methylacrylates allergies and mechanical valves

[drivetopless]

I see my cardio in Jan, so depending on results it may be time for the surgeon consult. I'm in Atlanta, so I will likely have consults with someone here (Emory) or Birmingham (UAB Medical). I'm also in Chicago a lot, so there is a possibility, too. Cleveland Clinic is a possibility if I don't get satisfactory answers. Thanks for the suggestion.

 

[catwoman]

drivetopless:

You can get a second opinion via e-mail from the Cleveland or Mayo clinics, I believe. Don't know how much it costs.
Several here have gotten second opinions from either of these two hospitals. Because the Cleveland is the #1 heart hospital in the U.S., I'm sure doctors there see lots of unusual cases. That's why I would consider a consult.

 

[Lily]

I see my cardio in Jan, so depending on results it may be time for the surgeon consult. I'm in Atlanta, so I will likely have consults with someone here (Emory) or Birmingham (UAB Medical). I'm also in Chicago a lot, so there is a possibility, too. Cleveland Clinic is a possibility if I don't get satisfactory answers. Thanks for the suggestion.

Thinking about Catwoman's reply, perhaps you could email some of these [extremely experienced] surgeons and ask them about the allergy situation. I recall reading here in years past that some of the members have had success with emailing specific surgeons with specific questions. Nothing ventured, nothing gained?

Also, as I've read your posts and the other comments, I have remembered one of my friends (who has suffered with a bad cancer and the horrible treatments), and she is evidently very allergic to something in the PET scans, that she periodically gets for followups, making her ill for weeks. What a continuing ordeal for her.

 

[ALCapshaw2]

Shoot, Ross. You've definitely pointed out the elephant in the room. Maybe a valvuplasty until and alternative can be found?

***
I would really like to go with the latest/greatest technology if possible. ***

I'm hoping since the acrylates are in the polymerized form (vs a liquid) that the effects would be negligible.
But I do think I need to investigate thoroughly and ask for some kind of compatibility test before I let anyone put one in me.

A few years ago, for reasons which differ from yours, I conducted a Search for a Valve which would give me the Best Chance of NOT needing replacement and a Low Propensity for Clot Formation, especially If and When it were necessary to go OFF Coumadin for (other) Invasive Procedures (since I already have a Mechanical Aortic Valve and am on anticoagulation medication).

What I learned from that search is that "the Latest Technology" in Mechanical Valves comes from On-X.

Living in the SouthEast, I then searched for Surgeons with Experience using that valve, at some of the same Hospitals you mentioned. Here is what I learned from meeting or otherwise communicating with Surgeons in the area.

Emory University Hospital in Atlanta is the sponsor for the No/Low Anti-Coagulation Studies with the On-X Valves so their surgeons should all be familiar with those valves. I believe Dr. Puskas is the head of CardioVascular Surgery at Emory.

Another Atlanta Surgeon that uses On-X is Dr. Wolfe at Peachtree CardioVascular. I think he operates at St. Joseph (and perhaps another hospital as well). He is a highly regarded surgeon that has been used by some of our members.

At Cleveland Clinic, Dr. Petersson is the highest user and a strong proponent of On-X. He is one of the most highly regarded surgeons in the world from everything I read and hear. (I only know of Dr. Petersson from reading the numerous glowing accounts posted by his patients who are also members of VR.com).

Dr. McGiffin at UAB has used a few On-X valves at patient request. Dr. Athanasuleas (sp?) who recently joined UAB (2? or 3? years ago) from another Birmingham Hospital has more experience with On-X and is a proponent.

As I mentioned in an earlier post, when I asked my contact at On-X about Methyl Acrilates for you, they reported None were used in their valves. I'm sure they would be happy to work with you to determine if there is any contact with M.A.'s in the manufacturing process.

'AL Capshaw'

 

[dl_mooney]

I agree with Al Capshaw think the On X might work.Like he said check with that Hospital in Alanta ,etc. Best wishes are comming your way.

 

[Lily]

I know this is going to sound ridiculous, but it sounds like that allergy calls for ridiculous measures. I think I wouldn't take anyone's word for it if i were in this position . . . It sounds like your allergy is so serious that I would hate to see you or the manufacturer be wrong about anything even coming in to contact with your allergen during the manufacturing process.

Since my last post in this thread was abruptly deleted perhaps I'll just echo this excellent point.

 

[drivetopless]

Thanks, all. I"ve printed this thread for my file and discussion with my doctors. Al, thanks for the doctor's names. I will definitely consult with them. I will take you up on connecting with your contact at ON-X. Could you introduce me or email a name/number. I intend to get very involved in the next few months in the investigation/selection of my valve and of the materials that may be used in my surgery.

 

[ALCapshaw2]

Thanks, all. I"ve printed this thread for my file and discussion with my doctors. Al, thanks for the doctor's names. I will definitely consult with them. I will take you up on connecting with your contact at ON-X. Could you introduce me or email a name/number. I intend to get very involved in the next few months in the investigation/selection of my valve and of the materials that may be used in my surgery.

My contact at On-X is Catheran Burnett, RN,
[email protected] or 888-339-8000 ext. 265

She has over 20 years experience in the Valve Business as a former Heart Surgery Nurse (at Baylor) and worked for CarboMedics and St. Jude before joining On-X. She "knows her stuff" about Valves and OHS!

 

[drivetopless]

Thanks, Al. YOu're the best.

 

[drivetopless]

Looks like I'll be talking to Dr. Wolfe and others in the next month. It's time.

 

[drivetopless]

I spoke with Dr. Wolfe yesterday and he though I was really cool 'cause I knew all about the ON-X valve already. He didn't seem to think avoiding acrylates during surgery would be an issue.