I just totally chickened out at the clinic where I was supposed to get my MRI!! I just couldn't make myself do it, I tried, but I felt like I was in a coffin. Now I'm beating myself up b/c I KNOW I have to get this done, I just can't make myself do it!!! Are there any other tests that can detect ARVD? Thats what they are looking for, please share your stories with me!!!! Thank you, Kim
Many MANY people have problems with MRIs. THere are several things that you can do to make it through. You can request information about the closest OPEN MRI center around you. These machines do not encompass the body and they give you a feeling of escapability so that you don't get the nasty claustrophobia that the normal machine can cause in the most normal of circumstances. Also, many people request and are given sedatives (happy pills) to get them through the procedure.
I've had an MRI done twice. I made it through both times only because of sheer willpower. I HATE that machine and don't blame anyone who needs something to take the edge off.
I can relate. I had one MRI. The purpose was definitely to check for an abnormality with my right ventricle, but can't remember the specific acronym for it. I didn't know you could take sedatives. Of course the problem with that is, if you're going to take sedatives, you probably need a ride home. Anyway, I was in that machine for over an hour. The only way I got through it was by meditating. I thought of peaceful things I enjoyed doing, and pictured myself doing those things. For example, I envisioned myself snorkeling with my husband in Hawaii and the Carribean, and holding my little girls and talking to them (not out loud, but in my mind). I kept my eyes closed the whole time. The couple of times I opened them I almost freaked out due to the clausterphobic, coffin-like atmosphere you described. I just shut them right away and forced my mind on peaceful, relaxing thoughts and breathing exercises. Maybe that sounds kind of hippy, but it works so I like it. Good luck!
I had an MRI for my shoulder. I was apprehensive about having the contrast material injected deep into the joint with a very long needle. That turned out to be nothing. Totally painless.
Then, it is a bit unnerving at first to have to think about going head first into the small space. Not too bad in reality though if you just let it happen. I have had commercial airplane rides that are more unnerving than this. Just relax or try to catch up on some Z's. If you pick the right place, you have your choice of tunes.
(1) Some sites will put you in the machine in reverse - ie - your head will be out in the clear and your body will be inside the MRI tube - the pictures are no different either way of shooting - maybe ask if the clinic is willing to do that (the hospital near me did that for me no problem).
(2) Johns Hopkins is running a clinical trial for ARVD and, as a result, has some great specialists.
(3) There's a slightly old task force set of recs for diagnosing ARVD based on several major and minor criteria that are determined through several tests (1) ekg (2) signal avergaed ekg (3) echo (4) cardiac mri (5) angiography (6) holter - I may have missed an item or two but you look up task force ARVD on google you'll almost certainly find it. The sheer number of tests speaks to the "trickiness" of diagnosing the disease while a patient is still alive. I have heard that an updated protocol may be in the works in the next couple of years (hearsay tho) but in the meantime, if i were you, I'd bite the bullet and get the MRI (preferably at a facility you know has interpretive experience with ARVD) and, if you're on the east coast anywhere near Baltimore, make an appt with a cardio at Hopkins who's involved in their ARVD research. As far as narrowing the number of tests - I do know that Hopkins somewhat recently published research on newly identified ekg irregularities in ARVD patients involving the S-wave. The s-wave finding combined with T wave inversion, episilon waves and certain QRS equations (determinable from the ratio of certain QRS values found on the 12 lead ekg) offer a pretty solid first line of defense for investigating ARVD both in terms of sensitivity and specificity. The ekg needs to be done in a special way to maximize the yield for determing ARVD but it is non invasive and is becoming a stronger tool as new research comes to light.
In case you're wondering, I am in no way affiliated with Hopkins but am considering making the 5 hour drive there myself to get an ARVD consult. Best of luck.
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