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About my trip to the Cleveland Clinic


Guest Julia59
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Guest Julia59

Hi everyone!

My Cleveland Clinic trip was a success. The doctor took me very seriously, and it worked out very well, as she was able to coordinate my care with a Neurosurgeon in two weeks. Otherwise it would have taken months. She called him while I was there in the spine center, and he sqeezed me in for Oct. 24th------7am though----ugggg. We will have to go to Cleveland and spend the night there----or we would have to leave Toledo at 4:00am----which means we would have to get up at 3:00am---------------------------- :unsure:

It turns out they know quite a lot about POTS, and they are also going to coordinate some POTS therapy for the same day on the 24th. They had a conference on POTS therapy just the week before I went there. I will tell you more about this when I go there and see what it's all about. I was quite amazed at the care I received. The doctor was amazed with my flexability---EDS----and couldn't believe I could be that flexable with such a bad back. I explained that the EDS could be the REASON I have a bad back.

You can literally put my legs behind my back---AND PULL THEM DOWN----or you can fold me in half-----. She kept asking me when she should stop, and I kept telling her to keep going. It was easier for me to have her push/pull at my legs because it hurt my upper back to do it myself. The flexability is a curse as it only makes things more unstable at my neck and cranium area--actually my whole spine is affected----no fun----no fun at all. I still hold a little caution as I don't know what her notes will say about me, but I will get a copy of them from Dr. Grubb, because they will be faxed to him next week.

She was also amazed with my medical terminology knowledge (trust me ---I have a long way to go-- ;) ). I explained to the nurse that I took classes on that, and that I also looked up a lot of research for the support group----which does not necessarily mean I know what it always means----but I try-------- ;) I didn't want them to think I spend all day looking into the web looking for diseases----and then manufacturing in my mind that I have them.

I asked her if the NSG looks "OUTSIDE THE BOX". She smiled and said it takes a long time to get into see him because he does look "OUTSIDE THE BOX".

The trip home was interesting. We went to my husband's sister's house in Sandusky---halfway between Cleveland and Toledo. Sandusky is home of Ceder Point----One of the Worlds largest amuzement parks----and has the most rollar coasters. Anyway, we visited with his sister Linda, and the two boys 7 and 5 years old----we had a blast with the boys (Nicholis and Nathanial). Then her hubby Patrick came home and we went to the Country Club.

We weren't to sure of that as we are not the type----but neither is Patrick and Linda. It wasn't a snobby club, more like a family Club. We ate dinner and enjoyed the company of his Grandma and Grandpa and her two sisters. Grandpa is 99, and Grandma is 90 something, and her two sisters are 82 and 79. The sisters were a riot drinking their martini's----and grandpa had a whisky sour. They talked about where they were born---(Cuba) and how wonderful the US was. They love to travel, and they talked about how cold Russia was and how expensive the restaurents were in France. Then they said they didn't get to see the Leaning Tower of Pisa in Italy as it no longer leans----so they saw the Tower of Pisa.

Unfortunately I was wiped out----but I hung in there because the company was so good. Finally we had to leave. I was feeling really shakey. Patrick is a doctor and for some reason, I don't want him to see me like that----I get real embarrassed----more so then with the rest of the family. I don't really understand why----I just do----so I got the heck out of dodge when I started shaking. All the way home from Sandusky I shook, burped, gagged and of course the tachycardia. I hate that-----I have said this before----but to me that is the worse part of POTS-----I can deal with the rest----PAIN and all................ B)

I'll end this long post and let your eyes rest-----thanks for reading.........

Julie :0)

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Julie..

I am so glad that the cleveland doc was good with you!! I bet you got longer then 15 minutes.. huh??? LOL! (sorry gotta joke about that...LOL)

I am so glad that you have some knowledgeable people helping you... and that they are taking you seriously.. that is great!!

And also wonderful that you are able to get in so soon w/ the other doc... way cool...

Glad you were able to meet up w/family...its nice to do something normal...even if you pay for it later...

hugs to you

Linda

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Hi Julie,

I am really glad that your doctor's visit was a success!!! What a change to meet a doc who listens, knows a lot about POTS AND is nice!!!

I'm also glad that you enjoyed your family visit. And I can understand that you don't want "the doctor" to see you do bad. Although I can't explain why. I have a doc among my acquatainces and I don't want him to see me when I'm having POTSspells. Maybe I'm afraid that someone might think I'm asking for his attention??? Anyway, Sandusky seems to be a healthy environment, considering the ages of grandma and grandpa and the sisters :unsure: . I go look on the map!!!

Corina ;)

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I'm glad you had a good visit and the doctors were good. Good luck on the next visit. Keep us posted.

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Julie,

I sometimes find that when I think I can't hold on any longer or that when things just seem to be going wrong (one thing after another)...something to remind me that things WILL get better comes right at the PERFECT time...

This is exactly what happened for you and THANK GOODNESS! You really needed a good appt. and to feel well-taken care of by the docs...

I hope this is the beginning of more good things! :unsure:

Emily

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Julia

I'm glad that you had such a good experience there and it was worth your time. Thanks for the update too as I was under the impression that many were unhappy with the Cleveland Clinic. I hope you get some of the help that you need to manage your symptoms better, please keep us posted on your next appt.

I'm glad that you were able to enjoy an evening with family ;) But I know what you mean about not wanting people to see you how you are when ill. It's taken me a few years but I do better with the tachycardia and most of the arrhythmias especially with the aid of a Beta Blocker.

There was a time when I could handle just about anything and my only 2 downfalls were ongoing sore throats and stomach aches. I found out that the sore throats were GERD and after they started me on medication that was the end of that. I think I have a problem dealing with stomach pain because I've had 6 kids and can't take that horrible pain anymore :unsure:

Anyway, take care

steph

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Guest Julia59

Thanks everyone for your replies and support!

Corina----actually---the ladies were visiting from Florida------ ;)

They were born in Cuba.

The nurse from the Cleveland Clinic---(spine center) will call me this week to let me know if they were able to coordinate the PT for POTs on the same day as the NSG appointment.

I am not looking forward to the traveling---but it's only two hours, so I can't complain. The problem is that we have to spend the night in Cleveland, and i'm having a rough time with hyper adrengic spells. When I have those i'm never in my right mind---meaning that my thinking is altered---and I get panicky. My husband is the only one who has ever seen this---maybe my dad--once.

Tomorrow I get to go to the dentist!---YAY------------------NOT------------- B)

Teeth cleaning---and I hope that's all. My teeth are always shifting, and now one of my crowns is not fitting right and stuff gets under it. I floss all the time----so it never stays in there. I am so paranoid about my teeth----uggg

Here is a link about the NSG I will be seeing at the cleveland clinic....

http://www.spineuniverse.com/1p/aans/benzel.html

For now---i'm just hanging in there----let's pray for no dental problems---- ;)

Thanks again! :):):D:D

Julie :0)

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Glad you trip when well. I hope they get to the bottom of everything for you. Its noce to here all the good things about going I am leaving in 7 days to go for my appointment. I am getting worried, and uptight, but it was nice to here about how well yours went. You will have to let us know how it goes on the 24th. Hope you are feeling better now, after the long drive and feeling bad! hvae a great week! ;)

Amy

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julie -

i'm so glad to hear that your appointment went as well as it did, that you were able to spend time with family, and that you have a plan moving forward (at least short-term). we were crossing on the turnpike this week as i was in t-town on monday & you were here in cleve on friday...one of these days we'll actually connect!

keep on hangin in there!

;) melissa

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