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Cleveland Clinic Or Pots Dr. In Columbia, Md


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I have been referred to the Cleveland Clinic for evaluation and management of POTS. Has anyone else been there and if so, what was your experience??

I already have an appointment scheduled with a doctor in Columbia, MD. John Hopkins doesn't treat POTS but gives this doctors name and phone number out if you call them for information on POTS doctors. I can't get in there until May. If I can get in earlier at Cleveland I will take that appointment. (Columbia is about 3 1/2 hours away and Cleveland is about 5 1/2. Either place will make for a long drive.)

I would just like anybodys opinion on either of these options.

Thanks so much for your input.

With smiles,

Babette

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Can't comment on Columbia, but Cleveland is good for diagnosis of any issues. Do a search in the archives. The consensus seems to be, and my experience fits, that they are less good for followup. I also found a certain unwillingness to talk about ans -related issues that weren't specifically hr or bp related. But it was a productive experience for treating my pots/nmh. I'm not cured, but my bp and hr are much more stable. It used to be when I checked, it could be anywhere fromm80/30 to 160/100. Now it always seems to be 110-120/70-80.

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I go to Columbia, MD and was also referred by that same hospital. He was very thorough and and was the first doctor that actually listened to all my concerns and symptoms and took me seriously. He did his own testing and so far I have been pleased with the treatments and visits. It was a choice of Columbia or Minnesota at the Mayo clinic and I don't regret it choosing Columbia at all.

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I go to Columbia, MD and was also referred by that same hospital. He was very thorough and and was the first doctor that actually listened to all my concerns and symptoms and took me seriously. He did his own testing and so far I have been pleased with the treatments and visits. It was a choice of Columbia or Minnesota at the Mayo clinic and I don't regret it choosing Columbia at all.

Thanks so much ptalaura!

I am hoping to find a dr willing to at least listen to my concerns. His office said that a first appointment is 1 1/2 hours long. That's by far longer than any appt. I've had so far. I'm glad you are pleased with your treatments.

Do you live in MD? I am from the "countryside" of Western MD.

Babette

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Babette,

Dr. K in Columbia is my POTS doc. He's great at listening, diagnosing and understanding what you are going through. He's also genuinely interested (unusual to see this in a doctor) and was willing to try and treat me with any medicines I had read about or seen on this forum or elsewhere. To tell you the truth, I am not cured, but I know that there is a doctor who really understands. I've never gone in expecting miracles. So, I'm satisfied. BTW, he's a "migraine" or "headache" specialist in addition to specializing in POTS. My suggestion, if you choose him, is to know what you want from him before the visit.

I have also entertained the notion of going elsewhere, but I already have corroborating evidence of my POTS diagnosis from NIH. So, I KNOW I have POTS. And I haven't gone elsewhere. Unfortunately, NIH stopped doing research on POTS, so NIH was just a one-time visit.

Honestly, it's up to you want you want to do. I'm a Marylander as well. Take care!

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I have appts now at Cleveland Clinic and Columbia, MD both. I can get into Cleveland 2 months sooner than the doctor in Columbia so I don't know what to do or where to go.

Input please.

Thanks,

Babette

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Hi,

I have gone to Cleveland Clinic once to see a neurologist at the ANS clinic. I am going back next week for more testing. If you are coming from further away I think they can work to schedule tests while you are in town. The dr. didn't have my records until I gave them to him on the day of my appointment which led to a delay in him knowing what tests I needed. After testing I was told I can continue to see him semi-regularly or he will communicate with my neurologists here as far as treatment. He does work with may patients with dysautonomia. For the people who go to Cleveland Clinic and do not get much in the way in follow up care, I think it is because they live too far away or possibly that they are dealing with cardiology and not neurology.

Which department are you going to?

I think either is a good option, it all depends on where you are diagnosis symptom wise, and what that particular doctor specializes in or routinely works with.

For many of it it take multiple drs to sift through all of this, so multiple appointments may end up being a good thing, or it can lead to too many cooks in the kitchen- it all depends. :)

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I would first go to the Cleveland Clinic for comprehensive testing if that is first on your agenda. The Columbia doctor is very understanding, a good listener, and very knowledgeable about POTS. I found that things move very slowly in Columbia..i.e., go in, tell your story, hear doc's opinion, and then come back in a few months.

If you are closer to the Eastern Shore, I would see about going to Katherine's doctor.

I was first diagnosed back in 1996 by a DC doc (who no longer is in patient practice, tant pis!) and then confirmed by Mayo Clinic. The rest is history...medicine changes, medicine modifications, medicine tweaking. Now I see a doc at Mayo Jacksonville who is very knowledgeable about POTS and the management difficulties. I see Dr. Grubb about once a year for his input.

Hope my suggestions are useful in making your decision.

Lois

PS At this point, you might want to consider keeping both appointments and then making up your mind -- provided your finances/insurance permit that direction.

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mdcountrygirl, it looks like you have gotten great advice. I would suggest going to both appts as well. But be sure to check with your insurance b/c I was told to make sure that the insurance pays for multiple 'opinions.'

I just got back from an initial appt at the Cleveland Clinic and go back next week for testing. The doc was very thorough and put me at ease since I was nervous!!! My HR and blood pressure was way up. Yikes! (I usually have low blood pressure and high HR) He was very easy to talk to as well.

The only downside to the visit is that I will have to go back 2 times. Once for testing and then again to go over results and treatment. I wonder if they can condense the time if you are coming from out of state?

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4everOptimistic,

Thanks so much for letting me know how your appt. went. Were you already diagnosed with POTS or were you going to Cleveland to get your diagnosis?

Also, if you don't mind me asking, what tests are they scheduling you to have? I already have a POTS diagnosis confirmed by a TTT, but I don't know what type I have. I'm just wondering what all tests they do and if they are to confirm POTS or maybe determine what type and what is causing it.

Thanks so much! Please let me know how your testing goes.

With smiles,

Babette

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Babette,

I was sent to the Cleveland Clinic in order to diagnose the extent and specific type of dysautonomia. My endo had discovered that I suffered from POTS but wanted further testing done. The doctor at CC ordered extensive blood work, including a 3 Hr glucose tolerance test (I currently am diagnosed with insulin resistance and Polycystic Ovarian Syndrome). I will also have a tilt table test, QSART sweat test, and an EMG. They are going to do 3 muscle biopsies on my feet ankles and knee areas as well. Apparently, I have restricted feeling in my toes. I thought they were just cold!!! Eek. After this testing, I will meet with the Dr. to go over the results and discuss further action.

I'll be sure to let you know how it goes and please do the same after your appt!

Lora

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I go to Columbia, MD and was also referred by that same hospital. He was very thorough and and was the first doctor that actually listened to all my concerns and symptoms and took me seriously. He did his own testing and so far I have been pleased with the treatments and visits. It was a choice of Columbia or Minnesota at the Mayo clinic and I don't regret it choosing Columbia at all.

Thanks so much ptalaura!

I am hoping to find a dr willing to at least listen to my concerns. His office said that a first appointment is 1 1/2 hours long. That's by far longer than any appt. I've had so far. I'm glad you are pleased with your treatments.

Do you live in MD? I am from the "countryside" of Western MD.

Babette

Actually I live in DE and travel 2 hours for each way for the appts. but it was a lot closer then Minnesota.

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