Reoperation need referral

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finding doctors

finding doctors

I feel for you queenie,
kind of know what you are going through in the doctor search, we just haven't had the feeling that one should have about their surgeon yet. Some people that I have talked to have some sort of comfort level and a lot of trust, we have yet to find that so far. I have received many leads though from everyone on here that I am investigating and thank you all so much. We pray we do the right thing. What is a CHD specilist, congestive heart disease, and what does IMO mean, I am kind of new to this. Also you might want to investigate the Mayo clinic, some I have talked to have had some luck there. Also look under my doctor search thread, some have given me some good info there, but more for aortic valve repair. This is really a hard thing to be going through for everyone. Also it is a great idea to go by motor home. We are having problems dealing with how to get back and forth, should we have to travel. I wander if they rent motor homes. Good luck to you, will put you in my prayers along with everyone else.
alpha 1
 
re op doctor

re op doctor

I just sent you a message and I don't know where it went. I have to fix lunch so I will be back.
alpha 1
 
For Alpha...

For Alpha...

alpha 1 said:
...What is a CHD specilist, congestive heart disease, and what does IMO mean, I am kind of new to this...
Click to expand...
CHD is congenital heart disease; IMO is "in my opinion" and sometimes people use IMHO or "in my humble opinion," (which is, IMHO, a contradiction ;) ). You might also see FWIW which is "for what it's worth," or BTW which is "by the way." There are a lot more, many of which I don't know either. Oh, if you see SOB here, it is supposed to mean "shortness of breath."

I believe congestive heart disease has to do with recurring congestive heart failure, and there are usually recurring issues with rapid fluid retention so sodium restriction is important--and if I'm wrong about congestive heart disease, please will someone correct me (kindly) and I'll just delete that part of what I posted here.
 
Queenie, although the material referenced is over seven years old, I copied a post of mine from September of last year, regarding some pannus info I found on-line:

--------------------------------------------------------------------------------

What do we know about Pannus Formation?

Recently there have been several mentions of pannus on VR.COM. What, exactly do we know about it?

Here is one thing that I found, an excerpt from Medhelp.org from seven years ago and the questions were answered by a CCF (Cleveland) cardiologist:

"...I have the following questions:

a) What is pannus and why does it form - is it healing tissue?

b) Is there a non-surgical way of dissolving the pannus or is surgery mandatory?

c) Presumably, either the existing valve will be cleaned or a new valve will be put in (mechanical). How can formation of pannus be prevented the next time over?

d) Are there greater risks associated with a second surgery.

e) Any other information I can get on this will be appreciated.

thank you.

danesh

CCF CARDIO MD - DLB
Cleveland - OH

10/26/00
1. Pannus refers to the development of scar tissue. It is not a desirable type of healing.

2. There is no non-surgical treatment.

3. Probably, she will need a new valve. There is nothing to be done to decrease the chances of scar tissue again. Potentially, a tissue valve can be placed instead of a mechanical valve, though pannus formation is still a risk.

4. Second time surgery is at an increased level of risk.

5. There is nothing that she or her doctors did wrong; this is just one of the possible complications of having an artifcial valve."
__________________
 
doctors

doctors

I just left 2 messages and who knows where they are they didn't end up in this thread. Anyway I was saying that a lot of people have had good to say about the Mayo clinic. Just a suggestion. I have been having the same problem, and everyone has been very helpful. We are invetigating some leads.
Also what is IMO and CHD specialist. Don't know those terms yet still learning.
Also it is a great idea to use a motor home if you are going far. I still don't know where we are going and transportation is a problem, I wander if they rent motor homes. Thank you all for being supportive.
alpha 1
 
I wonder if there is any new research to try other ways of getting rid of pannus? There surely is but is anyone aware of any?

I don't know if this is a possibility but I recall my dad was trying to get alcohol ablation to help with his hypertrophic cardiomyopathy--the alcohol ablation would cause controlled and isolated heart damage to cause the thickening of the walls of his heart to stop growing, similar to shaving the heart walls, but it wouldn't grow back with the alcohol injections as it can with the heart shaving techniques--and I wonder if something like that can be done with pannus formation.
 
lost and found

lost and found

I finally did see my info, it must take a few minutes to show up on there, I guess I am just in too big of a hurry. Besides having a bav that just wears out, has anyone ever heard of fungus or mold causing valve problems, or are there any other weird things that could cause it to go bad, that anyone may have heard of.
alpha 1
 
alpha 1 said:
I finally did see my info, it must take a few minutes to show up on there, I guess I am just in too big of a hurry. Besides having a bav that just wears out, has anyone ever heard of fungus or mold causing valve problems, or are there any other weird things that could cause it to go bad, that anyone may have heard of.
alpha 1
Click to expand...
Hi Alpha - Sometimes, if there are enough posts, the threads go on for more than one page. I think your posts that seemed to be missing were just on the second page. Hang in there; you'll get to understand more and more about how to navigate the site.
 
Hi,

I would recommend the Mayo Clinic. I had my reoperation there and am planning on going back there for my third surgery whenever that time comes. My surgeon was Dr. Dearani. I have nothing but good things to say about him. It is a world class institute with many excellent heart surgeons.

Best of luck,
Brad
 
I am in Atlanta and my surgeon was Dr. James Kauten for both my repair and my redo (I ended up with a mechanical MV). He is w/P'tree Cardiovascular. He did my brother's repair, who lives in Miami. He told our cardiologist he would fly anywhere in the U.S. and he recommended Dr. Kauten. However, since I know you are looking at a redo, I had consulted the Cleveland Clinic when it was time for mine and I cannot remember the name of the dr. but he had a great track record for redo's. I decided to stay at home in Atl. for my surgery for many reasons, and am happy with my results, but I was very close to flying out there. I had gone to the Cleveland Clinic's website, and the specialities are listed with each dr. Everyone was very helpful over the phone when I called, so you could also try calling. Good luck.
 
alpha 1 said:
I finally did see my info, it must take a few minutes to show up on there, I guess I am just in too big of a hurry. Besides having a bav that just wears out, has anyone ever heard of fungus or mold causing valve problems, or are there any other weird things that could cause it to go bad, that anyone may have heard of.
alpha 1
Click to expand...

Hi Alpha, sorry CHD is Congenital Heart Defect, meaning you were born with your heart problems, technically BAV is a CHD, but there are also major ones where the heart is missing sections or they are in the wrong place or you have holes. You also can be born with electric or rythym problems. Other heart problems are usually known as Aquired. Alot of the babies born w/ life threatning CHDs need 1 or more surgeries as babies/young children (a few of the complex CHDs need 2 or 3 step repairs)and go to pediatric cardiologists, since more kids born with CHD are reaching adulthood, there became another specialty, who are Adults w/ CHD cardiologists. Surgeons that do alot of surgeries on Adults w/ CHD usually also operate on the children so they have alot of experience w/ multple redos, (my son is 19 and has had 5 OHS, (Open heart surgeries) plus surgery for an infection in his sternum and pacemaker surgery). Alot of the CHDs involve missing or deformed valves as well as problems w/ the aorta or pulmonary artery as part of their CHD, so Adult/CHD surgeons usually have alot of experience w/ valves. What I think of as "regular" heart surgeons have most of their experience in Aquired heart surgeies, like bypasses but also do valves. But there are also surgeons that specialize in Valves/aortas.
As to your other question, alot of valve problems are caused by getting a bacterial infection in your heart, endocarditis (I'm sure fungus could also cause probelsms, but usually it is bacteria)
As for where to go, is insurance and issue or can your son go anywhere he would like?
Lyn
 
My husbands surgeon was John Puskas at Emory. We were very pleased with him and all the nurses on the CCU floor had only good things to say about him.
 
Queenie,

When reading Lyn's post above, I forgot to mention that Dr. Cooley in Houston, has diagnosed my valve disease as: "rheumatic valvular heart disease complicated by bacterial endocarditis." Just thought you should know that. Take care & best of luck in finding the best surgeon around to do your surgery! I will keep you in my prayers! :)
 
Alpha-1 You can actually rent motorhomes. If you don't readily see that in your yellow pages. Call a dealership in your area and they should be able to direct you. My husband replaces the flooring in motorhomes so we have connections. We will just buy one and sell it when we are finished with it. Thankfully many come with recliners which is a necessity for me after heart surgery. I couldn't sleep in my bed for weeks last time.
 
Reop-Queenie

Reop-Queenie

Has anyone ever heard of Dr. Gosta Pettersson of the Cleveland Clinic, I think I heard or read that he does a good bit of re-ops. How do you know for sure who is good and who isn't? Good luck queenie.
alpha 1
 
alpha 1 said:
Has anyone ever heard of Dr. Gosta Pettersson of the Cleveland Clinic, I think I heard or read that he does a good bit of re-ops. How do you know for sure who is good and who isn't? Good luck queenie.
alpha 1
Click to expand...

Do a SEARCH on VR.com for "Pettersson" (sp?) and you will find many posts mentioning his name. To the best of my knowledge he is a Highly Respected Surgeon and one of the Top Guys at CC.

If you GOOGLE his name you should find several links to him, including a list of surgeons at CC with a brief listing of their education / residencies / and interests.

'AL Capshaw'
 
Dr Glower

Dr Glower

Hi Queenie
I have not posted for a very long time.. but I do lurk from time to time and jump in if I feel I can help. I lived in Raleigh and had my AVR and triple bypass done in 2001 by Dr Glower at Duke. There have been a few of us who have had him do surgey. I can highly reccommend him. I am not sure if he is a "redo" specialist..but if you contact him.. I am sure that he would be honest and let you know if he is the right surgeon for you. I have moved to Columbus Ohio and if I should need surgery again..since I now live near Cleveland Clinic.. I would probably head there.There are a number of surgeons at Cleveland that I have heard that are "redo" specialists. Good Luck
Joan
AVR and triple bypass St Judes Toronto Stentless Porcine Valve 9/25/01 Duke Medical Center Dr Donald Glower
http://www.dukehealth.org/physicians/72D4B4101FC90F4285256DFD006A9242?search_highlight=glower
 
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