I recently found this site and am so grateful for all amazing info and support it provides!I’m 53 y/o female. When I was 12, I was ...Read more
Hello everyone,
I recently found this site and am so grateful for all amazing info and support it provides!I’m 53 y/o female. When I was 12, I was diagnosed with Hodgkin's and had neck/chest radiation. Several years ago I was told that I have aortic stenosis, the result of a radiation I endured when I was a child. It looks like I’ll need to have aortic valve replaced very soon. The surgeon advised against an open heart surgery, again due to the chest radiation, and proposed TAVR. I’m just beginning to learn all about it and would appreciate your wisdom, stories and advice on what to ask the surgeon. Since I’m 53, and I know that I can only have two TAVRs, what type of bio valve might work best/longer for me? Did any of you have TAVR where a separate device was catching calcium deposits to prevent stroke? Is it worth it? I’m in Los Angeles and have been seeing Dr. Makkar at Cedars Sinai and his PAs. I didn’t see his name on your trusted docs list. Anyone knows him? I really appreciate your input and support ! Thank you.
Cathleen Weed Hi Inna! Yes, I had TAVR with Dr. Makkar at Cedars Sinai! It was incredible and literally a walk in t ... Read more
Cathleen Weed Hi Inna! Yes, I had TAVR with Dr. Makkar at Cedars Sinai! It was incredible and literally a walk in the park compared to the previous open heart surgeries I had been through. My TAVR was in 2015 and I'm still going strong! The Edwards Life Science bovine bioprosthetic valves are incredible. They are the Lamborghinis of the valve world. They are now using a special coating to delay calcification which helps to lengthen the life of the valve by preventing/delaying stenosis. I believe the device you are speaking of is the Sentinel. I didn't use it but that is because Dr. Makkar didn't feel I needed it. I had zero complications. I would follow his advice. He is #1 in the world at this. Everything went really well. I even left the hospital the day after the procedure. I was 44 when I had it done. I am 52 now. :) So he has done A LOT more of these procedures since helping me. I have sent friends to him for TAVR too. One of my friends had hers done just last month and she's doing great. Hope that helps :) p.s. previous to the TAVR I had 3 open heart surgeries with Dr Alfredo Trento there at Cedars Sinai as well. You will be in incredible hands there!
Ana Brusso Hello Inna, welcome. I can’t answer your questions and don’t know Dr.Makkar. As some of our heart ... Read more
Ana Brusso Hello Inna, welcome. I can’t answer your questions and don’t know Dr.Makkar. As some of our heart warriors on this site would always suggest is to get a second or third opinion. You want to be sure of what is best for you. God bless you on your heart surgery journey 🙏❤️
Brady Busch Hi Inna, When first talking to my surgeon or another cardiologist,they said that three TAVR's could be done.That might depend,on the size of the first one.Mine was SAVR,because of a needed mitral repair also. I haven't heard of excess calcium causing strokes,but it might be possible.Blood clots are usually mentioned and they can form in the left atrial appendage and be dislodged by atrial fibrillation.There is a procedure called the Watchman,where the doctor,ties off or implants a screen at the entrance,to stop that.Maybe that's something to ask about. By the way,my tissue valve is an Edwards,like Cathleen wrote about,an Inspiris Resilia.
Brady Busch Hi Inna, When first talking to my surgeon or another cardiologist,they said that three TAVR's could be done.That might depend,on the size of the first one.Mine was SAVR,because of a needed mitral repair also. I haven't heard of excess calcium causing strokes,but it might be possible.Blood clots are usually mentioned and they can form in the left atrial appendage and be dislodged by atrial fibrillation.There is a procedure called the Watchman,where the doctor,ties off or implants a screen at the entrance,to stop that.Maybe that's something to ask about. By the way,my tissue valve is an Edwards,like Cathleen wrote about,an Inspiris Resilia.
Rita Savelis Hi. I'm sorry that you have to go through this. I also had Hodgkin's as a teenager in 1977 and open h ... Read more
Rita Savelis Hi. I'm sorry that you have to go through this. I also had Hodgkin's as a teenager in 1977 and open heart surgery in 2015 (when I was 53). At first I was told by a cardiologist that my aortic valve needed replacement, but after I saw a surgeon it became evident that both my aortic and mitral needed replacement (due to radiation induced stenosis). During surgery my surgeon also looked at my tricuspid valve and saw that it needed to be reinforced/repaired so that was done as well. He said that he had seen this problem in other radiated patients. I don't know your surgeon, but as a former Hodgkin's patient it might be good for you to have a surgeon or interventionist with experience on radiated hearts as each one is singular. Sometimes TAVRs are used as an interim device to buy time and surgery is then done later when/if other valves need repair/replacement. Take care.
Inna K Thank you ALL for sharing your stores and love !!! From my cardio CT, I just learned that my mitral ... Read more
Inna K Thank you ALL for sharing your stores and love !!! From my cardio CT, I just learned that my mitral valve is also not in a good shape... Waiting to see if I'm still a candidate for TAVR. Otheriwse, I'll have no choice but take a chance with an open heart surgery. Because of the radiation to the chest years ago, I'm scared and praying there won't be any complications.
Rita Savelis - did you also get radiation for Hodgkin's? How did your open heart surgery go?
Learn about Rita Savelis, patient diagnosed with Aortic Stenosis, Mitral Stenosis
Rita Savelis Yes Inna I had chest radiation and MOPP chemotherapy in the 70's. This is why I thought that you als ... Read more
Rita Savelis Yes Inna I had chest radiation and MOPP chemotherapy in the 70's. This is why I thought that you also might have several valves with stenosis. The mitral valve is not a great candidate for TAVR. My open heart surgery went well (8 years ago) but I ended up needing a pacemaker a few weeks after surgery (a possible side effect but that only occurs about 3% of the time). Recovery was long and I spent 3 weeks in hospital and then 3 more weeks in a live-in rehab hospital because I was too exhausted to go home. Each person has their own experience but recovery takes time. You have to let your body heal and give it the time it needs. It's all singular and personal. There is a facebook group for former Hodgkin's patients (Hodgkin's lymphoma/disease survival and late effects 1960 to mid 2000s) and also a website (Hodgkin's International) that has information for those who had Hodgkin's and are now experiencing some of the late effects. Take care.
I am from: Los Angeles
I recently found this site and am so grateful for all amazing info and support it provides!I’m 53 y/o female. When I was 12, I was ...Read more
I recently found this site and am so grateful for all amazing info and support it provides!I’m 53 y/o female. When I was 12, I was diagnosed with Hodgkin's and had neck/chest radiation. Several years ago I was told that I have aortic stenosis, the result of a radiation I endured when I was a child. It looks like I’ll need to have aortic valve replaced very soon. The surgeon advised against an open heart surgery, again due to the chest radiation, and proposed TAVR.
I’m just beginning to learn all about it and would appreciate your wisdom, stories and advice on what to ask the surgeon. Since I’m 53, and I know that I can only have two TAVRs, what type of bio valve might work best/longer for me? Did any of you have TAVR where a separate device was catching calcium deposits to prevent stroke? Is it worth it?
I’m in Los Angeles and have been seeing Dr. Makkar at Cedars Sinai and his PAs. I didn’t see his name on your trusted docs list. Anyone knows him? I really appreciate your input and support ! Thank you.
p.s. previous to the TAVR I had 3 open heart surgeries with Dr Alfredo Trento there at Cedars Sinai as well. You will be in incredible hands there!
When first talking to my surgeon or another cardiologist,they said that three TAVR's could be done.That might depend,on the size of the first one.Mine was SAVR,because of a needed mitral repair also.
I haven't heard of excess calcium causing strokes,but it might be possible.Blood clots are usually mentioned and they can form in the left atrial appendage and be dislodged by atrial fibrillation.There is a procedure called the Watchman,where the doctor,ties off or implants a screen at the entrance,to stop that.Maybe that's something to ask about.
By the way,my tissue valve is an Edwards,like Cathleen wrote about,an Inspiris Resilia.
... Read more
When first talking to my surgeon or another cardiologist,they said that three TAVR's could be done.That might depend,on the size of the first one.Mine was SAVR,because of a needed mitral repair also.
I haven't heard of excess calcium causing strokes,but it might be possible.Blood clots are usually mentioned and they can form in the left atrial appendage and be dislodged by atrial fibrillation.There is a procedure called the Watchman,where the doctor,ties off or implants a screen at the entrance,to stop that.Maybe that's something to ask about.
By the way,my tissue valve is an Edwards,like Cathleen wrote about,an Inspiris Resilia.
Rita Savelis - did you also get radiation for Hodgkin's? How did your open heart surgery go?
Thank you!