PattiL Posted April 12, 2005 Report Share Posted April 12, 2005 Hi, Does anyone know of any electrophysiologists in the Cleveland area, Ohio, surrounding states? Chrissy normally sees Dr. Grubb, unfortunately lately he's not even returning phone calls from her reg. Dr.Dr. Chelimsky of University Hospitals in Cleveland (don't know if he's an electrophysiologist) but it's about a 6 month wait to see him. We don't know where to turn to next. We are seeing a Rheumatologist/immune Dr. next month to see if she can help with Chrissy's fibromyalsia. Is there any other Dr.'s that anyone knows of that deal with your immune system? Chrissy's so much worse during this last sinus infection that won't go away. She can't tell if it's just her sinus' or POTS symptoms or both that are making her feel so terrible. Nausea, not wanting to eat or drink and weakness are really bad this time.Thanks everyone.Patti Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 13, 2005 Report Share Posted April 13, 2005 Sorry you are going through this. Please refresh me on why you want to see an electrophysiologist? Just to study her arrthmias or what? I see red flags when it comes to pots and electrophysiology. The Cleveland clinic is there, is it a long wait? morgan Quote Link to comment Share on other sites More sharing options...
cnm1 Posted April 13, 2005 Report Share Posted April 13, 2005 HI Patti I am new this board - my Daughter Rachel has POTS/CFS. We also saw Dr Grubb. We are working with Dr Doroskar at UH in cleveland now. She knows Dr Grubb and is willing to try anything he recommends. She is an electrophysiologist. Perhaps we can turn her into a POTS specialist!!!!Louise Quote Link to comment Share on other sites More sharing options...
PattiL Posted April 13, 2005 Author Report Share Posted April 13, 2005 Thanks to both of you,Morgan, I can't say why I want her to see an electrophysiologist. I guess we're just a little bit desperate right now and are willing to see anyone who might have a clue about POTS. Her pediatrician is wonderful (she's 19), but unfortunately clueless about POTS, but he's willing to help in any way. I just remember someone saying on a prior post about this type of Dr. and thought maybe it's something we should try? Do you know of a particular Dr. at the Cleveland Clinic? unfortunately our insurance won't cover our going there anymore, but if it'll help, we'll try. Thank you so much.Louise,We saw Dr. Dorostkar right when we were discovering what was wrong with Chrissy--at the time she told us to pick between Dr. Grubb and her b/c she felt it would be too confusing going to both Dr.'s and possibleygetting different info. We really liked her though. I didn't know she was an electrophysiologist. Do you feel she's helped your daughter equally as much as Grubb? How old is she (your daughter)? Thank you very much for recommending her?Patti Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 13, 2005 Report Share Posted April 13, 2005 Patti, just make sure she knows about pots and dysautonomia. Trying to cure tachycardia and arrythmias caused by pots, with ablation, which is what electrophysiologists do, makes things much worse! I am sure I am not the only one that feels this way. It was the only way my body had to compensate and now I'm worse than I ever was. They can go in and look around to see what's causing the arrythmias, but unless they are caused by something other than pots and/or life threatening I'd never get ablation again. So you can have EPS studies done without ablation. I just have heard that everyone that's had it is in the same boat as me. If there's anyone who's had a positive experience with it, I'd like to hear from you. I now feel like I need some kind of pace maker to speed up my heart so I can feel better! morgan Quote Link to comment Share on other sites More sharing options...
cnm1 Posted April 13, 2005 Report Share Posted April 13, 2005 Patti Dr Doroskar has been willing to try the meds Dr Grubb recommended in his letter - that's all I want. I would like to see Dr Grubb again for more recommendations but I don't know if that will happen with his illness. Dr Doroskar has not really offered new txs but has been agreeable try try things Dr Grubb recommends or that we want to try that have research behind them. Actually I think it was you who mentioned Dr Doroskar to me on the Pediatric Network when Rachel 1sr got sick and I wanted tilt table testing. I am hoping to get her to know more about Dr Grubbs tx ideas. She says that she feels Grubb is superior to Chelimsky for adolescents. It is not perfect but at least she tries. She even wrote a nice letter to get Rachel accepted for wish through the Sunshine Foundation - so she takes her illness and its severity seriously. Louise Quote Link to comment Share on other sites More sharing options...
cnm1 Posted April 13, 2005 Report Share Posted April 13, 2005 Patti I forgot, Rachel is 17 and sick since 8th gradeLouise Quote Link to comment Share on other sites More sharing options...
DancingLight Posted April 14, 2005 Report Share Posted April 14, 2005 patti,i don't have an answer to either of your topics...but just wanted to have you pass on a special hello to chrissy. and to say a hello to you. you have both had a special place in my heart ever since i first joined ndrf...i hope chrissy is able to find some relief soon.emily Quote Link to comment Share on other sites More sharing options...
steph37822 Posted April 14, 2005 Report Share Posted April 14, 2005 oops Quote Link to comment Share on other sites More sharing options...
PattiL Posted April 15, 2005 Author Report Share Posted April 15, 2005 Thanks everyone,I made an appt. with Dr. Dorostkar at University Hospitals, it's not until the end of June--but better than nothing! We'll see what she has to say, I'll keep you posted on what happens the next couple of weeks with Chrissy.Patti Quote Link to comment Share on other sites More sharing options...
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