[Bobomb92]

I've had facial flushing going on for years now where my cheeks flush, sometimes only on the right side. I have ehlors danlos syndrome and POTS syndrome, but this seemed to occu after i twisred my neck and had an "injury." My doctors are puzzled and i know it is a neurological symptom. Could this be related to the cranio-cervical instability that i just got surgery for? Or some type of vascular problem in he neck?

[Mark in Idaho]

With your extreme history of injuries, symptoms and treatments (surgery, ECT etc), I think it is very difficult to expect any worthwhile diagnostic or other medical help here on NeuroTalk. Support with the day to day Activities of Daily Living (ADL's) struggles we all live with is probably all we can offer as help.

Do you live anywhere near a medical school? Getting into a class diagnostic project where you have multiple med students researching your symptoms may be a great opportunity.

[Bobomb92]

Originally Posted by Mark in Idaho

With your extreme history of injuries, symptoms and treatments (surgery, ECT etc), I think it is very difficult to expect any worthwhile diagnostic or other medical help here on NeuroTalk. Support with the day to day Activities of Daily Living (ADL's) struggles we all live with is probably all we can offer as help.

Do you live anywhere near a medical school? Getting into a class diagnostic project where you have multiple med students researching your symptoms may be a great opportunity.

Thanks for being straight up. I do live about 15 minutes away from Johns Hopkins in Maryland. That is a very good idea though and i will look into it. I am currently seeing a doctor there who specializes in autonomic dysfunction and is world renowned. He is very good at figuring out difficult cases but he even says mine is very complex and is having a harder time. He also recommended me to the neurosurgeon who did my surgery and is also world renowned. I see him this month for a followup on my surgery. I don't know what to do...I can't live like this and something needs to change but i have gotten tons of tests and my thinking problem which is so severe is unaccounted for still...meaning they can't find the cause. But i have had some pretty weird anomalies through the years.

Thanks again and if it would be alright i would like to private chat with you on here just to make sure i have my bases in line.

[Mark in Idaho]

Bobomb, feel free to PM me.

Remember one thing, those world renowned doctors are often noted for just a single or a few specific sub-specialties. It is quite presumptuous to expect their skill to cover all areas of their medical specialty.

Some past research has shown that surgeons are often still learning great amounts even though they have done a specific surgery 500 times.

As a craftsman who specialized in a very narrow area of remodeling, I was still learning new things after 15 years and thousands of very similar jobs.

Case in point, I have been seen by four fellowship trained hand surgeons. I would never let two of them touch my hands again.