I got a second opinion referral, so

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MNmom

I will be making the trip back to Mayo clinic afterall. I am still keeping my surgery date of June 10th of course, but while I wait, I may as well get another opinion. I was suprized how quickly it happened today. I just called my primary clinic's business office and asked about a referral for a different cardiologist/surgeon at Mayo when as it is I have a referral to my regular cardiologist. I wasnt sure how the whole insurance/referral business worked, and I assumed it would be much more of a hassle. By the time I got home from work, I had a message on my answering machine from the Mayo clinic referral staff wanting more info. I couldnt believe it. Of course they had my info from last time I was a patient there, just needed to verify new last name and address- lots has changed from age 20 to 30! :)
So hopefully within the week I will have an appt made to see a surgeon at Mayo- to verify that what i have going on (aortic dilation/aneurysm and tissue valve that needs replacing) can indeed wait until June 10. Thank you all for your persistance that I should get a second opinion. Even though it hasnt happened yet, I am already a bit relieved knowing that it will. I guess I just figured it would be too complicated to go through another referrel, etc. My ins. co. told me today too that they allow for 2 different cardiologist referrals for the reason of getting a second opinion. And the nurse where I am scheduled also said they like when the patients get second opinions, because it verifies their work, and they can learn from it too. She advised that if the ins. for Mayo didnt work, I should go to another local heart center, just for the peace of mind. Hmpf. And I wasnt even going to consider it. I just really didnt want more trouble and hassle. I will keep you updated with what i hear, of course. Thanks again
 
So glad to know that you are pursuing additional opinions!

Large centers have many physicians. I believe Oaktree mentioned Dr. Sundt at Mayo in another thread.

Here is a link to Dr. Sundt's biography.

http://www.ctsnet.org/home/tsundt

Best wishes to you as you pursue the help you need!!!

Arlyss
 
I am so happy for you, I was a little concerned for you at first but now it sounds as if you have settled your worries and have it sorted in your mind. It takes a little while to get over the initial rollercoaster effect this has on the emotions. I too got a second opinion., I didnt change Doctors etc., but it did strengthen my belief in my original choice. I shall be waiting patiently to hear how your appointment goes.
 
here I am up at midnight again

here I am up at midnight again

It is a rollercoaster. Last time I went through this I was the daughter and sister. Now I am also the mother and wife, so it turns things upside down. One minute I want to be treated more like an adult who can make my own decisions, the next I am wishing my parents could come with me! :confused:
 
MNmom,

I'm relieved that you will be getting a second opinion, just to be safe and sure.

I expect the second surgeon will want to see all of your previous Test Results including the Reports and Tapes of your latest Echo, Angiogram, and CT Scan of your chest to properly assess the complete aorta. You may need to sign releases for those copies to be made and sent. Alternatively, you could take the copies with you. (Been there, done that).

Keeping your scheduled Surgery Date was the right thing to do until / unless you decide otherwise after your second assessment.

In another reply to your previous thread, Oaktree mentioned that Dr. Thoralf Sundt is the Aortic Surgery Specialist at Mayo Clinic. He trained with Dr. Kouchoukos in St. Louis who is reported to be a renowned Aortic Surgeon. (Feel free to verify any / all of this by Google Search or any other means).

I'm glad to hear that the referal and insurance issues went smoothly.

I expect that we can all agree that we are looking forward to a successful replacement of your valve and a successful repair of your aorta.

Best Wishes,

'AL Capshaw'
 
good news, when I got a second opinion on my situation not only did it confirm my condition it also settled me down a bit because I knew what I neeeded to do.
 
So glad you are getting a second opinion- we will all be relieved!;)
 
Oaktree said:
So glad to hear your news. It could not hurt to get a second opinion, especially if it can come from someone who has particular expertise in the aorta. Please, please insist that your consult at Mayo be with Dr. Sundt. Even at a renowned institution like the Mayo Clinic, different doctors have different areas of expertise. It would almost be waste to go to all the trouble of arranging this consult and then have it take place with someone whose specialty was coronary artery disease, or heart transplantation, or even lung surgery, when there is an excellent aortic surgeon there. Dr. Sundt trained with Dr. Nicholas Kouchoukos of St. Louis, who is one of the most highly regarded aortic surgeons in the world. Keep us posted.
Click to expand...

I second Oaktree's comments.

You could either ask your referring Doctor's office to contact Dr. Sundt's office or call them yourself. Once Dr. Sundt's office is aware that your Aortic Valve is deteriorating and that you have a 5.8 cm aneurism, they won't need a 'referal' from another doctor, they'll probably just ask you to send in your latest test results for review.

Several of our members have made successful similar "self referals".

Good Luck.

'AL Capshaw'
 
I'm glad I am able to follow this string since I am in the same position as you. I have an enlarged ascending aorta and a bicuspid valve, monitored for nine years by my cardiologist. A recent echo (confirmed by a angio/CT) indicated I have crossed over 5.0 cm. I will be seeing Dr. Patrick McCarthy at Northwestern Memorial Hospital as soon as my cardiologist gets my records over to him for a consult. Everyone I've talked to or monitored on these forums PREACHES about that second opinion- for peace of mind or for that second set of expert eyes. I didn't do that when I had lumbar surgery and not only did it turn out that it was medically unnecessary, I quack almost paralyzed me. Had I asked for another opinion, I might not be in the condition I am today. Even with the credentials of Dr. McCarthy, I am looking for another surgeon in Chicago that specializes in not only valve replacement, but aortic repair. I was told that the University of Chicago might be that alternate.

In the interest of making good and soundly based medical and life sustaining decisions, we owe it to ourselves and our families to cover all the bases.

Good luck with your decisions and get well!

upchurch131
 
I'm thinking pack your suitcase and prepare to stay once your there. I'm anxious to hear what they say.
 
thinking of you & sending hugs your way. glad to read you are going for a 2nd opinion. best wishes.
 
On the link I posted earlier, there are office phone, fax, and email for Dr. Sundt. Don't be shy about calling his office directly and arranging an appointment. They will tell you what images (CT scan, etc.) and reports they are interested in.

Be sure to tell whomever you speak to the size of your aneurysm and that you would like to be seen asap. If he still has the same assistant I once contacted, she is a very nice person!

Dr. Sundt performed complex aortic surgery on three people that I am aware of - a teen age athlete, a young father of two boys, and a chief scientist at IBM - and all did very well!

Here is a link to a story about one of them, Brent Warren:

http://www.baseballamerica.com/today/highschool/news/263140.html

And if you're wondering if Brent played again, the answer is yes!! He was one of the few chosen to be on the field in San Diego last August for the AFLAC All-American game.
http://www.aflacallamerican.com/2007/Roster/index.cfm?id=200

Every time I think about him out on that field less than a year after that surgery, I find tears in my eyes! This is a wonderful example of what is possible for those with aortic disease today!

Best wishes,
Arlyss
 
MNmom, Even though I don't have your same condition, I have read enough about it that I, too, am glad that you are going to the Mayo for a 2nd opinion. I know from my experience there that if you contact that specific Dr., they are wonderful about getting right back in touch with you and my surgeon was more than happy to review all of my last test results and then spent about 20 min. on the phone with me explaining all of my options and what he suggested that I do. All of this was before he ever laid eyes on me. Once I did meet him in person, he changed his plan for me because he saw that my body had learned to compensate really well for my condition. I also really can't say enough about the care from the nursing staff there...One on one when you are in ICU and then 1 nurse for every 2 patients once you step down. Good luck with your situation.

Kim
 
Very good news to hear about your decison for a second opinion. Just to ask an odd question that if this were happening to your child rather than you where would you have the surgery done?
Kathleen
 
Happy to hear it

Happy to hear it

Mnmom,
I am glad that you are going to the Mayo clinic. Just in reading through the thread, and from what others know, it sounds like they may tell you to get operated right away, meaning during your visit there. I'd try to get my ducks in a row just in case that happens.

My best wishes to you.

Rick
 
As I wrote in my other post- the infamous Sundt wasnt available for the consult until May 21st- so unknowingly i took the earlier consult for next week with Dr Park- who apparently is not the aortic expert that sundt is...:mad:
I tend to get overwhelmed quickly lately, and this is just frustrating.
 
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