I am a 40 year old woman in good health, with the exception of severe Mitral Valve Prolapse. My cardiologist will be performing a TEE next week to get a better look at the valve, and to provide this picture for the surgeon in order to determine when I will have surgery. My cardiologist feels I should probably have surgery within the next 3-6 months. She said that both leaflets are affected and are not closing properly.
If I have the surgery, I do not want a valve replacement if at all possible as I do not want to go on anticoagulants for life. I would prefer to have a repair.
My question is how and when does the surgeon know if he can do a repair instead of a replacement? Do they have an idea prior to surgery? I have researched online and it appears that a posterior repair is easier than an anterior repair, and that the anterior repair requires a skilled surgeon with more technical skills. How do I determine a surgeon
My question is how and when does the surgeon know if he can do a repair instead of a replacement? Do they have an idea prior to surgery?
Generally they have an idea based on the anatomy seen on the echocardiogram. The mitral valve has several components and depending on what component of the valve is effected and if there is any associated factor (such as calcification) they should be able to tell you the general success rate. One important component is the experience of the surgeon. There are also multiple etiologies of why a valve becomes incompenetant. For valve mxyomatous degeneration which can lead to common MVP, the chances of repair are generally pretty good. Some surgeons, generally the higher volume ones, have a better chance of repairing the valve even if there are these associated factors.
I have researched online and it appears that a posterior repair is easier than an anterior repair, and that the anterior repair requires a skilled surgeon with more technical skills. How do I determine a surgeon
You have great questions. I begged by surgeon to repair instead of replace, because like you, I did not want to deal with lifelong anticoagulation. He couldn't promise me anything and said he would need to see the valve etc. Well, he replaced it which didn't make me happy. I had many complications after this surgery and actually had to have it redone by another surgeon 11 months later. My second surgeon told me that based on the echos origninally, this valve could have been repaired. My cardiologist was in the operating room for my first surgery and he said it was 50/50 that it could have been repaired. However, he pointed out that many repairs had to be redone later so I would have been looking at yet another surgery..it happened anyway. The anticoagulation is a huge incovenience but doable. I am looking for a home meter that I can do my own INRs and call them into the MD office. So far I haven't found an acceptable one. There is one where you can do it at home but the results are sent to the company who in turn sends to MD. That would defeat the purpose of being able to manage it myself which I feel I could do very well. When I get my results now, I know exactly what adjustments will be made. Well anyway, good luck to you. I hope all goes well which ever way you choose to go. Both of my surgeons do a heavy volume of these procedures. I don't know how many they repair versus replace but I am told it is in the acceptable range.
A woman I work with had a valve problem and the Cardiologist who did the surgery could not tell her whether he can repair it or if they have to replace it until "he opened her chest to see" she told me. It turned out that he could replace it instead of replacing it.
Hi, I read your post and I just wanted to share my experience.. Not that it will be 'your' experience. I had a mitral valve 'replacement' last May and like you I badly wanted a repair. I was told it was 50/50 chance of repair going in - and my surgeon said he could have 'repaired' it but the repair would not have lasted more than a year and I would be right back having a replacement. I had rheumatic fever as a baby - so I guess it was quite diseased..
I do have to take coumadin - I have found a wonderful web site for others who are taking it as well. www.valvereplacement.com - they have alot of patients on the website who have had 'repairs' and 'replacements'.
Your situation is of course 'personal' and the decision is not an easy one.
I personally am glad I got a mechanical - I feel just fantastic and hopefully I will never have to go back in for another surgery. I'm 49 so we hope this valve will last me a lifetime..
I do everything I did before my surgery... I feel like many others - I had surgery to give me a better quality of life - not so as to have my quality of life taken away from me and the coumadin will just have to be a 'small' factor - as the alternative could have been much worse.
The first question I asked after my surgery was repair or replace. I know how you feel bcause I too did not want to take coumadin the rest of my life...but I was prepared to do so if necessary. My surgeon had told me that he was able to repair 80 to 90% of MV's. ,pretty good percentages from a high volume Doc.
I had other opinions too that thought it could be repaired.
I am 18 months removed from surgery (repaired-age 46) and other than still trying to drop some weight and my BP am feeling great.
I work out regularly,hike,bike,shovel snow and do everything I did before.Don't be afraid to ask your doc as many questions as you want .I had a list. I feel it's important for your psyche to be as confident in your physcian as possible.
The surgery is a tough thing to go through-mentally and physically but you make it.
Best of luck.
I went to that website you mentioned for valves but I could not find what meters were available to test at home and give results directly to the MDs office without going through a company. Could you point me in the right direction?
I find taking coumadin to be a great inconvenience and would not ever agree to that again. Even with coumadin, there are still risks with a mechanical valve in terms of clots, strokes etc. Right now I have been pretty stable so that is good. But historically I have went from 5.8 INR to 1.7 without changing anything. This went on for months but I am not sure why I have stabilized. The MD still wants me to get a lab draw every two weeks because I was so labile. Time will tell and as with everything else that has gone wrong, I simply have to accept it and move on best as I can.
What company is your meter from? That is what I am having trouble finding. There were about 5 on the market, and now the companies are no longer manufacturing them and selling them. So, I guess I just need to know the name of your meter (or the company where it is from) and see if it still is being manufactured. I want to do exactly what you are doing. It cuts out the company fees each time you would test. The company that makes the glucometer for diabetics use to manufacter the INR meter as well but discontinued that last summer.
Thanks for your kind words. I enjoy your posts as well. It helps to have been there!!!
Hi DottyCece, I'm not sure I know what you mean by 'meters'. I have a "ProTime Machine" INR machine at home and I get the test kits also. I test myself once a week and if its relatively close to my 'INR range level' - for mechanical valves they recommend an INR level of 2.5 to 3.5 - so if its in this range I just keep taking the same doseage. If there is a big range difference (over or under) I call my coumadin clinic and they call me back and give me a suggestion for coumadin doseage adjustments.
www.valvereplacement.com has much information to offer.
I know many things can change your INR levels - green vegetables, exercise, drinks and over the counter drugs.. There is much to learn. But the people on the web site have been very informative and over the past few mos - I've gotten my INR levels fairly stabile. Being 'consistent' in whatever you eat or drink or exercise is the trick. Motrin can effect your level to.
Believe me I'm not exactly excited about this coumadin drug either - I hate it some days. But I try to remind myself how awful I felt before my surgery. I try to remember this coumadin can be 'adjusted' to my lifestyle and I don't have to change my lifestyle.
As with any drug - I hate taking them and would rather find a natural remedy - but as you know its not possible. Vitamins I think can effect the INR levels too - I think. The one thing I won't do is take those 'lovenox' shots.. I draw the limit on those needles. I hate needles and I won't let anyone give me a shot in the stomach. I had one years ago and it was very painful. I have never forgotten it..
I think the valve replacement web site has some positive outlooks on this drug. Not that is perfect - but its not quite as bad if you gain information on it and your able to stick with a pretty consistent lifestyle.
By the way, I love reading your posts.. Your a very sweet and nice lady.. I learn alot from you too.
I got my machine from a local 'coumadin nurse' who started up her own business of selling them. But on the www.valvereplacement.com board at the top of the site you will see: QAS - Quality Assurance Service - they sell the machines and test kits. I get my testing kits from them even though I did not buy my machine from them. I think they offer several different types of machines.. They are out of Florida - they ship them on 'ice' and I refridgerate them. Your right there are not alot of manufacturers for this product or test kits. On the valvereplacement web click on the "FORUM" category - then you'll find a 'COUMADIN' category and there's substanial amount of information. Actually even a QAS person posts on there (Lance) sometimes. They are a very nice people and the company has been very helpful. They were 'OUT OF NETWORK' from my insurance company 'network' and I had to go through quite an ordeal to get my insurance to approve them as 'network' - but because no in their network provided the 'kits' - then they allowed me to go on the outside network. Took about 6 mos all total to get my machine and kits.. and it was a pain in the butt - but well worth it..
I find QAS to be very user friendly.. (they work with you). try this web site: www.HomeTestMed.com
I am a 30yrs old female with a mitral valve regurgitation problem. The problem started when I was 12 and I was taking Bezantine penicillin injection every month until I was 25yrs old. It has now been a few years since I stopped taking the injection and I started feeling shortness of breath recently. I saw my cardiologist and he put me on Diuretic for about 3 months last October but said that there was no need to do surgery at this stage as I am not seriously sick. His philiosophy is that-- only have surgery when the situation warrants it. But at a friends advice, I saw another cardiologist last week. He did TEE and recommended that I get the Mitral valve repaired soon. Now I am in great dilemma. One cardiologist say why do it at such a young age when the other one says get it repaired soon and live a healthy life. I am planning to consult another cardiologist but I am pretty much convinced that I should do the surgery soon assuming that the valve is repairable. If replacement is the option, I would prefer to wait a few more years.
I only heard the surgery new last Friday and I am now trying to find a good surgeon in the Washington DC metropolitan area. Do you know a good Mitral valve surgeon in this area?
Many thanks for your suggestions.
found out today that I need to have surgery to repair
I don't know if there is a protocol for making referrals on this site so if you want to leave your e-mail address I will forward my surgeons name. He is in Philadelphia region...about 3 hour drive from D.C. Well worth the trip.
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