New Member will need Mitral Surgery Terrified

[Melanie Gaines]

Hi Everyone:

I am a brand new member. I just found out this year that I have severe mitral regurgitation due to a classic floppy mitral valve.

I never even knew I had a heart murmur and I am 48 years old. Have been suffering from all the common symptoms of severe anxiety, sleeplessness, palpitations, etc...for years. Other than that, I am relatively aymptomatic at present.

An echo was done, followed by a holter monitor and finally a TEE was ordered.

The conclusion is a 3+ to 4 level of severe regurgitation. A powerful regurgitation spray. A minimally enlarged large left atrium. Over 100 episodes of irregular heart beats, some of which are originated from the wrong portion of my heart (??)

I was referred to a local surgeon, who is supposed to be exceptional at valves. He did not feel it was repairable. I hear it has thickened redundant tissue. He is suggested 6 month followups and replacement with mechanical valve when necessary.

I had heard about Dr. Gammie at UMM, and coincidentally, my cardiologist knows him personally. She sent my records down to him for his review and he feels that he can repair this valve, and minimally invasively. He wants to do this as soon as possible.

Obviously I am terrified. I didn't even know about this condition and finding out it's so bad is really scary.

My mother has moderatley severe regurg at 74 and her echo is very similar to mine. She has lived with this all her life and thinks I am overreacting, so that's no help to me. At 74 she refuses to even see a cardiologist even after her family doctor recommended it.

My father died in May on the operating table undergoing emergency bypass surgery. Granted his heart was failing, but that certainly isn't a comforting thought.

And of, course, my husband and other close friends really have no idea what to say. I am really on my own, completely dependent on the advice of these doctors, and I don't know what to do.

I'd like to just forget about it, but it's not going away. I know it's probably going to get a lot worse. I will have another follow-up in January to check the progress.

I'm glad I found this website.

Thank you for your anticipated support,
Melanie

 

[Georgia]

Hi, Melanie! Welcome to the site. Two years ago I was in the same boat as you - blind-sided, gob-smacked, sure everyone was wrong and I didn't need open heart surgery because, altho I knew about the mitral valve prolapse for years, it was "benign" and "I shouldn't worry about it" and blah blah blah.

And I had the surgery and I'm fine and feel like me and not like 80 years old and I can breathe really well.

I'm sorry you've had such a shock. Others will be along soon (or after work) to welcome you. My suggestion is you go through this site and read and study. There's much that will frighten you, but much more that'll enlighten you. You'll work through the fear and be glad you're armed with good, solid information.

What you'll find here from our vast experience is that this will not go away; and the sooner you have surgery the less damage you'll have to your heart. Your valve MUST be repaired; your goal should be to see a surgeon to preserve your heart function, which can go downhill really fast with a bad valve. It sounds to me like you want to run, not walk, to see Dr. Gammie. Believe me - it can make a huge difference in your quality of life post-surgically if you get the repair done before you have damage to your heart and other valves.

Incidentally, you want to discuss a replacement valve with your surgeon even if he says it can be repaired; my surgeon said the same thing and because I hadn't found this site, I didn't know that saying it doesn't make it so.

Best of luck, hang in there, we're your friends and we've all been where you are.

 

[TomS]

Take baby steps

Take baby steps

Melanie,
I'm also 48 and just had my aortic valve replaced three weeks ago. I found out about it in 1999 and had been tracking it since. I had no symptoms until going into afib in May, at that time they did the TEE and also found an enlarged aortic root which got me to the table.
My advice is as follows. First, do the homework to find the best surgeons and cardiologists in your area and call them. Go and see a couple of cardiologists to get other opinions. Ask the surgeons how many of these that they've done and what their mortality rate is. Get their opinions on whether or not surgery is needed right now, or not.
I was told by some of the best cardiologists that they don't recommend valve surgery unless there are changes the heart (or about to be), or you have clear symptoms.
If worse comes to worse don't panic, you actually can and will survive it. Like you, my Dad didn't make it through OHS, but there is a lot to be said for going through it an a (relatively) young age.
Best of luck,
Tom

Hi Everyone:

I am a brand new member. I just found out this year that I have severe mitral regurgitation due to a classic floppy mitral valve.

I never even knew I had a heart murmur and I am 48 years old. Have been suffering from all the common symptoms of severe anxiety, sleeplessness, palpitations, etc...for years. Other than that, I am relatively aymptomatic at present.

An echo was done, followed by a holter monitor and finally a TEE was ordered.

The conclusion is a 3+ to 4 level of severe regurgitation. A powerful regurgitation spray. A minimally enlarged large left atrium. Over 100 episodes of irregular heart beats, some of which are originated from the wrong portion of my heart (??)

I was referred to a local surgeon, who is supposed to be exceptional at valves. He did not feel it was repairable. I hear it has thickened redundant tissue. He is suggested 6 month followups and replacement with mechanical valve when necessary.

I had heard about Dr. Gammie at UMM, and coincidentally, my cardiologist knows him personally. She sent my records down to him for his review and he feels that he can repair this valve, and minimally invasively. He wants to do this as soon as possible.

Obviously I am terrified. I didn't even know about this condition and finding out it's so bad is really scary.

My mother has moderatley severe regurg at 74 and her echo is very similar to mine. She has lived with this all her life and thinks I am overreacting, so that's no help to me. At 74 she refuses to even see a cardiologist even after her family doctor recommended it.

My father died in May on the operating table undergoing emergency bypass surgery. Granted his heart was failing, but that certainly isn't a comforting thought.

And of, course, my husband and other close friends really have no idea what to say. I am really on my own, completely dependent on the advice of these doctors, and I don't know what to do.

I'd like to just forget about it, but it's not going away. I know it's probably going to get a lot worse. I will have another follow-up in January to check the progress.

I'm glad I found this website.

Thank you for your anticipated support,
Melanie

 

[ALCapshaw2]

Welcome to our site Melanie!

It is perfectly NORMAL to be scared out of your wits after hearing that you will need Open Heart Surgery to repair your failing heart valve.

The GOOD NEWS is that valve replacement surgery is a highly refined art with an exceptionally high success rate (98%) for first time patients under age 60 when performed by EXPERIENCED surgeons at hospitals that do Valve Surgery on a high volume basis.

Valve REPAIR requires extra training so you should seek out a surgeon who has LOTS of EXPERIENCE with that procedure (and a good track record). Just-in-case, you should also discuss a back up plan by selecting a second (and maybe even third) choice for a REPLACEMENT Valve.

There has been considerable discussion of Mechanical versus Tissue Valves in the Valve Selection FORUM. EVERY valve has it's positive and negative attributes. Most people end up selecting the valve type whose negative attributes they can best live with.

Mechanical Valves 'should last forever' but require lifetime anti-coagulation with Coumadin to prevent clot formation. Tissue Valves (usually) do NOT require anti-coagulation but wear out after 10 to 20 years depending on type and the patient's age at the time of implantation.

OHS is MAJOR SURGERY, but is not as bad as most expect. PAIN is very well controlled and most patients report only varying degrees of 'discomfort'. You WILL be very weak for the first couple of weeks and gradually regain your strength over the next several weeks. Most patients can return to work after 6 to 8 weeks.

Read through the Pre-surgery and Post-Surgery Forums for LOTS of information on what to expect before and after surgery. Remember, MOST of our 1200 members represent SURVIVORS who have all 'been there - done that' and are still here to talk about it.

I am a believer in the philosophy that "Sooner is Better" when it comes to valve surgery. Once the heart begins to enlarge, there is a point at which there is PERMANENT DAMAGE to the heart muscle / walls. Most surgeons prefer to operate BEFORE that point is reached to provide the best surgical outcome.

Please do follow up with Surgical Opinions on when to get your valve FIXED. As you are already aware, medications only treat symptoms and will NOT make your valve disease go away.

Best wishes,

'AL Capshaw'

 

[Mary]

Melanie,

I'm glad you found the group! You now have a place to share your thoughts, concerns, and questions. We've all been there and done that!

Once again, welcome, and post away!

 

[Wise]

Welcome Melanie. I'm a member of a Mitral Valve Prolapse Syndrome yahoo group; maybe the same one. I'm thankful for that group, as well as this website. You have so much at your disposal and so much to gain by taking the time to read as much as you can here. The members are great and willing to help just as those at my yahoo group. Try out the search function and you'll be surprised at the amount of information you can tap into. I have known about my MVP for over 20 years, but now know that many of my "symptoms" are probably attributable to MVPS. MVPS can certainly contribute to anxiety and the more you learn about your mitral valve condition the more ammo you have against that nasty anxiety. On top of it all, you'll be better equipped to face surgery when the time comes. Best wishes,

Wise

 

[twinmaker]

Welcome Melanie! I had my mitral valve replaced 24 years ago because of mitral stenosis from undiagnosed Rheumatic Fever. I had known about my heart murmur for years and was told that it was a "functional murmur" but then started having some symptoms like shortness of breath and "wham", I'm told that my valve needs to be replaced. I can relate to your shock and surprise. Long story short...back when I first found out that I had a problem there were no computers as we know them now and the only information I could get my hands on was from my old nursing books from college and a little info from the library plus what the doctors told me. Anyway, this site is "heaven sent". There are so many knowledgable people on here and they are so supportive. Even after all these years of dealing with my heart problem, I feel like I learn something new everyday here! Ask all the questions you can think of, and do your homework. Believe me, that alone will help you feel better. Linda

 

[Christina L]

Melanie,

Melanie,

I had mitral valve repair almost two years ago by Dr. Cosgrove at the Cleveland Clinic. If you want to PM me on this site with any questions you might have, I would be happy to help you.

I would definitely go the route of repair if you can, but you do need to decide on a tissue valve or mechanical if your valve needs to be replaced.

My valve was very "messy" - both leaflets prolapsed and redundant, thickened. I had no broken chordae. So far, so good - my echos are showing no regurgitation and my cardiologist can hear absolutely no murmur.

My valve, also, was VERY loud pre surgery. My cardiologist had me listen to my own heart and I listened to the nurse's heart - WOW!! Mine sounded like our dishwasher. Now it is lub-dub and quiet, just like it should be.

I feel really, really good. Still get frightened at times of the what-if's, but I try to keep busy-busy and that helps. My cardiologist told me that he thinks my repair will last my lifetime and I try to remember those words every time I start to worry.

Please E-mail with any questions. This site was a Godsend to me. I hope it will be for you also.

Christina L.

 

[jeffp]

Best wishes to you Melanie. I had MVR repair about 6 months ago. Had mild murmur before since childhood, and then had sudden episode of SOB and coughing when the valve cordae tore and the valve went flailing. I'm same age as you. Was in pretty bad shape after hoping it was something else for a few days. Had rather urgently needed surgery after they got me stabilized and had the valve repaired. The TEE during the surgery showed the repaired valve was interfereing with the aortic valve and had to be reoperated on for a replacement. The surgery (post op really - of course I was 110% out for the surgery) was less painful than I expected - sore yes, screaming in pain - no. The worst of the whole thing healing was you're really really weak and slow for a while and will need some family help and support. You can't do it alone. You should consider doing something sooner rather than later as things can go sour quickly. God luck and do well.

 

[BillCobit]

Hi Melanie

Welcome. From the info you've provided, it sounds like you are indeed in the zone for surgical intervention.

Like Christina, my mitral valve was in pretty bad shape - it was also deemed unrepairable by local "expert" I was referred to. I got a second opinion at the Cleveland Clinic, where probability of repair was estimated to be 80%. I had the procedure done at Cleveland, had a successful repair, and am now doing things that even most heart-healthy people can't contemplate.

I understand your anxiety under the circumstances. Ask lots of questions at this forum and check out some of the references as well. The more you learn about your condition and your options, the better you'll feel about your situation - and most importantly, you'll make better choices.

The surgery itself is no fun, but as Jeff indicates, it not as bad as you might think.


Hang in there,

 

[samiam]

Welcome to the best place you could have found. I had my mitral valve replaced by a tissue valve June 29. The Cleveland Clinic doctor wanted to repair it, but when he actually eyeballed it, he had to replace it. I had torn chords, flapping leaflets. They were quite surprised I had no symptoms.

Read the pre-surgery posts about how to get ready (Get a nice new recliner is the biggie!). Make sure you read the valve selection forum for pro's and cons for the different valves and what the negatives are for each, as Al mentioned. I went with tissue because the doctor feels it will last at least 25 years, and imagine where heart valve surgery will be then! I personally didn't want to get involved with the coumadin routine. It's a personal choice.

Make sure you have a surgeon who can do this in his/her sleep. You don't want a novice in your heart.

Get a trusted companion who will be with you in the hospital and for the next week or two after. Expect to be out of bed by the day after surgery, believe it or not.

Good Luck!!!!

 

[hiker]

I am sure you will be as amazed by the valvers and this website as I have been for the last week. I had mitral valve repair ten years ago. I didn't have time to be scared for very long since I found out I had a problem and needed surgery at the same time. I was just lucky that I found a good surgeon in Nashville. Post surgery is a much better place to be. Pain management and surgical techniques are much improved. I was able to return to the activities that I loved fairly quickly. I couldn't do the activities like Bill (see his last amazing accomplishment on active lifestyle) but I have also accomplished some of my own challenges. Learning the choices you have is helpful and sometimes confusing because there are so many. The most important choice is the selection of the cardiologist and surgeon. Then you can transfer some of the responsibility for choices to them. This site will give you info to ask lots of questions.

 

[OldManEmu]

Melanie welcome aboard. It can be some what of a shock to find out that your facing heart surgery. The good news is that the surgery has a very high success rate >98% in people under 60 years. All the people on this site are survivors or close to survivors. I noted your comment that you would just like to forget it, however this is not an option. Look on the positive side your valve problem has been found before your heart has sustained any serious damage and you may even be able to have the valve repaired rather than replaced. Before you meet the surgeon I suggest you write yourself a list of all the questions/issues you want to discuss with him. Take this list along to your meeting with him. This way you will not forget to ask any questions. I also suggest you write his answers down so you can go over them again if necessary. You?re not on your own all the people here are available to support you.

 

[Melanie Gaines]

Thank you Everyone for your Support

Thank you Everyone for your Support

Hi Everyone:

Honestly, reading your comments has brought tears to my eyes. I feel so alone with this and am doing tons of research. I agree that the surgeon's skill is a huge predictor of failure or success in repair. I want to make sure that the surgeon I choose will do everything possible to fix the valve. If it's not fixable then at least I gave it the best chance I could and I won't have regrets later. I have heard there are many surgeons that don't feel confident about fixing a severely redundant tissue valve like what I am told I have and it is much easier for them to replace it.

The first surgeon I spoke with gave the valve a 70% success rate or at least that's what he told me. My cardiologist said that he told her it was unlikely that he could fix it. Dr. Gammie, out of Baltimore, looks at the same TEE and feels confident he can fix it. Now Dr. Chawla, out of Hartford CT, was the first surgeon and according to my doctor he is one of the best valve guys in the state. He has been doing various valve surgeries for probably 20 years +, however, I still have to wonder if the art of repair is something that requires a speciality and a strong belief that would cause one doctor to attempt it more than another. I just don't know. Dr. Gammie is much younger, but seems to believe more in preservation of the valve, whenever possible.

Does anyone know of any good surgeons in Connecticut that have a high repair rate? Where could I obtain this information? Also, is it a good idea to consult with another cardiologist. My current doctor says the condition is serious with a chance of sudden death, however, the first surgeon I spoke with didn't seem as concerned.

Also, my mother's mother had a major clot stroke at age 55 and died at age 57 in a nursing home. There are conflicting stories as to whether she had a heart murmur, but she suffered from severe migraines and anxiety and passed out while doing manual labor in a field. It has always seemed strange to me, and since my mother definitely has a severe regurg problem, it is troubling that this could be quite a problematic heriditary gene.

Once again, thank you all so much. I need to be absolutely positive before I take any action that I am doing the right thing, so I appreciate all the feedback greatly,

Melanie

 

[ALCapshaw2]

Keep up the good work and research Melanie. You are already zeroing in on what you need to know and asking the right questions. After interviewing a number of surgeons, most people find a clear preference and comfort level tends to rise above the confusion.

My 'understanding' is that the risk of 'sudden death' is greater with the Aortic Valve than with the Mitral Valve. This should be one of the questions on your interview list.

As you are learning, Valve REPAIR is more technically challenging and you may want to widen your scope to include some of the MAJOR Heart Centers in Boston or New York, or the Cleveland Clinic which is the #1 rated Heart Hospital. Cleveland Clinic has an on-line 'second opinion' service that you may want to explore. It may help to start a new thread asking for Mitral Valve Surgeon recommendations in the North East.

Hopefully some of our members who are more familiar with Mitral Repair Surgeons in the North East will provide additional recommendations and /or contact information.

Keep up the good work.

'AL Capshaw'

 

[Ross]

I went with tissue because the doctor feels it will last at least 25 years, and imagine where heart valve surgery will be then! I personally didn't want to get involved with the coumadin routine. It's a personal choice.

Be careful with these statements. Just because a Doctor "Feels" you'll get 25 years, doesn't mean that you will. Please don't make the mistake of thinking that there are going to be major leaps and bounds in technology by then when basing your decisions on just these things. You have to deal with today and what we know today, tomorrow may never come.

No one wants to be on Coumadin, but if it means a chance at possibly never having another operation, you just take your Coumadin and be as happy as possible. My first op was a nightmare, so I had no problem going with Coumadin and a mechanical valve. I don't want to have another op if it can be helped, but I do understand that there are no guarantees either way. Through in one other factor for consideration, the ever present possibility of developing Afib post op. If you and it's chronic, your going to be on Coumadin anyhow.