Anybody know anything about the double-switch Ross Procedure?

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delvalle6

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Aug 1, 2006
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vancouver, wa
I just had ANOTHER evaluation for my son's AS. He has a bicuspid aortic valve which in stenotic and insufficient- leaking from two different sites. He has enlargement of the aortic root and left ventricle enlargement.
He is seven years old now. It's been the seven year roller coaster that I don't see an end to. Anyway-
They take the Aortic valve, do a little "plastic surgery" to and and turn it into a tricuspid. Then they put it in place of the pulmonary valve. They take the pulmonary valve and put it where the aortic valve goes. The take a little bit of the root off, sew it up and re-inforce it. There is a CHANCE that if this works that both valves will grow and it COULD be his first and last surgery. I haven't found any statistics on this procedure. Should I get my hopes up? Surgery is in the near future now... What do you guys think?
 
Hi
My son has a BAV and aortic stenosis as well as LVOT obstructions. He is having surgery on Nov 7th. We had a lengthy discussion with surgeons and cardiologists about the Ross-Kono procedure. The double switch option was never mentioned.

BUT

We were told that recent studies suggest that the Ross should not be done in patients with BAV disease - which is indicated by a BAV and connective tissue symptoms (like enlargement of the aortic root).

Apparently, in these cases the pulmonary autograft in the aortic position is more likely to fail prematurely. The card told us that the aortic root enlargement and the nature of the tissue in these cases both lead to extra stress on the replaced valve.

This IS controversial but not something we chose to risk. There are still many surgeons who would consider the Ross-kono with a homograft in the pulmonary position to be the best option for your son. I have heard nothing about this double switch surgery but I can see why it is appealing!

It is tempting to think of a single valve replacement for life but I would ask a few questions of your surgeon(s) and seek second opinions before proceeding. Also, if you can find a strategy to last the next 10 years we are likely to be in a new era of valve replacement. For instance, where stem or bone marrow cells can be used to 'build' native aortic valve replacements (as is already being done in Japan with pulmonary valves I have been told).

While mechanical valves and Coumadin sound bad, we are considering this as our backup if my son's valve cannot be saved at his coming surgery.

Would you mind sharing where your son is being treated? We are in Seattle and have consulted Seattle Children's, Tacoma, and LPCH in Stanford. Dr Hanley will be doing my son's surgery.
 
I don't have any words of wisdom for you, but just wanted to know that another heart mom was sympathizing with you. No parent should have to make these life and death choices that we have to make for our children. I don't know if the roller coaster will ever end. I'm pretty happy now as long as their are no stomach dropping descents.
 
Have you looked at the Bicuspid Aortic Valve Foundation website?
That may be another good source of information.

I also recommend browsing through the VR.com Bicuspic Aortic Valve and Connective Tissue Disorder Forum. New studies show a high correlation between those two issues which can have impact on Valve Selection and procedures.

Good Luck making these serious and important decisions.

'AL Capshaw'
 
I don't have any advice other than it sounds good to me...... I just wanted to say "hi neighbor", I'm just down the river from you, near St. Helens, Or.

I am curious to know what hospital and surgeon you are considering? Best wished to you. My prayers also.
 
We've been to Doernbecher and now Legacy Emmanuel. I am leaning towards the Legacy Emmanuel. I want to look around though- I've considered flying somewhere. I don't know where yet though. I've had a lot of bad experiences with Doernbecher, although, the last cardiologist there seemed nice. I'm setting up an appt with the surgeon to discuss this procedure more. He will be in the states in December. I can't remember his name, only that he was directly trained by Dr. Norwood at CHOP.
Anyway, I appreciate your answers, I am still hunting for info. I'm not sure what to think- all we've ever heard is Ross-Kono, Ross-Kono.. no one has ever given us any other options until now. I've had mechanical mentioned a few times, but then they say coumadin therapy and I just think no way. Not at seven years old. I work in the ER and get the elderly people who can't stop the nose bleeds- and all they did was sneeze. What would a basketball do? Anyway, I'm beside myself with all this. After I make this decision, I have to figure out how to come up with my 20% copay. But I'll think of that later. Anyway, I get a lot out of reading the posts here. I don't post often, but I read... thanks.
 
Ross Kono procedure

Ross Kono procedure

Hi just joined this forum. We just found out that our son, Landon (5) needs to have a second surgery. This time for aortic stenosis. Our cardiologist is suggesting this same procedure except he said they would open the aortic outlet, take the pulmonary valve put it in place of the aortic value which is leaky and then put a cadaver pulmonary valve in place of his pulmonary valve. We will be returning to LPCH and dr. Hanley will be doing the px. He did his first one in 2003 (VSD). I'm just beginning my research so am looking forward to hearing about your experiences. Best of luck with your son's surgery. We will probably be down there within the month.
 
Wow. A second surgery? Well, I've been doing my research. There are very few surgeons in the states that do the double Ross- the only difference between the Ross Kono and the double Ross is that instead of the Cadaver valve for the pulmonary site they take the diseased Aortic Valve and repair it- do a little "plastic surgery" on it and put it in place of the Pulmonary Valve. It is then an autograft and there is an opportunity for it to grow. It may not be my son's last surgery, but it will at least extend the time between surgeries- maybe at least long enough for newer technology to come along. I've been doing ALOT of research and I like what I am seeing. Good luck with your son's surgery too!
 
Hi just joined this forum. We just found out that our son, Landon (5) needs to have a second surgery. This time for aortic stenosis. Our cardiologist is suggesting this same procedure except he said they would open the aortic outlet, take the pulmonary valve put it in place of the aortic value which is leaky and then put a cadaver pulmonary valve in place of his pulmonary valve. We will be returning to LPCH and dr. Hanley will be doing the px. He did his first one in 2003 (VSD). I'm just beginning my research so am looking forward to hearing about your experiences. Best of luck with your son's surgery. We will probably be down there within the month.

Welcome Scrappergirl! I'm glad you found us as you do your research. You may want to start your own thread in pre-surgery. Best wishes to you and Landon. I know you will find lots of support here from other "heart parents".
 
My younger son had the Ross-Konno when he was 5 months old - Dr. Jonas was at Boston Children's then (2000 - we travelled there) and is now at Childrens in Wash. DC.

His donor pulm. valve was apparently from a small women. Due to the valve size primarily (becoming restrictive to flow), we are starting to talk about it's replacement in about 5 years (14 years old). Not bad. But if it was growing it would only be it's performance we would be considering.

It was always considered that, with the Ross, the donor pulmonary valve can become very leaky and still be tolerated well by the patient (unlike a leaky AV). The possibility of a "double Ross" more or less ensuring that valve will grow is very interesting. It does add a step to the already two step Ross, but two growing valves is great.

The Ross was my first choice until my surgeon took a look inside (the day of) and then went with choice #2. I am a fan of the Ross but it's not something every surgeon has done - not to mention a "Double Ross". I would definately try to reach a surgeon or two that has done this more than a couple times. They are out there for sure.

Best of health to your sons delvalle6 & Scrappergirl
 
I know its getting close to the date. Im going in the same day. When I looked into the Ross for myself Dr. Stelzer mentioned the Cryolife synergraft decellurized PV.

http://www.cryolife.com/products/synergraft-technologies

There is hope the valve will serve as a scafhold for native cells in the PV position.

I wrote them and they are very wiling to discuss this technology.

Best wishes, my prayers are with your family.

PS. Im not a medical professional or a doctor. My comments in this forum are my opinion and are not intended to be taken as medical or professional advice, or as a recommendation of valve choice.
 
Unfortunately, my understanding is that the results of Ross-type procedures seem less promising for candidates who have early-onset tissue disorders like your son. Postings on the site seem to indicate that in those cases, the transplanted valve often doesn't hold up to the new usage for an extended time. Those results seem in tune with discussions on bicuspid valve sites.

This type of surgery is great when successful, but if it fails to hold up, the future holds resurgery and other compromised valves. Please avail yourself of as many sources of information as possible before moving forward with this procedure.

It's a terribly difficult and wrenching thing to be so fully and inescapably in charge of your child's immediate health, and I feel for you in your situation. I hope you have lasting results from your choices.

Best wishes,
 

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