Update on 5 year post op repaired valve..Problems

[offwego]

Hi All

THought I'd update my situation here. Had my Mitral Valve repaired 5 years ago at NYU by Dr. Colvin who has since passed away this year.

I have had some symptoms for the last year from the valve moderately leaking. To insure this was not deconditioning, I joined a gym and got in shape..But the symptoms have continued and gotten worse. I noticed it very much this summer on a drive out west i high altitude when I was panting for breath.

My cardiologist did an echo a few weeks ago and referred me to Dr Covin's partner, Dr Galloway at NYU. He prescribed a low dose of Diovan (40 mg) and I am scheduled to see him Wednesday. My cardiologist has increased the dose to 120 mg a few days ago.

I went for an echo stress test this morning and was able to do 10 minutes on it with a heart rate of 169..Blood pressure is normal.

But the leaking has progressed to moderately severe. The doctors said many people can live with this and we can monitor it often but he also suggested I get a second opinion from another surgeon if I wanted.

Just came back from a short walk with my dog...I get winded quicker than I used to and I sweat more too...

I very much feel that I need to have another operation to either repair again or replace. I am quite devastated by this but have felt it for quite some time and I guess I'll just have to get tough once again and take it step by step.

I have heard great things about the Cleveland Clinic and would like to get a second opinion there.

Guess I am rambling a bit here, lots going through my mind..

Thanks for reading..

 

[Phyllis]

So sorry that you are in this position again and wish you the best. I agree that another opinion will help put your mind at ease and the Cleveland Clinic is an excellent resource for that. Best wishes to you!

 

[Freddie]

Gosh golly gee whiz.
Hope you do get a second opinion.
Sending you my best.

 

[ALCapshaw2]

I've become a Big Believer in Multiple Opinions and have learned something New from every Cardio / Surgeon I've consulted.

With repeat surgeries, it is wise to carefully assess the Risk / Benefit ratio before making a decision.

As you know Cleveland Clinic is an Excellent Heart Center and they have a LOT of experience with Repairs so should be in a position to give you a considered assessment and recommendation.

I expect there are also other qualified centers in NY, Boston (B&W, MGH), and Baltimore (Johns Hopkins).

10 minutes on a Stress Test is a pretty good result for a VR patient (i.e. I would be thrilled with such a result! but your symptoms also need to be weighed in.

One Surgeon I know advises: "Call me when your Quality of Life is No Longer Acceptable". Pretty good advice I would say. Defining that point is the 'tricky part'.

 

[offwego]

I've become a Big Believer in Multiple Opinions and have learned something New from every Cardio / Surgeon I've consulted.

With repeat surgeries, it is wise to carefully assess the Risk / Benefit ratio before making a decision.

As you know Cleveland Clinic is an Excellent Heart Center and they have a LOT of experience with Repairs so should be in a position to give you a considered assessment and recommendation.

I expect there are also other qualified centers in NY, Boston (B&W, MGH), and Baltimore (Johns Hopkins).

10 minutes on a Stress Test is a pretty good result for a VR patient (i.e. I would be thrilled with such a result! but your symptoms also need to be weighed in.

One Surgeon I know advises: "Call me when your Quality of Life is No Longer Acceptable". Pretty good advice I would say. Defining that point is the 'tricky part'.

The cardiologist is not aggressive in thinking about surgery. He is trying to find other reasons I feel this way but I know my body. Of course they don't want to go in again and fix or replace the valve only for me to have similar problems.

If I were not on the Diovan it would be much worse. I am doing ok and all but def get winded and overheated easily, not to mention tired.

It's not dramatic but it's very noticeable and has gotten worse over the past months..

I am sure they will do a TEE to get a better look at the valve, then I will hear what they say and get another opinion at Cleveland.

I had the surgery 5 years ago at NYU and rather not go back there for a variety of reasons.

Maybe they will increase the Diovan yet again and it will relieve more of the symptoms?

 

[WayneGM]

As a fellow mitral valve repairee, your experience is of great interest and concern to me, and I appreciate your update. If it were me, I'd definitely be looking for a second opinion. I hope they can find a way to mitigate the problem short of another surgery to repair/replace. Best wishes and good luck.

 

[offwego]

Thank you Wayne, I will definitely keep everyone posted and as a 'repairee', I do suggest not worrying too much about your valve leaking...as the worry doesn't seem to help ...(case in point)..

My guess at this point is they will not be rushing me into surgery anytime soon and opt to monitor it closely and play with dosages of medication.

I never would have thought I would be the one more aggressive than my doctor about considering a surgical solution but I am.

Don't get me wrong, I am a bit sick over the thought and it's the last thing I would want to do but...I think I can feel much better than I do now..

I'm a young 50 year old have lots of interests and would like to be as active as I can be without constantly thinking about my heart..

I am using this potential surgery as a 'wake up' call to get some business affairs in order to make my life easier..I've been procrastinating about selling my business and this recent news has given me the impetus to get it done.

 

[ALCapshaw2]

It sounds like you are doing what you need to do to "Be Prepared". That is wise. The Boy Scouts would be Proud

I'm sure many of us will be interested in what you learn from your second opinion. Hope it is helpful and useful.

 

[nearyneary]

Offwego, I had my mitral repaired by Dr. Colvin as well (3 years ago). I'm so sorry to hear that you may need to have another surgery.

I actually worry about that quite a bit because I was told within a few days after my surgery that my echo results showed that I still had a moderate to severe leak, and would definitely need surgery again. Fortunately, that has not turned out to be the case so far, and my most recent echo shows that I have only a mild leak and a 50% EF (up from 31% before surgery). However, I'm not entirely confident that this repair will hold up for the rest of my life. I'm 32, so the rest of my life will hopefully be a long time!

I can understand why you would not want to go back to NYU again for surgery. I was not impressed by the cleanliness of the hospital, and I had a lot of billing problems afterwards (which seems to be par for the course, sadly). I would definitely look into other options such as the Cleveland Clinic. Please keep us posted!

 

[offwego]

Offwego, I had my mitral repaired by Dr. Colvin as well (3 years ago). I'm so sorry to hear that you may need to have another surgery.

I actually worry about that quite a bit because I was told within a few days after my surgery that my echo results showed that I still had a moderate to severe leak, and would definitely need surgery again. Fortunately, that has not turned out to be the case so far, and my most recent echo shows that I have only a mild leak and a 50% EF (up from 31% before surgery). However, I'm not entirely confident that this repair will hold up for the rest of my life. I'm 32, so the rest of my life will hopefully be a long time!

I can understand why you would not want to go back to NYU again for surgery. I was not impressed by the cleanliness of the hospital, and I had a lot of billing problems afterwards (which seems to be par for the course, sadly). I would definitely look into other options such as the Cleveland Clinic. Please keep us posted!

It's my understanding that leakage results from stress tests can vary..I would not be surprised if on the next test it is back to moderate but who knows? That must have been quite traumatic to be told you will need another OHS right after the first one!

I had the worst experience at NYU, bad reaction to the morphine, nurses who were too young and rather inept.. I was not impressed with the cleanliness of the hospital and didn't like the overall attitudes of the nurses. There were exceptions of course.

I think I am a bit ahead of the curve on a reop but definitely want my ducks in a row with a game plan if it gets worse or it's decided that it needs to be done.

 

[cp172]

Offwego,

What type of repair did you have to the mitral valve? I too am a big believer in second opinions. Best of luck.

 

[offwego]

Offwego,

What type of repair did you have to the mitral valve? I too am a big believer in second opinions. Best of luck.

I had minimally invasive surgery with a Future Band ring..I have a meeting with Dr Galloway at NYU tomorrow and will post the results..

 

[offwego]

Here is the update from today's meeting with Dr. Galloway of NYU.

He reviewed the results of Monday's echo/stress test and confirmed the leakage has increased to 'moderate/severe' from moderate. He wants me to come back in for another echo (not stress) in 3 months..we then discussed a TEE and he added that test as well and told me if I feel any different or want to come in sooner that I should.

I really like Dr Galloway and had a very good conversation.

When I made a comment about 'how it's not my decision to do another operation', he said he listens very closely to what I say I am feeling and that my input is important. Clearly my feelings about if my quality of life is suffering is factored in more than I had expected.

He reduced the Diovan from 120 mg to 80mg and added a low dose of Toprol XL as I complained about some 'missed beats' and overall didn't like the way my heart was feeling.

Answering my question on the likelihood of needing another surgery, he said 50-50 that I will need another surgery in the next 5-7 years. He added if he did the surgery he would not do minimally invasive approach but rather thru the sternum which is a considerably smaller incision than it was in the past.

He said he would of course try to repair it if it was possible and if it can be repaired by anybody then he could do it and would. If not, he would replace it with a tissue valve. He added that the tissue valves have been improved since 2002 and that now they are expected to easily last 20 or more years. He said if I wanted second or third opinions, he would assist me and contact the doctors on my behalf which I appreciated.

I then addressed my unhappiness with NYU in 2002. He listened very closely and agreed 100% with me in all of my observations. He told me the hospital has greatly changed in the last 6 years due to a contribution of over $200 million dollars from Langaro who was involved with creation or investment in Home Depot.

Overall I was very pleased with Dr Galloway. He has a great demeanor, listens very carefully and I trust him.

Dropping to 80 mg Diovan tomorrow and starting the Toprol...wish me luck!

 

[WayneGM]

Thanks for the update. Sounds like you are in good hands. Good luck!

 

[catwoman]

I had minimally invasive surgery with a Future Band ring..I have a meeting with Dr Galloway at NYU tomorrow and will post the results..

What was the nature of the damage to your mitral valve that required the repair 5 years ago?
What was done to the valve -- leaflet resectioning, chordae reattachment/replacement, etc.?
A surgical report will detail what was done to the valve. If you don't have a copy of your report, best to get one. That might be of help in a surgeon deciding where to go, along with results of current tests.

 

[Marguerite53]

This is all great information that you are supplying this forum. Thanks for all the details.

I do not have a repaired valve, I rather "moo", but your words caught my eye because Diovan is my drug! I love Diovan. I don't know what makes it more special than other bp meds, long ago my cardio told me why she had chosen it particularly for me, but it's the one I've always been on since my valve closed up (stenotic) to .9 followed 3 years later by vr surgery. Whomever bumped your Diovan dose up from 40 (didn't even know there was a 40...thought 80 was the lowest dose) may not have mentioned that the diovan can make you very tired! When I got bumped up to 160 mg I really noticed a difference. I am currently on 80 mg. Post surgery I had PVC's (benign, annoying arrythmias) and was put on the beta blocker Toprol XL. It helped the PVC's, but the toprol made me tired and weak feeling. So after about a year of that I bargained with the cardio to take me off the beta blocker (toprol) and double my diovan. So for about 9 months I was on just a 160 mg dose of diovan. Then I noticed some other things (skin problems, off-balance feelings) and decided to check in with cardio to see if I could reduce the diovan since my blood pressure was normal. So now I am monitoring carefully, but am back to just the one bp med, and that's only 80 mg of Diovan.

Here's my thought. The increased Diovan could have made you much more tired. Be aware, the Toprol may make you tired also. The missed beats may be your heart wanting to "be heard" since it is not in perfect shape. But a renowned surgeon is thinking 5-7 years out for surgery. Could it be that instead of jumping back into the OR, you might take some time to evaluate your life habits, currently, and make some changes for the positive. Perhaps this business is too stressful for you. Perhaps your work-out regime was too stressful for you. Can you stop all caffeine products, lower your salt intake, look at a more balanced day to day?

Well, just some thoughts. Glad you liked this surgeon....that's certainly a great first step!!

Best wishes.

Marguerite

 

[Susan BAV]

Guess I am rambling a bit here, lots going through my mind..

Thanks for reading..

My primary issue isn't mitral but I found your interesting thread very informative with no rambling. I'm glad you like the surgeon; it sounds like you covered a lot of important details with him. Hoping all goes well for you, including the med adjustment. Take care .

 

[offwego]

Here's my thought. The increased Diovan could have made you much more tired. Be aware, the Toprol may make you tired also. The missed beats may be your heart wanting to "be heard" since it is not in perfect shape. But a renowned surgeon is thinking 5-7 years out for surgery. Could it be that instead of jumping back into the OR, you might take some time to evaluate your life habits, currently, and make some changes for the positive. Perhaps this business is too stressful for you. Perhaps your work-out regime was too stressful for you. Can you stop all caffeine products, lower your salt intake, look at a more balanced day to day?Marguerite

Thank you for this post and I am glad you are finding this thread useful. Dr Galloway didn't agree with my decision to increase the Diovan to 120mg. I had done it a few days ago, knowing i was going to see the cardiologist and him. He said for me he didn't think anything over 80 is going to make more of a difference. I took my first dose of Toprol XL 25mg this am. I just walked my dog about a mile, it's 80 degrees out and there are a few hills. I sweat more easily and huff and puff but i can easily do it.

I am a young, single 50 year old, with one kid in college and a 14 year old. I have tremendous freedom and don't work much but have decided to sell my business anyway and start a new business that is more fun and still offers lots of freedom.

I am not willing to accept this quality of life if the meds don't make more of a difference. If I were 25 years older, I probably would. But as I am often lazy, somewhat of a hypochondriac, if things are harder for me, I tend to just not do them and I am too young for that!

I eat well, take reasonable care of myself, don't drink much or smoke. Don't work out too hard, eat too much salt or any of that. I don't think any lifestyle changes are going to make much difference other than lowering my standards of expectations for my life and I am not ready to do that now.

Life is complicated for sure...but my heart and gut tell me that I am going to want to have this valve either repaired or replaced again and not string it out to wait and see what happens. But all this could change after the results of the TEE and what Dr. Galloway suggests.

Opinions on my decision are appreciated!

 

[offwego]

What was the nature of the damage to your mitral valve that required the repair 5 years ago?
What was done to the valve -- leaflet resectioning, chordae reattachment/replacement, etc.?
A surgical report will detail what was done to the valve. If you don't have a copy of your report, best to get one. That might be of help in a surgeon deciding where to go, along with results of current tests.

I found the report..It's like reading Latin to me..Here;s a sampling of the key points of the report ( i think)

--------------------------
Surgical Pathology Report

Macroscopic Description: The specimen is received in formalin labeled with the patients name and 'mitral valve leaflet posterior" and consists of an atrial ventricular valve leaflet measuring 2 cm along the free edge and 0.5 cm from free edge to base. There is diffuse myxomatous thickening of the leaflet which apprears billowing and redundant. The attached cords measure 2.8 cm length x 0.1 cm in diameter.


Operative report

Preoperative Diagnosis - Severe mitral insufficiency. Flail leaflet of mitral valve. Progressive cardiac dilation.

Operation: Mitral Valve reconstruction with posterior leaflet resection. Mitral annular remodeling with leaflet repair and annuloplasty with placement of a 28 mm medtronic Future band. Minimally Invasive approach. Central arterial cannilation. Transatrial and antegrade cardioplegia. Percutaneous venous cannulation.

Operative Findings - There was flail segment of the posteriour leaflet. About a 2cm resection was carried out with annuloplication and leaflet repair as the leaflet was not that high. A 28 mm future band was placed for annuloplasty.

The ventricle was even a bit more dilated at the time of surgery than had been preoperatively, so this was clearly progressive.

---------------------

In summary the surgeon said he was 'cautiously optimistic"...Never liked that...lol