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Local Ep Suggests Heart Cath- ???


mkoven
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I just saw my pcp and discussed the issue of my bp dropping from 110/52 to 72/38 DURING, not after exertion. He consulted with the local electrophysiologist who thought I needed a heart catheterization to check the pressures in and structures of my heart vessels.

Not sure how much he knows about ncs or eds. This frankly strikes me as pretty scary and invasive.

Anyone want to weigh in on this? With my fragile eds vessels, allergies to contrast agents, and just the general invasiveness of it all, I"m concerned. Second opinion time or does this sound like the next logical step???

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Why not have a stress echocardiogram first? Catheterization for you, as someone who has many complications of eds, could be more dangerous than for the average autonomically challenged patient. Just my opinion.

Nina

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I guess they figured since I had a normal stress echo 18mos ago, it wouldn't yield much. And the ep wants to measure the pressures inside the various vessels.

I'm kind of freaked and trying to see whatever second opinions I can get.

Nina, you've had a catheterization, right?

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Yes, but it was as part of an experiment/study at NIH, and it wasn't the kind you would have...it was a right heart cath, and I had the pressure and flow of blood within my coronary sinus measured. My flow pressure was quite low...only one patient they'd tested was ever lower than mine. I hadn't had a dx of the collagen defect yet--so I may have been excluded from the study if that were known, especially now that I've had post-surgical complications that included the arterial rupture in my breast last year. Knowing what I know now about my body, I wouldn't do it again just for science--only for a serious, more immediate medical concern.

I guess I would also worry that they might try to ablate you? If you did decide to do the cath, you'd have to be really clear with the team about the purpose and scope of the study.

What about a PET scan of your heart? They can give you a radio isotope that will light up vessels so they can see them. I had this done at NIH too. Took FOREVER inside a scanner (I mean hours, not exaggerating), but perhaps for standard scanning, you wouldn't need to be in so long. PET scanning is still not a standard service, you might have to look around to find a hospital that uses it. There must be a less invasive way for them to get a good look.

Nina

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That's an interesting idea. I just don't know enough about what info they want, and what info the different tests yield. But now I have another test I can ask about. Of course, any type of scan is much preferable! And if I do have to get the test, I want it done by someone used to working with fragile vessels and weird allergic reactions.

I do know that whenever I am upright AND during exertion, I have chest pain/ shortness of breath. And last Friday that correlated with plummeting bp-- down to 72/38 from 110/52 WHILE biking.

It's very disruptive. And now that there's the suggestion that it could be more than my ans, I'm pretty unnerved.

And it doesn't help that my spouse is out of town till Monday. It's a little hard to get my mind off this. My doctor's advice was to avoid doing anything that brings on the symptoms, and lie down as soon as I become symptomatic. That's not helpful! I just went to blockbuster to get some silly movies (to try to get my mind off it), with my seated walker, and I felt pretty bad.

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Sorry you're having such a hard time with the worry about this possible cath test. Just to clarify there are 3 different types of testing that get done by catheterising your heart:

1) Coronary angiography +/- Left ventriculogram - for this test a radio-opaque contrast is injected into the coronary arteries to look for blockages / narrowings such as those seen in ischaemic heart disease. The ventriculogram involves putting a large amount of contrast into the left ventricle and watching as the heart contracts to see how much the ventricle's walls move and how fast the contrast clears from the heart - this often gives people a strong sensation of a "hot flush" for a few seconds. Usually involves access to the left side of the heart via the right femoral artery or radial artery.

2) Electrophysiology study +/- cardiac radiofrequency ablation. This study involves placing electrodes within the heart that measure and map the electrical pathways in the heart, it is used to look for arrhythmias and sometimes if abnormal electrical pathways are found they can be destroyed by ablation. This test does not involve contrast. Usually involves access to the right side of the heart via the right femoral vein or subclavian vein.

3) Cardiac physiology pressure testing (not sure if this test has a more medical name) - this is where a fine catheter is passed into different chambers of the heart and connected to a sensitive piece of equipment that give accurate readings for the pressure within the different chambers and vessels. Often involves access to both sides of the heart via the right femoral artery and vein or sometimes crossing the atrial septum within the heart.

Often tests 1 and 3 are done together. Some electrophysiologists when doing test 2 also do test 1 if they suspect that a rhythm problem may be caused by underlying ischaemic heart disease.

You need to ask your EP doctor exactly what type of test they want to do and explain your problems with EDS and previous contrast reactions - this may influence their decision on what type of test they want to run. At the end of the day it is your body and they can only do tests that you agree to, getting an opinion from another cardiologist before undergoing invasive testing would not be unreasonable.

Flop

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They have the new MRI 64 slice scan of heart (or whatever it's called) that shows more than an invasive procedure.

DEMAND THAT for your second opinion...not risky like cardiac cath. Here is q quick google search link I found

http://www.sciencedirect.com/science?_ob=A...d130e3520e5d607

jmo

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Hi. I think a BP drop during exercise is a symptom of POTS/dysautonomia. I had this on my treadmill stress test. I wouldn't think that you'd necessarily need catheterization or other investigation if you had a positive TTT. Have you discussed this symptom with a POTS specialist?

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Just to clarify what I had done, the catheter was inserted in my great vein (jugular) on the right side of my neck... and I had the small pressure sensitive catheter flop mentions.

Flop, I think Michele cannot tolerate the contrast dye b/c she has life threatening allergies, if I'm remembering right. Can you think of any less invasive tests that might show the docs what they need to see, like the PET scan or 64 slice heart scan?

Nina

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I talked to my ans doc last night and caught her up on what my local docs are suggesting. She is going to talk to her cardiologist colleagues. I guess different tests show different things. A CT would show blockages and structural weirdnesses. But I don't think it can measure pressures in the vessels and chambers. I think that's why a cath is being considered. I don't think ablation is on the table. I've never shown anything other than sinus rhythm, and I'm rarely tachy-- though I feel a difference when my hr is over 85. It's the bp that is strange.

Regardless, I want to make sure that whatever gets done is done by someone who understands my fragile tissues, allergies, and unstable bp-- and preferably has experience working with those-- and has a backup plan if the unexpected/undesired should occur.

I continue to have chest pain whenever I"m up and try to do anything. It subsides when I lie down. It's hard to tell how much is exertion and how much being upright. My agreement with the ans doc last night was that if my symptoms get much worse, change, or cannot be relieved, I have to go in again. So hard to know.

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I'm going to try to get a couple opinions this week on the next step.

In the interim, yesterday I ended up in the ER again with chest pain radiating down my left arm. EKG, cardiac enzymes, xray all normal. I was sent home and urged to follow up with cardio this week. I shoed them my orthostatic drop in bp with standing.

I'm wondering if some of my abnormal bp response during exertion (drop not rise) could be some strange valsalva type response??? Even if what I'm doing is gentle and supposedly aerobic, my body thinks it's a valsalva maneuver???

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Guest tearose

Please, please, please get yourself to a top notch place for a second opinion!!!

There is only one of you and you must take this very seriously.

I personally would only do a heart cath if my life depended upon it and then only in a place with top notch specialists in POTS as well!!!

IF you are inclined to think you must do a heart cath, Please, please, please go to to a ANS center to do it. Then the best of ANS doctors can communicate with you EP cardiologists.

Please!

Keeping you in my meditations.

best regards,

tearose

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Thanks, you guys! I'm trying to get in to see an ep who is familiar with ehlers-danlos. I was able to get an appt for August, but want to see if I can get in sooner. He is the cardiologist on the medical board of the ehlers-danlos national foudnation. He, over email, has told me that he would prefer to do a ct scan first--which is reassuring. Even with the extra radiation, I"d prefer the less invasive scan. If it doesn't yield the info we need, we can go from there.

Given how small and fragile the veins in my arms are, I imagine all my vessels are on the fragile side, and should be handled with extreme care.

My pcp tried to reassure me telling me that a heart cath is a "routine procedure." I then reminded him that I'm not a "routine patient."

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So after many phone calls, i now have two appointments. On Tuesday of next week, I have an appointment with a local doc who wants to catheterize me. It's just an office visit--- but I'll ask lots of questions.

I did manage to get an appointment with an ep in Indiana who has special expertise in ehlers-danlos for next Wednesday. He is going to do a cat scan-- the less invasive approach. And I appreciate his knowledge about eds.

I guess we'll go from there. I really don't know enough about the differences between what a cat scan vs an angiogram can tell. If I have a clean cat scan, does that pretty much rule out a heart problem? If so, why do people still do angiograms, other than the fact that if a problem is found, they're already in there, so they can maybe fix it?

But long story short, I"m set up for two opinions, and one non-invasive test (except there will be a contrast agent that I may be allergic to. But I"m arriving early to get premedicated) with some extra radiation.

In the meantime, I still have chest pain , lightheadedness, and shortness of breath when I'm up and about. I'd like to avoid er trips, as nothing new ever comes. (I was there AGAIN on Saturday. Only documentable test result are bp drops on standing. All other tests are negative.) I guess my rule of thumb is that I can stay away as long as it doesn't get worse or change significantly.

Going to doctors, arranging doctors, and managing worrisome symptoms is really wearing me out. I just want some more nonmedical life back.

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Guest tearose

mkoven, Good to hear you have set up appointments. Try to take it easy till you get more answers. I so understand the frustration that life can seem to revolve around variations of medical themes! Can you listen to a relaxing CD today and just rest, let your mind free of medical concerns and try to visualize something lovely?

My only suggestion as you go to those appointments would be to "buy time" and make your choices without any pressure. These choices are not easy and the consequences can be life changing for better and for worse. Don't rush into any interventions and you won't face any regret afterwards!

best regards,

tearose

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So in addition to the two appointments, I'll definitely get the ct scan on Wed. morning. Because of my allergic history to contrast agents, I'm getting premedicated.

I'll take 50mgs of prednisone the night before, and 50 mgs the morning of plus, 50mgs benadryl.

That's a lot of prednisone, and I hate how prednisone makes me feel, but I guess is the best option at the moment.

Fingers crossed.

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