ablation in ehlers danlos for cardiac arrythmia

[catrinasanford]

I had an ablation a few months ago which they burned my av node out to correct my svt,vt,paroxsmal v-fib, pvc's... I have ehlers danlos syndrome as well. two weeks ago my ekg showed normal. but i went back a couple of days ago and the lady kept rerunning my ekg 6 times total and it kept saying (septal t wave changes are non specific) and( poor r wave progression) ? with a resting pulse rate of `138. i'm a 29 yr old female and i thought i was out of the water. when the nurse practitioner saw me, she said your heart is normal and everything looks good. i never got to see the doctor.  but i somehow feel, she is wrong and have been waiting for the doctor to hopefully call me explaining it to me. he still hasnt called. my ekg was the same every time the woman ran it. in the past they always re ran it when something was wrong and long before i had the surgery, one time they ran it four times, the doctor looked at me and said 'we are gonna have to keep a closer eye on you until we can get your surgery done" so is there or isnt there something wrong. im tired alot and kinds short of breath easier but i just went through hip surgery and figured it was lack of movement. just kinda worried and cant get an answer

[MichelleP_3811]

I am so glad to hear back from you and that things have turned around a bit.  I do hope they just keep getting better for you.  Take care and stay strong.  Best of luck with your hip.

[catrinasanford]

update: this year I had another hip surgery , osteotomy , and my heart is still messing up but not too bad at least. my rheumatologist discovered some orthostasis . I've never had a tilit table teat done so that might be helpful. anyways I FINALLY was approved for SSDI so I took the money and paid my old medical debts off. talk about a relief but of course I have to pay my new surgery bills but at least I've cleaned my credit up some. I am 3months out from my hip surgery and so far no dislocations just some slight pain. I have to have the hardware removed next may and them we will try and do the other hip....maybe lol that was a rough surgery.

[MichelleP_3811]

Oh my God Catrina.  ((((HUGS))))  I am so sorry about all this.  Do you have someone you can talk to.  I am not a therapist but I know that all you are having to deal with can take its toll on someone.  There is a forum here for Post Traumatic Stress and Depression.  Maybe you can get some help there to work though learning how to deal with your illnesses and all life is throwing at you.  You are welcome to pm me but please call someone before quitting.  My heart goes out to you.  Sending thoughts your way that things get better right quick.
Michelle

[catrinasanford]

Thanks, i got back from the heart doctor today, my ekg was abnormal again. they are doing blood test. they are thinking av block so they put me back on the monitor and i go back in two months. i am soo tired. and as far as ehlers danlos, this can happen. it has effected all of me. i had two failed hip surgeries last year and i have another one scheduled in may by one of americas top hip specialist and he said it still might not fix my hip dysplasia. ehlers danlos stinks. i go see my rheumatologist this month and i'll update him on all this. it would be nice if for once i was approved for disability. so far i been denied 7 times :( my doctors are at a lost as to why. and this past sunday my house burned . things just never seem to go right. i'm ready to call it quits

[DeltaDawn23]

Michelle is right -- you deserve to have your condition explained to you.  You are the one who is paying for the medical care and living with the outcome.  You can always get a second opinion.  Sometimes you have to be a squeaky wheel to get any attention.  You are not asking for something unreasonable.  Good luck to you.

[MichelleP_3811]

I would assume if it was afib or vfib they would have spotted the issue on an ekg.  So it likley just looks like sinus tachycardia but without an EP study it can be really tough to say where it is originating from which is probably why the hospital didn't know what to do for you.  That said, are you seeing someone about your ehlers danlos?  It almost seems to me a progression of this disease could be part of the problem?  I would say if you are not getting an adequate response from your cardiologist, meaning if you have expressed your difficulty coping and they are not responding appropriately to your concern, then it might be time to find a new doctor.  You deserve to be taken seriously and with your condition you might want to find a doctor who can work with your doctor who is treating you for the ehlers.  In the miniumum I might also go see your ehlers doctor and find out if there can be a connection with the disease to what is going on with your heart.  I do hope you can find some answers soon.  A 165 resting rate has got to be exhausting.  Stay strong and be your own best advocate.  Take care and feel better soonl

[catrinasanford]

well, an update i was hospitalizedin december 2011 for my heart they didnt know what was wrong. idiots i swear, so i have to wait until feb 8th to see my heart doctor. my resting rate stays around 165 then it would shoot up then go down  to 40 the nurses kept running in there asking if i was ok. I am so fed up and why do i have to wait two months to see the doctor. I really dont think he understands all the issues i am having. poor comunication.

[merileegal]

bbxx is right, 138 is too high not normal. No wonder you're tired with your heart workings as hard as it is at that rate. I hate to think what your rate is when you're moving around. I would insist on seeing a real doctor, not a nurse practitioner. You need to get some answers.

[bbxx]

I just looked up poor r-wave progression and here is the link for you
http://www.medhelp.org/posts/Heart-Rhythm/Poor-R-Wave-Progression/show/391395

[bbxx]

Wait, resting hr of 138? That is not normal. I dont want to scare you, but that is too high.

[bbxx]

Hi there. Sorry you are having such a terrible time. I dont have the answers you are looking for, but I wanted to encourage you that someone should reply sooner or later. You may want to ask in the doctors forum.