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Dr @ John Hopkins


jkapache
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A friend of mine saw on TV about a year ago a dr at JH that treated a girl that had POTS.. turned out she had a tumor on her brain, they removed it and I believe her symptoms are undercontrol or gone (my friend couldnt remember the whole story!). But I was just wondering if anyone knew the name or any info on this dr. I tried to look it up myself- but I am not familiar w/ JH and I dont even know what kind of Dr this was! Anyhow..... if anyone knows anything please let me know! THANKS!!

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Was the program called Medical Mysteries on the Discovery Health Channel????

That might help to narrow down your question.

Also, there is an Italian dr. named Dr. Bolognese who is at the Chiari institute in NY and he is the doctor who was featured on that show. Although, I do not know if we are talking about the same show/episode.

I do not know if an Italian doctor at Hopkins who treats POTS. But, that doesn't mean there isn't one.

The girl had chiari malformation (not a tumor on her brain) and was evaluated by Dr. Bolognese and he is the one who performed her surgery.

Chiari and Cervical Stenosis as causes of POTS have been discussed in detail on this site in the past, as have the risks, possible benefits, etc. of surgery. A search for these terms might help...

Hope this helps!

Emily

P.S. Lois! We were both posting at exactly the same time and thinking the same thing! I saw your post after I posted! Funny how we were both posting at the same time. A little belated, but L'Shanah Tovah to you! How are you doing these days????? Em

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Hmmm- the only Italian doctor I know of in the States who treats POTS is Dr. Biaggioni at Vandy, but he's actually from Peru or somewhere in South America. Otherwise there's Dr. Furlan in Milan. But the thing is, if she was being treated for POTS symptoms that actually ended up being pheochromocytoma, then removing the tumor didn't help her POTS, it just got rid of the pheo.. and obviously if what helped was to remove it, then treatment of the POTS symptoms wouldn't have been what helped her.

Anyway, this obviously doesn't refer to what you saw on TV.. but I'm pretty sure that there are some docs at JH who treat POTS, though I can't help you with names... sorry!

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Jess,

Can you talk to your friend again and get more details?

Try doing a search also on this site for "Discovery Health" and you will also get a discussion of the show as we also discussed it when it was on. Maybe it will ring some bells for your friend? Maybe she thought 'tumor' when it wasn't really a tumor?

The doctors at hopkins who treat POTS do not also do surgery. The major doc there is not accepting new patients.

Also, the chiari and cervical stenosis are what come up most as being linked to POTS, rather than a 'tumor' or some sort...

Hope this helps,

Emily

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Thank you all so much for you help! It was Dr. Bolognese.. I googled him and that was def the dr. My friend means well, but she sometimes forgets important details! And thinks that I am not getting enought from my drs.... but from the sounds of it- Im getting as much as everyone else........ POTS is what it is and it isnt going to change! I am very curiouse about this Chiari stuff...................

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I have slight cervical stenosis and was a candidate for the surgery, but I declined that 'solution.' I decided I can live a somewhat 'full life' on my other treatments (meds, pilates, taking care of myself) and I didnt want to risk the surgery. It's very scary since they go digging in a very delicate part of your brain- not something to take lightly!

A good friend of mine had the chiari malformation and Dr Weingert at Hopkins did her surgery. She seemed somewhat better for a while, but now - even though she works full time- she has many of the same symptoms and still struggles day to day.

I'm sure the surgery does work some people, otherwise maybe they wouldn't do it at all. I just think of it as a last resort b/c of the risks of complications.

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