I understand I will need open-heart surgery for either a mitral valve repair or replacement. My next event is a TEE this week. Do you have any suggestions about ...Read more
I understand I will need open-heart surgery for either a mitral valve repair or replacement. My next event is a TEE this week. Do you have any suggestions about what forums I should join or where to look for learning? I haven't yet found much, but your listing showed activity a day ago, and you seem to have had an experience similar to what I now face.
-- Steve
Timothy Williams I used this forum the most, but benefit here mostly starts once you have a surgery plan/date. Read more
Timothy Williams I used this forum the most, but benefit here mostly starts once you have a surgery plan/date.
My advice is find an institution (hospital/surgery center - "top list" on this forum under "heart hospitals") that is high volume and highly regarded. Determine if your insurance includes desired option. Surgeon and their team is really important. You want a team that does this full time. I was fortunate to have Univ of Mich Cardiac Center 1.5 hours away and felt good about first surgeon they paired me with. Refer to CardiacOutcomes_2016.pdf (umich.edu) for reference of scope and scale. Seems to be most recent publication.
As I was told more about my needs, I tried to research related white papers about procedures. Was hit or miss on usefulness. Have to take with grain of salt as context is everything and some material is biased marketing from different surgery centers (these procedures are big money makers for hospitals and there are many surgeon's trying to be "Dr. Famous" touting their innovative solutions). I eventually decided to trust my surgeon and focus on diet, rest, exercise leading up to procedure.
If you have any further questions I might be able to help with, please let me know.
Richard Munson The difference between repair or replace is major because repair is preferred if it is possible. You ... Read more
Richard Munson The difference between repair or replace is major because repair is preferred if it is possible. You should find a surgeon in your area that specializes in repair and consult with him or her. You can usually find this out by reading their bios. Also consider consulting with a surgeon that does minimally invasive. You may not be a candidate but it pays to know up front. My experience tells me that a surgeon who does not do these procedures may not recommend checking one that does. Ego, pride, who knows.
Timothy Williams Agree for sure on repair. I was so relieved when I woke up to that confirmation. I'm uncertain abou ... Read more
Timothy Williams Agree for sure on repair. I was so relieved when I woke up to that confirmation. I'm uncertain about whether minimally invasive is equal, better or worse than sternotomy in regards to achieving repair. That is separate issue to fixing the heart. I pushed my surgeon on it as I was afraid of sternotomy and he said, the best chance for him to repair my valve was to give him full access. His view was minimally invasive is for those that can't recover from sternotomy or put high priority on incision aesthetics. I learned Univ of Mich only does 15% minimally invasive yr after yr. Seems to me if results were so much better then it would be a bigger or at least increasing %. At end of day, I decided to trust the surgeon/institution on his preferred approach and am very fortunate everything worked out.
I agree with Adam: good stretching helped. I like Pilates and the movements helped significantly during the first few weeks, until full motion ...Read more
Hello,
I agree with Adam: good stretching helped. I like Pilates and the movements helped significantly during the first few weeks, until full motion came back. I also liked to write down what I could achieve daily, in order to do a little better the next day while being reasonable.
Blessings, Go Blue!
David
Adam Pick David, Great thoughts. Love the journaling idea. And yes... Go Blue!!!
Timothy Williams David - thanks! I haven't tried Pilates and need to.
Timothy Williams David - thanks! I haven't tried Pilates and need to.
Timothy Williams David - thanks! I haven't tried Pilates and need to.
Timothy, I didn’t start full golf swings for 4 months after surgery. I believe it was core building exercises that really helped the process…Little ...Read more
Timothy, I didn’t start full golf swings for 4 months after surgery. I believe it was core building exercises that really helped the process…Little by little until you fully regain your full strength and flexibility!
Timothy Williams Thanks! I've been working on is core and stretching. I have the mobility back, just unsure of testi ... Read more
Timothy Williams Thanks! I've been working on is core and stretching. I have the mobility back, just unsure of testing my sternum! When you were at 4 months, did you have any pain or tenderness remaining? Mine today at 8 weeks is infrequent and very faint and not sure if that is acceptable or sign of caution.
Timothy , you ‘re doing really well . Pace yourself and listen to your body . Everyone is different , recovering from surgery is different for... Read more
Timothy , you ‘re doing really well . Pace yourself and listen to your body . Everyone is different , recovering from surgery is different for everyone too .
Timothy, best wishes! I bet you'll do fine, better than you expect. I had mitral regurgitation, had surgery in September 2021. I recovered quickly, had very ...Read more
Timothy, best wishes! I bet you'll do fine, better than you expect. I had mitral regurgitation, had surgery in September 2021. I recovered quickly, had very little discomfort. All the stuff in the hospital wasn't nearly as scary as I had anticipated.
Timothy - My thoughts and prayers are going out to you, your family and your medical team today. As a University of Michigan alumni, I'm doing by best to... Read more
Timothy - My thoughts and prayers are going out to you, your family and your medical team today. As a University of Michigan alumni, I'm doing by best to channel lots of healthy, heart-pumping thoughts from Los Angeles to Ann Arbor for you. Go Blue! Go Timothy!
Best to you on your surgery and recovery. You are in great hands. My sternotomy has given me no issues and I am very active, ...Read more
Hello Timothy,
Best to you on your surgery and recovery. You are in great hands. My sternotomy has given me no issues and I am very active, swimming, skiing, hiking, etc. The scar is minimal as well. You’ll recover great at your age!
I expect you will do fine. If you can get a recliner chair to have for a couple weeks post op, it might help you be more comfortable. It helped me a lot. My ...Read more
I expect you will do fine. If you can get a recliner chair to have for a couple weeks post op, it might help you be more comfortable. It helped me a lot. My sternotomy is no problem and the scar is minimally noticeable. I’m 8 months post op. I’ll be looking for you posts. Best.
Timothy Williams I was able to put a recliner in my bedroom. Ready to spend some time there. Your progress is reassu ... Read more
Timothy Williams I was able to put a recliner in my bedroom. Ready to spend some time there. Your progress is reassuring! Thanks for sharing.
Hi Timothy! Seems like our valve issue similar, I have moderate to severe regurgitation and I think both my leaflets are severely prolapsed; also degenerative ...Read more
Hi Timothy! Seems like our valve issue similar, I have moderate to severe regurgitation and I think both my leaflets are severely prolapsed; also degenerative valve disease. And, strangely enough, I was born and raised in Kalamazoo, MI. :)
My understanding is that almost every degenerative mitral valve should be able to be repaired; I think replacement occurs more in severe damage from rheumatic fever or severe calcifications...I'm sure there are exceptions.
I am scheduled to have my surgery in Feb. In my research I learned that when doing a sternotomy, most cardiac surgeons use wire to tie the sternum back together. I found a surgeon who puts plates and screws, and this allows patients to have less restrictions with movement and lifting during the recovery time. Once the sternum heals completely, I do not know what the "strength" of the sternum is in wires vs. plates and screws, but I imagine the plates and screws would keep the sternum pretty solid. So, maybe something to look into if you are worried about longterm capabilities. I don't know know yet whether I will need a sternotomy, the surgeon is hoping to do it minimally invasive, but he wants to see me in person first before he decides (I currently live in FL but will be going to IN for the surgery.
Timothy Williams First, thank you for your comments. I'll look into plates & screws. I retired from Stryker (I worke ... Read more
Timothy Williams First, thank you for your comments. I'll look into plates & screws. I retired from Stryker (I worked in Finance), but gives me a bias for those implants! You say you found a surgeon... is that your surgeon or were you just noting that the option exists?
I've only met with this surgeon at UofMich once. He saw previous TEE, but wants to do his own to further assess. Expect to learn and discuss more then. I just read in his visit notes that he referred to my case as likely "Barlows type". Have you heard that in your case? Not sure if that is name given to all prolapse conditions, whether it is common or specific, but looking into it.
Thanks again and best of luck on your journey as well!
Janelle Hurst Lol, I've had that happen to me too! I think it does give you the option to delete comments if it ev ... Read more
Janelle Hurst Lol, I've had that happen to me too! I think it does give you the option to delete comments if it ever happens again. :)
Yes, I was also told mine was likely Barlow's. The surgeon that I was talking about that does the plates and screws is my chosen surgeon - Dr Marc Gerdisch in Indianapolis. I don't want to say the plates and screws are amazing as I still have yet to have surgery and don't even know if I'll end up with a sternotomy, but I personally did not want a ton of restrictions during recovery. I also work as a nurse and want to be able to go back to work in a reasonable amount of time and be able to handle the workload. He has quite a few videos out there if you're curious, and also has over 100 patient reviews on this site. I was able to get a video consult with him by requesting an appt through this site on his profile.
Susan Lynn I was diagnosed with Barlow's disease and had my mitral valve and chords repaired. I also had a min ... Read more
Susan Lynn I was diagnosed with Barlow's disease and had my mitral valve and chords repaired. I also had a minimally invasive entry. Do your research and choose the surgeon and team that you feel will give you the best outcome. Best of luck to you! ❤
Carol Hughes Anyone taking Metropolo Tarate? I don't know if I spelled it right, but I am sure you will know what ... Read more
Carol Hughes Anyone taking Metropolo Tarate? I don't know if I spelled it right, but I am sure you will know what I am talking about. Had Aorta Valve Surgery 6 years ago.
Thomas Brusstar I had a sternotomy in 2018 at age 54 for my mitral valve repair here at Northwestern in Chicago. My ... Read more
Thomas Brusstar I had a sternotomy in 2018 at age 54 for my mitral valve repair here at Northwestern in Chicago. My surgeon thought the sternotomy had the greater chance of success, including shorter surgical time on pump and flexibility to do what needs to happen once he's in there. U Mich has a great program, under Dr. Bolling. He's one of the mitral valve rock stars in the country. A college classmate had Dr. Bolling do his mitral valve prolapse repair a few years ago (2018), and then Bolling repaired my buddy's dad's MVP a few years after that. My sternum is wired together, no plates. I do like the idea of plates, but I think they are just more complex and surgeons don't like the additional time in surgery unless needed. I suspect they'll say you don't need them because you're young and your sternum will heal fine; but I bet if you really want them any surgeon will install them. (I know Stryker people, and I love their devices also!) There were activity limitations for a while, but I did waterski the following summer (12 months later).
-- Steve
Read more
My advice is find an institution (hospital/surgery center - "top list" on this forum under "heart hospitals") that is high volume and highly regarded. Determine if your insurance includes desired option. Surgeon and their team is really important. You want a team that does this full time. I was fortunate to have Univ of Mich Cardiac Center 1.5 hours away and felt good about first surgeon they paired me with. Refer to CardiacOutcomes_2016.pdf (umich.edu) for reference of scope and scale. Seems to be most recent publication.
As I was told more about my needs, I tried to research related white papers about procedures. Was hit or miss on usefulness. Have to take with grain of salt as context is everything and some material is biased marketing from different surgery centers (these procedures are big money makers for hospitals and there are many surgeon's trying to be "Dr. Famous" touting their innovative solutions). I eventually decided to trust my surgeon and focus on diet, rest, exercise leading up to procedure.
If you have any further questions I might be able to help with, please let me know.