I may have made some headway

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RvUsa

RvUsa

Well-known member
Joined
Mar 20, 2009
Messages
69
Location
Darlington, Pa
I think I finally found a way to get to the Cleveland Clinic!!!

I moved up my pcp appt to wed, and all I have to do is talk him into calling my ins co, and telling them that I am at high risk because of my size, and that no one in system is capable of treating me safely!!

So now I have a couple questions for ya, is there anything I could print and take to pcp to convince him, (like a study of BAV and TAA and big people) and is there anything you can think of that I should bring up to him. The one I can think of is the risk of anesthesia for large people... anything else?

And 2, if by some miracle, I do get the insurance co to let me go, who should I see there, do you guys know of anyone there that specializes in slicing and dicing on the large people? LOL
 
If you go to CCF, there are a couple of aorta specialists. I'd have to look them up again myself, but any of them would do the job.

Taking any study to a Doctor usually ends up in the trash or not even looked at. They have this God complex where their education means more then anything you can hand them, even when they are wrong.

I'd simply lay it out on the table and see where it goes from there.

http://my.clevelandclinic.org/staff_directory/2/Staff_1150.aspx

http://my.clevelandclinic.org/staff_directory/4/Staff_3006.aspx

http://my.clevelandclinic.org/staff_directory/2/Staff_1573.aspx

http://my.clevelandclinic.org/staff_directory/5/Staff_4359.aspx
 
Hi, gentlemen!

RV--I do not know, but what Ross said sounded true. :D

Ross--Is this newest photo really you? You look so normal! :confused:

RV again--When I was recovering from my OHS at Johns Hopkins, I saw a newby being rolled by to his room. The nurse who was in my room said that the gentleman going to his room was 90 years old and that he came to Hopkins because no one else would do the surgery on him. So... there are places (and Cleveland Clinic sounds like one) where surgeons will go out on that limb for you. Keep your hopes up! ;)

Still hoping and praying for you! (And you too, Ross!)
 
There's slim doubt Cleveland would take you as a surgical patient IMO.
If you can get the referral, I think they will get you the surgeon.

Good luck. We're rooting for you.
 
Dr. Lytle, Dr. Pettersson, and Dr. Svensson have been mentioned by Many of our Members and are very highly rated. I'm not familiar with the other one Ross listed but that doesn't mean he isn't another good candidate.
 
I'm going to go against the flow here and recommend that you lose as much weight as you can prior to surgery. It's an added risk factor that you don't need. I had a church friend who weighed quite a bit, needed surgery, and had been advised to lose weight. She went to a dietician, but just didn't have the willpower to stick to it. A year or so later, she hadn't lost any weight, but the doctors decided to go ahead with the surgery because the benefit now outweighed the risk. I'm not sure of the cause, but her heart was enlarged to the point it was causing pressure on her ribs. Unfortunately, she didn't make it through surgery. She just wasn't healthy enough. I wonder if she'd been at a more reasonable weight, would she still be here with her husband and child. I doubt she would have made it through had she had it a year earlier either. She had a very difficult time walking without getting out of breath.
 
Ok guys, saw the PCP. He is all for me going to CC!!! He said my cold hands are probably the atenelol, and my chest and back pain is probably all in my head from anxiety. He wants me to gather as much info as I can, and print it out, bring it to him, and he will present it to my insurance.


So, HELP!!! Anyone know any studies etc about guidelines for surgery etc?

Anything else that will help as well, please just post the link if you have it, or know it, and I will pull it all together and give it to him.

Ross, I listened to you, lol and didn't take anything with me, and he wanted it all. ;)

Thanks guys.
 
It's really up to your Doctor to get everything he needs and make his personal assessment from that to make a case with the insurance company. Honestly, there isn't much that you could hand him that he'd be interested in. You'd get the most often reaction of, "Oh you listened to people on the INTERNET" thing, then they immediately turn you off.

Lisa I hear ya. He already knows this is no picnic at his weight, but if push comes to shove, which I beleive it will, they'll have to operate in an emergency without waiting for weight loss, so..............
 
I told him I was reading up on it, and it was his idea for me to find some info for him to use with the Ins Co. LOL

He was all for the second opinion, and he said he needed all the info he could get to argue with them.
 
As far as the insurance goes, I think you are stressing out about nothing. I have yet to hear of anyone who had their heart surgery denied by their insurance company because of lack of necessity. It's pretty easy. Your doctor puts down the diagnosis, follows the rules about preauthorization, etc. and they pay it. Unless you have some weird clause in your insurance, it's not going to be a problem. My brother had his aortic valve and aneurysm repaired within months of finding out about it. He could have waited because his aneurysm wasn't really that large yet; in fact, they didn't know for sure that he had one until they got in there. The insurance company didn't blink. Heart surgery isn't something that insurance companies go against the doctor on.

Now, unnecessary CT Scans and MRIs are quite another story!
 
RvUsa said:
I told him I was reading up on it, and it was his idea for me to find some info for him to use with the Ins Co. LOL

He was all for the second opinion, and he said he needed all the info he could get to argue with them.
Click to expand...

Have him get your records or go get them yourself from the other Doctors. They can charge you if you get them, free if he gets them, but I don't know if you want the others to know your seeking a second opinion. Really, it's none of their business.
 
Lisa, I know they will pay for the operation, it's just that they will pay for it in a really small local hospital, that doesn't have a lot of experience with this type of thing, they won't pay for it at the Cleveland Clinic, unless my PCP can prove it's medically a better decision to go there. That's what I am trying to do right now, prove to my insurance that the CC can do it better and safer than the local place, and that the local place can't really do it at all. (I can't fit in mri, or ct there, plus they don't have an anesthesiologist that deals in people my size and OHS).


Ross, I already have all my tests and results, and so does my PCP, he was forwarded with all of them when I had them.
 
Got it now! So you're on an HMO, or otherwise very limited plan, I assume. Most plans will approve for this type of heart surgery at a major facility. All it generally takes is doctor to doctor contact. Find out who the Medical Director is for your insurance company and have your doctor contact him directly. Then back it up in writing.
 
Hey RV

How big of a guy are you and what is your condition? I too am a bigger guy 6'4 270 and 29 yrs old. I was diagnosed with BAV in early March. I have not been told that i need surgery yet. I have leakage at a mod to severe level. Before i found out about my BAV i played rugby for about 4yrs until i tore cartilage in my knee and needed surgery. I did have a reaction to the anesthesia. As i am learning more about different options for surgery i am worrying less about it for now as i have not been told that i need it. when it does come time for me to start looking for surgeons I will probably have more anxiety with it. I myself am equally worried about the anesthesia as i am about surgery due to my past.

Good luck with everything.
 
Hi John,
I read hurriedly through your earlier posts and think I understand that you have a cardiologist and weight loss surgeon who both want you to delay heart surgery until after WL surgery and subsequent weight loss. That is why you need your PCP to take your plea to the insurance company, rather than a cardiologist, who wouldn't be depending on YOU to do the research. Did I get that right?
Do you think you could sway the cardiologist to support your heart surgery first? I hate to think of having a cardiologist not supporting me in that situation.
But if you must depend on your PCP, I wonder if taking the approach that your local hospital doesn't perform enough Aorta replacements would help. I know that there are studies showing that for any surgery, volume of surgeon's experience is a good (best?) indicator of favorable outcome. That avoids your having to justify your specific situation, since the argument is that no one would have that particular surgery at that hospital. Your PCP should be able to help with that documentation.
This is a tough situation for you, and I admire you for striving to do what's best rather than what is easiest. (I hope I've understood your situation and am not just sowing confusion...)
 
scuba_898 said:
Hey RV

How big of a guy are you and what is your condition? I too am a bigger guy 6'4 270 and 29 yrs old. I was diagnosed with BAV in early March. I have not been told that i need surgery yet. I have leakage at a mod to severe level. Before i found out about my BAV i played rugby for about 4yrs until i tore cartilage in my knee and needed surgery. I did have a reaction to the anesthesia. As i am learning more about different options for surgery i am worrying less about it for now as i have not been told that i need it. when it does come time for me to start looking for surgeons I will probably have more anxiety with it. I myself am equally worried about the anesthesia as i am about surgery due to my past.

Good luck with everything.
Click to expand...

Scuba, I am about 2x your size LOL, I am 6'8" and about 470 lbs I was diagnosed about 2 months ago with a 5.4cm (or 5.9cm depending on the test you trust) ascending aortic aneurysm, and a mild to mod (again depending on which report) stenotic BAV. This was all found by my PCP first because of testing for the weight loss surgery. My WLS didn't want the echo, but my PCP did because he knew about a murmur I have had since birth. So the problem is that my insurance only pays for stuff at their own hospital, but it doesn't have the capability to provide care for someone my size.... LOL hence the fight.

I hope everything works out for you as well, keep us updated.


DebbyA said:
Hi John,
I read hurriedly through your earlier posts and think I understand that you have a cardiologist and weight loss surgeon who both want you to delay heart surgery until after WL surgery and subsequent weight loss. That is why you need your PCP to take your plea to the insurance company, rather than a cardiologist, who wouldn't be depending on YOU to do the research. Did I get that right?
Do you think you could sway the cardiologist to support your heart surgery first? I hate to think of having a cardiologist not supporting me in that situation.
But if you must depend on your PCP, I wonder if taking the approach that your local hospital doesn't perform enough Aorta replacements would help. I know that there are studies showing that for any surgery, volume of surgeon's experience is a good (best?) indicator of favorable outcome. That avoids your having to justify your specific situation, since the argument is that no one would have that particular surgery at that hospital. Your PCP should be able to help with that documentation.
This is a tough situation for you, and I admire you for striving to do what's best rather than what is easiest. (I hope I've understood your situation and am not just sowing confusion...)
Click to expand...


Debby, you got it pretty good... LOL. Most of it is explained above, but my cardio, and surgeon are in the same practice, and both just say what the other one wants them too. They both have said, "get the WLS, loose a hundred pounds and then we will do the aorta. I haven't even met my WLS yet, I am in the middle of the 6 month supervised diet, and all the other pre WLS stuff. The earliest that I could have WLS is probably August now, and then it would be 5 or 6 months till I would be down the 100lbs.... and to be honest, I don't really want to wait that long with a 5.4-5.9cm time bomb in my chest. Plus I don't think the stress of the WLS, and recovery etc, is the best idea either. I just feel like my cardio, and surgeon, can't do anything with me now because of my size, but don't want to loose the money, so they want me to pass the risk to someone else and get the WLS, and then if I make it, come back to them LOL. Does that make sense? :eek:
 
DebbyA said:
Just doing a quick Google on "obese heart surgery risk", I came up with this:
http://ejcts.ctsnetjournals.org/cgi/content/abstract/29/4/434

See the other citations at the bottom of the abstract as well.
Click to expand...

While he needs to be aware of this, and I'm sure he is, the fact remains that death is knocking on his door, so that sort of make all these studies irrelevent in his case. Granted, he's going to have a hard time during recovery, but it's better then death. ;)

Please understand, I'm not knocking your post or the stats, though I don't believe in them at all. I'm just trying to bring a true life prospective to the issues at hand. He hasn't got time to lose the required amount of weight without posing a significant loss of life danger.
 
John. Good luck and keep us posted! Whatever you can do prior to surgery to get in better shape ... the easier your recovery will be.
 
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