Thymus growing around heart

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LoriDesi
New Member


Date Joined Jun 2010
Total Posts : 4
   Posted 6/23/2010 10:29 PM (GMT -7)   
I don't know where to post this, I'm just looking for help for my brother.
He is 5'9" and weighs 160 pounds. He will be 29 years old this August.
We found out he has a fatty mass wrapped around his heart, essentially crushing it and it is beginning to push into his lungs.
The biopsy showed it is not cancerous. We have been told it is actually his Thymus that keeps growing.

For what ever reason, none of the local surgeons seem to want to touch him because they have never seen this before.
He just keeps being passed off to the next doctor. We hear over and over "that is huge", "it has to be removed" "let me set you up to see so and so".
He has insurance and is able to fly to where ever he needs to be if any skilled surgeon out there can help.

Please, if anyone can point me in the right direction, I would be eternally grateful.

Thank you,
LoriDesi

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/24/2010 6:51 AM (GMT -7)   
LoriDesi
Hello and welcome to HealingWell. I am sorry to hear of your brother's problem. I would like to suggest Mayo Clinic, Rochester, MN as they have some of the best cardiologist in the USA.
The heart care practice at Mayo Clinic in Minnesota is one of the broadest and largest in the world. Members of the Division of Cardiovascular Diseases care for approximately 55,000 patients annually. Members of the Division of Cardiovascular Diseases are extremely active in cardiovascular research.

I know there are many great cardiologist in the USA but this would be the one I am most familiar with and may be a good choice for your brother to look into.

Do keep us posted.

Kindly,

Kitt

LoriDesi
New Member


Date Joined Jun 2010
Total Posts : 4
   Posted 6/24/2010 8:47 AM (GMT -7)   
Thank you so much. Before I read here, we were told about Shands. If that doesn't pan out then we will try May Clinic. Again thank you.

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/24/2010 4:18 PM (GMT -7)   
I think you have been advised well and I noted both facilities have equal ratings for Cardiac services: Above national average in 3 of 5 areas.

Let us hear what your brother finds out as this is an interesting case though I know it is very scary for all of you.

Keeping you and your brother in my prayers.

Kindly,

Kitt

LoriDesi
New Member


Date Joined Jun 2010
Total Posts : 4
   Posted 7/11/2010 9:25 PM (GMT -7)   
Just a quick update, Shands will be doing the surgery, Dr. Philip Hess will be the head surgeon. They have decided to go in the way they would a lung transplant in order to have surgeons on both side to lift the mass out. July 15th at 8am is when the surgery will start.

Strangely enough, as I was frantically trying to find someone capable of caring for my brother in this very unusual situation, Moffit called. That surgeon said they wouldn't touch it for another 20 years or so. To which my brother replied, "Did you look at the ct scans?" He said yes. So brother says, "ok, if you were going to do it, how would you perform the surgery?" The surgeon said he wasn't really sure but probably just a cut down the center to open his chest. Brother says, "huh, that's funny because everyone we spoke too said it's pressing on my lungs and has engulfed my heart, no room to grow anymore. Also, Shands is performing the operation, and due to the size of this thing, they are going in as if they were doing a lung transplant." The Moffit surgeon got defensive, says "well yea you could do it that way", wishes my brother luck and hangs up.

Moral of the story? Get several opinions, speak to several doctors.... I have to say, I was really disappointed in Moffit. Then again, I was a Rad Tech in the room when several med students were working on a patient..so, yea. rolleyes

LoriDesi
New Member


Date Joined Jun 2010
Total Posts : 4
   Posted 7/17/2010 10:19 PM (GMT -7)   
The surgery was a success. The thymus tumor slid out easily once they got him open and could reach it.
He was only in surgery for 1.5 hours.
The size of this thing? Brace yourselves....
8 POUNDS! Yes, my brother just gave birth!
It was shaped like a butterfly and draped over/around the heart.

A huge thank you to Shands, Dr. Hess and his team of surgeons
as well as all the very patient nurses that are working with him during his recovery.

SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 7/17/2010 10:57 PM (GMT -7)   
What a wonderful outcome! Hope he recovers well........
SnowyLynne


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 7/18/2010 7:35 AM (GMT -7)   
Wow, 8 lbs, amazing and I am impressed with the surgery being completed in 1.5 hours. Kudos to Shands and to the surgeon. I am so thrilled to read the outcome was a success.



You are so right in advocating for oneself.



I am so happy for your brother and for you.



Kindly,



Kitt
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