Tilt Table And Eds Risk?

[mkoven]

Hi everyone, I'm scheduled to see Janice Gilden on 1/22 for the first time. Her receptionist told me to be prepared for a day of testing. Not sure what to expect. Locally I've had: standard bloodwork, ekg, dobutamine stress echo, event monitor. Any guesses what would be in the workup for ncs?

My real concern is about a tilt table test. The local ep didn't think one was necessary back when he first saw me in 9/06, as my symptoms and triggers fit ncs. Plus, I am incapable of standing still and not moving without severe joint pain for more than a couple minutes. I am constantly squirming to keep my hips and pelvis aligned and can only do so if allowed to move. but then this ep is no longer really following me, and we need a new plan.

I really hope I'm not pushed to do something that could cause more joint pain-- and possibly damage, as things rip for me if they slide out of place and I'm not in a position to squirm them into place again asap. This I sadly know from experience. If you put your hand over any joint in my pelvis, low back, or hips, you can feel all sorts of sloshing and sliding. I'm really not exaggerating.

Plus, I just read on ednf (the ehlers danlos national foundation website) that people with eds, any type, have a higher risk of coding during a tilt table test--per Nazli McDonnell on her connective tissue study. Anyone know about this?

Of course I want as much information as possible, but am really afraid of getting pushed into a tilt table test. I'll give as much blood as anyone wants, I'll give urine, saliva, I'll get zapped, whatever--but please no more (avoidable) joint injuries and other unnecessary risks.

[pat57]

my understanding is that the risk of death is only if they don't "tilt down" and basically have you unattended and just the wrong moment.

you cannot squirm and move during TTT. It effects the test. Neverthe less- don't take my word on these things!

wishing you the best

[Mrs. Burschman]

That sounds to me like a reasonable reason to not want a TTT. Nobody can force you to do a test. I'd just explain to her like you explained to us.

Amy

[sally]

Hi we've had tilt table testing and have EDS. It didn't seem to aggravate our joints while having it done although after the testing was over we did feel achy and felt bad for a day or so but I think that was from the drop in pressure etc and not EDS. of course that is us, so you may want to voice your concerns with the person is to give the test to you if you haven't already done so, just to be sure they understand what you are dealing with and they are aware. Not to mention if you are tightening up things on your body such as your legs etc, it can affect your test results. and you're not suppose to move around during the test.

good luck on your test.

[Ernie]

Hi,

You can always refuse the TTT since you already have the diagnosis or ask to be put down as soon as your BP drops low enough to give the diagnosis.

When I did my TTTs I slided behind the 3 straps and fell on the floor. The doctors had never seen that in 25 years.

[ajw4790]

Wow, I think those straps needed to be tighter... That should never be able to happen! Scary. Hope it didn't cause more harm then good.

[Ernie]

Hi,

That's what the doctor thought, that the straps were too loose. So the following TTT they put the straps so tight that I could not open my rib cage to breath. I fainted much faster and still slided behind the straps. That time I did not hit the floor because they expected me to slide so they caught me just before I hit the floor. They were really concern about my safety has I had an arterial line and I could have bleed to death in a few second if the artery ripped with the strap.

So on all the other TTTs the put 12 extra sticky bands. I was like a mummy, glued to the TTT. Good thing that it was not my first TTT because I would have freaked out! Plus there was another extra doctor ready to catch me when I fainted. Only my head could move. I was so afraid to break my nose on this doctor's shoulder or that they would not notice that I was unconscious since I was strapped so tight that I would not move when I fainted. But they did realise it when I fainted and put me down. It was a long process to take all the bandages out because the glue was messy.

[flop]

Hi,

I'd talk to the doctor about your concerns - you should be able to come up with a plan for tests together that will give useful information without worsening your health.

Personally I get really bad back ache if I stand totally still so during both my tilt tests I was wriggling about a bit and shifting my weight from leg to leg and adjusting my position. During the second tilt I got really uncomfortable and actually asked the technician to take my shoes off me so that I could be more comfy - she was rather suprised at the request but did as I asked.

The reason they want you to be as still as possible is that contracting your leg muscles will help to pump blood back up from your feet and could reduce the chances of a positive test. However in my case my heart rate went from 60 to 170 both times despite the wriggling.

Good luck for the appointment and tests,

Flop