New Member, need AVR info

[Patrick]

Hello everyone,

My name is Patrick and following a recent echo and cath, my cardiologist is recommending AVR no later than 30-45 days. He says effectively my stenotic bicuspid aortic valve is calcified to the point that it is no longer functional, I also have significant regurgitation related to the AV coupled with enlarged left ventricle.

So its seems I have a limited amount of time to make a decision regarding valve type and Cardiothoracic surgeons.

I have obtained a consult with Dr. Colvin at NYU next Wednesday, I?m submitting records to Dr. Svennson at Cleveland Clinic and a local surgeon in Greenville, NC Dr. Chitwood for consult appts.

I?m a self employed 41 year old male, so the minimally invasive procedures that NYU and Cleveland offer interest me.

I?m not concerned with coumadin so mechanical valves seem fine.

I would appreciate anyone?s thoughts regarding the above or referrals to other surgeons and facilities.

I would like to thank all the posters on this board, the information that I?ve obtained has been immeasurable and reassuring.

Thanks in advance,

Patrick Owen McCullough

 

[EVELYN]

Welcome to a wonderful place, Patrick. I'm Evelyn, whose husband, Tyce had AVR with a mechanical St. Jude's valve in June. We went with a mechancial because neither of us wants to do this again if possible, our regular cardio said it was the way to go because of Tyce's age, (59) and lastly because the coumadin was not and still continues not to be any issue.

Tyce had his surgery at St. Francis Heart Center in Roslyn, NY. Our cardio-thoracic was Dr. James Taylor. He has been at St. Framcis about 16+ years doing just what he does best, hearts. He does an average of 3 surgeries a day, 5 days a week, and that's all he does. From Tyce's cath, which was done there, to his AVR, we felt nothing but comfortable. The hospital is impeccably clean, well staffed with extremely knowledgeable people, and a place where you can ask the same question a million times and get an honest, patient answer. Dr. Taylor was wonderful, laid out all Tyce's options, told him what the % of recovery etc. was etc. My best friend works for a legal firm that does medical malpractice insurance for self-insured hospitals....in other words, she knows who NOT to use as a physician. When I asked her to find out about Dr. Taylor's reputation, her word to me was "impeccable!!!" Very impressive, at least to us.

I noticed that you were from NC and were looking into Cleveland, etc.....all very great places. However, if you are interested in coming to LI and the traffic, I would be more than happy to give you his number, etc. Just let me know.

I'm sure you will make the right decision.....so glad you've found this list, it's the best. Making the decision you are doing right now is absolutely the most difficult thing to do. Once that is done and you have your date, all else falls into it's place.

Evelyn

 

[KristyW]

Close to home?

Close to home?

Patrick,

Have you thought of staying closer to home than Cleveland or NYU? Duke has an excellent record on all cardiac related surgeries and procedures.

Just a suggestion.

 

[Creed3]

Hi Patrick!

Hi Patrick!

Welcome to this great site! I am from VA and I had my surgery done by Dr. Svennson in Cleveland. I was told by a cardiologist at Thomas Jefferson that he is one of the best in the world to do Aortic Surgery. That is all he does. I know he used to be at Baylor's (I think that is spelled right) in Texas and he was wooed away by Cleveland. He has been at Cleveland for about a year or so now. I had an aortic dissection along with an aortic valve replacement. The whole surgery took about five hours. Only 1 1/2 of the hours was actually working on the heart itself. The rest was all the prep work, heart lung machine, spreading the ribs etc....and closing. I know there are other hospitals out there known for excellent work, but I can't say enough about Cleveland. Like I said before, my doctor (2nd opinion) in Philadelphia told me in confidence that if it was him or someone in his family he would want the best you could get and he suggested Dr. Svennson. I don't really know that much about any other doctors. I was kind of ambushed with my whole situation. I only found out about my problem in August and had my surgery in late September. I hope this information will help you. Good Luck with everything and take care!

Creed3

 

[Patrick]

Thank for the fast responses Evelyn, KristyW and Creed3

Thank for the fast responses Evelyn, KristyW and Creed3

Thank for the fast responses Evelyn, KristyW and Creed3,

KristyW,
Your correct Duke is a fine facility I have a past intimate knowledge due to one of my parents Bypass there surgeries in 1995.
They are on my list to evaluate.

However I'm not clear about their ability to do Minimally Invasive AVR.

Evelyn,
I've never been to NYC, so any advice regarding LGA airport and transport to my hotel on Park Ave. would help my flight arrives around 3pm. It appears that NYU is a short Cab ride from Hotel. I'll also look into the Dr. and Hospital you suggested.

Creed3,
Thanks for the info on Dr. Svennson and Cleveland I hope to meet with him soon.

Thanks,

 

[Mara]

Hi Patrick

I can't say anything about minimally invasive surgery. I had the Ross Procedure.
But, I think your right in checking out all your options.

Just out of curiousity, what about the minimally invasive is so attractive to you? I have heard so little about it and it was never suggested to me as an option.

Good luck with your search. Hope it all works out the way you want.

 

[alicia]

Hey Patrick, I just sent you an e-mail (hope you got it) I had minimaly invasive surgery and it did cut down on recoup time. They made an incision in groin and under breast and repaired my mitral valve with the assistance of the Davinci robot. Just went to Duke to see if I needed replacement with artifical valve as Dr Chitwood wanted to do but Dr Bashure said no leakage is much better just mild now and surgery is not needed. Didnt know it would be an issue so soon (only a year 1/2 sicne repair) Dr Chitwood has been on discovery Health several times talking about and following him thru this procedure. I loved him and his staff and Im not sure whether if I had to do it again I would probably have not used the robot. Just my opinion.

 

[Granbonny]

Hi Patrick

Hi Patrick

New Bern is near coast? and Duke? Raleigh?..I would suggest to try and stay as near as home as you can..You will not be wanting to travel far when you are dismissed from hospital...about 6-7 days post-op....You will want to hurry and get home and crawl into your little nest..for a nice recovery period...about 6 weeks.Please take time to read our threads on pre and post surgery. Lots of good info..like what to take to hospital and what to have at home when you return....I had mine at St. Joseph's in Atlanta. Great Hospital and great Cardio Surgeons...I'm 6 months post-op and feeling great. Bonnie

 

[Kevin M]

Just to clarify.
Minimally invasive surgery in the case of a AVR still means an incision through the sternum. It is not the same routine as is done for some valve repairs.

They still go through the breast bone, but the incision isn't as large as the traditional one.

When I looked into it, there was little research that I could find that made it sound attractive. Nothing I found suggested that it had any dramatic effect on recovery time, however that was a while ago and things change quick in this arena.

It is a slightly more complicated procedure because they can't move around the way they typically do. If something goes even wrong, they will open you up in the traditional manner.

If coumadin does not concern you, then a mechanical may suit you well, since they can typically last a lifetime and it isn't likely that you would require a re-op - although it does happen.

Given your age, it is very likely that you will require re-op with any of the current biological valve procedures that are out there. You are at that age where you still calcify the bio valves quickly, so you would probably need another operation between 55 and 60 years of age. To some that is acceptable; to others it is not.

Good luck with your decision. It is a difficult one for some of us.

No matter what procedure you have, you will still be able to enjoy a very full life with only minor inconveniences (pending other health considerations).
Kev

 

[joy]

Hi Patrick, my name is Joy, and I am 24 years old. First of all, I would like to welcome you to our family. That's what this site really is. I chose to have a bovine pericardial valve because I didn't want tobe on coumadin. I know Iam looking at having another surgery or two in my lifetime, but my cardiologist said it didn't matter which type of valve I had, I would end up having another surgery again. I think I am the second youngest one on this site. I have a supporting husband, and two kids, both boys. My husband is in the navy, so I didn't have as many choices as you do with hospitals...I had my surgery in one of the best hospitals in the nation. I have learned alot since i had my surgery, and am not too worried about another surgery. Believe it or not, there is not much pain that goes with the surgery, and they take good care of you in the hospital. Good luck on your decision, and once again, welcome!

 

[EVELYN]

Hi Patrick.....I have no idea about transportation from LGA to your hotel....my gut would be to get a car service and make sure they're waiting for you when you arrive. Laguardia is a busy place and I know they have lots of car services that work in that area....I'm sure your travel agent can get one for you or the hotel.

James Taylor's phone # is 516 627 2173 and his address is 100 Port Washington Blvd, Roslyn, NY 11576, right at St. Francis hospital....I don't know when you're coming in, but I would certainly give it a shot. From Park Ave., it's again a car service ride, about 45 minutes....exit 36 on the Long Island Expressway....as always in NY, time depends on traffic.

Hope that's of some help.

Evelyn

 

[Ron K]

Welcome

Welcome

Hi Patrick,

Welcome to the site. You'll find that it is a good place to get some information and a lot of support while you are working through the arrangements and the waiting for your AVR. The postings after the surgery may be even more valuable as you try to learn what's normal, what to expect, etc. Then you can stick around a long time and lend the same kind of support to others that pass through here.

Given your age and your willingness to accept being on coumadin, it seems like you've pretty much decided on a macanical valve. That's a good choice for you. I chose the bovine pericardial valve, even though it means I will have to go through the surgery again in 15-20 years (longer hopefully). I'm counting on progress in medical technology and procedures to make the next OH surgery easier than the last one, although I don't think the last one was horrible. I was fortunate to have had a quick recovery.

Good luck in finding the surgeon and the hospital that feels right for you. You're looking at some of the best, but many others closer to your home are also excellent. Balance all the factors that are important to you when you make the decision.

You're young and probably in good physical shape, so your recovery should go fairly smoothly. You'll most probably be back to work in 6 to 8 weeks, if not sooner.

Please keep us informed of your progress and keep asking questions. Whatever you are wondering, someone here has the answer. Ask away.

Ron K

 

[JimL]

Hi Patrick and welcome! I had about the same results from me tests nearly a year ago, but with surgery needed in 3-4 days.
The tendency seems to be to think that you want the minimally invasive surgery because it will speed up recovery time. Is that so?
You say that you are self-employed, and I assume that you want to get back to work as soon as possible. What does your self-employment involve?
My occupation can be described as self-employed. It doesn't have to involve any heavy lifting. I started back to work, in a sense, the day I got home from the hospital -- albeit all I did was read my email. The next days we less than eight hour days, but I was doing something useful.
Please share with us what you learn about the minimally invasive surgery. If they go through the sternum, even if the incision is smaller, doesn't it still take 2-4 months for the sternum to heal?

 

[Nancy]

Hi Patrick-

Welcome to the site. I see your middle name is Owen. I like ya already, my dad's name was Owen. Not too many around.

I vote for staying close to home if there is a good surgeon there. It really helps to be able to have family there, plus afterwards, you won't feel much like traveling too far. My husband stayed close to home, and I was able to go home to do some work and take care of our little furry friends. I could bring him up things he needed. Of course, you will be looking for a surgeon who does minimally invasive AVR. My husband had minimally invasive with the heart port procedure, through his groin and side, but that was for his mitral repair. Aortic is a whole other scenario.

Mechanicals are good. My husband has an aortic and a mitral. He's been on Coumadin for 25 years, so that wasn't an issue with him either.

I wish you good luck with your presurgery investigations. Hope to see you here often.

 

[sylviayasgur]

hi patrick!
welcome to this wonderful site. as you probably know already, everyone here is so warm, helpful, caring... kind of like family.
my husband, joey, had a ross procedure last year at mt.sinai, nyc. my dad had a mechanical valve and bypass surgery done at the same hospital as evelyn's husband, tyce. my father used dr. paul damus there (3 yrs ago). his second choice though was dr.colvin in nyc who has a remarkable reputation.

laguardia is a "nutsy" place (most airports are), but i don't think you'll have a problem getting a cab to take you to nyc.
wehre will you be staying? are you travelling alone or do you have relatives nearby or coming with you?

there is certainly, as nancy said, something to be said for staying close to home. it's nice to know that you or your family can go home in a matter minutes. it made a big difference to us, because we have 2 daughters and i would spend my days with joey in the hospital and go home to them each night.

it's nice to have choices though, isn't it?

please let us know what you decide to do.
stay well, sylvia

 

[Patrick]

Response to posts

Response to posts

Hello all,

The response to my plea for info is purely amazing.

Update,
I leave for my appt in New York at NYU to meet with Dr. Colvin.
Tuesday AM. I'll return Thursday night and I look forward to posting my findings.

I?ll try to answer some of the questions everyone had on the preceding posts.

From Mara,
Just out of curiousity, what about the minimally invasive is so attractive to you? I have heard so little about it and it was never suggested to me as an option.

I?ve seen my stepdad (whom I?m very close to), go through 2 bypass and a AVR over the last 12 years.
After witnessing that I?m eager to explore all options and spare no expense to minimize downtime and pain.

To Alicia,
FWIW Dr. Chitwood performed the AVR on my stepdad two years ago, my family and I think the world of him. It?s great to hear from someone else from eastern NC. I hope to respond to your E-mail upon my return from NYU.

From Granbonny,
New Bern is near coast? and Duke? Raleigh?..I would suggest to try and stay as near as home as you can..You will not be wanting to travel far when you are dismissed from hospital...about 6-7 days post-op....

Great points, New Bern is near the coast 45 minutes inland, Duke is about 4 hours west and is an excellent facility as well as Pitt in Greenville less than 45 minutes from my residence.
However they don?t offer minimally invasive AVR. They are my backup if MI is ruled out.

To Evelyn,
Thanks for the advice and I?ll try to contact Dr. James Taylor's office tommorrow.

From JimL,
The tendency seems to be to think that you want the minimally invasive surgery because it will speed up recovery time. Is that so?

Yes my perception is a shorter recovery period.

From JimL,
You say that you are self-employed, and I assume that you want to get back to work as soon as possible. What does your self-employment involve?

I?m a Builder, Developer, Broker, Property Manager, Apt Owner as well as some other entities. While this seems daunting I?m extremely fortunate to have a great staff that will keep things running in my absence.

To all the above posters as well as Kevin, Joy, Ron K, Nancy
Thanks for the support and info, everyone has made this process easier already.

 

[Patrick]

Resonse to sylviayasgur

Resonse to sylviayasgur

sylviayasgur,

You wrote,
laguardia is a "nutsy" place (most airports are), but i don't think you'll have a problem getting a cab to take you to nyc.
wehre will you be staying? are you travelling alone or do you have relatives nearby or coming with you?

Thanks for the advice, cabs are fine with me especially if the cabbies speak english.

I've booked two nights at the Waldorf on Park Ave., It seems to be close to NYU. Never been to NYC, so any rec's on dining etc. will be appreciated.

You are right about this site, the fellowship is quite remarkable.

Sincerely,

 

[EVELYN]

Hi Patrick.....If you like Italian in a pub style setting, Carmine's is excellent. Located between 7th and 8th on 44th st, right in the theater district, very busy, bustling and they don't take reservations for less than 6, but definitely great food and good NY atomosphere. Ask at the Waldorf, they'll recommend lots of good places.

I'm almost positive that Dr. Taylor doesn't do minimally invasive surgery. We inquired about that when Tyce had his consult, and his response was, no because if something goes wrong they want to get in there fast and it's alot faster when your're wide open, so we went with that. Tyce's recovery time was excellent....went into the hospital on Wed., was home on Sunday. Is your game plan to go directly home post op? If so, you might want to think closer to home. Let us know how you do with your consults......good luck, Patrick.

Evelyn

 

[sylviayasgur]

hi patrick!
for restaurants in nyc, please check out:
http://www.zagat.com/index.asp?VID=1&PID=1&LID=
you can get a lot of info there without buying the zagat's guide to dining in nyc.

almost all cabbies speak english, so you shouldn't have any trouble with that. when you exit the building/terminal, you will see either cabbies roaming freely, but most likely there will be a taxi stand (as at most airports) with one man guiding cabs and designating cabs to people. he'll ask you where you are going and will tell the cabbie.

have a wonderful time, walk around a bit if you have the time... nyc is an exciting place.

wishing you all the best with dr.colvin. i look forward to hearing how things went.
have a safe flight and please let us know when you get back.
stay well, sylvia

 

[Patrick]

New York University Med Ctr, Dr. Colvin and the port access method

New York University Med Ctr, Dr. Colvin and the port access method

Hello everyone,

I just retuned home last night from New York, thanks to everyone who gave me advice as to getting around, dining etc.

I was very impressed with Dr. Colvin and his staff. I scheduled the minimally invasive AVR for 11/18/02. I have scheduled two appointments for consultation with our local Thoracic surgeons, Dr. Wilms (here in hooterville. NC) he does two procedures a month. I must oblige my Cards referral and see him as a courtesy, The other local is Dr Chitwood in Greenville, NC I see in Nov. as well. Dr. Chitwood will be my choice if I choose a full sternotomy.

I'm in the process of getting an appt to see Dr. Svennson in Cleveland to talk about the mini-sternotomy.

I went ahead with Colvin's okay, and set a surgery date with the understanding that I can cancel if I choose another option.

I sure would like to hear from someone who has has the port access method.

Thanks for everyones support and advice.

Sincerely,


Patrick