Newby looking for info.

[JoeG]

Joe:

If you decide on a third opinion, I know several folks who have had great success with the Arizona Heart Hospital and Dr. Detrich, who used to be called "The King of Hearts."

Blanche
Blanche

Blanche-
Thanks for the reply....sorry to all for not responding sooner but as you all know times are a bit hectic right now. Blanche, my wife read your reply and called for an appt with Dr. Diethrich and we met with him today. The Arizona Heart Institue is a very orginized and responsive place . They took another Echo which measured my aortic root at 4.1 and also did a CT scan. We were going to meet with the Dr. again after test, but he got called out on an emergency surgery.

I will be meeting with hime tomorrow morning to review the CT scan test and set a date...Thanks again for all your input...I will keep you posted.

 

[ALCapshaw2]

That sounds promising Joe.

A common theme that I read from patients undergoing repeat or complex surgeries is to find a Surgeon who has Lots of Experience doing the Procedure that YOU will need.

IF I were in your shoes, I would want to know how many Aorta Repairs/Replacements (as opposed to Aortic Valve Replacements) this surgeon has performed and/or how many he performed in the last year, along with a measure of his success rates.

As I've said before, surgery of the Aorta is complex and another level above Valve Replacement Surgery. I seem to be a Lone Wolf on this issue but I cannot forget the compelling story of former member Oaktree who had to have a second High Risk Surgery (she was on death's door) because her first surgeon Botched her Valve Replacement and didn't seem to have the skill to repair her Aorta. You may want to read her story for yourself to gleen the details... or just ask this surgeon about his experience and results doing Repairs / Replacements of the Aorta.

I have also read posts from BAV/CTD patients who only had their valves replaced during their first surgery because their Aorta "did not meet surgical critera" at the time and then had to come back a few years later to get their Aorta repaired/replaced because of an Aortic Aneurism that had grown to where it now met the surgical guidelines for repair / replacement.

Again, if I were in your shoes, I would want to know this surgeon's assessment of your Aorta and what he recommends for addressing that issue.

'Al Capshaw'

 

[MIKE69]

surgery

surgery

I would first like to thank you for taking the time to read my thread. My name is Joe and I am 33 years old. I have just found out that I will be undergoing AVR and possibly replacement of aorta. My valve is a bicuspid congenital problem. My wife found this website so we thought we would try and expand our research. It seems that all arrows are pointing to a mechanical valve due to my age (but we are open for more information) as to prolong the next AVR. Does anyone have any stories on the recovery process?

My Surgeon believes he may be able to use a "Minimal Invasive" process where, if it is only an AVR and not aorta replacement, he can enter through the side of the breast plate and not through the chest cavity. My Surgeon, Dr. Riley said he is one of two surgeons doing this procedure in AZ where I live. Has anyone heard of this process?

My wife and I believe that I should come out of surgery fine since I am rather young, no blockage in arteries and fairly healthy, but I would like to hear of some things that I may not be told from my surgeon as far as side affects from the coumadin.

We just found out two weeks ago that I will need to have this surgery over the next month, so again thank you for taking the time to respond.

Joe

Joe
I just had th surgery I opted for vavle repair. I did not want to be on blood thinners early results the valve is better then before recovery is slow but it looks like you are having the less invasive surgery if you have questions please do not hesitate to ask

 

[brunoandbear]

Joe, if your ascending aorta is enlarging and you are faced with repairing or replacing your BAV - I would urge, if not insist to a surgeon to repair your aorta while he is in there.

I've met one person personally that had their valve replaced with a mechanical 20 years prior only to find out 20 years post that they had a large aneurysm which needed to be repaired. To me, having the possibility of a ticking time bomb developing (and if your aorta is already enlarging - it _will_ develop, you just do not know when), would create enough stress that would warrant it being addressed the first time around. I'm blessed to be even typing this paragraph - just 10 months ago I had a 4.65 cm enlarged aorta... in under 8 short months, it grew to 5.6 cm. If it weren't for a off the wall CT scan, I might not even be here recovering from my heart surgery to repair that aneurysm two weeks ago.

I don't mean to scare you, I'm just trying to share my own personal input and give you an idea of where I am coming from. 4.1 or 4.2 cm is not that large, in fact, it is quite small. You could go 5 - 10 years, or more before needing surgery. We don't know. But, what we do know is that BAV creates a weakened connective tissue of the Aorta which leads to its gradual degradation over time. Some exhibit this trait, others do not. If you are seeing enlargement now, you are most likely exhibiting this connective tissue trait. Do you possess other symptoms such as perhaps a hiatal hernia or acid reflux?

 

[needinfo]

Joe...
Welcome! I am 44 yo male and had an anyuresm repaired and a BAV replaced. I opted for a repair in plan A but the aorta and the valve were much worse than depicted on any tests. I now have a medtronic freestlye valve (and a newfound addiction to pork rinds). I was completely asymptomatic at the time of surgery, and "thought" I felt great. My surgery was April 8 in Birmingham Al and I am recovering nicely with only some minor setbacks. I plan on returning to work on 4/29. Like you I wanted to subject myself to the least pain possible and investigated surgeons who perform minimal invasive procedure. My Doctor advised against it for BAV and equated it to, in my terms, changing a piston through the oil plug.
I am in shape, and the recovery has been tolerable, with minimal pain (I was off meds day three in the hospital) providing I do what they say. I opted out of a mechanical valve simply beacuse I did not want to be tied to blood thinners, it is a personal option. Today, I will tell you the decision I made was the right one and I will not look back. It has not been a pic nic by any means, but when you hear you doctor tell you the echo was perfect for the first time in your life, it makes it all worth while.
Whatever you choose, Faith, Family, and a positive attitude will guide you through ( a little humor tossed in never hurts).
Tom