzan222 and he sounds pretty good to me. Well informed and open minded which counts in my book.

 

[junkcrap50]

I live in St Louis, MO, which is a geographical black hole on all things CFS and EDS.

No one from WashU connected or doing research in EDS? (CFS I can understand bc it doesn't fit with establishment medicine.)

 

[Zenzan222]

I've had a look on Dr Rowe's website @Zenzan222 and he sounds pretty good to me. Well informed and open minded which counts in my book.

That was my thought as well. He doesn’t take insurance, though, and is $650/hour, so I’m going to look for other options. Perhaps Dr Tinkle in Indianapolis.

 

[Zenzan222]

No one from WashU connected or doing research in EDS? (CFS I can understand bc it doesn't fit with establishment medicine.)

I’m looking, but I’m not finding. Wash U seems to be weirdly opaque in their structure, though. I’m really not clear if no one is interested in EDS, or if they’re just hidden away. Still searching. Seeing a Wash U rheumatologist in April, so hopefully that will shed some light on things.

 

[Zenzan222]

That was my thought as well. He doesn’t take insurance, though, and is $650/hour, so I’m going to look for other options. Perhaps Dr Tinkle in Indianapolis.

I may still go to Dr Rowe, though. He seems very good and though he has some detractors, he also has a lot of proponents in the Kansas City EDS community.