Northern CA/Bay Area Doctor Recs?

[halffull]

Hey there. I'm not feeling very heard/cared for with my current specialist (or general doc really). 

Does anyone have any recommendations for good doctors that know how to deal with POTS in the Bay Area or Northern CA? 

I've tried two specialists at Stanford (Dr. Friday and Dr. Miglis) without much success, and currently see regular doctors in the One Medical Group. 

Open to a non-specialist who knows their stuff. 

[DizzyGirls]

Hi halffull!  I live in Northern CA, too, and several of our doctors are at Stanford.  I wouldn't recommend them all, but have you tried Dr. Jaradeh or his PA Irina Krugamova?  He takes absolutely forever to get into, but she is very good and her wait list is a lot shorter.  They are at the Autonomic Disorders Clinic in the Neuroscience building.  I know of someone who also sees Dr. Muppidi at the Clinic, too.  She got him through paperwork error, but she likes him.  I find that other than the two of them, I don't know anyone.  One would think that living in an area with so many "world class" medical centers that it would be easier to find a plethora of doctors who understand POTS.  Do you have Ehlers Danlos also?  Just recently my daughter was in the hospital at Stanford, had 9 vetebrae fused (cervical instability due to EDS).  We met the nicest doctor ever.  She is a hospitalist in the neurosurgery section and in one of our conversations she was commenting on how little they teach in medical school about things like EDS and Dysautonomia.  She soaked up everything that we had to share with her.  For neurosurgeons who understand EDS I would recommend Dr. Gerald Grant (ped neurosurgeon, Lucille Packard).  He makes exceptions for adults with complicated cases like my daughter's.  He's also a Chiari expert.  The other neurosurgeon is Dr. John Ratliff from the adult spine clinic.  Probably doesn't quite understand all of the idiosyncracies that Dr. Grant does, but he is top notch in spine reconstruction and understands the healing and mechanical part of EDS that affects the body in relation to surgery.  I, however, DO NOT recommend their PT people.  That is a long story for another time.  Sorry I couldn't be of more help. 

[halffull]

Thanks DizzyGirls. I might try to switch to Irina if I can. I've been having negative experiences at Stanford. I heard a rumor there might be a specialist at UCSF, but not sure. I do think it's super odd that there aren't more doctors familiar with it out here. 

I don't have Ehlers Danlos, but I'm glad your daughter found someone at Stanford that was good for that! 

[Chaos]

Hi!

I have been seeing Dr David L Kaufman MD at Center for Complex Diseases in Mountain View. His partner Dr Chedda is also very good.  Unfortunately they don't take insurance so I have to pay out of pocket for appointments and then submit it to my insurance for reimbursement as an out-of-network provider.  The lab tests they order are generally covered by my insurance so that usually is not an issue as long as you tell them which lab to use. 

He is knowledgeable about POTS, MCAS and ME/CFS as well as many other issues. 

I fly from out of state to see him and think it is well worth the effort and expense. 

[DizzyGirls]

I would avoid UCSF for anything remotely related to dysautonomia/POTS, etc. My daughters were two of the first kids seen there and we did not have a good experience.

[halffull]

Thanks Chaos! Never heard of Dr Kaufman, but there's some interesting/good stuff about his treatment methods on Phoenix Rising. 

Dizzygirls, thanks! That's good to know  

[Jesse]

I'd also recommend Dr Chheda and Dr Kaufman at the Center for Complex Diseases