valve repair option

[scuba_898]

hey everyone. I was recently diagnosed with a bicuspid aortic valve, this past march. since then i have been on a mission to learn as much about it as i can. VP has been a big help on this. today i stumbled across a website that is new to me and i wanted to share it www.mitralvalverepair.org. it is put on by sinai hospital. It discusses the option of valve repair vs replacement. I just wanted to throw this out there for people to do there own research on. I also would appreciate it if people out there who have had a valve repair performed let me know how there doing and where they had it done. I appreciate everyones help.

I have not been told that i need surgery yet, but was told that it is indefinate. I am currently 29 years old. I am experiencing valve regurgitation at moderate to severe level according to my cardiologist. so i have been put on a check up schedule of every 6 mo. The surgery option still scares me, as i am sure it was uncomfortable for all of you who had to experience it. This has been my motivation to this point, even though right now i was told that i don't need surgery yet, i could need it in 6 mo to 10 years, and i just want as much informed on technologies on to how to fix it as possible. thanks again and i look forward to reading your posts.

 

[catwoman]

My husband had MV repair 2 years ago (May 10), nearly 4 years after my MV replacement.
He benefited from my experience and feedback from some here at valvereplacement.com, and we found Dr. William Ryan at Presbyterian Hospital in Dallas to do his repair.
John received his invitation to join the Zipper Club thanks to a car accident. He was able to have a right thoracotomy. His recovery was fairly quick and the only speed bumps he had were lymphodema from an incision and arrhythmia, requiring warfarin for 7 months. No big problem for us, since I I've taken it since June 2003.

Mitral repairs are more common now, thanks to innovative techniques at some of the big teaching institutions and doctors staying on top of valve problems, being more inclined to get a patient to surgery before symptoms start, rather than waiting until the patient is symptomatic.

Don't have much information about aortic repairs; I'm sure stenotic AVs can be fixed somewhat with balloons, but that probably depends on the age of the patient and status of the rest of the AV.

 

[Tbone]

Thank you for sharing that with us. I wish you luck for the future of your health needs, and say that continuing education is the best thing you can do.

 

[ryen0]

hey everyone. I was recently diagnosed with a bicuspid aortic valve, this past march. since then i have been on a mission to learn as much about it as i can. VP has been a big help on this. today i stumbled across a website that is new to me and i wanted to share it www.mitralvalverepair.org. it is put on by sinai hospital. It discusses the option of valve repair vs replacement. I just wanted to throw this out there for people to do there own research on. I also would appreciate it if people out there who have had a valve repair performed let me know how there doing and where they had it done. I appreciate everyones help.

I have not been told that i need surgery yet, but was told that it is indefinate. I am currently 29 years old. I am experiencing valve regurgitation at moderate to severe level according to my cardiologist. so i have been put on a check up schedule of every 6 mo. The surgery option still scares me, as i am sure it was uncomfortable for all of you who had to experience it. This has been my motivation to this point, even though right now i was told that i don't need surgery yet, i could need it in 6 mo to 10 years, and i just want as much informed on technologies on to how to fix it as possible. thanks again and i look forward to reading your posts.

Hi scuba, message me if you'd like to talk more about surgery. I had mitral valve repair at St. Joseph's almost a year ago. I'm right at your age and live in georgia, so let me know if you have any questions.

 

[Gail in Ca]

I just had my mitral valve repaired 2/20/09. It was done by Dr Craig Miller at Stanford Hospital. He used a anulplasty ring. I also had my aortic valve replaced at the same time. I now feel pretty good, better weekly for sure.
Dr said I should feel better than I have in years, and I think he's right!
My mitral was leaking mod to severe for many yrs. Now, my cardio says he wouldn't know me from listening to my newly repaired mitral!
The Dr you want is one who is an "artist" in the stitching dept.
Gail

 

[Reddog]

West Coast Expert: Craig Miller @ Stanford

West Coast Expert: Craig Miller @ Stanford

Hey Scuba -

Not sure if this is relevant to you, but Craig Miller at Stanford is probably the leading surgeon on the west coast for bicuspid aortic repairs. I hear that the Cleveland Clinic has an expert or two as well.

You won't find a huge number of people with bicuspid aortic repairs on this site - it's a relatively new, less common surgery (you will find more folks with valve sparing operations for normal valves). I believe that Tirone David - one of the creators of the surgery - is still active in Canada.

The thing to keep in mind is that most bicuspid aortic valves do need to be replaced eventually (50's - 70's) - but for a young guy like you, if the surgery is a success, you will get a lot of years out of the repair. The web page that you cite focuses on mitral valve repairs, which is a very different process, so I'd try to find my info elsewhere.

I'm age 46, and will likely opt for a bicuspid aortic repair from Dr. Miller this June. He did Aaron Boone's and Ronny Turiaf's aneurism repairs (Boone's included a bicuspid aortic valve). I wish I could tell you my outcome, but I'm not there yet!

In any case, I'd like to echo scuba's request for info from people that have had aortic aneurism replacement with a bicuspid aortic valve repair. If you've had this procedure, please tell us about it.

Thanks,
Red

 

[ALCapshaw2]

Welcome Aboard Scuba!

First, you need to know that most of us find that the Surgery is not anywhere near as 'bad' or 'uncomfortable' as we feared. Pain is usually controlled quite well and many go home on nothing stronger than Tylenol. MOST report that the Waiting was the Worst part of the experience.

Muscle Pain (back, shoulders, etc.) is best relieved by Massage (Faster and Better) rather than pain medications.

Since you have a BiCuspid AORTIC Valve, I'm wondering why you are looking at Mitral Valve Repair material?

I recommend that you read as much as you can in the Bicuspid Aortic Valve and Connective Tissue Disorder Forum to learn more about your condition and treatment.

Once your condition has been diagnosed, you may want to start interviewing Surgeons. To my mind, Surgeons have a better feel for Valve Issues and especially Timing for Surgery.

Dr Chen at Emory is one of the leading Aorta Surgeons, especially in the SouthEast. I think there is also someone at PeachTree CardioVascular Surgeons who specializes in surgery of the Aorta which is often needed in addition to Aortic Valve Replacement for BAV patients who also have a connective tissue disorder. You will want to have a Surgeon with the knowledge and skill to recognize the signs of this disorder and how to treat it so that everything can be taken care of in ONE operation!

The BAV and CTD Forum should keep you busy for a while. Feel Free to ask any more Questions as they come to mind.

'AL Capshaw'

 

[ALCapshaw2]

Welcome Aboard Scuba!

First, you need to know that most of us find that the Surgery is not anywhere near as 'bad' or 'uncomfortable' as we feared. Pain is usually controlled quite well and many go home on nothing stronger than Tylenol. MOST report that the Waiting was the Worst part of the experience.

Muscle Pain (back, shoulders, etc.) is best relieved by Massage (Faster and Better) rather than pain medications.

Since you have a BiCuspid AORTIC Valve, I'm wondering why you are looking at Mitral Valve Repair material?

I recommend that you read as much as you can in the Bicuspid Aortic Valve and Connective Tissue Disorder Forum to learn more about your condition and treatment.

Once your condition has been diagnosed, you may want to start interviewing Surgeons. To my mind, Surgeons have a better feel for Valve Issues and especially Timing for Surgery. You can "Self Refer" to surgeons. Once you identify yourself as a BAV patient who may need surgery to fix your heart, most surgeons will be willing to talk with you after reviewing the Tapes / CD's of your Echocardiogram and other tests you may have had such as a TEE (TransEsophageal Echo) or Heart Catheterization / Angiogram.

Dr Chen at Emory is one of the leading Aorta Surgeons, especially in the SouthEast. I think there is also someone at PeachTree CardioVascular Surgeons who specializes in surgery of the Aorta which is often needed in addition to Aortic Valve Replacement for BAV patients who also have a connective tissue disorder. You will want to have a Surgeon with the knowledge and skill to recognize the signs of this disorder and how to treat it so that everything can be taken care of in ONE operation!

The BAV and CTD Forum should keep you busy for a while. Feel Free to ask any more Questions as they come to mind.

'AL Capshaw'