BAVD afterall????

[BAV Pt's daughter]

Well, the doctor called today. He took some time to look at my MRI films himself, since I do have the murmur. He said they took a very poor quality MRI, doesn't know why they let me off the table without trying again. Anyway, he says that it looks like 2 leaflets are fusing together--there's a good chance I have BAVD also. He will need a better study, but said the flow through the valve is wonderful right now, very little backflow, so I can wait up to a year to retest. But we're going tomorrow for mom's follow-up CT, so I am going to ask them if they'll try again with no charge since they didnt get a good picture. I thought I was gonna just be an onlooker here and not join the club, but I may not get out quite that easily. Will keep you updated.

 

[OldManEmu]

You share many things with your mother however I am sure that you would rather not be sharing BAVD. This must have come as a shock after being advised earlier that you were clear of it. I certainly wouldn?t want to be charged a second time for another MRI when they couldn?t do it properly in the first instance, their mistake shouldn?t turn into your expense! At least the valve is functioning well at present and you can now take the normal precautions with a BAVD until the doubt it is resolved.

 

[Phyllis]

So sorry to hear this Angela after all your good news of late. I would definitely press for a second MRI for free and we hope that all turns out well for you.

 

[Marguerite53]

they owe you

they owe you

Hi Angela. Sorry your news puts you into our "club", but at least you found us first!!

I would absolutely insist on a redo of the MRI. They cost a fortune!! How can they get by sending an inconclusive report to the cardiologist?? Why would you want to live a year and not know what you were entitled to find out from a costly and time consuming procedure? I'm sure your cardiologist will stand behind you since he made that comment. There is no excuse for this, and the hospital or clinic should know about it! Please call and speak with the general manager of the hospital if you need to, and tell them what happened. You don't even have to be threatening. Mistakes and sub standard reports are threatening enough to a hospital. What if they missed something dangerous on you or someone else??

Please keep us posted on this. You are important! Stick up for yourself!

Marguerite

 

[aussigal]

MMM...so sorry sweetie Big HUGS,,,

but hey!,,you are already our lil expert nurse so youre practically fixed before yours ever gets like ours.

I have a re-scanning of my 3 sons too and am hoping the one who missed it still misses it but well i will not un-cross my fingers til i get the official-word.

 

[Curtsmum]

So sorry to hear this Angela after all your good news of late. I would definitely press for a second MRI for free and we hope that all turns out well for you.

I agree, best of luck.

 

[Paula]

Hi Angela,
I sent you a PM. Hope all turns out for the best.

 

[BAV Pt's daughter]

Rescanned

Rescanned

Well, I did convince them to rescan me after MUCH convincing. They said they were happy with the scans they had, so I had them call Dr Raissi for his opinion, since he ordered it, I paid for it, and we still didnt have all the answers. Though the doc was OK to wait, he went ahead and told them they must rescan the valve shots at least, so they did (much to their dismay, oh well).
And the news is...
Still shows that two cusps are fusing together (maybe about 1/4 of the way only), and mild aortic insufficiency, which no one had told me about. Dr Raissi will look for himself this evening and call me. He was not at all concerned with the slight insufficiency, says its not enough to be concerned about, hardly any more than the average person. The radiologist, however, was very apologetic and even took the time to show me my films and give me his professional opinion immediately (I suppose this was his apology to me). No offense, guys, but this is a club I was hoping to avoid. But from the looks of it, I am on my way in. Next year brings another scan to hopefully give us an idea of how quickly it is fusing. The flow through the valve is 99% normal, though, so I am in no danger. I didnt think to ask if I have to take prophylactic antibiotics (such as with dental work) or not, though. I am not sure what modifications I need to take. Thanks for all the advice and support. You guys gave me a little more backbone to go in with to make sure they rescanned me. Also, they said for some reason they will never get a completely clear scan of my heart b/c it "bounces around so much in the chest cavity." Maybe that has something to do with the fact that I am so tiny? (5'5", 105 pounds) Maybe my pericardial sac/fluid dont provide as much shock absorption as most peoples' due to every part of me being so tiny? Thanks again everyone!!! You are all super!!!!!!!!!!!!!!!!!!!!!!!

 

[Phyllis]

Glad you were able to get a free redo and it doesn't sound too bad yet. Just sorry that it had to be at all. We love you, but we hate to see you in our waiting room.

 

[tobagotwo]

Is it that you have three leaflets and two of them are beginning to fuse together, or that you have just two leaflets, and they are beginning to fuse (BAV)? Or do you have three, but two never quite separated all the way?

BAV diagnosis is still up in the air for you. Where you seem to stand, with mild regurgitation, is dang nigh normal, which is wonderful. If you do wind up eventually needing surgery, it will be many years for you. Good!

I would absolutely ask about the pre-intrusive-procedure antibiotics. While you are fortunately a long way from needing attention, it might be a reasonable prophylactic to avoid endocarditis.

Very best wishes,

 

[Marguerite53]

good job!!

good job!!

Way to go Angela! Good work. Definitely a disappointment, but like someone said, you may never need any work done, who knows! Please do not see a dentist without antibiotic. Just silly to risk it. Your dentist ususally asks for a health update every time you visit anyway, and he can prescribe something. Ususally a double dose one hour before the visit. At least for me.

Recently in a Time or Newsweek article on the Heart, they mentioned the difficulty with taking images of a moving heart. Now they have developed a machine which takes photos in slices, pieces them back together, miraculously somehow, and gets a more accurate read. They are not yet available in most locations, but something we can all look forward to in the future. Accuracy without incision -- yes!

Good luck and keep us posted.

Marguerite

 

[BAV Pt's daughter]

Is it that you have three leaflets and two of them are beginning to fuse together, or that you have just two leaflets, and they are beginning to fuse (BAV)? Or do you have three, but two never quite separated all the way?....

I have three valves, but two of them are fusing. (Can they tell the difference between that and never having separated?) Dr Raissi is wanting to watch it in a year, as he wants to see how far the fusion will progress over time. I am to call him at 6pm this evening (LA time) to discuss his interpretation of the new films. Will keep you updated as soon as I know more.
My resting heart rate is almost always over 100-110 (BP is ok). I wonder if they should try to keep that down a bit or if its not yet time to even worry about that.

 

[BAV Pt's daughter]

Recently in a Time or Newsweek article on the Heart, they mentioned the difficulty with taking images of a moving heart. Now they have developed a machine which takes photos in slices, pieces them back together, miraculously somehow, and gets a more accurate read. They are not yet available in most locations, but something we can all look forward to in the future. Accuracy without incision -- yes!

yes, momma had one of those "64-slice CT angiograms", if that's what youre talking about. We got to look at the pictures, it was very impressive.

www.westsidemedimaging.com is the link for where we went, they may have good pics of it if you wanna try it out.

 

[Natanni]

Hi Angela

Hi Angela

We are kind of new to VR.com but I have been lurking through your Mom's surgery

My husband had AVR Sept 29th 2005 for a bicuspid valve at 34 years old. He had a tricuspid with 2 of those leaflets fused. They said it was this way from birth. I wanted to say hello! Watching you go through your Mom's surgerry was very much like going through my husbands. I am a nurse as well and it gave me a rather interesting perspective going through this OHS of a loved one. Lots of "Let me help you with that....Can I help you with this? Wasn't I suppose to get him up in the chair? What is this? How much is? How often? etc"

Our daughter (9 yrs old) is going to be having an echo shortly (want the memory of her Dad's surgery to fade a bit) as she was found to have a murmur after Nathan's Mayo docs encouraged us to have our kids evaluated again. They feel that where one BAV turns up in a family, usually several more will surface if investigated. Until we get echos, and even if benign, I will ask that our daughter still be treated prof. w/antibiotics. Nathan began having annual echos at the University of Minnestoa/Fairview in 1997, and they would flip/flop between bicuspid and tricuspid. Since that time, Nathan always, always took AMOX 500 X4 prior to dental work and teeth cleanings, and yet came up with endocarditis this past July. So in my opnion, can't hurt to be overly cautious in this area....

Nathan's systolic and dystolic margins got wider and wider as the years progressed (to about 140/40 at time of surgery) and as his left ventricle enlarged. He was on Enalpril 20 mg bid to prolong the life of his natural valve, even though his BP was never really up. This, along with no bench pressing were the only restrictions he was on.

Take care, and keep us posted on what you find out!


I

 

[BAV Pt's daughter]

Got the latest results today.....

Got the latest results today.....

Well, Dr Raissi looked at my films. Here's the news:
Two cusps are fused at the commisure, so I am to be considered bicuspid. However, the fusion does not travel the entire length between the cusps, so it still functions as a tricuspid valve. There still shows mild aortic insufficiency.
Apparantly my valve bounces around more than is usual, so the pics still weren't the best, but with technology the way it is, nothing better than this last time is possible. I have to wait a year for some fancy new MRI that is coming out (and may have to come back here for it if L.A. gets it first). In the meanwhile, I am to monitor rest and stress BP's and HR's and probably go on beta blockers to keep my resting heart rate down (its always high) and I am supposed to be on a 20 pound lifting restriction, which does not make things easy at all for me. What fun!!!!! Well, guess I am joining the club, like it or not!!!