second surgery for subaortic stenosis

I am a 48 year old female with congenital subaortic membrane stenosis. I had surgery 6 years ago to have the membrane removed. My peak gradient was 104 at the time of my surgery, but I was asymptomatic at the time. Now it seems as if the membrane is growing back. My peak gradient is now up to 66, and my cardiologist tells me at my next visit, if it is up to 70 he will send me back to Vanderbilt for more testing, and possibly surgery. How successful is second surgeries for this type of disease? Also, will a second surgery be more risky than the first? What is my life expectancy without surgery and with surgery? I am asymptomatic and excercise regularly, walking on my treadmill at 4 mph at least three times per week. Thank you for your time.

[Cleveland Clinic]

The success of the surgery is about the same.  The membrane however is know to regrow in rare cases.  The surgery, because it's a redo is slightly more risk, your young age is of great advantage to you.  When the obstruction is severe, greater than 70, then the heart begins to thicken to compensate for it, leading to severe diastolic dysfucntion which has a prognosis which is equal to that of patients with heart failure.  At that point, your risk of sudden cardiac death also increases.  I would urge you to have the second surgery but would consider a center that is more experienced with obstructive cardiomyopathy such as Mayo clinic or Cleveland clinic.

[chandrews]

Hi,
I was recently diagnosed with membranous subarotic stenosis and I am 34 year old female. I have scoured the internet, but because I am assuming it is so rare, there is not alot of information on it. I have a specialist at UAB who intially thought I would need surgery soon, but decided to take the coservative approach and wait 6 months to review again.  I will go back and see him in November, but this whole process is very nerveracking with the fear of surgery and what it consists of and recovery.  Any information you could share with me would be so great.  I do have chest pains and strange dizzy spells some.  Thanks for any of your insight.  Also how did you find your doctor at Vandebuilt?  My primary care doctor orginally thought i would end up there for surgery, but my doctor at UAB said they could do it there. I have tried to email Cleveland Clinic to find out about doctors there, but got some kind of blanket email back.  I really appreciate any tips or thoughts you have.  thanks so much.  Courtney

[karleamcg]

Hi,  nice to hear from someone who has been diagnosed with the same disease I have! You are right, it is not a very common disease. Is yours congenital? Mine is, but I wasn't diagnosed until my late thirties. I live in TN, so my cardiologist sent me to Vanderbilt because it is the closest medical center that had a surgeon experienced at doing this particular kind of surgery (actually, he ended up being a pediatric surgeon). Not every cardiac surgeon has experience doing this surgery, so make sure where ever you end up going has an experienced surgeon. Usually it is the larger teaching medical centers. As for cures, there is no cure except surgery, and even then 10% of membranes do grow back. The surgery is of course a major surgery that is not done until it is very necessary, but it wasn't as bad as I thought it would be. I will be honest with you, the first few days after surgery you will feel extremely weak. But after a couple of weeks, you will start feeling fine, I was walking around my block by the fourth week. I went back to work in 6 weeks, I did really well and you  will too. Just do what the Dr. says. I am facing a 2nd surgery in probably the next year or so, not looking forward to it but know it is necessary. I am confident I will come through it fine. You will be in my prayers. I would suggest continuing to do your normal activities if your Dr. says it's okay. I still walk on my treadmill and go to work every day. Keep me updated and let me know if you have anymore questions I may can answer for you!

[chandrews]

Thanks so much for responding back.  I also responded back to your email with questions....you are the only person I have found that  has had this and can answer the questions.  Mine is not congenital, as I had PAT growing up, which was is an arithmia of the heart and I was able to go back and pull echos from growing up to see results.  Were you able to talk to someone who had this surgery before?  On the surgery note, how long were you in hospital?  Did they pretty much tell you from beginning that you were going to have it?  The cardilogist you saw, was he familiar with it?  It seems like alot of times they know about it, but maybe have not treated it before.  Any info of course is greatly appreciated.  Thanks so much for getting back to me!!!