Phyllis Petersen  I had started writing up my experience before I forgot, but then slacked off. Memory is fading quickly, although bits and pieces surface from time to time. Once I knew surgery was ahead, I just wanted it done and over with so I could get on with life.

Darlene Smith  The test is very quick, just a few minutes. The machine will give you directions on when to hold your breath, etc. The contrast will make you feel flushed all over, and some people say is feels like they went to the bathroom, but its just because the flushed feeling reaches everywhere. So don't be concerned. You will be fine. :-)

Bob Brehm  Keep your legs and toes warm as that was the worst part for me - you know popsicle toes!. The test was a cinch.

Terry Shermeister   It's a piece of cake!! Your surgeon will make you feel confident and you are having your procedure at an outstanding hospital. I had a normal angiogram and that's more involved.

Phyllis Petersen  Good description Darlene! I had contrast with CT and MRI at home and a more extensive CTA at Cleveland Clinic. They were all slightly different, but generally warm, tingly and on the last one I did feel like I wet myself even though I hadn't. The dye is out of your system pretty quickly.

Cathleen Weed  The tech talks to you via a speaker during the scan and will let you know when they are pushing the contrast (which is delivered through a previously placed IV in your arm). You will feel a hot flash from head to toe. Drink lots of water after the test to flush your system of the dye. 🌟

Ben Hyman  You were all right on with your descriptions. The test was a "piece of cake". The worst part was waiting for the scanner to become available while sitting in the waiting area with a catheter sticking out of my arm. The flush from the dye lasted about a minute and I didn't get any metallic taste in my mouth

Phyllis Petersen  It was one long rollercoaster ride. I did guided imagery, had a couple of massages, went out and enjoyed some of my favorite activities and people, and treated myself to a couple of very nice dinners. Find ways to be nice to yourself and yet take your focus off your upcoming surgery. Good luck!

Darlene Smith  Ben, I was pretty centered and relaxed leading up to surgery, but the day before, I had about an hour of "meltdown mode". I just cried and got it out of my system, and then I went to a concert at a major NFL football stadium with 60,000 other people, and had an awesome time! Then I took a train the next morning into the city. I was able to sleep leading up to the surgery as well, so not a lot of emotion except for that 1 hour of crazy emotions, and then I was done.

Terry Shermeister   Hi Ben: Everyone deals with this in their own manner. There are different points. When I was first told about it I was very anxious, after I met my surgeon it helped and I felt relief, the when the surgery was scheduled, I felt as if things were moving along and I felt better. The day before was "lets get this over with", then getting up at 4 am, arriving at the hospital at 5 am, prep., being put out, waking up, so many types of emotions when I think back.

You are like me, I wanted to know everything about the procedure. That is good and bad. I'm one that talked about it to my friends and received support.

Take care, and do what you need to do.

Robert D'Aurora  Through out the the process, I was scared and anxious. My cardiologist recommended Dr Gillinov,I researched the procedure and the doctor, I felt confident with the Dr, exercised as much as I could, tried to keep busy with work and other things,good luck to you!

Rita Savelis  Whatever you are feeling is normal, faced with this experience.
Most go through a range of emotions.
Some take meds for anxiety. Others try to keep occupied by being incredibly organised and planning for everything.
Others stare off into space and don't really believe it's happening (me)...
Be good to yourself. Allow yourself to talk, to write, to express what you are feeling.
Take care.

Anna Jones  I'm not at that point yet, but it is understandable to be feeling anxious and unfocused. Wishing you an easy surgery and recovery.

Phyllis Petersen  Do you have calcification of the valve? I had a floppy posterior leaflet (annuloplasty ring) with some torn and elongated chordae (which they repaired with gortex). From what I've read, valve surgeons are generally experienced with a variety of techniques, since there is such variety in prolapse. I was fortunate to not have calcification, just thickening and the prolapse and chordae issues. Mine is degenerative and was progressing for many years. You're having your surgery at a great hospital, so they will prepared for whatever they encounter when they go in. Good luck on it being repairable and having an easy recovery.

Rita Savelis  There is no problem at all, Ben, with venting or "whining". It isn't whining, it is expressing what you are going through. Even those who go through OHS "successfully" vent and whine throughout pre-op anxiety and the, often long, process of recovery from surgery.
Keep writing - it is one very positive helpful way of getting through.
Take care.

jerry grimes  Welcome to the site, Ben. Had to chuckle at the "torrential" level of regurg diagnosis. Makes you want to slap your chest and say "stop it now". We all know how you feel and emphasize with your anxieties. Don't worry about blogging too much. We all are interested in "you" and your fears. If not, we just won't read it. Good luck. Keep it coming.

Terry Shermeister   Hi Ben I hope you are well. I remember when we first began to converse nearly 2 years ago. I had no symptoms when I had my MVR. The day before I went on a bike ride of 15 miles, and swam one half mile. Reported to the hospital at 5 AM, OHS at 7 AM. I had significant regurge as well. From the first determination of my need for surgery to the time I had it, it was 6 weeks. My surgeon did not want me to develop symptoms, nor did I want them. You have done your prep and are well informed. You are right that Mayo is a great place. Put your self first, follow your surgeons instructions and you will be fine. I cannot tell you how good it feels to have this in the rear view mirror!

Best, Terry

Ben Hyman  Thanks Terry. Your words are very encouraging. I just hope I didn't wait too long. They saw Ventricular enlargement in my latest echo. I hope all goes back to normal after this is all over

Nancy Lewis  It is suppose to go back to normal fairly quickly with rest, and exercise and meds. I'm on the other side for 6 weeks and they say the ventricle should return to the correct size in another 3 weeks for me.
It is ok to vent and whine, but the best thing about this blog is you can get answers here, to any question. I was curious if I would have time to read in the hospital. Don't bother with a book. You will be so busy sleeping, answering nurse's questions, chatting with the doctor or your loved ones and sleeping. Any questions even if they feel silly.
I wouldn't wait until February if you have the choice. If you can get your family and work and your life in order, I would go as soon as they could take me. The waiting is the worst part. Make sure you understand what your doctor and medical team have in store for you, read Adam's book and get it done. Your condition is not going to get better (at least probably) It may worsen the longer you wait.
I'm pulling for you. Any time you have questions, feel free.

Ben Hyman  Thanks Nancy,

The docs at Mayo said as long as I get it done within 6 months or less, I should be fine, I'm going through a major home remodel so waiting until after the holidays would be better for me and my significant other

Phyllis Petersen  Good luck getting on with this! If you already have enlargement and some calcium build-up, you do not want to wait too long. It sounds like you have people who you trust advising you. That's half the battle.

Phyllis Petersen  I've only tried it once a few years ago. I'd love to hear too if anyone has experience with it in recovery.

Ellen Leng  Tai Chi is great, but depending on your surgery (whether you have a sternal incision or not), you may not be able to participate for 6-8 weeks after your surgery. As I'm at 3 weeks, I'll look into Tai Chi for later :) thanks for the tip!

Terry Gillen  I am 3 months post op and my chest area along with my groin area is still very sore. All the numbness is slowly going away, I have done yoga and Pilates before but never Tai Chi I am sure it would be good for you, but that depends on where you are at in your recovery I would think. I go to Cardiac rehab and have been for at least 2 months and am just now using my arms. Everyone's recovery is different your Doctor would know if you were ready. God bless you!

Terry Shermeister   Hi Ben: Follow the Docs and nurses advice. Tai Chi is a very slow and gentle way. I've done it but not after the surgery. I had a full OHS. I took it easy for the first week, kept ahead of the pain with the meds, started to do walking after two weeks, began rehab on the stationary bike after 4 weeks, began to swim after about 12 weeks. There was little pain. I was gentle with myself. You can check my journal as it's more detailed. Even with a robotic minimal entry this is a major surgery. One thing that I've found is that there are psychological effects, at least for me. You are in good shape, younger and have a good attitude. This is a team approach, and you are partners with your support network, your Doc/nurses, and PT staff. I'm glad that I had mine performed before I had any symptoms or changes to my heart. I know that it's a handful before hand, the constant thinking of what will come next. Take care Terry

Ben Hyman  Thanks Terry. I have my consult at Mayo in a few weeks. I'll report on the outcome and next steps right afterwards


Ben

Corey Sines  Looks like you are in good shape and look younger than your age! I have done alot of weight training and cardo in my days. But I am not familiar with Kettleball work outs, I will have to google it, looks interesting..

Ellen Leng  Ya look good! I looked at your journal. I'm 53, in good health, also with MVP that I was told was benign. My mod-severe MR was caught with luck. I elected to have my surgery earlier than my Cardiologist would have liked as my atrium is enlarged and I want to decrease my long term afib risk. I found a recent paper that uses ERO (effective regurgitation orifice) to determine how people did after mitral valve surgery. Basically, if you were in the moderate plus ERO category (ERO 20-39) your life expectancy returns to normal after surgery, where if you wait to ERO 40+, your life expectancy drops, even with successful surgery. Had my repair do be at local valve center (kudos to Sequoia hospital and Dr. Luis Castro) 2 weeks ago and more dealing with post op afib, but am generally doing well.
I recome down asking your Cardiologist about ERO and talking about risk v benefit with your valve numbers when you are seen at Mayor.
I was told to maintain my workout schedule pre-op which it sounds like you are doing.
Best!

Ben Hyman  Thank you Ellen. I'll ask what my ERO is during my consult. Hopefully it's not progressed where my life expectacy is affected after surgery

Phyllis Petersen  I love kettlebells! I can't wait to be able to do them again, but I know there's a lot of healing post-op. Keep up the great work so you're ready when surgery time comes.

Civita Fahey  I used to do a lot of kettlebells.. they were great.. , but they told me not to due to the bicuspid vavle and moderate/severe stenosis..hoping that once I eventually get surgery, I can go back..

Ben Hyman  I believe that doing Kettlbell for the last 7 years have kept me out if the OR until now. I still have no symptoms but echos don't lie. Will probably have to get the valve repaired by early 2017. Hopefully my conditioning will contribute to a speedy recovery

Civita Fahey  That's probably true Ben.. I've tried keeping conditioned by doing a boxing workout which I can still get through.. they just told me since having a bicuspid valve may cause aortic aneurysm lifting heavier weights, or kettlebells could cause problems with dissection so, I just stopped for now.. if it works for you and its ok, then I say go for it. the better shape we are in, hopefully our recovery will be easier..

Phyllis Petersen  Unfortunately, it may be your valve. I always had low blood pressure until this last year. The diastolic is still usually okay, although higher than my usual, but the systolic doesn't go below 132 and is usually quite a bit higher now. Time to get it repaired!

Ted Miko  Do not trust band ! Many appazon phone that work better that's comparing app to excersie machine or blood pressure tester at drugstore.

Terry Shermeister   Hi Ben we have exchanged information during 2015. I've been following your posts and the responses from other HV patients. My suggestion: Choose a surgeon/clinic that you trust and be done with it. It's a stressful time. You can over think and get too much information. I had my surgery in May of 2015 at UW Clinics and Hospitals in Madison. The surgeon was the best and my surgery was successful. No robot, just top notch professionals, nurses, PT, and follow up. I swim a mile a day, faster than before the surgery. My mitral valve was repaired: Edwards Ring, triangular section of the posterior leaflet, and chordae replaced. Best of luck!

Ben Hyman  Terry

Great hearing from you. I appreciate your encouragement. I did choose a provider but now they are having a nurses strike. Given the seriousness of OHS, I'm looking at all of my options. Mayo has a higher rating than Abbott and if they can do it robotically with less stress to my body, I owe it to myself to investigate it further. We have a lot going on at home that would make doing the surgery now highly inconvenient. If I can hold off until next year, that's what I'll do. If these tests at Mayo indicate otherwise, I'll do what's necessary to preserve my health. If they say it needs to be done sooner than later, I'll take that step. We're all unique and have to do what's best for our health and situation

Roseline Rosario  I would call the center itself and ask to speak to the imaging dept to ask them the reason. Never heard of echo with contrast. Good luck friend and welcome!

Corey Sines  I had a lot of echo's (TTE and TEE), none have used contrast dye. Not even sure how an Echo would pick it up. Contrast dye is common for CT's and Cardiac Cath's however, and are usually part of the standard set of tests before heart surgery.

Phyllis Petersen  Not for an echo, but I had a CT and MRI back-to-back with 2 different contrasts. That took quite awhile.

Ben Hyman  Thank you...that's what I thought as well. I don't know why a standard echo would take over 2 hours and I'll tell them "no thanks" if they try to use a contrast during the test. Even with a prestigious center like Mayo, I'm not going to allow un-necessary procedures

Phyllis Petersen  Contrast is often required to get the detail of blood vessels, but you should ask why a test is being done and if it's necessary. My cardiologist was very good at explaining why he needed the tests, as was Cleveland Clinic in explaining the pre-surgical testing they do. I was able to avoid catheterization, which I'm very thankful for.

Lynn Johnston  I had minimally invasive robotic mitral valve repair at Mayo Clinic in Rochester, MN in June 2013. I have had a number of echos done there. Never with contrast dye, but they are the most thorough echos you've ever had and they can last a couple of hours!

Barbara Laurie  It's very standardized paperwork you are given and it may not mean you. I doubt it will. BUT a very inclusive echo may take an hour. And it may take awhile to do all the things they require, like paperwork! I went to UCSF with all I needed in hand for an echo and a consult. Seven hours later we left, exhausted! Hang in there, to be sure, if it helps, call your cardiologist, but I'm pretty sure it's the same type of paperwork we all run into on this journey.
Best Regards <3

Ben Hyman  Lynn, who was your surgeon at Mayo? Which valve was repaired? How are you doing since your procedure?, what was it like at Mayo?

Lynn Johnston  Ben, Dr. Burkhart was my surgeon. He and Dr. Suri operated as a team for the robotic surgeries so they were both there during surgery. Unfortunately, both of them have left Mayo. I had my mitral valve repaired. Mayo was great, a wonderful hospital. I still have side effects from the surgery, but feel it was the luck of the draw, nothing to do with the surgeons or surgical technique. I have exercise intolerance that has not improved. I also have vision issues that have improved a lot. Pump head also was an issue (I was 51 at the time of surgery, so it was not age related mental decline). But by about 1 1/2 years out, the pumphead symptoms started to get better. I don't mean to be negative as my heart had started to enlarge, so surgery saved my life or at least lengthened it. Make sure you end up with a surgeon and hospital that have done many of these surgeries, but I'm sure you've gathered that already. Let me know if you have other questions. I felt like I was in excellent hands at Mayo.

Ben Hyman  Lynn,

I had a consult with a surgeon at Abbott in Minneapolis that claims they do 1 surgery per week that are "re-do's" from surgeries done at Mayo. They claim that Suri did most of them. I'm still getting a consult there because they are ranked #2 behind Cleveland Clinic and Abbott is in the middle of a nurses strike. I haven't yet decided where and when I'll have my repair done. I'm gettobg all of my ducks in a row so I'll feel confident in the outcome when the time comes. Hopefully I can put it off for a while longer. It will either be Mayo or Abbott

Ellen Leng  It is really unusual to have a program discuss another program or surgeon in that way. Would raise my eyebrows on both sides.
You definitely want a program/surgeon that does at least 50 of your specific procedure per year and that can give you their numbers. What are the repair/replacement rates, how many times do they replace when they thought they would repair? Who comes back for red's? How long are you on bypass compared with average? Valve specialty programs have these stats and they are important!

Lynn Johnston  Ben, Good luck with your decision. I have nothing but good to say about Mayo and would definitely go back there if I ever need further treatment. They are top-notch and are rated second in the U.S. for good reason. I'm not sure about the surgeon at Abbott and their statistics, although I trust they wouldn't mislead people. I've scoured the Internet for research papers against robotic cardiac procedures and have not found anything negative published when they are done by surgeons with a lot of experience in them. If you aren't happy with what you hear at Mayo, consider getting another opinion, perhaps a surgeon at the U of MN to see if they agree with the Abbott surgeon's findings. My local cardiologist is with the U of MN group and they are good as well. He was the one that recommended Mayo, if I was able to make it work to have surgery away from home. Good luck, in the end you need to go with 1) the experience of the surgeon and hospital (quality of care post-surgery in hospital is also very important) and 2) where you are most comfortable.

Ben Hyman  Thank you Lynn.

I'll be asking lots of questions during my visit. Fortunately I'm stillbin the drivers seat as I have no symptoms and hopefully a year or 2 out from needing surgery. More to come after November 2nd

Phyllis Petersen  It doesn't seem like too long a distance if you can have robotic repair. The hospital stay and recovery is usually much shorter. I'm hoping to have the robotic repair at Cleveland Clinic (scheduled for Oct. 13) and I live in Tucson, AZ. My cardiologist has been great with handling my tests here and keeping in touch with my surgeon. As for repairs not lasting, from what I've read on this site it occasionally happens. You can ask them what the success rate is, so you'll hopefully feel more confident. Good luck!

Catie B  Ben, I haven't been to Mayo, but a couple of HVS members had surgery there this summer, one shortly after the other. They gave excellent reports of their experiences. I wish I could remember which surgeries they had. Also wish the search function here was more refined. I've tried a couple queries and can't find them. They sounded very pleased with the care they received.

Steven Dean  I think the two that had surgery at Mayo this summer were at Mayo AZ not Rochester. I am an AVR guy myself but I suggest doing some research online about the pros and cons of robotic. A couple people on here have had robotic recently and it seems that overall the recovery is not necessarily easier. But more important than the recovery time is which one is going to give your valve the best result.

David C  It's my understanding that Mayo is right up there with Cleveland. If you are riding in a car, 90miles/90 minutes sounds a little rough to me right after surgery. That being said, I flew almost across the country 9 days after OHS. The plane was fine. Oxy will likely be your friend for a few weeks after surgery.

I would just ask them straight up about how many of this specific procedure they do. I went to CC when I found out just how few of these aortic surgeries are performed here in PDX. I'm a believer in specialist-experts. Go where you will feel the most confident in your treatment. I think the good experience/confidence I had going into it has helped me in recovery. I am 10 weeks out of surgery and two weeks back to work and feeling better all the time.

Steven Dean  We drove 6+ hours home from Cleveland to DC 7 days after surgery (1 day after I got out of the hospital) and it was fine. We were thinking about stopping half way a few days before the drive but by the time the drive came around it was no big deal. We stopped every hour or so for me to walk and stretch a little.

Kevin Shackelford  I just had AVR at Mayo in Phoenix. Amazing surgeons and organization! Best of luck to you in journey.

Ben Hyman  My consult went great. I have no symptoms and the MR is not yet serious enough for surgery. He said "see you in 6 months". When I mentioned the Robotics program at Mayo, he laughed and gave me some "insider" info. He said that there's only 3-4 sites that have had long term success with Robotic MR repair. For every success, there are 5 or more that need a re-operation within 5 years. He said he does at least 1 a week, mostly from Mayo. The main guy there that was doing them is now in Abu Dabi with Cleveland Clinic. I'm not sure what to believe at this point. I trust this surgeon so I may just stay the course

Terry Shermeister   Hi Ben, hope all is well. Sounds like you are doing everything right. A little more than one year after my mitral repair and all is great with my heart. Zero leakage, 119/83, cholesterol of 157, swimming a mile a day. Good wishes to you.

Ben Hyman  Thanks Terry. My surgeon said that the backflow jet in my valve is going towards the side of the valve rather than directly through. That and my fitness level is probably why I have no symptoms. There's no SOB, no AFIB and my heart is still pumping normally. He's inclined to wait which is fine by me. When I asked him about Robotics at Mayo, he warned me not to be seduced by the success story posted on their website. For every success there are usually 5 that need "re-do's" and he does nany of them from Mayo, usually about 1 per week. Not sure if I'm going to get a second opinion or not. Lots to think about before my next echo in 6 months.

Ben

Glen Miller  Hi Ben. Glad your surgery and recovery have gone well. I have been reading your journal after having similar questions about Mayo not being showcased on the sight. Adam did a great job of answering the question later in your blog. I am being referred to Mayo Rochester for MVR and wondered if you're willing to answer a couple of questions. 1. It seems like the process for you at Mayo was a couple of months for consult appointments and tests and then 3 months wait for surgery. Did you or Mayo drive that schedule? I am hoping to get things going in a matter of weeks rather than months or I lose my support team. 2. How did you overcome the skepticism you received about their robotics program and gain confidence that it was the right procedure for you? My local cardiologist is telling me I will need open heart due to the specific issue but I'm optimistic there may be other options. Thanks in advance for any insight you can provide

Amy Dorsey  I just had robotic MV repair at Cleveland Clinic 2 weeks ago. I watched every video I could of every type of heart surgery possible. It helped me face it. In the end I thought it was really neat.

Ben Hyman  Thank you Amy. I read your journal on what your post op was like and it sounds harrowing and very unplesant. Not what I would have expected with robotic. Hope all is going well

Ben Hyman

Tracy Simmons  Hi Ben. I had my mitral valve repaired at Mayo Rochester location in March 2016. I opted for the minimally invasive procedure, but it wasn't through the robotic machine. My cardiologist recommended I get my mitral valve repaired within 2 months and the robot wasn't available during that time. I was and continue to be impressed with the facility, nurses, admin staff, surgeons, and town of Rochester. I cannot say enough great things about the Mayo and my experience there. My local doctor, cardiologist and other physicians I've seen since my surgery have been impressed with my progress and no evidence of leaking (thank you God). I wish you the very best in your health care and choosing the facility for your needs.

Tracy Simmons  Hi Ben. I had my mitral valve repaired at Mayo Rochester location in March 2016. I opted for the minimally invasive procedure, but it wasn't through the robotic machine. My cardiologist recommended I get my mitral valve repaired within 2 months and the robot wasn't available during that time. I was and continue to be impressed with the facility, nurses, admin staff, surgeons, and town of Rochester. I cannot say enough great things about the Mayo and my experience there. My local doctor, cardiologist and other physicians I've seen since my surgery have been impressed with my progress and no evidence of leaking (thank you God). I wish you the very best in your health care and choosing the facility for your needs.

Lise Bowles  Ben, I am flying to Cleveland from Florida for my surgery. There they have the option of robotic, minimally invasive and full. I feel that the doc has so much experience in his field, he will choose which is best for me. I have done reading and research on the robotic and it certainly sounds more appealing as far as recovery goes. I may not be a candidate though because 12 years ago when I had breast cancer they gave me radiation to my left breast, and that can cause complications. We shall see, best of luck making your decision. When I first found out about my MVR I really didn't want to go so far away. I think I was in shock, but gradually, as I came out of my fog, I realized, for Gods sake, this is my heart!!! Traveling is a small price to pay for excellent care and experience!
My decision was made!
Lise

Amy Dorsey  Hi Ben. I just read your story and it's very similar to mine. I am one week post op from robotic mitral valve surgery at the Cleveland clinic. I had seen a few different cardiologists over the past three years and got conflicting information from every one until my most recent Cardiologist told me I needed to get this done this year. When I made the decision to go to Cleveland Clinic, they set me up with a cardiologist there pre-surgery to go over things with me, and he was livid that none of the other Cardiologists had shown me how bad things were. He said I should have gotten the surgery when they first saw the enlargement of my atrium and the severity of the regurgitation three years ago. He kept going on and on during our whole consultation about that and how upset he was because he said at that point before my atrium was enlarged, I would've had a 100% success rate of never having any issues for the rest of my life, but now I might have issues down the line because of the atrium enlargement even after surgery and my shortness of breath may not stop completely. I chose the best surgeon with the most experience at these types of repairs in the world. Dr. Gillinov recommended the robotic said I was a great candidate for it and it would be a better surgery for me. I trust him because he does more of these surgeries than anyone in the world and a ton of experience with this type of surgery. It's still quite painful, and everyone told me it would be easier for me because I am fit and young. LOL… I don't think almost 40 is that young actually, but that's what everyone says when they see me and talk to me about this! Anyway, I can't give any advice on the different types since I had the robotic. I can tell you that there still a lot of pain involved and the body still goes through the same stress other than the split sternum. I was only expected to be in the hospital 3 to 4 days and ended up being there 7 due to some complications from the stress of the surgery on my body. This was my first surgery ever!!! I'll be interested in and following your journey! Best wishes!

Ben Hyman  Great news today! My surgeon said ni changes since the last echo. Because of my heart conditioning from Kettlebell, he said I'm probably a year or two out from needing surgery. He said " see you in 6 months"...woohoo

Terry Shermeister   Hi Ben: It's interesting to read your journal. It's my understanding that you do not want symptoms because if you do, the outcomes are not as promising. I had non when I went in for my surgery and my heart function was 70%. I went on a bike ride of 15 miles the day before my surgery. It's great that you are good shape. I had no calcium buildup and by all means get the repair!!!! Out come and quality of life is better. I just swam another mile and did running in the pool for another ten minutes. Keep up the good work and attitude.

Ben Hyman  Thanks Terry...my doc said it's safe to wait and I trust his judgement. I'll "giterdone" when the timing is right for my situation.

Ben

Autumn Griffin  I am glad you aren't having symptoms. It is good that you don't need surgery yet. Thank God everything is working well right now.

Jean Raber  Ben, I'm sure your exercise and Terry's put you in the best possible place for recovery. I've been using these months to s-l-o-w-l-y take off some weight. Between that and the yoga, I am much more limber, fewer back aches. Putting effort into improving what you can before surgery is a positive and healthy step.

Ben Hyman  Yep...that's the plan. I'll be working out as if I'm planning to run a marathon. I'm thinking that I'll have it done some time next year. I'm being watched closely by my care team. The moment I have any symptoms or the tests indicate that it's time to get it done, I'll jump on it. All of the pre-testing will be done in the next few months. I have the luxery of doing it on my timetable. No one can make this decision but me and I'll know when it's time

John Lyons  I went down similar path to you withe the 'marathon' taking place about 4 weeks back. We did pretty well waiting for the symptoms to show up and for the echo to indicate its time. You have to do it on your terms.

Tammy Pilcher  Ben, it sounds like you've got what you'll need for your meeting today. You'll probably feel alot more at peace after you talk with your surgeon. I know I did! Mine was very confident and reassuring. He made me feel like everything was going to be fine and it was! Prayers and best wishes for you!

Wiliam Height  Any good surgeon will not let you push this out more than 3 months if your MVR is indeed severe. Tai Chi would be an excellent recovery method 6-8 weeks after. I can't comment on the chair idea, other I don't think it's necessary--save and spend the money on the caregivers that will be most important to you in your immediate recovery.

Ben Hyman  Thx William, both my Cardiologist and a very prominent doctor at Abbott thought that because my ventricle is normal and there's no AFIB, I have time to do my due diligence before I have to have surgery. I'll know more in a few weeks

Terry Shermeister   Hi Ben: At my pre op this last Tuesday all of my results were reviewed with me. My heart function, TEE, Heart Cath., etc., view of the 3D mitral valve (from the TEE). I have zero symptoms. My Cardiac Nurse Practitioner believes that even though my heart function is within accepted specs that I may indeed have symptoms even though minor. She feels that because I'm having the procedure without symptoms I will feel even better once I'm recovered and there is not deteriorated indications of my heart. This supports all the research that I've done on my own. My surgery is set for next Thursday. There are many ways to deal with rehab after the surgery that are excellent. Yoga, Tai Chi, systematic cardiac rehab, etc. My advice is along the lines of William's. Be careful not to delay too long. The TEE is an excellent tool that basically was a determining factor that helped my cardiologist, surgeon, PCP, and myself to proceed.

Tim Goff  Ben, though I had a symptomatic event in the late fall, prior to that I was pretty much asymptomatic. A leaky valve can lead to other problems which it did in my case. Once I was stable the dr said I didn't have to have the surgery inside of 3 months, but outside of that increased risk factors. If it needs to be fixed then waiting wont' help or correct the situation. Wish you the best with your decision.

Dave Van Buren (DVB)  Hi Ben. Once diagnosed with severe MV regurgitation the clock starts ticking, with a give or take 10% loss rate per year. When faced with same situation I opted for soonest possible surgery to keep my accumulated risk low. You can read a lot more about handling the medical risks in my journal (and lots of data too). The key task of an MV patient is to find the lowest risk path to recovery & beyond, not the most convenient one. Best time for this surgery is before symptoms appear when you are healthy and in good shape. In short, I vote with William even though I know it is hard to bite the bullet. Best to you, sir!

Terry Shermeister   Hey Ben, the most difficult part of the procedure for me was waiting a few days before I could get active. They wanted me to lay low for one week. I went for a three mile walk the next day. I did feel tired, my wrist was kind of sore and then I had a little swelling at the entry point of the incision. I put an Ice Pack on it for 20 minutes and that helped. I rested third day, then went on a six mile walk the 4th day. I took the bandages off each and every day and used the antibacterial ointment each day. My wrist began to feel good and went on a bike ride down State Street and the Memorial Union day 5. Being in Madison, you can imagine what a beautiful site it was down there. Also, the Farmer's Market at the Square was in full swing.

Tim Goff  I couldn't get those stats either and went with trusting what my surgeon told me. Because I had a MAZE and a mitral repair the success rate was better with the sternotomy vs minimally invasive. To be honest I've had less pain with this than I did with rotator cuff surgery. 3 weeks out and feel pretty damn good.

Wiliam Height  I would loved to had a minimally invasive procedure, but my surgeon's repair success rate of 99+% is performed through median incision, that is 10cm. Also my repair was a complex Barlow diseased valve that most likely would not be repaired robotically successfully.

Ben Hyman  I still need tests to determine if my valve can be repaired with a smaller incision. I'll know more in a few weeks

Barry Van Gemert  Ben, At your age you probably have Barlow disease which makes the repair a bit of a challenge except for the most experienced surgeons. (William Height had Barlows) If you consider Ohio mid west (which most people do, more of these surgeries are performed at Cleveland Clinic than any other place regionally and worldwide. So maybe this surgeon has his statistics off a bit,

Ben Hyman  I agree with you. There's a surgeon at Abbott that is their go to guy for minimally invasive repairs that came here from IA Hospitals that has been doing them this way for years. This Dr Liao has only done them at the U of M. Other docs have moved from other areas and bring their experiences with them. This surgeon's statement that he does the most left me feeling strangely Ill at ease. I'm going to contact the coordinator at Abbott to have a consult with their main guy. From there I'll follow my gut and make a decision

John Fichera  Hey Ben,
I just had my mitral valve repaired robotically on February 23rd. I was home on the 25th and working in 2 1/2 weeks. I just came back from Florida where I started running again. I feel better than I have in years. I have pretty much healed. I have four small incisions on my right side but that's it. My cardiologist recommended Dr. Suri for the procedure. I opted for Dr. Balkhy at the University of Chicago. From what I understand, Dr Suri make one long incision on your right side. Dr Balkhy make four 1/2" incisions. This whole experience has been much easier than I thought it would be.

Ben Hyman  I'm 10 years older than you are. Are these results still possible in your late 50's and still otherwise healthy?

John Fichera  I really don't know but I have to believe the recovery would be faster than going through a sternotomy regardless of the age. I would make a call. I definitely would recommend Dr. Balkhy. His reputation is impeccable. Maybe you could set up a phone interview to begin.

Ben Hyman  Thanks John,

Unfortunately University of Chicago is out of my network and out of reach. Mayo in Rochester does them robotically if you fit the profile so that's the direction I'm headed. I think the U of M does them as well

John Fichera  I understand. I'm sure you will find a great surgeon. don't let the operation get all into your head. You're a healthy guy except for your MV. It will be over before you know it and you'll be enjoying your summer in beautiful Minnesota.

Terry Shermeister   How are you doing Ben. I'm just following your posts. I am still stressed about this situation. My son told be to relax, I'm healthy, fit, and will be better once it's done. He's only 18 and he handles all this so well. I meet my surgeon tomorrow and will ask information relative to the robot as well.

Ben Hyman  Hey Terry...hanging in there. Hoping to choose my surgeon soon. I'll pull the trigger to schedule it soon afterwards. Hope to have this all behind me by summer's end

Barry Van Gemert  Ben, you need to read "2014 AHA/ACC Guideline for the Management of Patients With Valvular Heart Disease". Or maybe your doctor does. I can email you a copy.

Terry Shermeister   Hi Ben, thanks for the update. I just looked at the video that Barry referred to which was interesting. I meet with my surgeon this Wednesday and will discuss some of the things relative to what you brought up, what I've researched, and get his take as to what I should do. I've been monitoring my BP and heart rate and it's consistently in the 122/76 w HR of 56. There is so much to take in and process for the layman.
I did read yesterday about being more aggressive in the treatment of MVR and treatment by repair when that is indicated. I'm anxious and stressed about this, but that is normal as well. Going out for a bike ride now, and have a great Easter, Terry

Ben Hyman  Hey Barry,

Thanks for the recommendation ... I just found the paper on line and read the portion that relates specifically to MR. It confirms exactly what Dr Pedersen said during my consult, almost verbatim. It convinced me that I've chosen the right center of excellence when the time comes. I still don't have all the results in yet. I'll know more in a few weeks.

Ben from Minneapolis

Barry Van Gemert  Ben, Pg 2459 Table 13 if you are asymptomatic with severe MR and LVEF <60 and LVESD > 40 you are stage C2 and surgery to repair is recommended. You don't need all that other heart dysfunction going on. If the valve is repairable it is to your advantage to have it fixed before you cause other damage to the heart which in all likelihood will be permanent.

Wiliam Height  I'm not a doctor and you have to trust yours. If your MVR is indeed severe it is stressing your LV, which is the main pumping chamber to body. Make sure your surgeon is aware of your lifestyle/excersize regime. Strong resistance exercise such as lifting heavy weights dramatically increases the pressures on the left ventricle (and on the mitral valve) during the maneuvers. I'm a competitive cyclist and once my regurgitation was serve going max heart rate could have lead to "indications" I didn't want to experience including sudden death. I waited maybe too long or excersized too hard and experienced other damage Barry alludes to which invariably if your MVR is indeed severe, your tricuspid is/will be affected and will be repaired with your mitral valve.

Duane Beeman  All this talk about strenuous exercise has made me tired. I think I'm going to take a nap now. In my case, my bicuspid aortic valve is so cooked there is no need for analysis. I either get it replaced or I go face first into my dinner plate. Makes the decision much easier.

Ben Hyman  Trust me..,I'm not going to screw around with this. Once I'm comfortable with the center and surgeon, I'll pull the trigger. I fortunately have some time to make the right decision

Terry Shermeister   Hi Ben, I'll share with you what my surgeon shares with me on Wednesday, I'll ask him about minimal invasive, robotic, and traditional mitral valve repair. Advantages and drawbacks etc., Today I felt great swam and yesterday biked 15 miles. I know that not all the good Valve Centers are listed on this site. In researching UW Hospitals and Clinics Valve center, they do 90% repair of mitral valves. There is so much information I'm researching that it is overwhelming to say the least. Take care heart buddy.

Nancy D  Prayers coming your way for a great meeting; questions answered and all the way through a picture perfect procedure and an awesome outcome to complete recovery!! Take deep breaths!

Terry Shermeister   Hi Ben. I'm sure all will be good. For me I'm anxious as hell. I meet my surgeon one week from today. I'm reading researching and communicating with friends. I'm not married either, my son lives with me. I'm making arrangements with friends to visit, help with cleaning support in various ways. I'm independent, lucky to have a great health insurance plan, and am financially in good shape. Have you read Adam P.s book, it's a fast read. Have you had your TEE? I'm living my life as usual, no symptoms, just got in from a bike ride. Still I feel this pending surgery and recovery effecting my serenity and mood. I have so much to be thankful for. Keep I'm in the loop, you have my good thoughts and support.

Ben Hyman  Thanks Terry!

I have a TEE scheduled for 4/21 at noon. I had to schedule it on a day my SO can take a day off to be with me. It's being done by my new Cardiologist at United Hospital in St Paul. Are you having surgery at Abbott?

Terry Shermeister   Nope remember I'm the Madison guy😊. My best friends lived up in the cities until the traffic got to them and they opened a B&B not far from Lake City. Take care talk soon.

Terry Shermeister   Hi again Ben. Have you read Adam's book? There is a chapter that addresses the questions one should ask the surgeon. For me, I asked my Primary Doc and he immediately knew him. Also, my best friend's husband has experience with him as well.

It seems as if there are many more hospitals and surgeons that are not listed on website. Hope you are well, Terry

Ben Hyman  Thanks Terry, yes, I've read Adam's book but was also looking for additional insights from the community on this site.

Ben

Tammy Pilcher  Ben, I used the surgeon finder part of this site to find my surgeon. I'm in Florida and used Dr. Accola. He does over 300 per year and has done over 9000. I don't know anything about MN, but you could check the list here if you haven't yet. Best wishes!

Ben Hyman  Thanks Tammy , I did use the surgeon Finder and it didn't give me a lot of feedback. Only one surgeon in MN had more than one entry, yet the surgeons at Mayo had far more experience and better reputation yet only had 1 comment. In other words, the feedback does not accurately reflect either their reputation, skill or number of successful outcomes . I'm wondering if there is a more objective resource available?

Tammy Pilcher  Oh, I'm sorry there wasn't more feedback than that for MN. There are so many people on here, hopefully someone familiar with your area will respond. I'll be keeping you in my prayers to find the right one.

Tammy VanBuskirk  Hi Ben, I haven't found a surgeon yet either. However I have went through three cardiologist. The first I seen was suppose to be the best in his field. But he had a horrible bedside manner and when I went in to have a totally different surgery I found he didn't even run the right test on my heart. The next two have been great and explain things. Most importantly I feel I can trust them. I say not to get stuck on the numbers and go with your gut!! You know when you feel comfortable. Trust your judgement!!

Ben Hyman  Thanks Tammy..I totally agree. My gut told me that first surgeon I met was not the right fit, despite my internist's recommendation (he said this guy can do them in his sleep) he only does about 25 valve surgeries per year. He also repaired the mitral valve of a friend of mine about 7 years ago, and it's already leaking. He may be due for another OHS in another 7-10 years. That to me is not a good outcome. Unfortunately you can think about the right questions all day long. When you're in the doc's office contemplating surgery, your emotions and nerves kick in and then you start forgetting your own name😝. I'm going on these appointments alone which makes it harder. This on line community is a godsend.

Ben from MPLS

Tim Goff  Ben I can check my old emails as my surgeon here in boston provided options at other centers including Surgeons in MN. There are no repair guarantees, but those surgeons with a solid history of repair over replacement should, after testing, be able to give you their best estimate based on imaging info etc.

Tammy VanBuskirk  Hi Ben, sorry to hear you have to go through so much alone. I do like to keep my questions in my notepad on my phone. it helps me in the doctors office. It also helps when I have a pop up question that flies through my head at random. lol. Sounds like you need a doctor you can really just talk to. I am sorry to hear about your friend. That has to be hard on you just thinking of his outcome. I took care of my dad after having a quadruple by-pass and his leg burst open with it. It had to heal from the inside out. I often picture that when I think about having my surgery. I try to remember that isn't me and my health is a lot different. But you still have it on your mind. Everything will work out!

Tim Goff  Hi Ben, I checked my notes and Dr Rakesh Suri at Mayo was recommended by my surgeon as an excellent choice if I was looking for a second opinion. Results orientated information is very helpful, ie repair over replacement rate, need for pacemakers, long term viability of repair etc. If I lived in MN I would be at MAYO, here NE it was either MGH or B&W. I very much liked my surgeon at the outset and received some very reassuring info from Dr's in the area about his talent. So far so good! Don't get tangled up too much with the info!

Ben Hyman  I've heard of Dr Suri at Mayo. He's one of the top guys in the nation for Mitral Valve repair. There are surgeons at Abbott in Minneapolis that are supposed to be just as good. I have a consult next week at Abbott and should have a better idea of what I'm doing in the next few weeks.

Ben

Ben Hyman  Thanks Terry...SFSG...I still don't have any real symptoms...No SOB...no unusual tiredness...still doing Kettlebell 3 times per week (and feel great afterwards) so I'm having a hard time grasping that I need OHS. I know that the Echo doesn't lie so I'm proceeding slowly and deliberately. I'll know more on Thursday after my "meet & Greet" at Abbott on Thursday and my TEE later this month. That's another procedure that makes me nervouse as well.

Ben from Minneapolis

Terry Shermeister   Hi Ben: The TEE freaked me out as well, but actually going in, meeting the people and having them explain the procedure helped. It was nothing. I even woke up about 2/3 through it and it didn't bother me. I told the nurse that I was anxious about it, she understood, and made it easy. Hope that helps.

Ben Hyman  Thanks Terry

It does help. My younger brother has a similar procedure due to Barrett's Esophogus and he said it's not a big deal

Ben

Nancy D  If I had a good relationship with him, I would ask him now to refer me to a cardiologist. They can't keep up with everything, and I would tell him I don't feel comfortable not looking further at this point. You are your best advocate, and if your gut says to move on this, I would. If I liked my internist, and he didn't get ruffled at referring you I would be tempted to stay with him, with a referral to cardiologist as the primary heart guy. Good PCP/internists can be hard to find.

Barry Van Gemert  The ball has been dropped here for sure. When you had the ECHO in 2008 didn't you meet with a cardiologist? You should have, and he would have told you the results from your test. Some of these guys treat this condition very conservatively (watch and wait) but a simple internet search would have told you how these can be repaired and at what point to go for surgery. Ultimately we are all responsible for our health.

Ben Hyman  That's the lesson here. No matter how good you believe your primary doctor is, you (meaning me) is ultimately responsible for your health. I will always review my own health records to make sure I know where I' m at

LaDonna Mangile  I think he dropped the ball! May be nice but nice isn't what we need we need smart and forward thinking. I had a similar situation!

Tim Goff  One step at a time Ben. Once you have selected a surgeon and facility, then you can move onto care, coverage etc. My employer asked if I would be back in 4-6 weeks to which I replied, first I'd like to wake up then we will see how thongs go. Hang in there Ben

Greg Johnson  I would have been in a world of hurt if my wife had not taken off three weeks to stay home and assist me. I would start by apologizing to everyone who is going to be helping you. You will be short annoying depressed and a pain in the ass at times. And you might as well apologize for it now. Then just be honest, ask for help and then prepare yourself to deal with what comes as it comes. It isn't as bad in hindsight as it appeared to be when looking towards it. Things happen but they are all survivable and like all problems are not as big when taken one at a time as they appear when piled up all at once.

Clare Auten  I agree with Tim. One step at a time. I was out of work 10 weeks but I think the time depends on your job and how you heal. I am married and my husband did a lot. But, we also have 3 kids ages 4, 7 and 13 when I had surgery. My husband went back to work around 10 days post op. I remember getting kids ready for school. Simple house work. take care of the little one. Don't panic yet! Good luck with your choice of surgeons.

Clare Auten  Meals from friends helped a lot. we used paper plates for weeks. Laundry was one chore that took a long time to get back to but laundry for 5 is probably different than laundry for one.

Ben Hyman  Thank you all for your feedback! It really helps. Fortunately my significant other and I plan on living together and steps are underway to make that happen quickly. Hopefully my procedure won't be as extensive as Adam's ( hopefully mitral valve repair vs what he had) but I'm anticipating at least 6-8 weeks. I'm hoping to delay the surgery until fall but I won't know until my TEE later in April.

Terry Shermeister   Hi Ben, I'm kind of in the same place that you are. I do not have a wife or significant other and I'm an only child. My parents are no longer alive. I do have my son, who lives with me, but he has his life to live as well. I have a great support group of friends so I'll have to rely on them a bit. It will be a challenge as I'm a very independent person so we'll have to see how the recovery goes. I see my Dr. on April 8th so I'll find out more. I was anxious about the TEE but that was a piece of cake. I'm glad that one day I was diagnosed, the next was the TEE, and the Dr. appointment was set up within three days. I'm still biking and swimming. One help that I have is that I'm retired as of September so no work issues. My thing is that telling others about my surgery is a challenge cuz I'm so active and healthy. All this is new to me and sometimes I feel good and other times it's very overwhelming. I noticed you wrote at 3 AM, well I was up at that time as well unable to sleep. Hang in there and keep positive and soon this will all be in the rear view mirror.

Terry

Pat Bluemel  Something to ponder. I have a SO and it was just us. I resisted all requests for help or even visiting from family and friends. I essentially isolated myself for 4 weeks as I don't like being infirm. The SO took the week of surgery off and worked from home the week after. Then went back to the office. I was fine by week three doing laundry and caring for myself and the dog during the day. I go back to work on 4/9 about 6.5 weeks post op. Don't worry too much,you'll be fine.

Pat Bluemel  You guys will be fine. I'm on week 5, drove myself to and from cardiac rehab where I did a full hour of cardio. Once you get out of the hospital and past week two it's all easier each day.

Terry Shermeister   Hey Ben how are you doing. I read your post yesterday about the primary not getting the info that you needed. I just visited with mine this morning he said that the cardiologist and everyone were surprised that I went from moderate to severe on my echo. The TEE just confirmed it. I was grateful for the promptness that all went down. You need to feel good about your primary and trust what they will say and do. It's totally up to you as to what direction to go. Just letting you know that I'm here and knowing how you feel, Terry

Tim Goff  Ben, I am home now and feeling pretty damn good considering. I recall that you mentioned contacting me because our issues were similar. Feel free to reach out to me at itwg62@hotmail.com. Be glad to help any way I can.

Barry Van Gemert  Ben, It is all about finding a doctor that does hundreds of these surgeries a year and maybe has done over a thousand in his career with a repair vs. replacement rate of 90-95%. Not to say that a less experienced surgeon can't do a great job (they all have to start somewhere). The question is, do you want to risk your heart on a rookie? I think the answer for most of us is obvious.

Ben Hyman  I would agree wit that sentiment! The first surgeon that I met with does about 25 Valve surgeries per year but comes highly recommended . He repaired a much worse valve of a friend of mine who had heart damage from Rhumatic fever as a child and an RF of over 80%...much worse than mine. There's another at United that has done over 1000 OHS and over 600 valve procedures . Abbott has the best record in the Twin Cities and they do almost as many as Mayo. It would be much easier on my support team to get this done in the Twin Cities. Traveling to Rochester is an option but not out of state unless my life depended on it. It's curious as to why Mayo is not even listed as an option in the map in this site

Barry Van Gemert  Your life does depend on it. You don't want to wake up finding out the valve is replaced. A life of taking Warfarin which if screwed up can give you a stroke or an accident with your kettle bells can cause you to bleed to death.. A little inconvenience for a few days is worth the quality of life you will have post surgery.

LaDonna Mangile  I'm having my repair at Mayo Clinic on March 30 and feel very good about it. I figure they are not a sponsor... here as I noticed it also. My surgeon does valves almost primarily and was booked out 2 months when I met with him!

Ed Smith  Ben, like you I had virtually no symptoms and had to have faith in the Echo results, which clearly said only about 25% of normal blood flow was going through my aorta valve. Check with your Cardiologist regarding weight workouts. I was told to continue the cardio part of my workouts, but not the weight or resistance machines, as that could trigger a heart attack.

Barry Van Gemert  You can have severe regurgitation and be asymptomatic. Maybe because your disease progressed so slowly, your body adapted over time. The fact you have heart enlargement says its time to get your valves fixed.

Clare Auten  I agree with Ed. Check with the Dr about the weights. I said something to mine and he said to lift nothing more than a gallon of milk until after but he said running was fine.

Ben Hyman  I asked my doc about my KB workouts and he thought as long as I was tolerating it I could continue ...perhaps that's not the case?

David Brunkhorst  Ben, I had my AVR and arch repair at the Mayo Clinic-Rochester. Dr. Alberto Pochettino was my surgeon. Very impressive people, facility, experience. Surgery on Monday-on my way back to Sioux City IA on Friday. I am originally from Lake City-Red Wing area. I would not go anywhere else. I am 9+ months on the mend. Doing good.

Ben Hyman  Thanks David,

Let me know how we might connect some time. Would enjoy getting your first hand prospective on what I might experience

Ben

Janice Smith  Hi Ben. I, too, have had the night sweats since my surgery last September. No reason given, but thankfully they do subside. I even get them during the day, and hope they will soon go away and stay away. They have gotten less, but still there.

Ben Hyman  Thanks Janice! Mine started the very evening after my initial meeting with a surgeon where I learned I would need surgery in a year or less. That to me sounds like stress and anxiety related rather than a worsening condition.