Alex - I'm looking at AVR in the near future for a BC aortic valve. I too have considered Dr Glower at Duke and my opinion concurs with yours as to his skills. Probably in pretty good hands with Glower, surgery 101 for him. I look forward to hearing of your successful surgery and recovery. Best wishes and be strong.
Let me comment on your choice of valve material:
1. Above all, follow your surgeon. Select the valve he reccomends, and has the greatest experience/comfort.
2. The coumadin routine could be a nuisance, and will not change. Evaluate side effects, too.
3. The 20 yr life for tissue valves is based on history. The experience is good, so the number gets bigger. Good bet that OHS will be obsolete in 20 years and your next one (if needed) will be via less invasive procedure.
Whatever you decide, you will be fine. You status now is the most uncomfortable part of the journey. Best wishes.
Hi Alex, sorry to hear that Dr. Gillinov is not going to be available, but I have heard good things about Dr. Roselli as well. Actually, I think I would feel comfortable with any of the surgeons at CCF. As for the dilated aorta, I also had a 3.8 cm dilated aortic root. Everyone has assured me that this is only mildly dilated, as a result of the bad valve and therefore, not of concern. Dr. Gillinov referred to what he did as "paring it down a little" when he replaced the valve. I just had my yearly CT done, and it is in fact now only 3.6 cm, apparently somewhat less dilated since valve replacement. It is my understanding that anything under 4.0 cm is not considered an aneurysm and therefore does not warrant a graft or anything. When you talk with Dr. Roselli express any concern you might have and I'm sure he will put your mind at ease. When are you scheduled to see him? You will be amazed at CCF, I promise!
Linda Dixon, AVR 3/13/12
Hi Alex, I just saw your journal and wanted to say welcome. I'm not on here very much any more...once you're on the other side of surgery you tend to "get back to normal stuff" instead of being all consumed by "all things open heart surgery". I can tell you that after much research, knowing for about 10 years that I would eventually need my bicuspid aortic valve replaced, I decided on Cleveland Clinic and Dr. Gillinov as my surgeon. It was the wisest decision I ever made, in my humble opinion. I traveled from SC for the surgery and would do it again tomorrow if I had to. CCF is phenomenal and Dr. Gillinov is one of a kind. I absolutely love him! The consierge at CCF will handle all of your travel arrangements if you like and they will send a complimentary limousine to pick you up from the airport and also take you back when you are ready to travel back home. I had surgery on March 13, 2012. My valve had to be replaced, could not be repaired. It is your choice as to what type of valve you want, but Dr. Gillinov did "guide me" to choosing biological (bovine) rather than mechanical. I can honestly say that all of the "waiting" prior to surgery was much worse than the surgery itself. It was almost a non-event for me. I was discharged on day 4 and flew back home on day 5. Pain was minimal and it really could not have gone any better. My biggest complaint was neck and shoulder discomfort that I'm told is from the way you are positioned on the OR table. I mainly chose CCF because of their reputation and experience in case of complications. I had no complications at all. I have since emailed Dr. Gillinov with various questions, etc. and he has responded to every one of them and actually very quickly. Good luck in making your decisions, this is the hardest part along with the waiting. Honest! If you have questions, just ask. Also, another very good thing about CCF....everyone there is on salary, so you only get one bill! Not separate bills for doctor, radiologist, anesthesiologist, etc. Let me know if I can help in any way. You might want to email me at firstname.lastname@example.org. Like I said, not on here so much anymore, just check in from time to time.
Linda Dixon, AVR 3/13/12
Hi Alex, Welcome to HVJ. You will find this site amazing a nd it will help you so much. I am from Denver also but live in SC. I had my surgery in Greenville SC at St Joseph with Dr Maziarz. He is incrediable. I got such good reports on all the complicated surguries he has done. The main question it to see how many the doctor has done. Dr G has done thousands. Linda Dixon went to himand just loved him. Wherever you decided ask all the questions you can think of and also Adams book will help a lot.You will find out the worse part of all this is the waiting. The surgery isn't all that bad. Good luck to you, I will keep you in my prayers.
Mooving all over
LInda H and Elsie ( my cow valve) AVR 9/19/12
I know you are in the "overwhelmed" stage right now, but I assure you, things will get better once you find a surgeon and are over the initial shock of having to get your heart cut open. CCF is an amazing place. It is probably the most well run institution I have ever experienced......it runs like a well oiled machine. They have done more valve surgeries there than anywhere else in the country, and for me, that was the deciding factor. They have seen and done it all. I know bicuspid aortic valves are difficult to repair and are usually replaced, so that will be a decision you will need to make after you decide on a surgeon. I know Dr. Gillinov prefers biological valves because I asked him in case he wasn't able to repair my mitral and tricuspid valvles. He feels the risks associated with the lifetime use of Coumadin are greater than repeating the surgery at some point down the road. He also pointed out that valve replacements will probably be done percutaneously at some point in the not so distant future.....so no more open heart surgery. Dr. Gillinov is usually booked up a couple months in advance, however, if your case requires immediate attention, they will fit you in. It took a good three weeks to hear back from them after they received my records......felt like forever. Then they wanted me to come for more testing because apparently my echo wasn't real clear.
I would highly suggest you read Dave Van Buren's journal. He did A LOT of research and it is very informative. Just make sure you start with the first one on risk.
Open heart surgery is a life changer. It's scary and overwhelming and stressful. Try to be grateful (after all, you have something fixable!) because it is impossible to be stressed and grateful at the same time!
Peace be with you,
Success rates are dependant on a number of factors, but the most important, in my humble opinion, is the experience of the surgeon and clinic you are at. As for repair versus replacement, I believe the long term success rates of repairs are slightly better than replacements. Obviously many patients getting their valves replaced do not have the option of a repair so that would be a key consideration. From the medical journals I have read, though, is seems pretty clear that a repair is preferred if it's determined that it will likely fix the leak.
I am 36 years old and more details on my surgery and my experience with Dr. G can be found in my journal. Just search for my name by clicking on the "Search for a Patient" subtab above. Would also recommend reading Deb's (below), Linda Dixon's and Chris Hanson. Better to read about a wide variety of challenges and successes that former patients of Dr. G have encountered! Good luck!
Alex---I had AVR at CCF, courtesy Dr. Lytle, in May '12. At the outset I sure was unhappy. As I recall, they sent me a note saying I was "accepted!" How arrogant. Once over that, I went thru preop and surgery without difficulty. I am now a true CCF booster. Your procedures may differ, but once you decide on your surgeon/institution, try to relax, and let the pros take over. Waiting is worse than surgery.
Like Thomas, I had my mitral and tricuspid valves repaired by Dr. Gillinov at CCF. In my opinion, choosing a surgeon is the hardest part......that and the waiting! Ask as many questions as you can think of...... I had 43 questions all written out and Dr. Gillinov very patiently answered them all. He is a very nice human being in addition to being an amazing surgeon. Traveling to Cleveland is not the easiest thing, but it is very doable. Having just watched my 85 year old dad go through valve surgery here in Milwaukee last month made me very glad I went to Cleveland!
Godspeed and good luck! You will be in my thoughts and prayers.
Sorry to hear you are in the same boat as the rest of us are/were. I had my mitral valve repair done by Dr. Gillinov, so if you have any questions about him or the CCF, I'd be happy to give you my two cents. Feel free to read through my journal as well.
MV Repair and Maze procedure on 5/17/12