Mitral Valve Stenosis

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Christina L

Christina L

Well-known member
Joined
Sep 2, 2003
Messages
1,697
Location
Estes Park, Colorado
I have been rarely posting here as of late, because I was beginning to get very depressed and upset that my mitral valve repair may be one of the few that doesn't go the distance - it is hard to read the glowing reports that others with mitral valve repair have gotten in the last several months from their respective doctors - yes, I am rather envious and I admit it - I wish everyone well, of course, but I am green with envy. I also seem to get no answers to my questions these days. VR.com has not seemed like a place where one can get answers to "heart" questions anymore (at least it seems that way to me).

I am posting this thread today because I just received a letter from Dr. Cosgrove in Cleveland (or should I say his assistant, Jeanne) regarding my inquiries about my newly diagnosed mitral stenosis three years out from mitral valve repair.

The letter said little, if anything, that helps me out, only that Dr. Cosgrove said to tell me that "no one knows the path that valvular disease will take" and that he will be glad to read my echo tape if I want to send it to him (right now my echo tape is being re-read by my former cardiologist and I am anxiously awaiting his diagnosis). Also the letter said that my mitral valve gradient was 6.0 on 11/11/03 and it is now 8 (as of January 2007). My mitral valve area is 1.35.

They read my echo in January as "mild mitral stenosis" but from my reading on the web, this seems to be "moderate" mitral stenosis.

My new cardio got a bit upset when I questioned his diagnosis of "mild" - he told me in January that it needs to be watched yearly, BUT he was sure my repair would last a good 20 years.

I am rather miffed - I feel that Dr. Cosgrove did a repair when he shouldn't have. The letter also said there was no measurement done of my mitral valve area right after surgery and on discharge. I don't understand that one at all! Why in the world wouldn't a surgeon do a measurement of the mitral valve area after he does a repair???

Can a person live with mitral stenosis indefinitely, especially from a repair? I have read a few other people here on the board who have mitral stenosis after repair - some have been told what I have - nothing to worry about - the stenosis is from the ring around your annulus - your repair will last 20 years - others say they are going to need replacement eventually because of the stenosis.

Thanks for any wisdom on this matter you can give me.

One more thing - my mitral valve area was also 1.35 in November of 2005, so the stenosis doesn't seem to have gotten worse in over a year's time.

Christina L
 
Although it is good that you are having the tapes checked, I would say that the fact that it hasn't changed since November 2005 is a good sign.

Keep us posted as to what your former cardio says and also Dr. Cosgrove when you send the tape to him.
 
Christina

Christina

Did you see the new post made by MaryC 1 day ago..about 5 posts down.. on Heart Talk..Mitral Valve repairs? Looks like about 10 members replied to it... I hope you can find some good news soon..:) How is your adoption going? I know you want to feel good when you go for Little Emma..My Russian Grandchildren are growing leaps/bounds...Ages 3 and 5 now..No doubt that my age 5 year old Grandson is gifted. He can write anything ..if you spell it first...Loves to read..My age 3 year old Granddaughter grows more beautiful by the day..and a Tomboy.:D We were blessed...Bonnie
 
Adrienne -

Adrienne -

Thanks. I am waiting patiently for Dr. Larson's reading of the echo tape. I will wait and see what Dr. Larson says before I send the tape to Cleveland. I know in 2005 when I had my scary echo that showed possible right heart enlargement, I sent the tape to Cleveland and at that time the radiologist said "no stenosis but leaflets have delayed reaction consistent with age." That radiologist is one of the best in Cleveland, I was told.

My cardiologist read the echo in 2005 as "The posterior mitral leaflet is thickened and fixed consistent with prior mitral repair surgery."

Now I am told per the reading of my echo in January 2007 that I have mild stenosis. As I said, the mitral valve area measurement is the same in January 2007 and November 2005.

I am sitting here drowning my sorrows with a glass of wine. I am just downright sad and feeling sorry for myself. I know I will snap out of this in a few days and just move forward with all the hope that I can muster.

Granbonny, thanks for asking about the adoption. We are in the waiting period now. Unfortunately China is making it difficult for waiting adoptive parents right now. The wait is getting longer and longer. We are now looking at early to spring 2008 to go to China, if not later than that, UNLESS China gets their act together and speeds the process up. The adoption agencies just have to comply with China's wishes. Nothing that can be done.

I would like to get to China and back before I have another surgery and/or before I hear that my heart is having other problems, as I think I will back out of the adoption with any "iffy" news about my heart. However, I still am so excited for Emma to join our family. I am just so afraid I am going to hurt this little child more if we bring her into the home and she is "abandoned" again by my early demise. :(

Bonnie - I have seen the photos of your grandchildren from Russia. They are absolutely beautiful - those faces - just perfectly beautiful. My sister has adopted children from the foster care system (in Iowa) and I love them the same (if not more!) than my biological nieces and nephews. Love has no boundaries - adopted or bio children - it doesn't make a difference. Again, thanks for asking and enjoy those grandchildren - they sound delightful!

Christina L
 
Christina,
I started the thread on mitral valve repairs the other day to get an idea from VR.COM members about the longevity of repairs. The surgeon who did my repair advised my family after my surgery that these valves are a little bit unpredictable. He said the repair may last 20, 25 years, or 10. He said you can't tell because you don't know how fast the heart condition is progressing and the key is whether the anterior leaflet gets stiff. I have resigned myself to there not being any definitive answers when it comes to this congenital heart disease I have.
 
Christina, I think it makes a difference if:

1. If your heart is reacting negatively by a MODERATLY stenotic mitral valve.
2. If the condition is progressing.

I would think a smaller person like yourself may be better able to tolerate a mitral valve that is stenotic like yours. You are absolutely right that a mitral valve of 1.35 is according to the references moderate rather than mild.
Get your answers, you deserve to know. It may be that if you are symptomatic but the condition is stable then adjusting your activity level might be called for. I am having a problem with double vision and it is putting a damper on my computer time. I too am trying to be patient while some things are getting sorted out. I know you are in a tough place and I will be praying for you to have wisdom on what avenues to investigate and when......the same thing I'm praying for me too.;)
 
Hello Christina,
I'm sorry that I have no answers for you about the expectations of your repair but I did want to say that you go right ahead and enjoy that glass of wine - but then you get yourself up and moving and get that echo tape back and send them off to Cleveland Clinic so that you can hopefully get some answers. Don't beat yourself up for feeling a little envious of others or down in the dumps - that's human nature. I have had those days myself and I'm sure most everyone else here has as well. Talk about feeling down in the dumps, I have actually had times when I felt jealous reading about someone getting a surgery date. I've only been in the waiting room for 2 1/2 years and it is wearing my patience. I think the biggest problem I have (and perhaps it may be yours as well) is dealing with the unknown and having your fate lie in someone else's hands. I'm usually in control of every detail of my life and with my MR I have no control at all and in some ways has turned my life topsy turvey. Plus added to your heart concerns, is trying to move forward with an international adoption that you have no control over. Is it any wonder that you feel the way you do... Susie
 
Christina, I'm so sorry to hear that you're going through this, but it is completely normal. I think you will definitely feel better once you get some answers to your questions. Please, please don't let your heart issues derail you from going forward with the adoption process. When I had my repair, I was told that it would only last at most 10 years. Now this was in the dark ages (1974). I couldn't wait to get it done so we could get on with the business of having babies. Our daughter came in 1976 and our twin sons in 1978. I had my valve replaced in 1981. Everything worked out for us and it will for you also. None of us know what the future holds. But I know this... even though I only know you through your posts, I think you would make a wonderful mother. Keep your sights on that little girl that God has chosen for you. Our heart issues can be taken care of. I'm amazed at how far we've come since I had my two surgeries. Things will only continue to get better. OK, that's my sermon for tonight. Just know that I'm thinking of you and will be keeping you in my prayers. Looking forward to seeing what your former cardiologist thinks after reading your echo. Keep us informed. LINDA
 
My 2 cents...

My 2 cents...

Hi Chris,

If I may add my two cents ........

Enjoy the wine, have another glass (hopefully California wine) then go for a walk (hopefully it is great weather there), get off VR for tonight and let the professionals give the medical advise even though there are good caring people here all with good wishes.

Take care,
Stan
 
Christina,

I don't have any answers for you ... sorry :(.

But, please know thoughts/prayers are coming your way....



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
PICS:lego.HO.model.MCinfo.RT.CHD = http://www.chevyasylum.com/cort
"Waiting to be mended like a potter would mend a broken vase" ... Larry Gatlin & The Gatlin Brothers ... 'Broken Lady'
 
Hi Christina,

I think there is a great chance the valve is functioning properly. News that your numbers have not changed in over a year.....very promising. Hold on to that thought and focus on it!:)

Stenosis and calcification are very common with valve replacement as well. Calcification was detected at my two year echo. 6 years later I am still progressing normally.

mMost of us will face surgery again in the future. We need to live in the now.......and savor what life has to offer! It took me FOREVER to have this mindset. Happy to enjoy some normalcy. For me, it was definately mind over matter.

Look forward to hearing more on your adoption!

Take care my friend!:)
 
Hi Christina, I just wanted to send my best wishes to you...this is a hard road we are all travelling. ))))) HUGS ((((( .......Jacqui.
 
Hi, Christina
my son had his mitral valve repaired at 18 months old,the repair failed straight away, he has mital stenosis and we have been told he will need his valve replacing. He as a heart scan every 6 months, he as no symtoms and he is 9 now, so he as gone just over seven years with no problems.I personally dont think the doctors have any answers, it is just a long wait, that can drive people crazy if you let it.I have learned to try and take it one day at a time and just see what happens. Anyway i just wanted to wish you luck, i really hope everything goes well for you and you get the answers your looking for
best wishes for the future, Paula x
 
GFood morning all -

GFood morning all -

It was a rough night last night and also this morning - first thing I thought of when I woke up - my heart, of course.

Mary C - I know what you are saying about the crap shoot that is this thing called valve repair. :( My repair was picture perfect for at least two years out and my cardiologist was so pleased with the outcome. Thank you for your encouragement.

Betty - I do not have symptoms that I know of regarding the stenosis. I do have problems taking in a deep breath (at times) but attribute that to the hypothyroidism. My exercise tolerance is fantastic. I don't get winded at all. I am tired a lot, but again, thought it was due to the hypo. I will get answers, believe you me! I am going to call the cardio today and hopefully get an appointment to talk or maybe he will call me (?). Ha-ha! I haven't had a cardio yet who will call me personally.

Susie - Thank you for your kind words. What I realized this morning is that my life has been like a rollercoaster ride for the last four years regarding my heart. My emotions are up and down, constantly. And you are right, I have no control over any of this and the fear of the unknown is the worst. The adoption does throw a major wrench into all of this - if it weren't for that, I would resign myself to my fate and not worry how much time I have left.

Linda - your post made me teary. Thank you again for saying the things you do about the adoption. You know a person can look at this two ways (of course) - I tend to think that maybe God is trying to tell me not to adopt - I have had one issue crop up and then another regarding my heart. OR is this all to only make me stronger and to appreciate having a child even more? I am unsure what is going on. Linda, I admire your strength. I admire so many here on VR.com. Thanks for sharing your wonderful life story - it is an inspiration.

Stan - again, thanks. ;)

Cort - you're such a dear - thank you for the prayers and good wishes!

Gina - thanks for sharing your thoughts on stenosis and calcification. This is exactly what I am confused about - how many with repairs or replacements have at least some stenosis? Dr. Cosgrove's nurse, Jeanne, told me that not everyone gets stenosis after repair, so why are my cardiologists not even flinching at the stenosis and telling me it is from the ring around the annulus? It wasn't even mentioned by my cardio 1-1/2 years ago (?) but I had it then, too. The mitral valve area was the same then as it is now. Trying to live for today is so hard, especially with the adoption looming. I know exactly what you are saying though and appreciate your post very much. :)

Jacqui - you are right - we are all traveling this road and I guess that is why I keep coming back to VR.com for empathy and reassurance, from those who know! Thank you.

Paula - I'm glad to hear that your son is still doing well even with his mitral stenosis. My valve didn't fail right away - in fact it seemed to be a 100% perfect repair for at least two years and the docs STILL say it will last me 20 years!! I am soooooo confused. But knowing that your son has gone many years with his stenosis is encouraging. I am majorly bummed that I will need reoperation most likely but I sure hope that I can go another 9 years without being trussed up like a turkey again! :( And yes, as others have said, maybe by then, they will have that new mechanical valve that does not clot all ready for me and other new advances made in heart valve surgery. The cardios do not seem concerned about my stenosis in the least but I will be calling doctors today and trying to see if my former cardio has his second opinion done of my echo tape. Then I will send the tape to Cleveland if I am still not happy with answers.

I think this all boils down to watching and waiting and LIVING in the meantime. I know that is what you ALL are telling me. I just didn't want to have to watch and wait any more, that's all. :(

We had a 38-year-old woman here in Estes who died of ovarian cancer a few weeks ago. She had a husband and two pre-teen children and she went "down" fighting. It is ALL relative and life is not easy for many - I need to remember that.

Thank you everyone. You are special people. You give me a lot of strength to keep pushing forward, despite my setbacks.

P.S. I think the "Gfood" morning was a Freudian slip! I haven't had any breakfast yet! Hee.

Christina L
 
Hello Christina,

I can relate to your concerns. It turns out I've had Mitral Stenosis at least since my Aortic Valve Replacement but it was not deemed sufficient to address at the time.

My Mitral Valve Effective Area went from 2.5 sq cm to 2.0 to 1.5 to 1.5 to 1.5 over the last 4 annual checkups. The surgeon who did my AVR told me that I would be "Highly Symptomatic at 1.0 sq cm." Another surgeon I consulted told me that he believed most of my symptoms were due to the STIFFNESS of the leaflets, and that they were barely moving. My symptoms (SOB on exertion) have become more noticable over the past year and especially the last 6 months. A repeat echo and then a Stress Echo revealed my Mitral Gradient was 25 mmHg at rest but soared to 50 mmHg after 6 minutes on a treadmill.

SO, it would appear that you have some time to go before intervention would be called for. I have been told that Mitral Valve Stenosis does NOT progress as rapidly as Aortic Valve Stenosis and that seems to be borne out by my experience. It just makes the WAITING (and WORRYING) last that much longer!

SO, when the time comes for MVR, do you plan to return to Cleveland Clinic? or go elsewhere (eg closer)?

BTW, the concensus from my Cardiologist and two independent Surgeons was that going through my right side (Right Thoracotomy) was deemed to be the best approach for my MVR which will be my 3rd OHS.

I have also been told that the risk of Sudden Death from MITRAL Stenosis is not as great as the risk from Aortic Stenosis. Mostly, you will just notice that you have less and less exercise tolerance so it appears that you still have a ways to go before your MV Stenosis becomes critical. Just keep up those regular checkups and try to 'not dwell' on your heart issues too much in the mean time (YEAH, RIGHT!).

Best wishes,

'AL Capshaw'
 
Thank you, Al.

Thank you, Al.

I had done a search on VR.com regarding mitral stenosis and saw that you had it. Sorry to hear that. Thanks so much for all the great info regarding stenosis. You are always so great with giving pertinent info to questions here on VR.com.

You know, I still use the mantra you gave me of "Be strong." I was saying it over and over last night, although last night was kind of hopeless as far as being strong. :(

I just spoke with my new cardiology office nurse - she said that as long as I am not having symptoms I should be okay and to get the yearly echos as things will progress slowly. She also said (?) that congenital/rheumatic mitral stenosis is different than stenosis caused by the mitral valve repair and should stay stable. I will try to believe that. :) This nurse was fantastic and so far I am very glad I switched cardiology offices although I still can't get a cardio to call me on the phone directly! Ha.

She also said (as opposed to what Cosgrove has said) that everyone who has had mitral valve repair or replacement has some degree of stenosis - she kind of hesitated when answering that, so I am sure that is not 100% across the board, but a big percentage have stenosis after valve surgery.

She said that the diagnosis of "mild stenosis" given to me by Dr. Chapel is based on my personal factors. This nurse said that EVERYONE is different, i.e. "one size does NOT fit all." She said to believe 50% of what I read on the internet. :rolleyes:

I guess I am just really bummed that I probably will need a replacement one day. I thought I would never have to see an operating room again.

Al, I am unsure what I would do about my next surgery. Hopefully it won't be for a long, long time but I probably would have a replacement done in Denver. Traveling to Cleveland was amazingly hard - that trip back was like a bad dream. I was sooooo out of it and in such pain. I have chosen to repress a lot of my memories but with this latest realization that I am most likely going to need reoperation, I have been reliving my surgery experience in Cleveland. It was rough, but it IS doable, for those of you who are in the waiting room. Just not a pleasant experience to say the least! :)

There are many qualified docs to do a replacement - it was my complicated repair that sent me to Cleveland. I am thinking of Rain's surgeon in Denver, although I am not sure how old the guy is now! I want a surgeon with sharp eyes and steady hands. :)

I asked for a bovine tissue valve if Dr. Cosgrove could not repair my valve but for a second surgery I am unsure if I would want a mechanical or a bovine tissue. I guess it just depends on when I have to have the surgery. If I can hold off for 10 years, then I will probably go with the tissue, unless they have the new mechanicals that are clot-proof. Let's all pray for that day!!!!

I know third surgeries are very, very risky and if I have to have a second surgery, I most definitely wouldn't want a third.

There again, my cardio in January told me the repair should last 20 years. Okay..... (sigh)

Evidently the problem I am having is with impaired leaflet motion and I am guessing it is from scar tissue or calcification from the surgeon's cuts. Hopefully it just won't get any worse. I can only hope and pray.

Thanks Al and best wishes to you with your mitral valve surgery. Even though all of this is so crappy to have to deal with when so many breeze through life with no problems until they are very elderly, we have to count our blessings that we were born in this day and age, when we have a fighting chance and we have the miracle of heart surgery. Just think of it all - it is quite a miracle that they can stop your heart, cut into it, and get it up and running again! Wow!

I'm trying to be positive here, work with me. ;) :D

Thanks, Al!

Christina L
 
Chris,

Along with the positive thinking (and not being able to see into the future), who knows where medicine will be if you ever need your valve replaced. Maybe the question won't be bovine/mechanical, but will be "would you like to use your stem cells to grow a new valve?"

Yet another reason to live in the NOW and for TODAY, rather than wallowing in an unknown future. In ten years, looking back on how happy/healthy you are at this time in your life, will you be happy that you spent it worry about the future? Or will you wish that you had spent less time worrying and more time enjoying the health you have now?

Melissa
 
I totally agree with you Melissa!

I totally agree with you Melissa!

Got on the web to find a quote that I have always liked about the regrets over yesterday and the fears of tomorrow driving men "mad" - anyway, you all probably know the quote. Found this site and it has some fabulous quotes on worry and some a variation of the one I was looking for.

Christina L

http://www.dennydavis.net/poemfiles/worry.htm
 
Hi Christina

So sorry to learn of your difficulties. I'm hoping for the best possible outcome for you. Keep us posted.
 
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