Newby looking for info.

shop deals on amazon
Shop deals on ebay
Advertise with us
Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
Hi Joe & wife welcome to the vr forum. You will find alot of wonderful information here. I live in Tucson Az. but had my surgery at Stanford Medical Center.The surgeons there are some of the best in the world and I had alot of problems along with double valve replacements. I feel the best I have in years. The warfarin does'nt bother me in the least. It took some adjusting to but I count it a blessing just to be alive. If we can be of any help on answering questions you may have just ask away. :)
Make sure you really check your surgeon and staff out before you make any decisions. You are putting your life in their hands.
I hope more from the Az area will be giving their welcome and can answer some of your questions too.
Good Luck and God Bless.
 
WOW!! Thanks to everyone for posting and offering suggestions and support.
I too felt 2000 heart surgeries was rather new but I was highly recommended to the surgeon by my cardiologist. As far as my aorta- I have had the echo, ekg, stress tests and another process that I am unsure of the name. They gave me a shot and had me drink water then wait 20 minutes and they took several photos of my heart from a large rotating camera/xray machine? The cardiologist did that process twice, once one day before stress test on treadmill and immediately after.

I was told my aorta is right on the cusp of possible replacement, the Surgeon said it was at a 4.2 I believe. He felt that if he was already going in it might be more beneficial to replace it at the same time (full chest access.) However he is probably scheduling an Angiogram* sp.

I did ask the Surgeons office after reading all of the helpful post about an MRI and the med asst said they usually don’t take MRI's? Is there some additional info someone can offer as to why I should ask for, or insist if needed, and MRI?

Thanks again.
 
I have nothing else to add, Joe but wanted to wish you a warm welcome. As others have said, this is an amazing place for support. All the best to you...
 
JoeG said:
WOW!! Thanks to everyone for posting and offering suggestions and support.
I too felt 2000 heart surgeries was rather new but I was highly recommended to the surgeon by my cardiologist. As far as my aorta- I have had the echo, ekg, stress tests and another process that I am unsure of the name. They gave me a shot and had me drink water then wait 20 minutes and they took several photos of my heart from a large rotating camera/xray machine? The cardiologist did that process twice, once one day before stress test on treadmill and immediately after.

I was told my aorta is right on the cusp of possible replacement, the Surgeon said it was at a 4.2 I believe. He felt that if he was already going in it might be more beneficial to replace it at the same time (full chest access.) However he is probably scheduling an Angiogram* sp.

I did ask the Surgeons office after reading all of the helpful post about an MRI and the med asst said they usually don’t take MRI's? Is there some additional info someone can offer as to why I should ask for, or insist if needed, and MRI?

Thanks again.
Click to expand...


Joe,
I'm not certain what test they ran, but perhaps it did get a good view of your aorta. Can you call them back and ask what test it was? You can get any test results that they have run so far, and you may want to so you can keep the information to refer to. You might think this sounds pushy, but it isn't.:)

If a surgeon is going to repair your aorta, you need the very best surgeon you can get to do the surgery. Insurance might be a consideration, so you might want to check the limits on in-network and out of network.

I did a quick check of your surgeon's name on google, and the information I found didn't indicate that valve replacement was one of his areas of interests. That would worry me. Can you ask the cardiologist for some other recommendations?
 
It sounds like you MIGHT have a had a ct scan (the machine going around you (was it like a big donut and you laid in the hole?

As for how much experience he has you could look at his page at the hospital site and see how many years he has been practicing and divide the 2000 by the years, IF he was practcing 10 or more that's less than 200 surgeries a year, ect.

Does your cardiologist work at the same hospital as the surgeon he recomended or did he recomend you go to a different hospital? I am NOT saying your surgeon isn't any good, I have no idea, but Sometimes cardiologist will recomend the best in THEIR hospital and not necessarily the best , or even the best in your area.
 
Well I just scheduled an appt with another surgeon for consultation. The surgeon is Louis A. Lanza, M.D. from the Mayo Clinic. I will meet with him on Tue morning with my file from my cardiologist.

My wife seems to feel good about meeting with folks from the Mayo Clinic.

Lynn- I dont think I had a CT yet, the photos that were taken were a little diferent I was laying in a stationary bed and the camera/xray maching rotated around me.

Mary- I just called and requested a copy of my full file ..Thx.
 
JoeG said:
Well I just scheduled an appt with another surgeon for consultation. The surgeon is Louis A. Lanza, M.D. from the Mayo Clinic. I will meet with him on Tue morning with my file from my cardiologist.

My wife seems to feel good about meeting with folks from the Mayo Clinic.

Lynn- I dont think I had a CT yet, the photos that were taken were a little diferent I was laying in a stationary bed and the camera/xray maching rotated around me.

Mary- I just called and requested a copy of my full file ..Thx.
Click to expand...

Good deal! Let us know how the appt. with Dr. Lanza goes.:)
 
JoeG said:
Well I just scheduled an appt with another surgeon for consultation. The surgeon is Louis A. Lanza, M.D. from the Mayo Clinic. I will meet with him on Tue morning with my file from my cardiologist.

My wife seems to feel good about meeting with folks from the Mayo Clinic.

Lynn- I dont think I had a CT yet, the photos that were taken were a little diferent I was laying in a stationary bed and the camera/xray maching rotated around me.

Mary- I just called and requested a copy of my full file ..Thx.
Click to expand...

That sounds like a great place to get a 2nd opinion from. Good luck
 
Joe -

The test which used the large rotating 'camera' was a Nuclear Stress Test. You probably walked on a treat mill doing the "Bruce Protocol" where the speed and incline are ramped up every 3 minutes until you reach your target heart rate. Then they Inject the radioactive dye and ask you to keep walking for another minute.

The 'camera' gives a 3 dimensional view of your Heart.
The 'bright' areas are where the radioactive dye was present, indicating good blood flow. Dark areas show where the blood flow is restricted. This test gives a 'broad view' of the blood flow to your Heart Muscles. (Been There, Done That). If you have blockages, the next step is a Heart Catheterization and Angiogram (which you will most likely need before ANY Heart Surgery).

To the best of 'my' knowledge, the only tests that show the ENTIRE Aorta are the Chest CT and Chest MRI. You may want to browse through the BAV and CTD Forum for images of other member's Aorta.

You definitely want to discuss fixing your Aorta at the same time as getting your Aortic Valve Replaced, 'even though' your numbers are not in the normal range for aorta repair/replacement. Otherwise, you very well may be setting yourself up for a SECOND Open Heart Surgery to Fix your Aorta at a later date. It has happened to others!

And you DEFINITELY want a Surgeon with Lots of Experience doing Aorta Repair. The 'newby Heart Surgeon' who does lots of Bypasses and a few Valve Replacements would be 'over his head' taking on an Aorta Replacement (in my NON-professional opinion). That's why I gave you the names of the TOP Aorta Surgeons West of the Mississippi in my previous post.

The TOP Aorta Surgeon at The Mayo Clinic (in MN) is Dr. Sundt. He trained under Dr. Kouchoukas(sp?).

FYI, I learned these surgeons names by reading many (most?) of the posts / threads in the BAV and CTD Forum and noting who the patients with the 'worst of the worst' conditions were referred to, sometimes AFTER lesser surgeons BOTCHED their first surgeries.

If you read all of the posts in the BAV and CTD Forum, you can develop your own list. You don't need to rely on mine.

'AL Capshaw'
 
JoeG said:
I wonder if I will fill more active once I have recovered? Currently I feel drained most of the time.
Click to expand...

Welcome! I was feeling drained prior to my AVR (it was my only symptom) and the operation sure helped with that problem. Hopefully yours will, too. I was 42 at the time of my surgery and chose a mechanical because of my age. I definitely want to avoid another surgery if at all possible.

Best of luck to you.

Cheers,
Michelle
 
A CT scan will provide a more accurate measurement of your aorta than an echo. If an echo result shows your ascending aorta diameter at 4.2cm, a CT-scan may very well show a larger size aorta. This was my experience. With BAV regurgitation and enlarged aorta at your age, you may be well advised to replace both BAV and aorta at the same time even if your aortic diameter is not yet at 5.0cm. This will prevent you from having aortic aneurysm and surgery again in 5-10 years after AVR. There's a lot of research in the literature concerning this subject.

Also see:

www.bicuspidfoundation.com for more information.

All my best,
MrP
 
Hey Joe....Welcome to the forum ! As you have already seen there are lots of very supportive folks around here. You will find inspiration when you learn of the history of some of the members. There are a handful of absolute trailblazers when it comes to OHS that have inspired me (and still do).

Im 10 yrs older than you but your diagnosis is similar to mine. I had a bicuspid aortic valve, severe stenosis. I was fortunate that there were no other issues so my surgery was fairly straightforward from the surgeons perspective. Not from my eyes of course, this was my first surgical procedure of any kind short of having a tooth pulled. I chose mechanical and like you that is what my surgeon and both of the cardiologists I saw recommended. I went from initial diagnosis to surgery in 15 days so to be honest I didn't have much time to mull over mechanical versus tissue.

The stress leading up to the surgery is far worse than the procedure or the recovery in my opinion. I'm 5'11, 200lbs, and prior ot the surgery I was probably 10 pounds heavier. I would lift weights, get on a stepper but if I ran on a treadmill I couldn't go a 1/4 mile without having chest pain and SOB. It wasn't until I saw 350 lb guys on Biggest Loser outrunning me that I decided to see a cardiologist just to rule out any heart issues. Luckily the issue was identified and now its fixed ! Im 14 months post op and other than the scar on my chest you would never know I had anything done. I actually just came back from an 8 mile run :) Longest run in over 20 years, no sh*t ! Got a half-marathon on May 2nd, it just tickles me that I can do this now. Im not a big fan of running to be honest but Im doing it now because I can :) Coumadin is a daily thing that you need to deal with, its a snap.

Best of luck to you, but no worries because your gonna do great. 8 after surgery to me was when I really felt like it was behind me, given your 10 years younger you may just bounce back that much faster.
 
Joe:

My husband and I both have had wonderful experiences at the Mayo Clinic in Scottsdale. We live in Tempe.

My husband saw Dr. Lanza about a year ago, but not for valve related issues. I found him to be knowledgeable, informative, and concerned. From our meeting with him, I gleaned a bit of information. I liked his no nonsence approach. But, I did not get the impression that valve surgery was his speciality.

If you decide on a third opinion, I know several folks who have had great success with the Arizona Heart Hospital and Dr. Detrich, who used to be called "The King of Hearts."

I would suggest that, for the type of surgery you are having, you would probably be well served by a doctor who had much experience with surgeries of the nature of yours.

Kindest regards,

Blanche
Blanche
 
JoeG said:
I did ask the Surgeons office after reading all of the helpful post about an MRI and the med asst said they usually don’t take MRI's? Is there some additional info someone can offer as to why I should ask for, or insist if needed, and MRI?
Click to expand...

The reason to ask for an MRI or Chest CT is because you have BAV and there is a fairly High Correlation of Connective Tissue Disorder (which can lead to Aortic Aneurisms) with BAV.

The 'assistant' is correct about not usually doing MRI's for patients who do NOT have BAV. You need to ask the Surgeon(s) you interview how *they* would assess the condition of your Aorta since you have BAV and are concerned about the possibility of a Connective Tissue Disorder. Their answer to that question will separate the Experienced from the Inexperienced Surgeons.

The number of Surgeons who do Aorta repair / replacement is a small percentage of the total number of Heart Surgeons. (There are a LOT of Heart Surgeons who do mostly Bypass Surgery and simple first time Valve Replacement, usually on non-BAV patients.)

Note: If you do not have a Connective Tissue Disorder, you too could 'get by' with simple a simple valve replacement. It is in your Best Interest to get a complete and accurate assessment of your Aorta before making that decision. Personally, if I had BAV, I would want the Surgeon (and NOT an 'assistant') assessing my Aorta to have Lots of Experience with Connective Tissue Disorders and repairing / replacing parts of the Aorta. From what I read in this Forum, it really is much more complex than Valve Replacement surgery.
 
Here's a perfect example of why I urge patients with BAV to get checked out by a Surgeon with experience assessing and repairing the aorta.

It was posted recently by "Susiesknight" in the Heart Talk Forum thread on Longevity after AVR.

=====================
Quote:

I am so thankful for my surgery. I was asymptomatic so I went thru a lot of denial, then several definitive tests, and then acceptance. I was healthy going into OHS for AVR (BAV) and as it turned out *** my aorta needed repair also due to extremely thin tissue.***

Had the freestyle aorta repair that turned out to be a specialty of my UAB surgeon plus the bio valve. Now I am 1 month out, still healing, but extremely grateful to know my heart is even better than it was for the previous 58 years. God's unfailing love is my assurance for complete recovery. Yes, when I have pain and cannot do whatever I used to do right now, I ask for patience because there will be a day when it"ll all be good.

Medtronic 21 mm Freestyle aortic valve and aortic root repair 3/11/09
Dr. David McGiffin, my awesome Aussie doc
UAB

Bitte ein bitte
(Susiesknight from Florida)
=================

Dr. McGiffin is the #2 guy on the Heart Transplant Team at UAB and known as a 'Go To' Guy for High Risk patients.
 
Hi Joe, I had my first OHS, the Ross at 37. I had BVD and CHD. Last August had thoracic ascending aortic aneurysm and valve (aortic) replacement with ST. Jude valve. Coumadin is a royal pain. If your doc lets you self test, others tell me they have no problem. Mine wont let me self test. Best of wishes in your situation.
 
Joe,
Welcome to the forum. I hope you get some good answers and some peace of mind tomorrow. My 2 cents worth is to plan on getting your aorta replaced at the same time as your valve. My son dissected so I am quite biased about this. I just don't see any reason to take the risk when they have to be in there anyway. We chose an On-X valve for my son in the hopes that it will eventually not require anti-coagulation or only require low anti-coagulation.
 
And don't forget the guy who did my surgery on March 31, Dr. Joseph P. Coselli, (Texas Heart Institute in Houston) who is supposed to be the very best Aortic aneurysm repair guy in the world. Doctors and students come from all over the world to watch and learn from him - he trained under Dr. DeBakey. Before my surgery, my cardio told me there was no chance of having my valve repaired, but Coselli explained the situation, saying that it depended on the location of my coronary arteries. If they near the valve, he could most likely repair it (a St. Jude Nr. 25 from 1991), if not he would just take the whole section out and put in an aortic graft with a new valve already attached. All worked out well.

Take the time, if you have it and can afford it, to get the best advice you can, and make sure YOU are comfortable with the person you choose to perform your surgery.

Regards,
Roderick
 
Hi Joe,
I had a AVR (Mechanical) 3 years ago and at the time they said that my Aorta may have needing "Lining" but as it turns out all I had was the VR and a failed Maze procedure and the rest of my heart was ok with no Artiery problems , I now live with perm A/Fib but I have adjusted and I take Warfarin which does not seem to give me any side effects at all.
Best wishes to you .......Kevin
 
You must log in or register to reply here.

Latest posts

Back
Top