Surgery Postponed!!

[LaughClown]

I havent posted in awhile cause things have been a bit crazy. I had a visit with my cardio to get the mri results from 3 weeks ago and discuss the timing of my surgery. I went in and he said the mri showed my heart isnt as bad as they thought. He said my aortic regurge was only moderate. Some numbers from the mri-
av annulus- 26.3mm
aortic root- 32mm
ascending aorta- 35.5mm
Regurgitant fraction- 26%
EF- 55.3%!!!! (echo said 45%)
First, it says the lv does appear dilated, but not hypertrophic. Later it says "unfortunately the patient's weight was not recorded... The normal left ventricular end diastolic volume when indexed to BSA is 53 to 112mL/m^2."
Can ayone tell me what that means or if i could calculate what they needed since I do know my weight?
The doc said the echo could have been wrong or that being on nefidipine for the month between tests imporved the heart allready.
Anyways, back to the story. Instead of surgery they said they are going to put me on more meds and take another echo in 6 mon. This took place on the first day of class, so I had to very quickly resign up for classes and get everything in order (hence why I havent posted in awhile)

I have some questions though. One class Im taking is scuba diving and since I am on blood pressure meds I need my doc to sign a waiver. Do I need my card to look at it or will the clinic be able to help me? Also for the class I had to swim 100yrds and when I got out I was shaking, extremely weak feeling, my heart was pounding and my eyes almost felt like they were on the verge of tunnel vision. Part of this is probably because Im out of shape, but they started me on Lisinopril (adding to the nefidipine) and could this be why? I also keep having moments where I feel dizzy and heavy all of a sudden, could this also be related?

My last question (i think), they said they will medicate and put off the surgery until summer or longer. How much will the medication reduce the chance of an aneurism or other possible fatal accident? Will the meds just delay the surgery or possibly make it unneeded or is that impossible to tell? I guess Im just afraid of finding my self in the gray area.
Thanks for all of the advice and sorry for so many questions.

 

[catwoman]

Based on what the swim did to you, I'd be getting a 2nd and maybe even 3rd or 4th consult, even with a surgeon who specializes in the aortic valve.
Do not mistakenly attribute physical reactions to being out of shape, aging, etc., etc. Been there, done that.

Cardiologists tend to take a wait-and-see approach. Surgeons want to repair/replace before the heart has permanent damage.

 

[marky]

If it is any help..
I sought out 2 opinions for my surgery..
the first cardio (mine) seemed to think it would be ok to wait a few months..

the surgeon who performed my surgery said we needed to move within a month..
a second surgeon (works with my cardio) said he could put me on meds and try to limit the symptoms... and help me buy about 6mo or so..
But the ultimate result woudl be the same.
So I figured why wait.. get it done BEFORE I have heart damage and while I was strong enough to recover well.

The surgeon who did the surgery..made it very clear once he was inside and saw the situation.. that a few months would have made me very very sick..possibly killed me.

All that to say.. if the end result is the same.. Surgery... then why wait until you may have other heart damage or issues to deal with?
I hope that you get some concrete answers and some medical advice that will give you peace in making this decision.

 

[MikeHeim]

I've never heard of an MRI overruling an echo in terms of valve function (doesn't mean it can't happen, I just haven't heard of it). I would echo everyone else's thoughts that you need a second opinion - especially if you're having symptoms like the ones you described.

 

[Mary]

We all know that echos can be way off base, so I would ask for a TEE just to be on the safe side.

 

[LaughClown]

Well, I talked to one of my docs on the phone, first to ask if it was ok to scuba dive, and then told her about the episode swimming. She said she would talk to my card to see if scuba was ok (she said it might not be which would suck) and mention the difficulty swimming as well and she would get back to me first thing after the holiday.
The thing is, at the last card visit they asked if I'd had any symptoms and I asked what I would be looking for and they just said if i had any I would know. I asked again and they said the same thing. The thing is, i havent had a regular exercise regimen for a long time and so its hard to link specific activities before and after and so I have to go with general feel and effects of the various activities I do, and lately I have been feeling dizzy, weak, and shaky after hard workouts but I have always attributed those as side effects to a medication Ive been on for about a year and a half (actually I had similar but less intense sideeffects when I started then started coming back about 6-7 months ago.) This med is effected by diet, and mine is never constant so I fgiured that was it.
What I can say is that the past 4-5 I have felt dizzy more often (I would get almost a vertigo feeling for a few seconds very frequently when I was at work) i feel much weaker after strenuous exercise and my heart pounds very hard. Last night I decided to run the last quarter mile home from my friends apartment and trying to go up the stairs my legs felt like lead and i felt really sick and had to lay down as soon as I got to my room. I was really shaky and sweaty for at least an hour.
I really pushed myself on this run (sprint almost) just to see and its not that far, but affected me a lot more than I thought it would. I think Im finally accepting maybe what Ive been feeling for the past little while wasnt my medication.
And now Im in the semester and it would probably be easier if i waited for winter break. Right now Im not scheduled for an echo until march i think, so maybe this will just step things up.
Thanks for letting me vent. I have a tendency to rant cause Im sure my friends are sick of hearing about this stuff and my parents always seem to down play it all so this is a nice place to get my worries out.

 

[pipersmith]

You have symptoms!

You have symptoms!

I am a bit new here - but may I echo what others have said - GET A 2ND OPINION.
I put off seeking assistance from a physician for so long, telling myself that I was just out of shape. You become gradually used to dealing with a heavy heart beat or shortness of breath - so it does not seem out of the ordinary - but often IT IS. You should not feel dizzy so often - it is not normal - it is a symptom. That is my most frequent symptom.I personally would skip the scuba classes right now - I think your body is talking to you. You can always take them later - better to deal with your heart first!
My numbers from my ECHO and TEE look good, but my cardio is still sending me to a surgeon because of my symptoms. Some of which sound similar to yours.
If you get a few opinions, and they decide to wait - you have lost nothing. If you get a couple that say - you need to deal with this now - it may save your health - or your life.
Just my 2cents!
Good luck!

 

[LaughClown]

Ok, first my docs said its best not to scuba right now, since they are going to be bringing my blood pressure down and they dont want the effects of the water to make me pass out. Bummer but that stuff can wait.
Ok, Ive been looking into second opinions. Ive been thinking maybe the congenital card surgeons that they were considering before. Both are in my insurance I believe (in Primary childrens hospital next to my card). Should I wait for my appt next week and call them before so I can get video of the echo, etc or would they send all of that? Should I be looking for cards intead of surgeons?
Yeah, my doc gave me no physical restrictions, so Ive been trying some short running with my usual walks (I hate running and the walks recreational, but hey its healthy). I had walked 4-5 blocks and jogged up a hill maybe 3 blocks when I came to a grocery store. I was absolutely exhausted from the jog allready and thought it was a good opportunity to see my blood pressure when exercising. I sat at the bpcuff with my heart litterally pounding and while it was testing I could feel my brachial artery under the cuff starting to sting from the pressure and the results were 187/71 with bpm of 131. I tested twice again I could feel my body relaxing a little and tested 154/69 twice ten minutes apart. Usually my left is 125 and my right is 145, though my left had tested 145 a couple of times. But 187 seems extremely high, could this have been from me shaking and messing up the machine? Should I be limiting my activities?
Sorry for the long story, and thanks for all of the repies so far. I would have gone insane if it werent for this site, Im too inquisitive of a person.

 

[ALCapshaw2]

First, you ARE symptomatic so stop trying to kid yourself.
With Aortic Valve issues, overworking your heart CAN result in Sudden Death. It's best to limit your exercise to walking at a moderate pace until you get fixed unless your CARDIO or SURGEON give you an OK for more vigorous exercise.

Second, you need to get your second opinion(s) from SURGEONS who are experienced in your issues.

If you wait Too Long, your heart muscles / walls can suffer PERMANENT IRREVERSIBLE DAMAGE.

Surgeons like to operate BEFORE you reach that stage.

Cardiologists (old thinking) preferred to wait until you were very symptomatic before recommending surgery, often resulting in a prolonged recovery and possible permanent damage. They are finally recognizing that this is counterproductive. Medicating only prolongs the inevitable. SURGERY is the ONLY CURE.

'AL Capshaw'

 

[xbxb]

Get opinion soon

Get opinion soon

FYI - I agree with AL - but maybe my experience will offer you some guidance.
I had my BAV (tissue saving repair and root replacement) repaired a year ago.
I was in very good physical shape (played basketball 2-4 times a week) and then started getting short of breath(over an 8 week period), at age 42. I had yearly echos.
A month before my surgery my symptons got so bad I checked myself in to the emergency room.
Even my echo I had at that time DID NOT show much leakage - yet I had all the symptons. I remember my chest pounding - under light excersion and then my heart revving (chest pounding)- like an engine in Neutral, but not going any where as my symptons worsened.
Not until I had my cardiac cath and then TEE was great leakage confirmed.
Scuba is definately out(my Dr.s did not want it before my surgery) though now that I am fixed they have said it is OK - but they would stay away from deep dives.
Also I would try to get in shape - I had a tougher time than many with the surgery - but being in shape helped. The hope was that they "caught it in time" and that my enlarged heart would get closer to normal - which appears to be happening with my current exercise program - 4-5 times a week.
I would tell you get 2nd opinions and don't wait- get confirmation, echos can be very difficult to read - one of mine was - if you need surgery sooner is better - probability of less damage. Hope this info is helpful
Good Luck.

 

[LaughClown]

Well, I have an appointment with Dr. Karwande, a cardiothoracic surgeon at my cards hospital. He was one of the surgeons originally reccomended by my doc over the summer. We'll see what he says. Its a week from tomorrow and Im hoping he'll look at my test results before the appt so I dont go, leave ten minutes later and have to wait two weeks to hear a response. Oh well, we'll see I guess.
Thanks for the advice and all the pushing and prodding everyone, too. Its one of those things I knew I should do, but it was easier to not deal with with everything else going on. Thanks again.

 

[LaughClown]

Well, something somewhat unexpected happened today. I tried to donate blood today at my university (my card said it was ok). I was denied but not for the reason I thought it would be. I couldnt because my diastolic pressure was too low. Their cut off is 50 and the two times they tested me I was 124/40 and 130/42. Its strange because in the past my diastolic was always around 70. Historically my numbers were usually around 145/70. The weird thing is, I have been on a low dose of my medications, and I have an apt with my doc to RAISE them tomorrow. 130 is better, but I know they wanted to push my systolic as low as possible, at least 120, and Im guessing this will complicate things. It seems it will be much harder to give medication therapy with a diastolic that low. Guess its another thing to bring up to the surgeon next week. But if he agrees with my card, how do they usually proceed with these things?
You know, it didnt completely surprise me though. The past couple days Ive felt alot more light-headed and yesterday it felt like my heart was pounding, like palpitations all day (exhausting in a way) but maybe its because my diastolic is so low low and my systolic high.
The weirdness continues. But I feel like I got alot accomplished yesterday and Im feeling on the brighter side.
Thanks again everyone.