Choosing a Surgeon: Please Advise

[Sooner_Crusier]

Only One Replacement

Only One Replacement

From what I understand my Cardiologist has only planned for one replacement of the mitral vavle. But they always follow it up by saying that advancements are being made every day and they don't want to commit to anything until just before surgery.

One doc even suggested that with all the advances in genetics, one day we would be able to grow our own heart tissue. Unfortunatley, I think that is too far off for most of us. Especially as long as it remains a political decision whether to use stem cells from aborted fetuses. I'm not going to take sides on that issue here, but I will say that if it means heart patience lives, including my own, I'm all for it as long as we are making good ethical decisions along the way.

To give you some background; I was born in Children's Hospital (LA, CA) in 1967. I was 3-4 weeks premature and less than five pounds.

The docs discovered immeadiately that I had some heart issues. Great docs!

I had my first heart cath at age 5 in CA, and a second at age 15 in Tulsa.

I have not had a cath since, but go in every one or two years (OKC) at the request of my PCP for Ultra Sound and ECG.

Last year they said there had been no significant changes since the previous year.

I am due another soon.

A year ago November, I was at work and went into a prolonged cardiac arythmia. My BP was only slightly elavated but my heart rate was over 140 BPM when I arrived at the emergency room and stayed above 120 BPM for over four hours.

They tried all sorts of meds but could'nt get my heart rate down. I really thought I was going to die. It felt like I was running a marathon!

Eventually, on the IV fluids and Verelan (introduced at the ER) my heart rate came down and they sent me home. It was about an 8 hour ordeal and took me a week to recover.

The docs later decided that I was dehydrated and possibly OD on caffiene. I am not so sure I concure, I had only had one cup earlier that day and the episode didin't start until after 3 PM.

At any rate, I have been on Verelan since and have had no further problems with CA events.

There was some mention of other health issues concommitant with heart deformations at birth. I believe this is true in my case. I have had acid reflux since age 8. Thank God for Prilosec. I beleive it is related.

I also have restless legs syndrome which is still largely unknown. I don't know of any connection there other than lack of excercise. LOL

I was diagnosed with TOS as well, which is a physical deformity of the thoracic vertebra that causes your arms to go numb when they are bent at angles greater than 90 degrees. Weird huh? This is good to know though because post-op they will place my arms at my sides instead of across my abdomen (the traditional corpse position). LOL

Oh yes, the docs beleive that one of the meds my mom was on to keep me in utero may have been responsible for the defects. My mom can't remember what the drug was called. Whatever the drug, I'm here today as a result, so I guess I'll take my lumps. Mom had two miscarriages between my brother and I.

I can't afford to travel too far for surgery. I will probably consider docs in the midwest only.

Baptist Medical in OKC has a cardiac unit that has a very good rep. I'm sure that is where they will want me to go initially.

Doug

 

[tobagotwo]

What's your mean aortic gradient and your effective aortic aperture (opening), if you don't mind my asking? Unless it's quite mild, I'm surprised that they wouldn't want to do everything at once.

I know... I'm all questions. Don't worry about it. Answers not required.

Poke around, do some searches through the posts, and get to know some of the regulars here. This is the place to be, if you have to have heart valve issues. You'll learn as much as you want to know, and probably a bit more. You'll meet some awfully nice folks, too.

Best wishes,

 

[StretchL]

Re Stretch:
Do they plan a reduction (aortoplasty?) instead of a replacement because it is assumed they will be reoperating and will replace the aorta in the future? If that's not the case, I don't understand why it's okay to reduce the size of a myxomatous aorta and leave it in place. I get that reducing the size reduces the pressure on the aortic wall, but isn't the tissue still going to be fragile? Isn't it a gamble how long it will hold?

I'm not sure what you mean by a "myxomatous aorta." The only definition of "myxomatous" I could find talk about a benign tumor. I don't have a tumor.

In any case, the conclusion from both surgeons with whom I've met as well as my cardiologist is that the dilatation of the ascending aorta is not a connectivity issue, but rather an issue that has arisen as a result of the stenotic valve. Neither surgeon, one who recommended mechanical valve and one who recommended Ross, indicated the aorta would ever be the cause of a re-op. Of course, who really knows what 15,25,30 years will bring...

 

[StretchL]

One doc even suggested that with all the advances in genetics, one day we would be able to grow our own heart tissue. Unfortunatley, I think that is too far off for most of us. Especially as long as it remains a political decision whether to use stem cells from aborted fetuses.

Actually, Doug, it's not stem cells from aborted fetuses that most scientists/doctors are interested in. It's stem cells from embryos that were created for possible implantation but were not needed for this purpose, and are thus headed into the disposal bin anyway.

 

[StretchL]

Doug, your in utero and neonatal experience sounds remarkably similar to mine, down to the birth weight and the meds my mom was on while she was pregnant with me.

That experience with the fast heart beat sounds horrible. I imagine it was terrifying.

I need to e-mail Dr. Stelzer tomorrow. I'll ask him who the best surgeons/facilities are in your neck of the woods. As I mentioned earlier, he used to practice at UO.

 

[Lynlw]

Actually, Doug, it's not stem cells from aborted fetuses that most scientists/doctors are interested in. It's stem cells from embryos that were created for possible implantation but were not needed for this purpose, and are thus headed into the disposal bin anyway.

Actually They are doing research at boston children's and i believe the goal is to grow valves and conduits out of the patients own cells, I talked alittle about it w/ some boston docs about 2 years ago, and then when Justin had his last surgery at CHOP he got a conduit and bovine valve and the doctors at CHOP thought they would be doing trials in about 5 years and thought by the time Justin needs his conduit replaced that is probably what he would be able to get (I know not counting on it) one of the little girls who had the same surgery as justin, parents have been raising money just for this research, here is a link to one of the docs leading the research http://www.childrenshospital.org/research/res_labs/department.cfm?dept_id=9
I just did a search for one of the publications listed and it is pretty interesting from 2003 http://circres.ahajournals.org/cgi/content/full/92/10/1068
So you never know Doug, if you can hold out long enough you may just get lucky, Lyn

 

[StretchL]

VERY interesting stuff, Lynn!

 

[PJmomrunner]

I'm not sure what you mean by a "myxomatous aorta." The only definition of "myxomatous" I could find talk about a benign tumor. I don't have a tumor.

In any case, the conclusion from both surgeons with whom I've met as well as my cardiologist is that the dilatation of the ascending aorta is not a connectivity issue, but rather an issue that has arisen as a result of the stenotic valve. Neither surgeon, one who recommended mechanical valve and one who recommended Ross, indicated the aorta would ever be the cause of a re-op. Of course, who really knows what 15,25,30 years will bring...

Sorry Stretch, "myxomatous" is not right (although I think when one is talking heart tissue, myxomatous tumors are little bitty things within the tissue--not tumors in the measured-in-centimeters sense--could be wrong though). For whatever reason, whether it's increased metalloproteinase activity or fibrillin-1 deficiency or "cystic medial necrosis," the medial tissue of the aortas of BAV are widely believed to be made of horked-up, funky, or dodgy (credit: Aussigal) tissue. It surprises me that the plan is to reduce and not replace. Maybe only your root is dilated???

(Member Annie10 is dealing right now with a 4.5cm aneurysmal aorta which was previously a 4.9cm aorta that was reduced during her 2000 AVR. http://valvereplacement.com/forums/showthread.php?t=18048

http://www.ncbi.nlm.nih.gov/entrez/..._uids=11082359&query_hl=4&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/..._uids=12842243&query_hl=6&itool=pubmed_docsum

http://72.14.203.104/search?q=cache...atous+aorta+bicuspid&hl=en&gl=us&ct=clnk&cd=3

http://jtcs.ctsnetjournals.org/cgi/content/abstract/127/3/686

http://www.ncbi.nlm.nih.gov/entrez/...ve&db=PubMed&list_uids=14502156&dopt=Abstract

 

[Lynlw]

I understood what you were saying, but the recomendation for adults who have congenital heart defects to see a pediatric surgeon is alittle out dated, Since there are now surgeons that specialize in adults w/ CHD that is who should be recomended. Some CHD surgeons operate on both children and adults, while others just operate on children, and I believe now there are some that specialize in just adutls w/CHD, which is alot different than a doctor that just operates on adult issues, like bypasses ect, unless i just made it more confusing, lyn

not to beat a dead horse lol but
I was just thinking about when we were deciding who/where Justin would have his last surgery in 05, he was 16 when we started looking so obviously would go to a ped heart surgeon, but one of the very knowledgble Moms gave me very good advice, she told me since most of the kids having surgery are probably younger than 5, one of the things I should do is talk to all the CCUs I was considerring going to and ask them how much experience they have in taking care of patients Justin's age and size (5 10 150 at the time) because it is alot different taking care of adults in amount of pain meds ect ect and some of them didn't have very many young adults in a year.
so If I were an adult going to a childrens hospital, I would be sure to find that out, Lyn

 

[tobagotwo]

StretchL...

Myxomatous is an appropriate term. You don't necessarily have myxomatous tissue where your valve is, it's just something you should bear in mind as a possibility. It isn't referencing tumors, however. When discussing connective tissue disorders, myxomatous tissue refers to tissue that has fibrous or gel-like intrusions that cause it to have less strength, resiliency, and rigidity than regular tissue. It can cause stitches to pull through on a valve attachment and create peripheral leakage, or cause an affected pulmonary valve to go limp and regurgitant when used to replace an aortic valve. It's not uncommon for it to be part and parcel of BAV disorders. A fair percentage of mitral valve prolapses are due to mildly myxomatous tissue as well.

Doug...

OKC has some fine thoracic surgeons. Look for experience and number of surgeries done both by the doctor and in the institution. If it's a teaching hospital, ask if the surgeon does his own work.

Best wishes,