New member needs info, Cleveland Clinic especially

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healthandhope

Member
Joined
Nov 29, 2012
Messages
13
Hi, looks like you all are my new best friends! Like many of you I have been diagnosed with BAV and aneurysm of asending aorta. Slightly under 5.0 cm. I know I will need to travel and would like to set up a consultation and probably surgery soon. Cleveland Clinic is currently where I am looking due to distance and reputation. I would love to hear from anyone with knowledge and/or experience with the docs there for this problem. I would like to make a request about whom to consult with for surgery. Can you send me what you know that would help? Also any other related comments would be helpful. Tough learning curve...please email me privately if necessary.

Thanks and talk to you soon
Healthandhope
 
Greg - thank you so much for your welcome and response. I am closest to Cleveland campus (but still a trip). The link you gave is not working for me for some reason - I get a "sorry not found" message although I am logged in. Would you (or someone else online) tell me another way to get to that archive possibly? Thanks again for responding.
 
OK I think I've got it now. Thanks again. I am sure you all have gone through all the range of emotions - much more since you've been at this longer. I just found out about this a few weeks ago and am already talking surgery. BAV and aneurysm close to (but apparently below) 5.0. What has helped you comes to terms with this diagnosis? I find besides sadness and tears I am also just mad.
 
My BAV diagnosis was in mid July (MRI confirmed) and I had a cath in early August. I had a short delay in surgery due to job hunting but once that was resolved the surgery was scheduled for the first open spot on the calendar, September 10th. Fortunately for me I had a clean bill of health other than the BAV and the surgery went quicker than scheduled. The surgeon did say that it was the worst valve he'd seen so I guess it was good I opted for the surgery ;)

The reality was that once I had the diagnosis and had spoken with the surgeon I was comfortable going forward. It certainly helped that I was at one of the highest ranked facilities along with one of the highest ranked surgeons. I think my wife was much more nervous about the situation than I was. I sort of liken it to flying in that unless you are the pilot you have to give up control to get what you want - so sit back and enjoy the ride.

Frankly, it's been slightly less than 3 months since my surgery but it feels like ages ago and I'm doing things now that I could never do prior to the surgery w/o gasping for air.
 
ALL of the surgeons at the Cleveland Clinic are highly qualified to do your surgery. If you have the option of going there, I highly recommend it. I've been there two times and Dr. Bruce Lytle has been my surgeon both times. Now that Dr. Lytle only does surgery about three days a week, it may take longer to get a surgery date. If you like, I can send you a private message with his nurse's name and direct phone number.
 
Healthand Hope,

My complex surgery was performed at the Cleveland Clinic. The doctors are amazing.
I flew up from Nashvile, and had it done there because of their reputation and staff.
They are truly a benchmark in the industry, and I think you will find the experience there exceptional.
It seems as though you have done your research on them, but if you have any questions that I can help with,
please PM me.

Wishing you good health,
Rob
 
I have a complex congenital heart defect, and I had my third open-heart surgery at the Cleveland Clinic in March 2012. It saved my life, and the doctors, surgeons, staff, everyone, it was wonderful from start to finish. I will be returning there in January for a check-up.

My doctors at home could not figure out why I was getting sicker, and I went there. The trip was supposed to be just for a second opinion, but while there, they saw the mechanical valve in me wasn't working. I had a doctor's appointment on Monday, a cath on Tuesday, and literally they scheduled my surgery for Thursday morning. Everything is electronically coordinated and you really get the sense the doctors are working together as a team and seeing you as a whole patient, not just a disease or valve.

About my surgery --> they removed the mechanical valve I had and replaced it with a cadaver valve. It's in the pulmonic position. My heart was in terrible shape (the valve had frozen open) and literally when I woke up, I could tell my heart was better. It sounds dramatic, but it's true. One thing that was a problem is they had a hard time managing my pain afterwards 3 or 4 days - I don't respond to morphine, percocet, etc. so I suffered terribly with that. Note: For my 2nd surgery, there were problems with managing my pain as well, so it might be more about my body chemistry than the doctors.

They were able to manage it after a while, and the nurse practitioners and doctors were receptive to trying to help me. They told me that it hurts more with multiple surgeries like I've had. The nurses were mostly good -and of course - everything is kind of a fuzzy blur after surgery.

I remember someone on here stating the CC is like a "factory" for heart valves, and that's kind of true. It's strange to be wheeled to surgery and see door after door of operating rooms. But they really are the best from what I've heard, and I would recommend it to everyone if they can. I was in the hospital 11 days and on my checkout I asked the NP about how long my new valve should last. She said that I should have a good run of it - and of course it's hard to tell because I'm an adult congenital patient and in that age bracket where a lot in group didn't survive to adulthood.

But what she did tell me was that having the surgeon I did, it'll probably last longer than average, which is just fine by me. I saw Dr. Richard Krasuski, who directs the Adult Congenital Clinic and my surgeon was Dr. Gosta Pettersson, and I owe my life to them. Good luck, and feel free to privately message me if you'd like more details about my experience.
 
Hello healthandhope
I am new to this forum as well and decided to join actively to share my experience.
I had my first OHS in 1989 with 25. It was a dissection following a misdiagnosed aneurysm. That time the ascending aorta was replaced as well as a BAV replacement with a mechanical valve.
Over the last 5 years a 5 cm pseudoaneurysm developed at the suture line and there was a remaining piece of the dissection.
After some research I requested a second opinion about the procedure from the Cleveland Clinic, as alternative to my local clinic in Colorado.
The response from Cleveland and their track record was so impressive that I decided for a OHS there mid last month, which was the reason why I flew with the whole family to Cleveland.
The clinic, the staff, the pretty new facilities and the experience gave me an incredible peace of mind from the beginning. Their surgical staff appears to be among the most experienced in the world. Having three hotels on campus speaks for itself.
My healing progress is beyond initial expectations. In my opinion Cleveland Clinic is the best choice you can make for surgery and healing.

I wish you all the best for your procedure and hope you will make a similar experience.

Joe
 
Thank you all very much for sharing your experiences. After two consultations/reviews looks like I'll be watching and waiting a while - 6 months right now. S o relieved to get the same recommendation from both docs instead of a split decision.
 
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