New member

[Peter Easton]

Whoops

Whoops

For some reason, the URL for the MyRossProcedure site didn't come out on the previous. Here it is again (hopefully):

http://members.home.net/myrossprocedure/

P.

 

[Mara]

Hi Alan-

Hi Alan-

Hi Alan. I hope you get to read this. It's buried here at the bottom of the posts.

I was born with a bicuspid aortic vavle and just had the Ross Procedure in July.

I saw Peter's post about MyRossProcedure.com. Be careful with that crew. It's kind of a pity party/Dr. Elkins fan club. I was leary of all the folks on there who had Elkins do their surgeries. I know he is a competent surgeon, but, I personally believe he has a personal agenda to "use" patients to become well known in the world. He compiles stats on surgeries, patients, mortality, morbidity etc. His nurse posts info on the site related to his surgeries and all the "great" work he is doing. Something about it smacks of Frankenstein to me. Plus, there are some folks on there who whine about how it is so awful they needed this surgery. (This is my personal opinion and should not be construed as anything else.) But, the site has great links to info on the RP.

There is/was a man on here from Toronto named Dan who just had Tirone David do his RP. Hopefully he will be back on soon.

I had the same symptoms that you listed. Fatigue and low exercise tolerance. No other symptoms to speak of.

The surgery seems daunting at first and is a big step, but I feel so much better than I have in years. If you are a candidate for the Ross consider it. It is a good operation.
Tirone David is one of the best.

-Mara

 

[alpage]

Peter,
I've read through most of the thread on "making the choice". One comment I really agree with is "find quite simply the best surgeon available". That's what I have tried to do as a first step. Unfortunately our Canadian health system only pays for U.S. medical treatment in very exceptional circumstances. That's not likely to be the case for me as any both valve replacement and Ross procedure are available here. That does limit my choices a bit.

BTW, in your last post in the thread you provide a link to a study comparing Carpentier-Edwards SAV and Hancock-II Porcine Bioprostheses. One of the authors, T. E. David (University of Toronto), is almost certainly Tirone David, the surgeon I hope to have operate on me.

While I am certainly reading up on the Ross procedure, I don't even know yet if I am even suitable for it, so I'm not getting my hopes up. I need the angiogram to provide further data. The surgery itself does carry some additional risk, so I would have to be convinced that the additional risk carries sufficient benefits. I will have to rely to a great extent on the surgeon. I will definitely be asking him the rationale for whatever recommendation he makes.

In conclusion, I'm still in the information gathering stage and haven't yet moved on to the decision stage. Except that I have made the decision to proceed with some surgical cure for my condition.

Alan

 

[alpage]

The 2% solution

The 2% solution

There has been discussion about the 2% (per year) risk of complications associated with mechanical heart valves and Coumadin. I have thought about it quite a bit. The 2% figure is not actually that straightforward. Suppose you follow 1,000 patients and you identify a 2% occurrence of complications. It's possible that each and every patient has the identical risk. But if half of them have a 1% risk and the other half have a 3% risk you will get pretty much the same overall results. So it would be important to know what factors affect the risk - valve type, age, control of Coumadin level, other health problems etc. The same way there are multiple risk factors for heart attacks, there may be multiple risk factors related to valve replacement that have yet to be to fully quantified.

In addition, how did they grade the severity of the complications? Are they only including serious, life-threatening complications, or are they (more likely) including any complication, as long as it was reported to a doctor?

If you find the math tricky to follow, try this example. A 2% risk is 1 chance in 50. So take a deck of cards and remove the ace of spades and the ace of clubs. Now pick one card from the remaining 50, look at it, then replace it. If you picked the ace of hearts, let that represent the risk of a complication.

The odds are cumulative in the sense that statistically the chance of you picking the ace of hearts at least once in 20 tries is much greater than the chance of picking it on the first try.

However, this assumes that the odds remain constant over time. This is probably better than your chances with cigarettes and cancer where your odds probably get worse over time as your lungs are progressively damaged. e.g. your chance of getting lung cancer the very first year you smoke is probably a lot smaller than the chance after 20 years of smoking.

Alan

 

[sylviayasgur]

cath?

cath?

hi alan!
when did you say you were going in for your cath? that will probably help you narrow down some choices. do you plan on doing it while in the hospital for the vr surgery or before? joey's surgeon recommended doing it a week (or even before) prior to his vr surgery so he could rationally think about options. (the surgeon we opted not to use had wanted him to do the cath the night before scheduled surgery!!). we liked having time to mull it over before the actual surgery.

also, as anyone here will tell you, if you feel you trust and feel confident in your surgeon, that's more than half the battle.
when joey and i met the second surgeon for another opinion, he was cold, removed and offered no alternatives or suggestions as to what might be best in joey's situation. joey felt that if he had to put his life in this man's hands while being so terrified, he would have been totally uncomfortable going into the surgery.

it really is important to go into it feeling good about this whole thing. this is what we did and i'm so glad we made the choices we made. remember that you have to be comfortable with this whole thing. it's a tough experience to begin with.
also, as others have siad on this forum, these qualified dr's do this so routinely these days. it's a good operation; a fixer.
please be well and God bless,
sylvia

 

[alpage]

Sylvia,

My angiogram is booked for Nov. 6th. It will be done by my cardiologist. He will then take all his findings and refer me to the surgeon. At my last appointment my cardiologist suggested that I was at the point that surgery would be required within the next six months and I certainly agreed. Had I said nothing else he would probably have referred me to a surgeon in the same hospital where he works (not Toronto General where Dr. David works). But I spoke up and asked him to refer me to Dr. Tirone David and he agreed to do this.

Having worked in the hospital system here (many years ago) I know more or less how it works. There is a waiting list for elective surgery, especially for the top surgeons. But once you are on the list there can be cancellations and you may get bumped up if your need is critical. The best approach is to get on the list in plenty of time, so I've factored this into my decisions. Fortunately my condition has been followed for over five years, so this is not a sudden surprise.

Alan

 

[Freddie24]

Hi Alan,

Just a quick note about being an American and having Dr. David do your surgery. Dr. David did mine this past May. It took about 6 months to get my insurance to approve the Canadian side of things but it's quite interesting to note that the price of surgery at Toronto General with Dr. David (something less than 20k) is MUCH less than the same procedure done in the US (MUCH more than 20k, sometimes close to 100k). It may behoove you to mention this to your insurance as I'm sure they would be quite interested to know that they would be saving money by covering a Canadian procedure. At least it can't hurt.

Good luck - Dr. David is the greatest!!

 

[alpage]

I'm Canadian

I'm Canadian

Freddie,

I appreciate the suggestion but fortunately I'm Canadian so it's not an issue for me. I am looking forward to meeting Dr. David as he seems to have inspired some very positive comments.

Alan

 

[sylviayasgur]

hi again, alan!
that's good to get the cath done ahead of time.... gives you some decision making time. also, as peter or someone else said , go with the dr of your choice. i think i mentioned that joey's cardio had recommended he see this surgeon at a prominent hospital in nyc and when we called to make the appt for consultation, he suggested we book a surgical date immed. (we did). problem was... he couldn't see us until sept. 7th and surgery was scheduled for 5 days later. this all happened at e/o july!!! so i did some research and found dr. stelzer on the web, booked a sooner consult with him (told him he was our first second opinion) and met him in early august. he too suggested we book surgery, just incase and he even said "you can always cancel". so we booked the same date as we had with the other surgeon....
make a long story short, thank God we took a flier and met dr. stelzer, because we immediately loved him and by the time sept. rolled around and we met the other surgeon, we disliked this other guy soooo much. the dr. makes such a difference, i think. go with your gut feelings. have you met dr. tyrone yet?
hope all goes well and please keep us abreast of your progress.
be well,
-sylvia