Freaked out, told to make a decision in a week!

[ALCapshaw2]

Before getting a Catheter Placed Tissue Valve, I would want to know how the Effective Diameter compares with the Original Valve (since the replacement valve is being placed INSIDE the original valve).

I would expect a Lower Effective Diameter (and higher Gradients) and therefore LESS Blood Flow which would limit your exertional output (i.e. athletic performance). I've seen LOTS of enthusiasm for Catheter Replacement but few seem to want to contemplate or discuss the impact on output limitations.

'AL Capshaw'

 

[Lynlw]

Buff, I'm glad to hear from you. my son also has pulmonary valve problems, before his last surgery, we looked into the melody trials, but he ended up not needing a new valve, just section of his conduit so had his 5th OHS. I'm glad to hear you're doing so well

 

[Lynlw]

Before getting a Catheter Placed Tissue Valve, I would want to know how the Effective Diameter compares with the Original Valve (since the replacement valve is being placed INSIDE the original valve).

I would expect a Lower Effective Diameter (and higher Gradients) and therefore LESS Blood Flow which would limit your exertional output (i.e. athletic performance). I've seen LOTS of enthusiasm for Catheter Replacement but few seem to want to contemplate or discuss the impact on output limitations.

'AL Capshaw'

Actually its been discussed several times, Right Now for a first time valve replacement, the opening area of a percutaneous valve is larger than a sewn in valve, because it doesn't have a sewing cuff that takes up room just leaflets sewn onto the stent.. For valve in valve there isn't a much smaller opening, if any, since the old leaflets are smushed flat and the wire stent doesn't take up very much space and depending on the valve, most likely the stent could expand the graft or compress inside the sewing sewing cuff of the older valve slightly wider like like regular stents do with dacron conduits now. Who knows what it will be like when someone getting a valve right now , at this time, needs to have it replaced.

 

[Jkm7]

Before getting a Catheter Placed Tissue Valve, I would want to know how the Effective Diameter compares with the Original Valve (since the replacement valve is being placed INSIDE the original valve).

I would expect a Lower Effective Diameter (and higher Gradients) and therefore LESS Blood Flow which would limit your exertional output (i.e. athletic performance). I've seen LOTS of enthusiasm for Catheter Replacement but few seem to want to contemplate or discuss the impact on output limitations.

'AL Capshaw'

I think you need to factor age into your consideration as well as otherwise general health.

If one is 50 years old, it is quite different than if they are 80.
There is no 'one size' fits all approach to making this choice.

 

[buff_butler]

Before getting a Catheter Placed Tissue Valve, I would want to know how the Effective Diameter compares with the Original Valve (since the replacement valve is being placed INSIDE the original valve).

I would expect a Lower Effective Diameter (and higher Gradients) and therefore LESS Blood Flow which would limit your exertional output (i.e. athletic performance). I've seen LOTS of enthusiasm for Catheter Replacement but few seem to want to contemplate or discuss the impact on output limitations.

'AL Capshaw'

I think thats a good question and I'll ask my doctor next time I see him. I am curious what will likely be next after this valve wears out say in 10 years - ie. if they will be able to do another melody valve or if i'll need OHS. I'm assuming the later.

 

[Gail in Ca]

I sure didn't know that it would take an additional 3-4 hrs in surgery to get thru the scar tissue of my previous 2 OHS. Most people here don't mention that fact.
I am hopeful that I never need a 4th surgery. I think it would be pretty risky. My 3rd was a 12 hour surgery, to replace AV and repair MV.

 

[scott.eitman]

I did not have a chance to read all the post in this thread. The one thing I will add the scar tissue concern is to make sure you find a surgeon who is experience not just in valve replacement, but in redoing them. Meaning experienced in more difficult surgeries.

 

[SinJun]

So it has been a bit since I have commented on my original post. I have talked with the surgeon again, my mom has flown in from Michigan. We have decided to go with a Ross procedure. Now trying to navigate red tape with the HMO. Just got off the phone with the HMO, medical group. The surgeon sent the referral over but the HMO says it hasn't been marked "URGENT" as he said it would be. So they have seven days to just look at it. My general practitioner is out of town for two weeks, so hard to get him to help push this along. It seems that everyone in the bureaucracy is living down to their position. I hope the red tape is cleared up before it kills me.

I am looking forward to having the surgery in LA at one of the more prestigious hospitals. I am hoping that I like talking with a new surgeon more. I just can't wait for very long. Again, I go back to a nervous mode. At least the choice has been made on what to do.

 

[Jeff Edmonton]

It is a tough time deciding what to do with so many unknowns.
New technology scares me when it has not been completely approved and is still going through trials. I worked in a hospital where a surgeon brought a trial lung patch through the back door and implanted it on a patient, he coughed it up 4 days later.

Cath. implanted stents are also no where near as effective as bypass.
Even with all the hype on the ON-X valve, I could not bring myself to select it over the SJV which has over 30 years for field studies.
Good like on your choice and may the Gods be kind the day of your sugery.

 

[Bill B]

If you are serious about the Ross procedure in L.A., Vaughn Starnes at USC would probably be at the head of the short list. Hopefully you can get an immediate referral to him or maybe you've already moved beyond that.

http://www.cts.usc.edu/facultystaff-vaughnstarnes.html

 

[SinJun]

I have been referred to Dr. Starnes. I am excited that I have an internationally renowned surgeon that I am waiting on to do the surgery. I am just frustrated that now I am WAITING for my surgery, that I was told two weeks ago was urgent. The "rock star" surgeon thing is a catch-22. I went from a doctor that I wasn't connecting with but was ready to do the surgery with a mechanical valve the next week to now things being postponed 3 weeks or more and starting to feel more fatigue.

After sending the authorization from the HMO, the records from the cardiologist, first surgeon, surgeon from '98, I have done a ton of leg work to get all the paperwork in Dr. Starnes office as quickly as possible to expedite the situation. I was called last night, yep Friday night at 9:30 by his personal assistant to say she has all the paperwork, she will call Monday or Tuesday to set up the consultation. I am hoping that from consultation to surgery will be rather quick, but now this will be in his hands. From his reputation I am feeling much better about this and the Ross procedure.

 

[dick0236]

Sounds like a good plan to me:biggrin2:. Good luck and Godspeed:thumbup:

 

[Jason]

Sounds like you have a good plan and a great surgeon in place now. I hope the wait is short for you to surgery, as well.

 

[sylviayasgur]

hi sinjun,
i think most of the anxiety starts with the not-knowing. which valve, which surgeon, etc.
valve choice is a very personal one_ as others have stated. there is no wrong choice, by the way. each is life-saving.
now that you've made your decision on valve and surgeon, you must feel so much relief.
please let us know when you will be meeting with the surgeon and how it goes.
good luck, be well,
sylvia