Surgeon and Card Disagree on Surgery. Advice?

[gijanet]

Jiminy cricket...........

Jiminy cricket...........

She thinks Im using ohs as an escapist tactic. .

Don't let my students catch wind of that one. That's one they haven't tried ---YET!!! I teach at an at-risk school.

Hugs. I hear your frustration. Hang in there. As the mom of a five year old with numerous heart defects, I wholeheartedly second Lyn's recommendations..........and then will add my two cents more.

The adult CHD group is great for morale and information both. Do your card and surgeon specialize in adults with congenital heart defects who have had prior surgeries as children? I read your post twice, but I didn't see reference to a cath or TEE having been performed. Have you had either procedure performed recently?

Just my two cents, but I would definitely seek out an additional opinion from another surgeon who specializes in adults with chd. Fight your insurance company if you must. Most will pay for an additional opinion when surgery is involved.

More food for thought, but most ped heart centers do not charge for an additional opinion. From our personal experience with our additional opinions, the following do not charge: UofM, CHOP, Boston Children's, and Texas Children's. Dr. Mee from Cleveland did not charge us either, although I understand that their adult facility does. You may be thinking, yeah but that's ped heart centers. Many of the ped heart centers also operate on adults with chd as a few here can attest. Gnusgal's last heart surgery (not defibrillator implant) was a few years ago. She had it at Texas Children's and she is 29. I'm half braindead tonight, but I think she was 25 when she had her surgery there. If she doesn't pop in here soon, I will put a bug in her ear. JeanneImp's son Matt (20) still goes to UofM's ped heart center. I think with your history that you would probably qualify for an additional opinon at one of these centers. You could just email their surgeons and ask. That's what I always did. Let me know if you need their e-mail addies as I have them stashed somewhere here on my PC. They do usually request the latest cath or TEE as well as an echo, though. Oh, and let me clarify that we did not have anything physically done when we sought out these additional opinions. I e-mailed the surgeons. Our PC (ped card) sent the latest cath data and echo tape and reports to them and then they told us what they thought Katie's surgical gameplan should be.

Well, I will quit boggling your mind for one night, but please don't move to Africa just yet. Hugs. J.

 

[geebee]

Yep - go with the surgeon. I agree that a second surgical consult might be in order but definitely take the surgeon's suggestion.

 

[BillCobit]

High LC

When I had some doubts about what my cardio was telling me, I got a copy of my most recent echo report, then compared them against the ACC/AHA Guidelines (2006 edition at: http://content.onlinejacc.org/cgi/content/full/48/3/e1?ct). If you haven't yet done that yourself, it might help provide some perspective that's useful in resolving disagreements among your docs and parents. In my case, I discovered I had a cardio that was not current (putting it charitably) w/ guidelines for valve disease.

 

[MarkU]

I was fortunate that my cardiologist and surgeon were in agreement when I needed my surgery. We knew from my echos that I had some left ventricular hypertrophy, but during my AVR they found that my valve was in much worse shape than my symptoms or tests had indicated. So glad that I had my AVR sooner rather than later. I was extremely lucky not to incur any permanent damage - I was very close to doing so.
I would second the recommendation to try to get a second opinion from another surgeon if you can. Also, have your cardiologist and surgeon acutally talked directly to discuss your case? If not you might request they do so, with you present.

 

[LaughClown]

sorry for taking so long to reply. Its been a very busy weekend. Its actually been a very relaxing monday comparetively, how rare is that...
I can see where my cards are coming fom. The echo I had was the first in twelve years (I had one when I was 10yrs old) so there isnt anything to compare to, which is why they wanted to wait six months and do another run of tests to get "two points on the graph." Also my cardiac mri said that I had light-mod regurg, though my card didnt think it was light but with the mri and echo info believed it was moderate. That combined with the fact my symptoms are relatively mild (I can run, climb etc I just dont feel that great after sometimes) makes me understand why they wanted to wait.
I think a cath or tee might be a good temporary compromise. To my cards I am possibly avoiding what they see as an unnecessary surgery at this point, and to my surgeon Im not just ignoring the problem for a few months.
As for insurance, after lots and lots of calling, i think I can be covered if I drop out for the semester, that I just have to get the campus rep to ok the reasons and I'll be ok. I'll have to talk to them about the cath/tee.
My hospital is next door to primary children's med center where think I may have had my original surgery and I will definitely look into getting an opinion from a surgeon over there. They dont treat people over 18 but they may do a consult. As for my coarc repair, none of the tests indicate anything is wrong as of yet. When I asked the surgeon about it he said there didnt seem to be any reason to repair it now, since its a seperate surgery. I suggested an ascending-descending aortic bypass but he said it would just mean a longer surgery for something possibly unneeded and if something came up in the future that I could have it taken care of then.
Oh and last thing, both of the cards Ive been seeing are adult congenital heart specialists. Since they both agreed is why I have been lending some creedence to their opinions. I asked the surgeon to talk with my card and see if they could come to a concesus about it and he said he would talk to him. I called the next day to see if they had spoken but my card had left town till this week. We'll see.
Thankyou so much for the advice and support. It is appreciated more than you know. Hopefully I will come to some decision about this soon.

LC

 

[Marguerite53]

Glad you posted! You sound so level-headed and mature. Just wanted to wish you luck and peace with your decision making. I know a lot of us are keeping tabs on you so we're all here behind you!

Best wishes! Marguerite

 

[pipersmith]

Glad to see your post. It sounds like you have really thought out your course of action - good for you!!

I think that the cath and/or TEE will give concrete measurements to perception - that will most certainly lend credence to the opinion of your cards or the surgeon. I do want to encourage you one more time to be honest with the doctors about how you are feeling, and the presence or absence of symptoms.

Best of luck with these next steps of your journey. We will all be around to support you....

 

[afraidofsurgery]

symptoms

symptoms

I had mod-severe aortic regurg, and according to my research the appearance of ANY symptoms was the trigger to do the surgery. I have a handful of journal articles that support this!!! So your description of your symptoms as mild (ie, so they can be ignored) and your EF of 46% really concern me. Also, OK get more imaging tests, but I think the key issue is can your heart muscle squeeze as hard during exercsie as it can at rest? If not, it may mean you're at the early stages of heart failure that must be interrupted immediately to prevent permanant muscle damage.

I spent a lot of years juggling jobs to stay insured w/ no exclusions, wrestling with fatigue and depression, and just plodding along to stay ahead of the big bad surgery. I do trust that things happen how they're supposed to, but I can't tell you how much better I feel after getting my new valve. It's a dramatic improvement that I notice and appreciate every day.

And the surgery - well, compared to 10 years of wrestling with echos, tests, and my other 'non-symptomatic' symptoms, it was surprisingly easy. Maybe because I was emotionally ready for it. But it would have been just as good a decision to get the darn thing replaced when the first 3 doctors told me it was time (never could listen to anyone..)

Certainly get enough 'data points' and second opinions from higly respected doctors to feel confident of your situation. And keep in mind I'm not a doctor, but a PhD who had some time to do a lot of journal article reading.

GOOD LUCK on your journey, we're with you.

Patty

 

[ALCapshaw2]

Don't fall into the "I don't have any symptoms so I must be OK" TRAP.

First, you DO have symptoms.

Second, your Valve IS diseased.

Third, there is NO medication, NO diet, and NO life style that will REVERSE your Vavle Disease.

The ONLY way to fix your diseased valve is to REPLACE IT.

Also, there is NO BENEFIT to postponing surgery, only ADDITIONAL RISK of Further and/or PERMANENT DAMAGE to your Heart Muscles and Walls.

SEVERAL of our members have reported that their hearts were in MUCH WORSE condition than expected based on their test results. Some have even had their valves literally "fall apart" in the surgeon's hands.

Do you want to risk that kind of result (or worse) just because you can walk around under the deception that you aren't really experiencing symptoms?

Sorry for being so BLUNT, but it seems to me that you are in DENIAL about your symptoms or just overwhelmed about the prospect of surgery.

You need to understand that the SUCCESS RATES for Valve Replacement are exceptionally HIGH, especially in younger patients.

The prospect of NOT having surgery is almost certain DEATH, or reduced surgical benefit if you wait until your heart is irreversibly damaged before having surgery.

Just my 2 cents worth. I've probably said too much anyway.

'AL Capshaw'

 

[gijanet]

Lc............

Lc............

Glad to see your post. You sound in a much better frame of mind than your previous post. I know that sometimes I just need time to digest the unpleasant surprises we've encountered and wrap my mind around them before I can think about them rationally.

I'm glad to hear that your cards are adult chd specialists. That does give their opinions more credence. I do like the idea of a cath or TEE in the meantime. This provides a much clearer picture of what is going on. Then you can truly decide if there is room for you in the waiting room or you need to jump on the surgeon's calendar ASAP! Also, it provides you with the data you need to seek out a second opinion from another surgeon who works with adult chd patients. They aren't all chomping at the bit, trust me.

Please keep us posted. You have our prayers. Hugs. J.