Does anyone know anything about the long term affects of a condition know as Coarctation of the Aorta? My son has been diagnosed with this condition and the only web sites I can find on this tell me what the condition is. I want to know if he will still have a heart murmur after the corrective surgery, and if we can expect him to have problems after the surgery. I know this isn’t a typical type of question, but I figured that you guys seem to know everything about everything else, maybe you could help with this. Maybe even a website to answer my questions about post surgery and long term effects.
justa guess but why not ask the doctor that diagnosed your son to tell you all about it?
just a thought
eggo
I tried but being an HMO I got the distinct impression that he either:
a. didn’t have the time to discuss it and,
b. didn’t think I would understand
What I did get out of him didn’t really answer my questions. I would ask him a very direct question and he would take 10 minutes to answer without actualy answering the question. I think he should go into politics.
“I tried but being an HMO…”
“I think he should go into politics”
—dkgreath
He already is.
Our new health care system really sucks.
Best wishes to your son.
Peace,
mangeorge
You may have already seen this, but there is a lot of info.
http://www.dencats.org/heart/congenital/coa2.htm
Peace,
mangeorge
Maybe your HMO will pay for a second opinion
(I think mine does). For something like this , I’d want a second opinion in any case. It just isn’t satisfactory to not be able to get answers from the doc. If your HMO is thru work, check with your personnel benefits people about the second opinion, and what your options are when you’re dissatisfied with your doctor.
…or you can go BACK to that doctor with your questions written down, and make sure you do NOT leave until you have those questions answered (let him know you’ll be writing down the answers) and any other questions that arise during your meeting with him. HMO doctor or not, he’s the one who diagnosed the problem, and he should be the one who either takes the time to answer your questions or refers you to someone who can.
Many of us seem to walk into a doctor's office, believing they are gods. I find myself doing it, too. What we all must remember is that they are human, and that we are paying for their time...whether voluntarily or through medical premiums to an HMO provider.
Good luck with your son. Please let us know what you learn.
“There will always be somebody who’s never read a book who’ll know twice what you know.” - D.Duchovny
Thanks for the site it helped much more than any of the others I had visited. The cardiologist running it was cool enough to put a link to his email on the site, and he replied to my email within 2 hours. He was able to answer most of my questions.
I talked with my insurance and they said that they consider the cardiologist the second opinion since I was refered to him through our pediatrician.
I tried this, but he did not have time to meet with me. I insisted on the name of the surgeon. I was finally given the name of the surgeon that would perform the procedure. I called him, and he said that he would be happy to meet with me and answer any questions I may have, with no charge for his time. (I was as surprised as you)
Thanks for all your help guys. I would like to use this thread to keep discussing the state of healthcare and insurance in America.
As a Canadian, I’d like to offer this thought: why the hell are our politicians trying to make our healthcare system just like yours? I like socialized medicine, to the extent that I have a mild phobia of travelling in the US for fear I’ll get sick and won’t be able to pay for it.
Hi dkgreath, sorry about your son, you might try this website: www.pediheart.org. Meeting with your surgeon is great, but remember that they have a very narrow focus, the operative period, and after he checks outta ICU they don’t follow much, it’s in the cardiologists lap. If yours won’t tell you what the score is, play ball with someone else. His long term health will depend on the severity of the malformation and how well the surgery goes. Some heart babies require more than one operation, and some require medication for life. However a normal quality of life is quite possible, they’ve made awesome strides in congenital heart defect repair, sorry I can’t offer you any guarantee. Don’t overlook the ICU nurses that will take care of him post op as an information resource, it’s not unusual for them to be better at communicating than the doc, good luck,
Larry, RN
PICU
I can see some day in the future when people on the internet become library illiterate.
Nothing like pulling out some major medical textbooks there at your library, dear 
I do know how to find the library, and I consider myself a pretty bright fellow, especially in the line of work I have chosen for myself. Unfortunatley I did not decide to become a doctor, so most of the stuff I read in medical book is mumbo jumbo to me. Most of the medical books concerning heart deformities were not geared towards the lay person. I apologize if I have wasted your time by posting such an idiotic, and obvious question on your SDMB. In the future I will try to refrain from such things.
To everyone else, thanks for your help.
Dkgreath: please don’t refrain from posting interesting questions to the message board
if hand wnts to get in a snit handy can get in a snit
DKGreath, I’ve looked at both of the above sites and to my eye it looks like they both provide a pretty fair & accurate description of Coarctation & treatment options (although my knowledge of congenital heart disease is rather limited). I think the first one uses less lingo, and provides more information.
The best way to use a web site is to learn as much as you can from it to ask “intelligent” questions. This is not to imply that you were asking unintelligent questions, but docs do much better answering specific questions (what percent of yourpatients become paralyzed or why are you proposing procedure X instead of procedure Y) as opposed to vague questions/requests such as explain everything about my son’s condition, all the treatment options & everything that might happen to him over the next 20 years.
Bring a printout in with you to your next appointment, with your questions written near the appropriate sections. If at all possible, for a pre-op counselling appointment, both parents should be there. (Docs understandably do resent answering the same questions multiple times to different interested parties).
On the other hand, if you educate yourself as much as possible, and still get stiffed when asking questions, find another surgeon. Have your son’s pediatrician or cardiologist, if he’s seeing one, refer to another physician who is willing to work with you.
Good luck to you all!
Sue from El Paso
members.aol.com/majormd/index.html
dkgreath, hey, don’t give up so easily. It didn’t read as if you went to your library and if a deaf fellow like me can get thru UCSD simply reading books [cause there was no real internet at the time ] Im sure you can find the info. No need to read books full of mumbo jumbo, just get the easier ones.After all, if a deaf person can do it, how hard can it be?
PS: I used to read in the medical library at UCSD. Maybe youll have a medical library near by?