Angelika_23 Posted January 12, 2008 Report Share Posted January 12, 2008 Hi All!I got a call today from the Cleveland Clinic, and they want me to be there on Monday at 7:30 a.m. I can't believe how fast this is moving! They called and said they knew I have multiple issues (POTS and Chiari) and that they will have to form a team to help me. So I am going Monday for a consultation with a neurosurgeon. I wonder what he will say. So far I have one neurosurgeon saying I need surgery, the other one says I don't. My cardio says he thinks the Chiari is causing the POTS and it will never be controlled until I get the Chiari handled. So this new doctor will be the tie-breaker.Also, I got my 24 hr holter monitor early results back. Mostly sinus tachy. Highest heart rate = 168, lowest heart rate = 53 so they told me my average heart rate is 103. What does that mean, exactly? Wish me luck and some answers too!Angela Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted January 12, 2008 Report Share Posted January 12, 2008 Oh, Angela, I am glad they are getting you in so quickly.Let us hope and pray that means they AT LEAST think you deserve investigating further and attention.I know the whole Chiari deal is VERY COMPLICATED but I hope they give you an answer to CONFIRM what you feel and know in your heart..and hopefully gives another DETAILED opinion regarding what the NEXT step is.Will be thinking of you and looking forward to an update!!P.S. In the meantime, here's looking at you kid, and may the positive thoughts and prayers be felt by you and yours. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted January 12, 2008 Report Share Posted January 12, 2008 They average out the numbers and that's how they come up with 103. The report would say something like...highest rate 168 at ten am, lasting 15 minutes, patient reports no symptoms (or if you had them and wrote them down, that's what they would say) and the lowest rate was 53, lasting one hour 16 minutes at 4 am. They note how many early beats or runs of beats you had and what time. The computer looks at every single beat. Then it adds them up and divides them by however long you had it on and comes up with your average heart rate.Tachycardia of more than one hour in a twenty four hour period is considered abnormal. Good luck at Cleveland! morgan Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 12, 2008 Report Share Posted January 12, 2008 Hooray! Pack your bag and get ready. This is good that you are being seen right away.Of course I wish you much good luck! AND loads of answers!If it helps...when I have had to do the pilgrimage to a place like Mayo and I am all alone and have serious things to figure out, I will listen to what the doctor tells me and then ask if she/he doesn't mind if I sit in the waiting room after I leave. I say, in case I have a follow up question or two, I would like permission to ask before I leave the office. This has been so helpful because we need to process all they are telling us and in case we have forgotten something, we can get things clarified right away!have a safe and productive journey, pack your POTS survival tote and let us know how it goes.best regards,tearose Quote Link to comment Share on other sites More sharing options...
pat57 Posted January 12, 2008 Report Share Posted January 12, 2008 a team of Drs to help you out. That sounds promising! Good luck!!!!! Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted January 12, 2008 Report Share Posted January 12, 2008 Best of luck to you. I'm glad you didn't have to wait too long!Amy Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 13, 2008 Report Share Posted January 13, 2008 Congrats on getting in and so soon! Hope all goes well! Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 14, 2008 Report Share Posted January 14, 2008 Angela,That's great that you can get in so soon! I hope that all goes well and that you'll be able to get some good advice and treatment options. Let us know how it goes!All the best,Rachel Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted January 14, 2008 Author Report Share Posted January 14, 2008 Hey all,Well, my visit wasn't what I expected. I saw a neurosurgeon who took less than ten minutes to tell me I am not a candidate for Chiari surgery, and Chiari isn't causing my POTS. End of story. So I told him, Okay, Chiari isn't the problem, but I am still sick, so I need some help. He suggested I come back to Cincinnati, and I told him we didn't have specialists here that could help me. So he said he'd see what he could do about referring me to a rheumatologist, cardiologist and a neurologist there at Cleveland Clinic. So I get to go back.I was so sick this morning from walking around the clinic... Now I am so tired. I should have gotten a wheelchair I guess. I thought my heart was going to pound out of my chest. I would love to know what my HR was...Well, at least I don't have to have brain surgery. Hoping you are all doing well!Angela Quote Link to comment Share on other sites More sharing options...
morgan617 Posted January 14, 2008 Report Share Posted January 14, 2008 Well, bummer girl!!! All that anticipation for that.... I am sorry and more and more glad I haven't spent money going anywhere just to here in 5 minutes, what i can hear from anyone where I live.....If you go back, I hope it goes better. morgan Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 15, 2008 Report Share Posted January 15, 2008 Ahhh, phooey! Sorry for the need to go back. Happy for the good news that you won't have to do brain surgery!Best to take things easy tonight. You probably overdid the walking around today. Maybe a heart rate monitor will help you slow down a little!!!Sleep well and regroup tomorrow if you can.best regards,tearose Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 15, 2008 Report Share Posted January 15, 2008 Man, I wish it would have went better for you! That has to be beyond frustrating! At least I guess they didn't try to talk you into the surgery, and he said he will try to refer you to other drs. But, to have to make that long drive for all of them! Jeez! Have you ever seen anyone at OSU?I wish you luck! Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted January 15, 2008 Report Share Posted January 15, 2008 OMG! I just saw this update...been really tired myself.I am so sorry you went all the way to Cleveland for that!!! What's the name of that country song from some years back "Did I shave my legs for this?"Well the good news is you got another opinion you don't need brain surgery. Bad news, you still feel like ****.Take a deep breath....and hang in there. Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 15, 2008 Report Share Posted January 15, 2008 Sorry to hear that your visit wasn't what you had hoped. It's hard when you get excited about going to a specialist, only to then not get anywhere as far as testing and treatment. I guess it's good to hear that he doesn't think you need the surgery. I'm sorry that you'll have to make yet another trip there to see yet another doctor. I hope your next trip goes well and that you are sent to a good team of specialists. Keep us posted.Take care,Rachel Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted January 15, 2008 Report Share Posted January 15, 2008 Well, that was lame! Amy Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted January 16, 2008 Author Report Share Posted January 16, 2008 I have my appointments for Cleveland Clinic for next week already. I am to see a rheumatologist and a cardiologist on the same day. Lets hope these appointments go better for me. Thanks,Angela Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 16, 2008 Report Share Posted January 16, 2008 Okay, fingers and toes crossed with wishes for much success this trip.If only we kept track of how much time we spend on just trying to figure out what is going on...it is a full time job!Bring a book on tape maybe? You are at least familiar with the place now. That may be helpful.best regards,tearose Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted January 16, 2008 Report Share Posted January 16, 2008 I also hope things go much better and you are given MORE DETAILS this trip. Goodness but that's a lot of driving....just to see a doctor shrug shoulders.I would take book on tape, a meditational CD,,,,And a bottle of Jack Daniels !!! :P Just kidding...can't really handle booze anymore and never did like JD. Hoping for the best and a full report when you get home. Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted January 16, 2008 Report Share Posted January 16, 2008 You could put the Jack Daniels in a paper bag and sit with it in the waiting room. Suppose that would get you seen more quickly?Thanks for the laugh, Sophia!Amy Quote Link to comment Share on other sites More sharing options...
AJVDK Posted January 16, 2008 Report Share Posted January 16, 2008 Sorry I am just getting to you, I not been around for a few months, but I wanted to wish you luck!Amy Quote Link to comment Share on other sites More sharing options...
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