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CA Pigg

CA Pigg

Well-known member
Joined
Feb 8, 2009
Messages
290
Location
Alabama
Hey, I'm so glad I found this site. I'm 39 years old and was just informed my mitral valve needs replaced. I was having symptoms over the years that have got worse but I didn't know were symptoms. I have always been very active and full of energy now I feel so tired, going to the mailbox makes me need to sit down and rest. They did an ekg, an echo and then I had the TEE done Thursday. The echo also showed a sm hole in heart but the TEE doctor said she didn't see it, (also confusing to me) The doctor said the valve is severly leaking and I have a small leak that is ok (dont understand the small leak part) I've been waiting to hear back and called myself today the nurse finally called back and said the doctor who did the TEE was part time and they didn't have the results yet for them to refer me to a surgeon, the nurse said she would check into having me referred to UAB instead of Montgomery. I hopefully will get a call tomorrow. I feel myself going downhill so I know I need to get this taken care of soon. I'm in the Montgomery, AL area and near Birmingham. I'm so confused on how this works from here, like on the surgeon choices. Does anyone know of a surgeon at uab that can do the mitral replacement without OHS, I've read about an incision beside the breast instead of splitting the breastbone. Anything that you can share is very appreciated...I really feel like the doctors are keeping me in the dark right now and all I'm reading is just so overwhelming.... Seeing this sight and being able to share and get input from people going through same is Awesome! Thanks for any input!
Carole
 
Hello and welcome Carole,glad you found us although sorry for the reasons

i can,t help much with your questions,i just had 2nd valve surgery

on jan 22 for my mitral and 16 years ago 1st for aortic valve,which i still

have.i found the waiting is the worst of the whole event.

lots of reading and info to be found here and you have come to the right

place,my 1st surgery was 31 now 2nd 47 and its alot to take in,but i,m

so glad i had 2 chances now to be able to have surgery.the wait is worse than surgery.

Glad you are here and ask away any questions always someone to help:)

zipper2 (DEB)
 
Thank you for the welcome. So glad all has turned out well for you. Yes, this waiting is driving me crazy!!! I hope I'm replying right to you, i used quick reply instead of post reply, guess you can tell I'm a newbie, LOL!!! I will learn, LOL!!!
 
I still haven't figure reply out I always use quick lol anyway Al went to UAB, if he doesn't answer this tomorrow search for UAB and his posts about docs there will come up, but he usually catches most posts, welcome
 
Hello and welcome!

Most of "us" are asleep right now, I think...pretty late on the east coast! I'm in Oregon and am just popping on before I hit the sack.

You have found a great community here. There will be a lot of people on board tomorrow to answer any question you might have. It is always good to start a new thread each time you have a different kind of question. That way many more people will see its title and you'll get a better variety of answers.

It is good to use the search button up in the menu (blue line at top). That can help you isolate specifics that have been discussed before. Be watchful and when threads come up, check the date the thread was started. Many of us have been here for years and there have certainly been improvements in many areas since many of the threads were started.

I had my aortic valve replaced almost 3 years ago. I am now 55 and certainly never minded the fact that I was going to have a full sternotomy (where they crack the sternum to reach the heart). It has mended beautifully and beyond the small scar (okay, not the prettiest thing) and a little stretchy feeling now and again, I'd never know that I was sawed apart.

Keep reading here. It's the best thing you can do right now.

Best wishes.

Marguerite
 
There are several very experienced Valve Surgeons at UAB including Dr. Athanasuleas, James Kirklin, David McGiffin (delightful Aussie), and Pajaro (youngest of the group). These are probably the Best Valve Surgeons in Alabama. I'm not sure if any (or which) do minimally invasive surgery.

There is a Minimally Invasive specialist at Vanderbilt in Nashville, Dr. Petracek, who does 200 Thoracotomy procedures (through the ribs) per year. I believe he only uses St. Jude Valves (or at least that is his preferred valve supplier).

Have you thought about whether you want a Mechanical Valve or Tissue Valve? If not, I suggest you browse through the Valve Selection Forum, starting with the "stickys" at the top of the thread listing after clicking on that forum.

Feel free to ask more questions as they arise.

'AL Capshaw' (in North Alabama near HSV)
 
Thank you AL! The doctor who did the TEE said a mechanical, but now I see there are so many different ones there so I am reading up... At least I don't have to decide on mechanical versus tissue, one less decision LOL... How do find out who is the best surgeon? I did some searches but didn't come up with anything. Right now I'm being seen in Montgomery, I'm just thinking Birmingham would be better??? I am so glad I found this place!!!
 
CA Pigg said:
Thank you AL! The doctor who did the TEE said a mechanical, but now I see there are so many different ones there so I am reading up... At least I don't have to decide on mechanical versus tissue, one less decision LOL... How do find out who is the best surgeon? I did some searches but didn't come up with anything. Right now I'm being seen in Montgomery, I'm just thinking Birmingham would be better??? I am so glad I found this place!!!
Click to expand...

For mechanical valves, I like the technological improvements that are available with the On-X Valve (see www.heartvalvechoice.com and www.onxvalves.com).

It's hard to find FREE information on Surgeons.
There are some FEE Based sites available.

Dr. Athanasuleas (in his 50's) (sp?) probably has the most experience with ON-X valves of the UAB surgeons.
He was recently recruited from another B'ham Hospital.
Dr. McGiffin has recently started using On-X as well.

Dr. McGiffin (in his 50's) is the #2 guy on the Heart Transplant Team and is known to have taken on many High Risk patients, including several of our members (do a VR.com Search to find their posts). He is very highly regarded for his surgical skills, willingness to listen to his patients and answer their questions, and his gentlemanly demeanor. His office telephone number is 205-975-2526 and his staff are very cordial and helpful.

Dr. James Kirklin (in his 60's) is the Head of the Heart Transplant Team. He is the son of Dr. John Kirklin -deceased- who was recruited from the Mayo Clinic to begin the Heart Surgery program at UAB and for whom the Kirklin Clinic is named.

Dr. Pajaro (in his 40's) was recruited from a Florida Hospital to fill the gap left by the retirement of Dr. Pacifico who was the #1 guy at UAB for many years. I *think* Dr. Pacifico came to UAB under Dr. James Kirklin. During his reign, UAB reached #10 on the U.S. News and World Report ranking of Heart Hospitals. According to a Valve Manufacturer's Sales Representative who knew Dr. Pajaro in Florida, he was highly regarded at that hospital. I expect he was a good choice for UAB to provide continuity of care as the older surgeons eventually retire (although some have been known to continue into their 70's and beyond)

As I said before, I suspect these guys are the most prolific Heart Valve Surgeons in the state of Alabama. You would need to ask their offices if / who does minimally invasive surgery.

Do a Google Search for Dr. Petracek at Vanderbilt to get the link to his website. He has a video of one of this minimally invasive surgeries on that site. He is known to be a proponent of the St. Jude valves.

'AL Capshaw'
 
Are you absolutely sure there is no chance for a REPAIR? In the majority of cases, the mitral valve can be repaired instead of replaced which eliminates the disadvantages of both a mechanical and a tissue valve. I would get other opinions.
 
Hey Adrienne,
According to the doctor who did the echo and doctor who did the TEE the valve is severly leaking and calcified, and I can't remember what else she said, she did it so fast.... But in laymans terms She said it was too damaged to be repaired and had to be replaced. I didn't realize the symptoms I was having was valve related and have been going downhill, but now I am so weak, I feel so useless!!!!
Thanks for the concern
Carole
 
Hi Carole,
I am in Atlanta, and I know that Birmingham has some great surgeons, but I am not knowledgeable on who they are - sorry I can't help with that. My advice to anyone in your situation, which I can't stress enough, is to get a second opinion, even a third. Even if they all say the same thing, you will at least feel confident in making important decisions. I did not do this with my first MV surgery and wish I had. Also, if you are thinking minimally invasive, ask a lot of questions, make sure you have a surgeon who has done these with a high success rate. Don't let the scar be the sole factor in your decision, although it is nice if you don't have to have one that is visible. Good luck, I know this is a nerve-wracking time but just make sure you do your research. It may be had to picture now but you will feel so much better after your valve is repaired or replaced.
 
I agree with Halley.....have a 2nd and maybe 3rd opinion. I was told the same thing each time, but made me feel more confident.
 
The surgeons will check again yes/no?? Or are you suggesting other heart doctors? They did 2 EKG's which had the bad readings, sent me for the Echo and then the TEE. I really don't want to "eat the camera again" thats what I call the TEE. THey did it Thursday and I'm still just a little sore. Friday it was awful I think she turned that camera a few too many turns, LOL..... I'm still waiting for the TEE doctor to give the original heart doctor the results and them to call me back. Yep, waiting stinks!! Thank goodness for zanax....... that is really helping my nerves and my blood pressure down. I am still so glad I found this place. Such Awesome People!!!!!!!!
 
CA, I know how you feel! I have all the classic symptoms and walking up my stairs makes me tired,dizzy,chest pains etc... I would not stop until they can give you answers for all your symptoms. Good Luck
 
I went through much of the same tests and since I already had a pretty good idea of the problem, I may not have been as surprised as you are. I had been seeing a cardio for a few years due to chest pain and shortness of breathe. I finally switched to a new one who ran the gamut of tests and told me that I needed OHS to replace (no chance of repair) my aortic valve and it needed done soon. My mitral is still leaking but since my OHS in May 2008, it has not gotten better or worse, so that is a good thing. I know OHS scares us all, but I am glad I went with the sternum old fashioned OHS since it gave the surgeon a better view of all my issues. My scar is not that bad and most people don't even notice it unless they are looking for it. My surgeon placed it right in my cleavage line so it is not very well visualized. He also did not use staples to close me up so that helped too.
I agree with everyone else to get at least a second opinion before making a decisions. Take it easy and know that after this is all fixed, you will feel tons better and have more energy and not run out of air just walking to the mail box!

diana (St. Jude Aortic Valve)
AVR and tricuspid repair, 5/16/2008 Dayton Heart Hospital, Dr. John Miller, Surgeon
 
WHOA ! Slow Down Carole and take some Deep Breaths.

You're starting to sound a little panicky.

Dr. McGiffin (UAB Surgeon) told me that Mitral Valve issues tend to move slowly and don't usually end in 'sudden death' so hopefully you have time to sort this all out and find a good surgeon to FIX your problem valve.

After you gather your wits, then you would be wise to gather copies of all of your Test Resutls (Echo, TEE, Cath?), both the Reports and actual Tapes / CD's / DVD's and contact prospective Surgeons. You could ask your Cardiologist what surgeons he likes (mention your interest in UAB and minimally invasive surgery) or just contact UAB directly.

Call Dr. McGiffin's office and ask them who they think would be most appropriate for your situation. I posted his telephone in response #9 to this thread, along with a brief biographical sketch of each of the UAB Surgeons (plus one at Vanderbilt).

'AL Capshaw'
 
I lived with a severely leaking mitral valve for 22 years before surgery. Al's right. Without an infection, they don't usually crater overnight. Try to relax. As you know, stressing out certainly doesn't help your heart. After you talk to a surgeon, I'm sure you'll feel better. I don't necessarily agree with multiple opinions. If you like the first surgeon you talk to, especially if he is one of the ones that Al or someone else you know recommended, why spend time doctor shopping?

My cardiologist recommended my surgeon, but having worked at the hospital where I had my surgery, I knew that he was very highly respected. My surgery wasn't a surprise. The surprise was that I made it 22 years and through 2 pregnancies before it happened. My surgeon does both Davinci and minimally invasive surgery now, but when I had mine done 10 1/2 years ago, that wasn't available. I had the full cracked chest. I do, however, have a horizontal scar, right where the underwire of my bra goes.
 
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