gwen54 Posted November 7, 2006 Report Share Posted November 7, 2006 Hi, I posted a while back looking for a dr who understands/diagnoses POTS in the boston area. Due to some other health issues, I had to put this on hold for a while, but now I am looking to schedule the appt as I have many symptoms of autonomic dysfunction. my pcp just had me do a 24 hr holter and suggested doing the tilt table next (eeeeeeek)many recommended Dr Lelorier. Unfortunately he isn't contracted with my insurance and the referral/auth process would be a pain, if even possible but I noticed Beth Isreal Deaconess on the list too, and they would be covered. Have people had good experiences with them? The receptionist said I would come in for a tilt table test with a technician, then the neurologist would review the results and schedule a consult if needed. are they knowledgeable and compassionate? I have some very bizarre and disabling neuro/ brain symptoms and I generally have horrible luck with neurologists understanding what I go through day to day. I don't think I could handle one more arrogant dr!!one last question.... I've read that some places give you medication during the test, some don't. The receptionist wasn't sure. Does anyone know if Beth Israel does that? I have MCS and react badly to many drugs, so I'm concerned I wouldn't be able to handle it. thanks for reading. I'd appreciate any help!! wishing you all wellness Quote Link to comment Share on other sites More sharing options...
cardiactec Posted November 7, 2006 Report Share Posted November 7, 2006 HEY THERE,i have had a wonderful experience with dr.roy freeman's group of auto dys docs (at beth israel).........you probably wont get in to see freeman, since he's the head hancho in pots/auto dys and is always on the go, but dr.christopher gibbons or istvan bonyhay are both excellent docs that work with freeman with autonomic dysfunction patients.......i currently see gibbons and he is excellent. that is who i would recommend ...good luck.,i'm not sure how beth israel does their tilt table's now, but when dr.gibbons did my tilt three years ago at beth israel they gave me no meds during the tilt (im not sure if that was because the test was very positive without the meds or what) .........i think sometimes they give meds if the test is in the "Grey line" or if your heart rates arent responding to tilt, so they chemically try to induce your heart rates to respond, if they will, to tilt......... Quote Link to comment Share on other sites More sharing options...
gwen54 Posted November 7, 2006 Author Report Share Posted November 7, 2006 THANK YOU!!! your response was very helpful. I'm so happy to hear you had a good experience there and I appreciate the recommendation! was it Dr Gibbons who did the test or was it a technician? Quote Link to comment Share on other sites More sharing options...
ellepee Posted November 7, 2006 Report Share Posted November 7, 2006 Hi-I see Dr. Freeman and both he and Dr. Gibbons are very good. I had no meds during my tilt table and it was done by a technician- I didn't see a doctor the day I had it done.~Elle Quote Link to comment Share on other sites More sharing options...
cardiactec Posted November 7, 2006 Report Share Posted November 7, 2006 hey there, it was dr.gibbons that did the test on me three years ago.... Quote Link to comment Share on other sites More sharing options...
gwen54 Posted November 7, 2006 Author Report Share Posted November 7, 2006 hi Elle, thanks for your reply! I appreciate it Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 7, 2006 Report Share Posted November 7, 2006 It's pretty common for the TTT to be done by a technician, not by the doctor who is treating you and/or will be interpretting the results. My test, about 10 years ago in NY by Columbia Presbyterian, was done by a tech.Nina Quote Link to comment Share on other sites More sharing options...
cardiactec Posted November 7, 2006 Report Share Posted November 7, 2006 the way we do them is to have a tech and the doc there (typically an electrophysiologist, since tilt table tests fall under the category of electrophyiology studies). usually a doc has to be present because many patients can pass out from meds administered or just from their own bodily responses to tilt. one patient that the doc did a tilt on actually coded. i'm glad he was there, cuz us techs arent lisenced to handle such situations. that is of course a rare occurance, but still..... Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted November 7, 2006 Report Share Posted November 7, 2006 I have seen a neuro at Beth Israel Deaconnes and I am switching because he basically ran out of ideas to treat me. I felt as though he had no idea what to do with me. Could you maybe get in to see Dr. Novak...He is affiliated with Boston Medical Center but I believe he has a sep. private practice... I've heard really great things about him from my cardio Dr. LeLorier...as well as many other doctors..I'll let you know how I make out when I see Dr. Novak!!!I don't want you to not go to BIDMC because of my experience, maybe the docs can help you more than they helped me!Also, I wasn't given any meds at BIDMC or an IV there.Goodluck!Jacquie Quote Link to comment Share on other sites More sharing options...
pickledfairy Posted November 8, 2006 Report Share Posted November 8, 2006 I recently started seeing Dr. Novak at BMC. He was very compassionate and thoroughly explained the mechanisms for what I have been experiencing. I did not have my TTT there, but he did go over the results and did his own neuro exam. He gave me an additonal dx (than the one I got at Mayo) and laid out his plans for treatment (we have three things we will try before admission and taking me off all meds and then adding one back at a time and seeing it's affects on my TTT). He is also very willing to communicate with you between appointments when you have questions and concerns. It sounds like you can't go wrong, which ever practice you choose....hopefully one of them will be covered by your insurance. Good luck!Sheridan Dx: POTS, Autonmic neuropathy, asthma, GERDMeds: Mestinon 60mg tid, Labetalol 150mg bid, Omeprazole 150mg daily, Xopenex inhaler, Advair inhaler bid, YasminOthers: Lots of fluids and salt, ginger tea for nausea, swimming and walking when able Quote Link to comment Share on other sites More sharing options...
gwen54 Posted November 8, 2006 Author Report Share Posted November 8, 2006 thanks for all the help! cardiactec - my concern exactly...the possibility of having something happen and no dr there is scary. Jacquie - thanks for sharing your experience, although I have to say it does worry me since I'm also a difficult case and stump many drs - esp since I dont tolerate many meds. But since BMC doesnt take my ins, I'll start off there and see how things go. If you don't mind me asking, what are your main symptoms? pickledfairy - thanks.. Dr Novak sounds great - but i just checked and I'm bummed he's not on my ins plan either. good luck with the new treatment plan! If anyone else wants to share their experiences with any boston drs, please post or PM me! but thanks to your responses, I'm feeling pretty confident that I'll be in good hands at Beth Israel and I think I'll go ahead and schedule the tilt test.thanks again Quote Link to comment Share on other sites More sharing options...
ellepee Posted November 8, 2006 Report Share Posted November 8, 2006 Good luck! - let us know how it goes.I go to Beth Israel and am not an easy case either...besides seeing those in the autonomic lab, I have seen many of the other neuros there as well- they keep passing me around (usually this just results in ruling some things out) Quote Link to comment Share on other sites More sharing options...
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