Who do I go to for a 2nd opinion?

[MarkG]

I have finished the tests with the local Cardiologist and he said the narrowing of my value is not great enough to cause the blood pressure drop and enlarging of my heart during exercising and the narrowing is not small enough to operate. So I have to limit all my exercise to keep my HR below 120. So he wants me to come back every 6 months for an Echo.

Well I would like to know why this is happening and see if there is something else wrong. So time for a 2nd opinion. I looked at my insurance network and it appears the Cleveland Clinic is in my network. So my question to you folks is, are there any Cardiologist that specialize in Radiation Damaged Hearts at the Cleveland Clinic. I have read Dr Lytle is the best surgeon, but I was looking for a cardiologist that specializes in this. Do any of you have names of Cardiologist at the Cleveland Clinic that can help?

Thanks for the help.

Mark

 

[MikeHeim]

Sorry, I can't help you with your main question, but I just wanted to write to tell you that I agree with your thoughts that you need a second opinion. As you probably know, keeping you HR below 120 is virtually impossible with even relatively light exercise.

 

[Phyllis]

Mark, I did a search and here is a good thread about the doctors at Cleveland Clinic and includes one member who also has radiation damage:
http://valvereplacement.com/forums/...ght=cleveland+clinic+radiation+damaged+hearts
Take a look and I hope it helps.

 

[ALCapshaw2]

It just so happens that Dr. Lytle IS the Radiation Damage EXPERT at Cleveland Clinic.

Our member "Perkicar" went to him for her surgery because of Radiation Damage from Hodgkin's Disease.

We have at least 12 Radiation Damaged Heart Members here, including myself. You may want to go to the STORIES section (see main page, click on STORIES) and look for Johnny Stephens under TWO VALVES or some such title.

Also, do a SEARCH (click on the link at the top of the page) for keyword "Hodgkins" or "Radiation" and you will find LOTS of discussion of those issues.

Be sure to ask the surgeon(s) you interview about their thoughts on doing BOTH the Aortic and Mitral Valves at the same time. Wish I had!

'AL Capshaw'

 

[gijanet]

Hi, Mark!

Hi, Mark!

I'm probably the Queen of "Second" Opinions on here as we have sought out numerous additional opinions for Katie. Pick up the phone and give Dr. Lytle's office a call and tell them exactly what you have told us - that you want to know what you need to do to get a second opinion. They are used to getting this type of call and will direct you from there.

I have come to realize from the adults on here that the ped world works a bit differently in that second opinions in the ped world don't cost anything; such is not the case with the "adult" surgeons who apparently value their expertise more. With all of our additional opinions, I simply e-mailed the surgeon, they promptly responded with what they would need (cath images, echo tape, reports, etc.), I got it to them or our ped card did, and they rendered their opinions. Simple as that. In your case, though, I think I would want my "testing" to be done at Dr. Lytle's with their folks, if your insurance will cover it, just in case. That way you have a "true" additional opinion.

Good luck and keep us posted. Hugs. J.

 

[MarkG]

Made the appointment

Made the appointment

Thanks for the link. I made an appointment with Dr Stewart in December. The best news is they are in network so my insurance will cover the cost. I could not make an appointment with Dr Lyle, but I am happy to get the ball rolling for my 2nd opion. Now I can get some answers.

Thanks for the help.

Mark

 

[ALCapshaw2]

OK, I'm curious, WHY couldn't you "make an appointment with Dr. Lytle"?

'AL Capshaw'

 

[MarkG]

I was told to make the appointment with a cardiologist first before the surgeon. I guess they want to cardiologist to make a recommendation before I talk to the surgeon, but that is a guess.

Mark