How to choose

[Richard L]

Hi

I'm 41 London based and born with a bicuspid aorta which has stenosed and needs replacing within next 2 months.

I also have Crohns disease- symptoms of which are intermmitant gastrointestinal inflammation and bleeding, so my cardiologist (at University College Hospital, London) has recomended against a mechanical valve in my case as long term dependancy on anticoagulants would probably worsen my GI condition. (My Gastroenterologist backs this up).
I've also gone for a second opinion with a cardio-thoracic surgeon based at Harefield hospital.

What all this is leading to is my choice of Valve replacement.
which are;-

- Single tissue valves either Xenograft or Homograft
- Ross Procedure
Or.....
A new option being offered to me by the surgeons at Harefield Hospital. - A Stentless Aortic Valve constructed from my own pericardial tissue treated for 10 minutes in Gluteraldehyde. based on a new procedure/ template pionered by Cardiomend LLC, a company based in Santa Barbara, USA.
Although pericardial reconstructions have been used before this is apparently the first Company to come up with a constitent reproduceable template & device for harvesting, shaping and fixing an aortic valve........ But it hasen't been tried before! - so I would be taking a risk.

I'm also very interested in the idea of an aortic Synergraft based on a cell depopulated homograft but this isn't being offered over here in the UK . Cryolife have just set up in Europe and have only had CE approval(Europpean Certification) for their Xenograft based Cryorpreserved valve.

Anyway how to choose- I don't know!
There are 2 points that are key to me
Firstly/
I'd want maximise the time between between my first operation and re-surgury which preferably would never need to happen...... but I have to be realistic.

Secondly
I want to be as sure as possible that any decision I make now doesn't adversely affect and limit my choices in X years time when the valve needs replacing.

The new Autologous Valve reconstruction seems to me to involve a lot less collateral damage than the Ross Procedure - but has no track record, however I have seen articles that imply that treating tissue with Gluteraldehyde increases the risk of calcification. but Can anyone confirm this?

My Doctors are quoting 10-12 years as an average life for Xenografts and homografts. is this realistic?

I can't seem to find a consistent estimate for the durability of a Ross procedure, either for the new Pulmonary Allograft Aortic valve, or for the replacement tissue Pulmonary Valve.

Any input I can get that helps me make up mind about which valve to go for is gratefully ppreciated, especially info on

- Autologous Pericardial Valves. Cardiomend LLC
- durability of Ross Procedures
- information & projections about the durability Synergrafts

Sorry if this was a bit long winded, but I have to admit it was also a bit of a rant, - frustration at not being able to get quality info to help me decide what valve to choose

Many Many Thanks

Richard
[email protected]

 

[hensylee]

Welcome Richard - you won't believe how many answers you are going to get within 24 hours - I didn't have valve replacement (had quad bypass) so can't help here. Except to welcome you to valve replacement. So many here have been through it and you will have much discussion coming your way - so just hang in for a bit and they will come. God bless

 

[Nancy]

Hi Richard-

Welcome to the site. You'll find lots of info here and friends who've been down the road you're traveling, or have a loved one who has.

There are several people here who have the Synergraft valve and several who have the Ross procedure, so I'm sure you'll get some first hand information on those. We have many members with xenografts and homografts as well.

My husband is the patient here and has had 3 valve surgeries. He has two mechanicals and had a repair on his mitral. So I can't give you information on any valves other than mechanicals. But I would like to ask you to do a search on this site for the following phrase "making the choice" and use the search option "ascending order" look for a thread by member Peter Easton with the title "making the choice". Peter did an extensive study prior to his valve replacement and there is a wealth of information there. It's a long thread because it generated lots of comments. You will find it useful, I think.

You have some complicated issues, and you will have to do some careful thinking. If it were my husband, I wouldn't want him to go for something experimental which had never been tried before. Just my opinion. I'd much rather see him consider a valve with some history and a proven track record.

I can tell you that each subsequent surgery that is performed carries it's own set of problems

I wish you well in your study.

 

[Marty]

Valve Choice?

Valve Choice?

Richard, Valve choice these days is tough. I am an MD (radiologist)
and I got confused. I told my surgeon to make the choice. I did ask him post op why he didn't do a mitral repair and he said my valve and the chordae tendinae were so damaged that a repair would be lucky to last two years. I then said why at age 72 ( over 4 years ago now) did he pick a mechanical St.Jude rather than some type of bio valve. He said this point was the subject of a discussion which included all ten heart surgeons on staff, nurse practitioners,etc. and by a close margin the St. Jude decision was made. He said even though I was 72 at the time I was in pretty good shape otherwise and could conceivably wear out a bio valve and need reoperation at 80 or 82.( this was the case for Senator Jesse Helms who did well after his reoperation). Managing coumadin is a minor inconvenience for me. However I agree you should not take it because of your inflammatory bowel disease.. So now we get down to the bottom line. How do you decide which valve you will get? The answer is you don't. Find a good surgeon you have complete faith in and....... let him and his colleagues decide.Its not your job.

 

[martha]

Hello and welcome glad you found us and are joining. As has been said the choice of valve is personal. I also had a bicuspid aortic and it turned into a stenosis. Had it replaced with a homograph. To be exact, I have a third generation homograph. There is no saying how long this valve will last. There have been some cases in europe where they have lasted for 20 years. My thoughts are, by the time I have to have to get a replacement, there will be all sorts of advancements. My surgery was done in 2000 at the age of 49. Good luck with you decision. martha

 

[ALCapshaw]

Hello Richard,

There is another valve option you did not have in your list, namely the Bovine Pericardial Valve. These are made from the pericardium of a Cow's heart and shaped into leaflets similar to the human valve. Carpentier-Edwards is the primary manufacturer of such valves.

Durability numbers I have seen are 90% at 15 years and counting. Durability seems to vary some with age, lasting longer in older patients, presumably due to lower blood pressures. It seems to be held in high regard by the Cleveland Clinic. Obviously other hospitals have their own 'valves of choice'. The Bovine Pericardial valve was MY valve of choice but my surgeon chose to go with a St. Jude mechanical once he opened me up. Sometimes I still wish he had given me the Bovine. So it goes.

'AL'

 

[Bunkenmeyer]

Crohns and valve choice

Crohns and valve choice

Hi -

This site really is amazing. I also have Crohn's and I am currently facing similar issues. I'm scheduled in December for an asending aortic aneurysm repair and valve sparing repair (hopefully) or replacement if necessary. Two surgeons and my GI (all very well respected) advised me that given my age (30) I am still better with the mechanical valve (if they can't spare the valve) even with the potential risk of additional complications should my Crohn's flare. Factoring into this decision is the fact that my Crohn's has been completely under control for about three years now - with no major flares only very occasional activity. I guess I'm gambling a bit that my Crohn's stays under control but do like the certainty of knowing I will not need another riskier surgery in 15 years.

I'm sorry I can't offer much advice with respect to your decision regarding a specific valve and I hope my post doesn't re-open a question you had comfortably resolved. I would really be interested in what advice you received. Is your Crohn's particularly active? Did your doctors immediately rule out the mechanical option or did they seem to think it was reasonable to consider but not the best choice for you specifically? Also, are there any other complications from the Crohn's that you've been advised to take into consideration (e.g. we probably can't take just any pain meds). I'm currently on 6-MP and Asacol.

Sorry for rambling and thanks in advance for sharing anything you've learned. Let me know if you have any other thoughts or concerns we can compare notes on.

-Bunkenmeyer

 

[srwieland]

Hi Richard and welcome to a great bunch of heart buddies who will help you tremendously through this whole process. No one understands better what you are facing and will go through than this group.

I was the first on this site to have a SynerGraft valve implanted. I did great afterwards for 8 months, then went through 6 months of problems to the point of being scheduled for resurgery, and then have miraculously improved to the point of doing relatively well again. So, as far as the SynerGraft choice is concerned, I think it has succeeded in my case, although my serious problems for a while there were probably those that one risks with any type of tissue valve: some structural failure due to inherent weakness, infection, or something like that.

However, the SynerGraft treated valves do promise to last longer than regular tissue valves.

Several others on this site have had SynerGraft implants since mine and all seem to be doing quite well. In fact, Mara not only had a SynerGraft valve but she also had it as the pulmonary valve implant for her Ross procedure, so she would be an excellent source of experience for you to draw on. I hope she reads this thread and chimes in.

Any valve you get these days will be much superior to what was previously available and the valve options in the future should only get better. The fact that there are a variety of good choices is a plus and a lot depends on your particular preferences, and those of your surgeon, of course.

I agree about the connection between valve choice and surgeon. You should look for both the best surgeon and the best valve choice for your preferences as a package. Never request a surgeon to implant a valve that he is not confident in and very experienced with. Also, never go with a surgeon whose preferred valve choice you are not comfortable with.

As far as the new stuff without much track record, I think I can speak on that pretty well, being a veteran of such a choice that has had mixed results. You've got to be prepared, more than normal, that something unforeseen will go wrong, in which case you may go through a lot of problems afterward, as I have, or even require resurgery. Some people are willing to risk more for a possibly better result, and others are not. If you wouldn't be willing to live with what might go wrong, don't do it, go with the tried and true. In my case, I think the gamble with the SynerGraft has paid off, but my problems are more the result of some structural weakness in one of my valve leaflets that emerged after implant. But, who knows? (Unless they reopen me again to find out, of course!)

Hope this helps.

Best wishes and Godspeed.

 

[Richard L]

Apologies

Apologies

Hi everyone

Thanks for your replies. please keep sending them.

I'm having technical trouble posting a reply. Hope to have this resolved soon.

This is just a test post

Richard L

 

[Hank]

testing

testing

testing the reply option in this thread.

 

[Richard L]

Hi everyone
Sorry about not replying I'm still having problems posting to the thread this is about my 5th attempt!. Please please keep your advice & comments coming they are all amzingly kind and really helpful

Hi Bunkenmeyer

I?ve been diagnosed with crohns since 1990 but probably had it since 1980 when it was mis-diagnosed as IBD. I fluctuate between periods of flare-up & relative calm but am never totally symptom free. Fortunately I am not so severe as to have needed surgery. I?ve been on various steroids which I reacted badly to, and also non steroidal anti-inflammatories (Asacol, Mesalazine, Olsalazine, balsalazide, Azathiaprine to name but a few!!) which were also relatively ineffective or caused adverse reactions) I?m currently drug free apart from the occasional dose codeine phosphate to deal with the pain when it gets to bad & to slow down my guts. I?ve found that managing my diet has been more effective than drugs.

My cardiologist recommended against a mechanical valve as he had bad experiences of patients with Inflammatory Bowel disease who had mechanical valves who subsequently reacted badly to anticoagulants (AC?s).
I suggested that he pre-test me on AC?s to see if I could tolerate them but he felt that this wouldn?t be conclusive as in his previous cases he had pre tested a patient who had tolerated Ac?s for about 3 months prior to surgery but 9 months after having a mechanical valve, developed severe GI bleeding to the point where they had to swap the mechanical valve back out for a tissue valve in order to cut out the need for Ac's. He therefore felt that a tissue option was my best alternative and that A Ross procedure was a possible next best option in terms of the longevity before the need for replacement. He did however seem to have some doubt about this and described as a 'best compromise solution'.
My Gastroenterologist also agreed that a lifetimes dependence on AC?s was too risky

This isn?t a huge sample on which to make any definite assumption and you may well be more tolerant of AC?s and respond differently. I really hope that this doesn?t cause you any angst, and suggest that you also get your Gastroenterologist input if you haven?t already done so.

I?ve also been trying to find a course of action which avoids re-surgery in 15 years time & I?m hearing mixed reports about the longevity of different valves. I suppose I?m hoping as Martha points out that by the next time I have surgery tissue valve technology will have advanced to the point where we will need no further re-op.

Good luck & keep in touch. Let me know how you get on
Richard

 

[Richard L]

Hi Marty

Thanks for your advice. I suppose I'm a bit if a control freak and like to know whats going on, and I've also built up a healthy? mistrust of doctors based upon mine and others past experience. (This is probably very unfair of me)

Over here in the UK I like most people go through our National Health Service for health care (Private is available but very expensive and you don't necessarily get better medical advice for the serious stuff i.e. Heart surgery it just gets you to the front of a queue especially for minor treatment.) But you also don't usually get the choice of surgeons. You are committed to a referal from your GP who is restricted by budgets catchment areas, contracts etc.... in other words politics!.
I've already bent these rules by going directly to Harefield Hospital for a second opinion!

What constites a good Surgeon?.
It is impossible to get comparative information on doctors and Hospitals here in the UK. the information is not published although this is likely to change in the future. You have to ask each surgeon directly for his results. (Also statistics don't account for the relative difficulty of each surgeons caseload)

Professor Dreyfus at Harefield has done around 50 Ross Procedures which does not appear to be alot comparatively but has only had a problem with one of these so far which required him to re-operate an put in a replacement tissue aorta. He hasen't yet had any fatality's

Mr Tsang at University College Hospital (UCH) London (Surgeons in the UK are called "Mr" for some obscure historical reason!) has on the other hand performed many adult and Peadiatric Ross Procedures over 150 but doesn't offer the valve reconstruction option.

Harefield is considered to be one of the top Heart Hospitals in the UK. UCH has about 18 months ago aquired some of the most modern Cardiac facilities in Europe and is also highly rated.

Anyway enough ranting from me,.... although its good to talk/type!


Richard

 

[sylviayasgur]

hi richard!
welcome to this site. i've been away on vacation and just got back and noticed your post. this is just the most wonderful place to come for support and advice and just plain old hand-holding.

i'm sorry you have to deal with all these additional concerns on top of your avr. did your cardiologist or surgeon mention, by some small chance, that you may end up taking anticoagulants anyway after surgery? my husband, joey, as i've heard from several others here, went into afib a few days post surgery and had to take coumadin as a precautionary measure for about 6 weeks. he is now slowly being weaned off amiodarone (which has controlled the afib), but if he opted not to take antiarrhythmia meds he would still be on the anticoagulants.
many folks do that.
just something to consider.....

i don't think that _and we all wish we could control and predict exactly what the longevity of each of these valves would be_ any of these avr's are necessarily guaranteed; even if the statistics say so. how many times have we heard of a recall on a mechanical valve or a ross procedure that didn't hold up or a tissue valve that started leaking prematurely? i'm not trying to frighten you or be pessimistic, but please try and realize that any and all of these choices are great ones. i realize that ac's are contraindicated in your particular case, but in the end, the choice you will make will most probably be the right one for you. you'll see.

i'm sorry i couldn't help more with odds and stats, but as you mentioned (and others too), a surgeon friend of joey's told him that by the time he needs to go under again, they will hopefully be able to clone his valve and use that! from his lips to God's ears!
wishing you all the best of luck. please keep us posted on what you decide.
stay well, sylvia

 

[Kevin M]

Based on secondary research gathered by a bunch of us last year, the following that is relevant to your situation:

-At your age, you'll burn out a stented porcine valve within 10-12 years.
-There are now stentless porcine and bovine valves which are supposed to last longer, but as of last year, there was no conclusive long term research that supported or conflicted with this.
-A lot of the research we found on the Ross Procedure at the time was contradictory. Some suggested the procedure could last for a good long time (20+ years) - some suggested it would only be as durable as the stentless biologicals.

I guess with Crohns, they wouldn't want to give you a mechanical valve due to potential bleeding complications. The mechanical is your best shot at not having to deal with any futher heart valve replacements, however, if they feel there are large risks due to your propensity to bleed with the Crohns, they probably don't want to recommend that.

If you are interested in reading a lot of boring and sometimes undecipherable snippets of research taken from many different sources, I would be happy to send you a giant MS Word file that compiled a lot of research that I had collected throughout this endeavor. Email me if you would like it sent to you.

Best of luck in making your decision, but I'll say to you what I tell myself - "Making The Choice Is Agony, but at least the choices all allow me to lead a relatively normal and comfortable life".
Kev

 

[Jean]

Hi Richard. I may not be a good one to offer my comments because I am so happy with my homograft. AVR replacement almost 3 years ago now and feel better than I have since maybe in my late 30's...20 years ago.

Definitely not scientific data, but I have a friend with a 19 yr. old porcine valve(the person is now 79). And both my home cardio and the cardio and surgeon at the Cleveland Clinic felt the future for bios would be improving. My cardio says that in his experience the newer bios that last 3-5 years with no problems seem to be doing a lot better around the 10- 15 year life than the older ones. I have read of some being expected to last into the 20 year spans and perhaps on.

But who knows...it is all the luck of the draw and your own circumstances.

Good luck with whatever you choose.

 

[medtronic of borg]

well....

well....

After I read your note I jumped down here to drop in my two cents worth as a former RN, that has CHD. Relax, this is why you (we) payed the Dr's as much as we do. It is there call, not yours. The skills required to have a succesful surgery, is in their hands. Litterally. The only question you need to ask since they offered new stuff is. Have I ever gone skydiving with a newly designed shoot? Or, took my handmade bungee cord out for a dip? If you answered no to both...think you should stick with the tried and true.