PattiL

Hi Tearose, We were at Mayo this summer! Hope you have great luck with all your testing. Someone else stated that they hoped you had a hotel that's underground--if you do--they are fantastic, every one of the hotels has a plentiful supple of wheelchairs in their lobby for your use. It's so easy to get around down there. And so much more efficient than our hospitals in Cleveland. If you don't already have one and can afford the extra $$, I'd also book a 'suite' in your hotel. The one we stayed at was only $20 more than the regular hotel room. It was well worth the cost. There was a separate living room with a couch, microwave, tv, toaster, table and chairs, etc. It was great in between appts. when you just don't feel like laying in a bed all day. Good luck! Patti

Is there anyone here who is on their parent's health insurance policy as a disabled dependent? So far Chrissy has been able to keep up with a full time (somewhat) schedule at college. This semester is not starting out well. Last month I sent all the information that our insurance co. requested to get her approved as a disabled dependent, but no answers yet. Chrissy has already missed her first couple of days of school and she is scheduled for sinus surgery soon. Who knows how much school she'll miss then. She would ultimately prefer to skip this semester so she can get through the surgery w/o the pressure of school. I've called our ins. rep. and explained the situation--they're going to get back to me. It seems like our only alternative will be some type of correspondence college classes. I just wondered if anyone has any majic formulas for working with these ins co.'s? Patti

Hi, Chrissy has been seeing Dr. Grubb for 5 years now, and unfortunately, yes, we have waited up to 4 hours, although sometimes it's only been one hour (rare). Just ask Sherry when you get there how far behind he's running, (she'll have a good estimate). There've been a couple of times when we left the building and went shopping, had lunch and then came back. If you leave, just make sure you tell Sherry. The wait is well worth it though! Patti

Hi Lisa, We just saw Beverly in December, hopefully you'll like her as much as we did. As far as wait time--everytime we've seen her so far (about 3-4 times), the MOST we've had to wait is about one hour. I don't know if it's better scheduling or what. She still takes her time with us, but of course, not the 2, 3 or 4 hour marathons that Dr. Grubb does. She's very thorough and if you see her when Grubb is there, he ususally stops in too. Good Luck!! Ask questions, she's very knowledgable. Patti

I agree with Briarrose. Dr. (Mrs.) Chelimsky is great, but I thought she was strictly pediatrics--I'd call and check though. Her number is 440-646-8055, she is part of University Hospitals and she has an office in Westlake. Patti

Emily, Is Melissa back in Toledo, or is she at a Cleveland hospital. If she is in Cleveland, would she want, or can she have visitors? Thanks so much for keeping us updated. Melissa, MY thoughts and prayers are with you daily. Please take care of yourself. Patti

Well, at least we had better luck today. This doc was fabulous. Said Chrissy's eye pain and burning COULD be associated with her sinus', since her deviated septum is so bad!. He actually LISTENED about EVERY little symptom Chrissy told him, and not once did he say anything about her being depressed--(yea!,) nothing about any of the symptoms NOT being related to sinus' and didn't pretend to be an expert on POTS! He's going to look over her CAT scan (which wasn't delivered yet) and then make a decision on what the next step should be. He actually said 'there's no reason for you to be living like this. Being congested all the time AND having sinus pain isn't normal! No kidding--it only took us I don't know how many Dr.'s for someone to believe her symptoms. It's almost like starting all over again trying to find a POTS dx. Morgan, I think I will send him a cymbalta brochure--that's a great idea and maybe I'll tape sophia's message to the front of it!! Thanks guys. Patti

I thought we were done with all this, but no, another Dr. told Chrissy today that she must be very depressed. Why? you ask--because she wouldn't be taking Cymbalta if she wasn't AND it wouldn't be helping her with her fatigue if she wasn't really depressed!! HUH? And to think, all this knowledge from an ENT Dr.! He said, 'you know, I've had POTS patients b/f, in fact, i had one this morning (yea, right) and SHE'S depressed and on Cymbalta.' AND........what is wrong with this people. He looked at Chrissy with such sadness, as if she was in a deep denial! He asked me about her state of mind and I told him she's one of the happiest people I know. Again, that look 'you poor things--you're both in denial!!!' He went on to say that b/c of her depression her sinus' get stuffy. WHAT!! Can't any of these Dr.'s just admit they don't know all the answers and they can't figure out what is wrong instead of making up such stupidity! I'm not by any means making light of depression ( i have it myself) I just can't understand why these Dr.'s keep bringing it up for no reason. Tomorrow, another appt. with a sinus specialist, suppossedly one of the best around here (the one we saw today is pretty highly regarded too though). Hopefully tomorrow's Dr. will have some real answers. Just thought I'd post this to add a little humor to your day! Patti

Thanks for the invite Melissa! Hopefully we won't have any 'lake effect' snow tomorrow, or I may be contacting you! Patti

Chrissy has an appt. with Beverly/Dr. Grubb on Wed. Just wondered if anyone else is going to be there. Our appt. is at 1:30, so I'm sure we'll be there most of the afternoon. Patti

So glad to hear you're home Melissa. Hope you're feeling better. Patti

Hi, There's a strong possibility that Chrissy may need surgery for her deviated septum. Has anyone had this done since they've had POTS. How did you do during the recovery process? Patti

Melissa, Hope your hospital stay is not a long one. Sending prayers and hugs. Patti

Just wondering--do any of you have better luck with one antibiotic over another one? The last couple of months Chrissy's gotten way too many sinus infections. Usually she can get them cleared up with Augmentin, but not always. This time she's been on Augmentin, which didn't help at all, she's now on Biaxin and she's still not feeling great. She can't seem to get a break with these infections. Any ideas? Thanks, Patti

Jan, MY deepest sympathy is with you and your family. You will be in my prayers. Patti

Hi Ernie, With our insurance plan, we pay $40 for one months supply for Chrissy. The regular price is $115.00 per month. Patti p.s. It has really helped Chrissy quite a bit.

Hi Dayna, Chrissy and I just returned from Mayo. We saw Dr. Low before all her testing and then again afterward. She had two pretty full days of testing. She was part of a research study, so there were no costs to us whatsoever. Of course, our flight, hotel, meals, etc. were on us. In fact, they said that if she completed all the test that they would pay her $100. The week prior going to Mayo we had an appt. with Dr. Grubb and he mentioned that he heard Vanderbilt was also conducting a study. As far as a referral goes, you could probably call and find out if you definitely need one or not. Dr. Grubb did call Dr. Low for us, but I don't know what their procedure is for this. If you need phone #'s and any other information for Mayo, PM me and I'll be glad to send them to you. Patti

Hi everyone, Chrissy has a Dr. Grubb appt. next Tues, the 20th at 3:00---anyone else that day? Patti

Hi Dayna, There was a post from back in November of '05 about being sicker at home. I wasn't sure if we had the same problem with Chrissy or not. It might be worth it for you to have the air tested in your home. I would think it would be less expensive than moving, but I guess it would depend on the results. Patti Here's the link to the post.... http://dinet.ipbhost.com/index.php?showtop...=sicker+at+home

Hi Melissa, Of course, Chrissy and I will definitely be attending the Hillcrest meeting and we will also try to be at the Parma one. If anyone needs a ride, please PM me. I live east of Mentor and could pick up anyone on the way, or nearby. Patti

Hi, The POTS specialist at CC is Dr. Fouad, she's the one that does the TTT and other testing. I personally have never heard of Dr. Burkhardt, BUT that doesn't necessarily mean anything. He could be one of the best 'hidden' doctors at CC. Dr. Foaud is great at dx'g, but not so great with her follow-up. I looked up Dr. Burkhardt up on the CCF web-site and he is a specialist in electrophysiology, so he might be a great choice. Have you already had a TTT? When's your appt? Let us know how you like him. Patti

Hi everyone, Does anyone have a Dr. that they can see on a more regular basis? We see Dr. Grubb/Beverly twice a year--( and we know how fortunate we are to have him as a Dr. ) but lately Chrissy is needing someone more often. Chrissy's pediatrician kept hinting around to us that Chrissy should see an 'adult' Dr. (OK, so what if she's 20 ), anyway, this new Dr. is only good for the basics, sinus infections, colds, etc. It would be so nice to have someone else who understands, that we wouldn't have to wait weeks/months to see. I've looked in previous posts some of the Dr.'s you've mentioned......Dr. Amer Alsheklee at UH, Dr. Chaneli at CC, Dr. Hanna at Metrohealth and Dr. Robert Shields. Do any of you still see any of them?How easy is it to get an appt. with them and what is their understanding of POTS? Thanks, Patti

Melissa, As far as Hillcrest Hospital (Hillcrest of part of the Cleveland Clinic) goes, there is free parking and no charge for the room either. They also have a cafeteria if anyone wanted to buy any snacks and bring them into the meeting room. The parking lot is very accessible to the hospital and there are many handicapped parking spots. I'm so glad the church in Parma is working out. Chrissy and I are looking forward to meeting everyone! Patti

Hi guys, As a back-up place in case the Parma church didn't work out, (I called before I saw your post Kim) I called a couple local libraries (Mayfield and Beachwood), they seem to be pretty booked on the weekends, although a couple of week-nites are available. Then I called Hillcrest Hospital. They have both the 14th and 21st of May available, which are both Sundays. Hillcrest is located off I-271 at the Mayfield/Gates Mills exit. If we don't want to wait until June we could take one of these two days. She also said we could book the room monthly or bi-monthly if we'd like to continue our meetings. There is no cost and of course, since it's a hospital, it is wheelchair accessible. Any night is usually good for us as long as Chrissy's finals are done (after May 13th). Weekends are also ok, after 1:00 pm is best. Kim, whatever help you need, let me know. Patti

Hi Kim, That sounds great if you can get the room for free. If anyone would need a ride there, I would have room for two more people in my car. I live on the far east side of Cleveland so I could pick up anyone that lives on the way to Parma. Keep us posted Kim. If the church doesn't work out I'll start calling some libraries. Patti