17 year needing Aortic Valve Repair

[lleonard]

My son age 17 is having surgery February 12th at the Cleveland Clinic. He will be having a repair done on his aortic valve do to his regurgitation. I am so scared of the heart lung machine also. I don't know how I am going to get through the first 3 days. The surgery and the time in the intensive care.

 

[barbwil]

lleonard

lleonard

Lleonard, You are probably not getting the answers you are looking for because you are posting on the end of others' posts. Why don't you tell us here about your son's upcoming surgery?

Here is Dr Gosta Pettersson's profile: http://www.clevelandclinic.org/heartcenter/pub/staff/searchdetail.asp?staffid=3006

Several of us on this board have had him as a surgeon and were very pleased with the outcome.

You will find an amazing support here; just tell us your story.

 

[Phyllis]

Welcome! I'm sure that there are lots of people here that have surgery with both of them and they will be along soon. In the meantime, put the doctor's names in the search box and you will come up with threads mentioning those doctors.

 

[Phyllis]

I found your post on the surgery date for your son in another thread and put it on the calendar. It's a little slower on weekends, but hang in there- lots of support is on the way.

 

[Arlyss]

Reason for Aortic Valve Regurg at 17?

Reason for Aortic Valve Regurg at 17?

I am wondering if any physician has explained the underlying cause of your son's aortic valve failure at his young age? Was he born with a bicuspid (two leaflet) or other abnormal leaflet formation of his aortic valve? I am aware of some in this age group with bicuspid aortic valve that required either repair or replacement. There are other connective tissue disorders, such as Marfan and Ehlers-Danlos, and other conditions that do not even have a name - they all may affect the aortic valve and the aorta.

It is so important to understand as much as possible about the big picture with your son. If he has bicuspid aortic valve or some other form of connective tissue disorder causing the valve failure (the most common reason for a leaky valve at this age), understanding that and being sure he is followed going forward can make a tremendous difference. So often there is focus on the immediate issue - in this case the valve - and that is appropriate. But it should be in light of the bigger picture.

Many individuals with bicuspid aortic valve or some other form of connective tissue problem go on to develop dissection (tearing) or aneurysm (abnormal bulging due to weak tissue) of the aorta in their chest. If this were my family member, I would ask the doctors about the aorta also, get documented measurements of its diameter, and put a plan in place to monitor it going forward.

As he transitions into adult life, if he understands his condition and always is covered by excellent health insurance, he will have access to the best physicians on an ongoing basis.

Regarding the surgeons you may meet, if I were doing this with my loved one, I would ask a number of questions regarding their knowledge of your son's condition, the approach they would take in the surgery and why, and how many other of this exact procedure they have done in people like your son and the results in them over a period of time. There is no "cure" for the tissue that is failing - right now the aortic valve tissue that is unable to close properly, resulting in a backflow of blood into the heart again - but there should be the best possible repair based on state-of-the-art experience.

You have my very best wishes as you meet with the surgeon this week.

Arlyss

 

[Curtsmum]

Dont have any advice on surgeons, just wanted to wish your son the best of luck with his surgery

 

[Trinityheart8891]

lleonard,

I am 21, and too have aortic regurg due to bicuspid aortic valve, I also have some other issues including mitral stenosis (see signature) I have had 2 open heart surgeries (one in 1988 at age 1, and one in 1991 at age 4) I am looking at at least one more (unless they come up with some other brilliant "plan" between now and the time my valves deteriorate in the next 5 or so years) I'd be happy to talk to you and your son, I dont have any specific advice, but I am here if you need me

 

[cp172]

Hi Lleonard,

Welcome to VR. I have no advice but you will get plenty here. Keep a watch on this thread.

God Bless

 

[Bina]

lleonard, welcome to the group!
Don't worry too much....this week you will meet with the Doctor and he will be able to explain exactly what is going on and what your options are. Please let us know how the visit turns out.

 

[thenewmarket]

Please take advantage of this wonderful forum and learn everything you can before your son's surgery. The more you learn,the greater your peace will be concerning this surgery. In an earlier post, Arlyss raised some excellent questions and suggestions for you. I always say when Arlyss "speaks" I listen. Also, go to www.bicuspidfoundation.com for tons of educational information about bicuspid valves and other helpful information.

My husband actually had a bicuspid aortic valve repair at Cleveland Clinic in September. Dr. Svensson was his surgeon. If I can help with information about what to expect before and during surgery I would love to talk to you. I will send my phone number through a private message.

What tests have they done on your son to be so confident that his valve can be repaired instead of replaced? My husband actually went in for surgery expecting to have his aortic valve replaced but it was able to be repaired instead. It seems to me that in most cases, the decision to repair is made once the surgeon gets to the heart and can adequately assess the situation.

Please know that everyone understands what you are going through!

 

[PillarPaul]

Hi, Leonard. Five years ago I was exactly where you were and this forum was a godsend with comfort and knowledge. I, too, had an aortic valve repair. However, just a heads up that aortic valves are rarely repaired and usually must be replaced. The surgeon won't know of course until the surgery but I was a very, very lucky person in that I had a hole in a leaflet that was "covered over" with a piece of felt. You might ask the surgeon about this because if it can't be repaired you will have to decide between a mechancial or animal valve and there are pluses and minuses to each that the board here covers very well and you'll need to know about way before the surgery. Best of luck.

Paul

 

[boomersooner]

Howdy,
I just wanted to welcome you to the group. I am 25 and just had aortic valve repair and aortic root and sinus reinforcement less than two weeks ago. I know I am not 17 like your child but I think I can relate a little since we are both so young. I just wanted to share my story with you to ease your mind a little. I also have a bicuspid aortic valve. The surgeon was able to take my regurg from a 4+ down to 0! I still have only two cusps even though the valve was repaired but with new techniques and great skill of the surgeon he was able to stop the regurg. Repair is usually not able to be done from what I have been told and the surgeon will usually not know if he can repair the valve until he gets in there. We had two additional options picked for the surgeon to do just in case he was not able to repair my valve. The entire procedure lasted around 3 hours I believe and I actually feel fantastic! I am sore from the sternum cut and all that jazz but I really can say that I feel better. I was really freaking out about being so young and having open heart surgery but there actually some good statistics about young people and valve disease. I am sure the doctor told you that about 2% of people have a BAV and most of them are male so what you and your child are going through is not that uncommon. If you have any questions I or anyone on this site would be happy to help you out in any way we can!

 

[Bad Mad]

Welcome


I was born with a "murmur" but told at age 8 that it had went away.

At 23 after breaking my jaw in a match it was discovered that my aortic valve was leaking very severly and that my valve was bi-cuspid. I had no symptons.

I was always extremely active and my training regime involved a mixture of aerobic and anaerobic (stength) training. I often wondered and probably assumed that the more active a person like this is, the quicker their valve problems will come to the surface. I cannot say this for certain though it does stand to reason.

I am 30 now and had my 2nd AVR 5 and a half weeks ago... And feel great.
Feel free to ask any questions. Good luck.

 

[francie12]

Welcome

Welcome

I'm so glad to see that you made it onto the forum. As you see, the people here are very generous with their time, knowledge, experience and warm support. Please feel free to continue to contact me through either site. I'm sending more good luck thoughts your way.

 

[bbb]

Hello,

I know what you are going through is quite shocking and very scary. The more you get educated about Open Heart Surgery and meet the surgeons and doctors, the better you will feel. Another bigtip is to try not to worry about all the details, keep strong in your inner peace as both you and your son will need to draw on this inner peace for strength.

Also, Cleveland Clinic is fantastic and you will feel you are in the best hands once you are there. Whatever arises, you will feel they can handle it. I am now 7 weeks post surgery from Cleveland Clinic and feeling great. You son should have a strong recovery as his body is young and that is hugely in his favor.

Please do look to everyone here for support. The job of caretaker and Mom is one of the hardest, and the support you find here can bring you the peace and courage you will need for the days ahead.

All the best, Betsy

 

[Bryan B]

Well just to be different (as usual ), I was diagnosed with AI (regurgitation) at age 17 but it was not due to a bicuspid valve. I was born with a rather large VSD, and over the years it got smaller but never closed. It reached a point where the VSD became small enough that it was causing a "suction" action instead of a "flowing" action. This suction was affecting one of my aortic valve leaflets by not allowing it to close which in turn was causing the regurgitation. I'm pretty sure that if I was 17 today (in my dreams ) they would have gone in and patched the VSD and repaired any damage to aortic valve leaflet that may have occurred from the suction the VSD caused. But it was 1978 when I was 17 and it was either repair the VSD and replace the valve or continue to monitor it. Since I was asymptomatic they decided to continue to monitor it. I did fine until age 43 when I contracted infective endocarditis (due to the VSD and by then deformed aortic valve leaflet) and that meant a VSD repair and an aortic valve replacement.

I bring this up just to remind everyone that while bicuspid valves seem to be a very common problem there are less common reasons for aortic valve disease that may cause regurgitation.

Footnote: My surgeon actually tried to repair my aortic valve leaflets during surgery...took me off of H/L bypass to test it...then decided that he wasn't comfortable with the repair holding up permanently...so he went ahead with the Ross Procedure.

So lleonard I was actually on the "heart lung machine" twice during the same surgery and it didn't affect me at all...well except ever since then I have this problem with typing out really long posts.

 

[briansmom]

lleonard,
My son had 3 OHS in a 9 month period. I wasn't able to prepare for the first 2 and it was, to be blunt, hell on earth. We knew the next surgery was coming and I did a lot of research and found this wonderful forum. These people are the greatest group of people and were so helpful and supportive, I couldn't have gotten through his last surgery without them. I also gave in and got a prescription for Xanax that I took in the weeks leading up to the surgery so that I could sleep. You need to be in the best mental and physical shape that you can be in for your son's surgery also. I don't know your son's story and hopefully he is relatively healthy going in to this surgery. If he is, you will be amazed at how quickly a 17 year old can recover. Feel free to ask any questions. Please keep us posted on how you and your son are doing.