URGENT! heart valve replacment/closing

[soccermom44]

Hi...my mom had a radical mastectomy 35 yrs ago, that because of the radiation, she now needs an aortic valve replacment. The problem is her surgeon is not sure if he can close her up. She has very damaged and scar tissued skin, and the incision may not heal. He refferred her to a plastic surgeon for possible grafting, but he is not promising that it would adhere to her skin. Anyone with this experience or ideas?? There must be something that can be done. Thanks.

 

[Ross]

Hi soccermom44 and welcome to the forums.

Things are slow on the weekends here, so give it some time for a reply. I'm not real familiar with the type of situation you have to deal with, but we do have a couple of members that have gone through Cancer treatment. Perhaps they can shed some light.

Have you thought about an evaluation from the Mayo or Cleveland Clinic? When it comes to a situation like this, I think your better off going to one of the best places possible for treatment.

 

[Nancy]

Hi soccermom-

Welcome to this wonderful site. You will love the support and information you get here. I agree with Ross about trying to get a second opinion at one of the larger centers, even if your mom has to travel. It would be better to travel and have the opportunity of them getting it right, than to stay in a situation where your mom would be uncomfortable.

This is an important surgery for her.

There are different methods for heart valve surgery that might be offered at the larger centers.

Best wishes.

 

[ALCapshaw2]

I second the comments from Ross and Nancy, i.e., talk with one of the MAJOR Heart Centers such as the Cleveland Clinic or Mayo Clinic, or any surgeon with lots of EXPERIENCE doing alternative placements such as through the side. Hopefully her cardiologist can help her find such surgeons and provide a referal.

Best wishes,

'AL'

 

[soccermom44]

re: heartvalve/can't close her up

re: heartvalve/can't close her up

Thanks for the messages. My mom's plastic surgeon did contact the top plastic surgeon at the Mayo clinic..I guess he's a friend. He had no further input on it. I don't know if her heart surgeon has been consulting or not. What are some of the best places to get this done anyway? I guess her heart surgeon is one of the top in the country..located in Denver at St. Josephs. Anyone know of a procedure called a "heart Port"? I guess they go in thru the side?? Thanks

 

[Nancy]

My husband's last heart valve procedure was done with the Heartport method. The procedure was repair of a mitral valve paravalvular leak. It was ideal for that situation. It was done through his side, with a second incision in the groin area for the cannula. His surgery was done at Ellis Hospital in Schenectady, New York, by Dr. Harry J. DePan.

There are other centers which do this procedure. You would have to speak with a surgeon as to whether this would be appropriate for your mom.

Here is a link which ofers a description.


http://www.advocatehealth.com/system/info/library/articles/heartcare/surgery/heartprt.html

 

[soccermom44]

re: heart port

re: heart port

Thanks Nancy. My mom talks with her dr. again tomorrow. She will mention the heartport option. Do you know off hand if it's possible to do with an aortic replacment? or just the mitral valve?

 

[Nancy]

I have read both that it is possible for the aortic valve and also that is only for the mitral. That's why I mentioned that the surgeon is the one to speak with about it.

And not every patient would be a candidate. There are certain criteria, and I have no idea what they might be.

Good luck to your mom.

 

[pillarpaul]

Another idea

Another idea

Hi Soccermom and welcome. I assume from your message that your mother is from the Denver area. St. Joe's and St. Anthony's are considered the two best heart hospitals in Denver. I should know - I had aortic vavle repair two months ago at St. Anthony's. May I sugest you contact my surgeon? He is the head of cardiovascular surgery at St. Anthony's and is highly, highly regarded (he did an incredible job on me) and a very nice man. His name is Dr. Lance Walker and his number is (303) 595-2700.

Let me know if you schedule an appointment.

Paul

 

[fyrfytr]

Hey Soccer mom, another option is the heart center of the rockies. I had my surgery there on 4/21/03, it is in Ft. Collins. My surgeon was Dr. Michael Stanton. They are very good there also.
Good Luck for your mom.

Dave
_______________________________________
Aortic Aneurysm Repair
Aortic Valve Replacement with a St. Jude Mechanical Aortic valve with graft sleeve.
Poudre Valley Hospital, Heart Center of the Rockies
Surgeon: Dr. Michael Stanton
Cardiologist: Dr. Gary Luckasen

 

[soccermom44]

Thanks for advice

Thanks for advice

Thank you so much for the responses. Thank you for caring enough to share your experiences with me. Yes, my mom is in Denver. Her surgeon is a Dr. Miller at St. Josephs. He's supposed to be very good, but to me if you don't get the answers from one that you want..it never hurts to contact someone else!! I will tell her of the doctors that you spoke of. Did either of you have your valve replacment done by the "heartport" method??

 

[fyrfytr]

Hey Soccermom, I had mine done the old fashion way. Everything keeps getting better each day for me. Thanks


Dave
______________________________________
SURGERY: 4/21/03
Aortic Aneurysm Repair
Aortic Valve Replacement with a St. Jude Mechanical Aortic valve with graft sleeve.
Poudre Valley Hospital, Heart Center of the Rockies

 

[scottvant]

Soccermom44 asks: "Anyone know of a procedure called a "heart Port"? I guess they go in thru the side??"
---

I know Nancy said her husband (and there are probably others) had a procedure done via HeartPort. Which is fine, and I don't mean to discount their experiences. But one of my mom's friends mentioned this system to her and she asked my surgeon about it one day when they both happened to be in my room at the same time. He said that while Cedars Los Angeles was an early adopter of the new technology, it was just as quickly abandoned due to unacceptably high morality rates. He is quoted in this article:

http://www.oralchelation.net/data/BypassSurgery/bypass2.htm

Of note is the fact that too many patients experienced late aneurysms in the descending aorta, and probably/possibly due to the fact that the heart-lung machine is pumping blood *backwards* up thru the descending aorta for the duration of the HeartPort surgery, as opposed to "traditional" open-heart which has you cannulated in the normal manner and no blood has to flow backward thru anywhere.

I'm sure this procedure can be and has been performed safely on some people. But, I'm naturally suspicious of anyone selling a new technology that exaggerates how bad it is to do something "the old fashioned way" vs. their new and improved, "ultramodern" way. That link that Nancy posted makes an exaggerated claim that heart surgeries done the "traditional" way leave a "12 inch long scar" on the chest. Hogswallop. The scar is 6-7". Mine is just *barely* 6. It sounds to me like they're trying to be hysterical. If the HeartPort technology is that much superior to the "regular" way, they wouldn't need to falsely exaggerate like that.

And, while I'm all for checking up after the newest advances in technology, the latest and greatest, I'm also comforted that a surgeon isn't experimenting on me. I'd rather have my 6" scar from a procedure the doctor has performed hundreds of times before me, than a 3" scar he's causing using a procedure he's having to read step-by-step out of a manual cos it's new to him.

Scott

 

[Nancy]

The HeartPort method of heart surgery worked out very well for my husband. It also worked out very well for a family friend who had a myxoma removed from her atrium. I believe that there is at least one other member here who had their surgery done this way.

In my husband's case, this was his third heart valve surgery. His first one was done 25 years ago, and has a long incision, his second one was done in 1999 and the scar was smaller, but still a conventional type scar.

The HeartPort method was used very specifically on his third surgery because he had so much scar tissue in his sternum area from the two previous valve surgeries.

He was tested very thoroughly prior to surgery to determine if his vascular system could handle the procedure. His problems stem from having had rheumatic fever, and he doesn't have coronary artery disease. So he was cleared for this type of surgery.

The surgeon who did his surgery, Dr. Harry DePan, is a highly skilled surgeon. He has operated on my husband 3 times, two valve surgeries and one lung surgery. Another member of his group also operated on his other lung. So we were very comfortable with the expertise already demonstrated.

Do I say that the HeartPort method is right for everyone, no I don't. Do I think that every surgeon would be interested in doing surgery that way, no I don't. Does every hospital do this procedure, no they don't.

My guess is that by and large the most "done" valve surgery is the standard sternum crack. But there are other types of procedures available for various situations, including a mini-sternotomy which is used a lot at Cleveland Clinic.

It's the same as the various type of valves avaiable, or the Ross procedure. Some of our members have some pretty fancy cutting edge valves, which are not available everywhere.

We even have a few members who have had the new procedure the "Maze" which is used to correct afib. We have a family friend who has had done that too.

I did read the link you provided. It is from 1999. HeartPort is now owned by Johnson and Johnson, I believe, and I suspect that things have evolved since that time, like everything else in the medical field.

I only mentioned this method to Soccermom44 because her mother had a scar tissue situation from having had radiation treatments. Just another avenue for her to explore . I also mentioned that she should consider looking into one of the large centers like Cleveland Clinic, for their input.

Lots of options are bandied about on this site all the time. People's personal experiences play a large part in the value of this site.

There's a wealth of info here on all kinds of things.

 

[scottvant]

Nancy sez: "I only mentioned this method to Soccermom44 because hre mother had a scar tissue situation from having had radiation treatments. Just another avenue for her to explore ."

Good point, and I did read that post after I responded with this... I understood better after that why one might make scar size/location an issue. My point is that I wouldn't go chasing controversial new therapies just to have 3" less of a scar. On one hand, the conventional "chest crack" (love that) isn't 12". But it *is* only 6 (ish), which is NOTHING, considering it stems from a procedure you had to keep you alive. I was amazed the number of people who wanted to know "if it left a big scar" and "could they see it" and who, when I peel my shirt off around the pool this summer, look, and always respond, "wow, that scar isn't as bad as I thought it would be--you're lucky!" As if the "scar" is the most critical leftover of my ordeal. Far more distressing to me, if you want to talk physical disfigurements, is my skinny arms and flat chest and ever-spreading gut now, as I can't go/haven't been going to the gym for the last 9 months...

I didn't mean to sound like a know-it-all with that. As I said in another post, I trusted my surgeon implicitly with all decisions. Not my usual M.O., to be sure, but at the time it was necessary to make these decisions, I was so sick, and time was running so short, I didn't worry about it. So when his recommendation for me was the Ross, I didn't question that either. Afterward, as I've been finding folks on the internet to discuss this with, some have been incrudulous: "You let them do what?!?!? You know now you have not one, but TWO valves you're gonna have to have fixed again, and probably as soon as 5 years from now..."

And I *hate* when they say that to me. So, my sincerest apologies if I sounded like that in my coments to you and soccermom.

Scott

 

[Creed3]

Scar Length

Scar Length

Hi!
Just a comment about the length of the scar from having a sternotomy for OHS. I just had surgery 9 months ago and my scar runs from about the collar bone all the way down to about 2 1/2 inches above my bellybutton. That makes my scar about 11 to 12 inches long, not including the three small scars due to the drainage tubes and I also have one that is about 2 1/2 inches long, on my chest, near my right shoulder. That one was due to the heart lung machine. From my understanding, the one due to the heart lung machine is not commonly done there, it is done in the leg. Who knows why they did mine the way they did. They do still do OHS where you will have a 12 inch scar. Everyone's situation is different, so it may be that for some reason the larger cut was needed. I remember a nurse telling me once, that sometimes it depends on the size of the patient and the size of the surgeons hands as to how far down they will need to cut (whether the surgeon needs more room to manipulate). I'm not really sure if that is true or not.

Take Care!
Gail

 

[soccermom44]

Update

Update

Hi everyone!!
Remember me? I just wanted to give you an update on my mom's situation...if you could call it an update. Her surgeons (heart and plastic) haven't really given her much more hope. They have contacted the Cleveland Clinic and Mayo Clinic, and noone has heard of a situation like hers. It seems that noone has done anything with scarred skin on the chest. Her plastic surgeon was even at a conference this week and discussed it with ones all over the country, with little input. Next step is that they may want her to GO to the Mayo clinic in Rochester, I guess where a top plastic surgeon is, so he can see her. Meanwhile, she is absolutly in distress, and sick to her stomach etc. just waiting for any hope. Ultimatly, she will have to decide to risk not healing, or not have surgury at all, and take the 1-2years she would have left.

p.s. all "alternative" procedures..i.e. (heartport, cosgrove,mini-sternotomy) have been ruled out. Too much work to do on her.

Thanks...I'll keep you posted

 

[Ross]

I'm sorry to hear she's having a tough time with this. If anyone can fix her up, it would be Mayo or Cleveland. Hopefully the guys at Mayo can come up with an idea. Keep in touch and let us know how this turns out.

 

[bvdr]

This is a real hard time for you and your family. I will keep you in my prayers. Thank-you for keeping us informed and please let us know what decision you reach.

Betty(bvdr)