Did not have surgery on Jan 8

[Harmony]

I really dont want to talk about why I changed my mind at last minute. Many things I had read and heard made me think this type of surgery could be dangerous. I am a older woman past 60. I was to have a minimal invasive repair. I read and heard Mitral Valve repairs often do not last very long and they often leak. I have very severe regurg. I also have moderate/severe posterior annulus calcification. I understand this could cause problems with a repair. I am really confused. Have most of the people here had Mitral Valve repairs or replacements. A surgeon I saw today (recommended by my Cardio) wants to do a valve replacement with a Bovine valve and cut the sternum from top to bottom. He says this is a cleaner and faster way. Faster turned me off. I am really confused. Can you give me some insight about which way to go Is repair safe or not. Is replace better. Cutting the sternum really scares me. I think would be very painful. How would I ever wear a bra again. Thank You

 

[Bina]

Harmony, don't feel bad about changing your mind....if I would have had the strength to run away, I would have run for the hills
One of my hospital room mates was a senior gentleman in for multiple bypasses and having the full cut sternum plus the vein taken from his leg. I can honestly tell you that he recovered much better than I did. Many times age is not such a big factor.

If your mitral is needing work, don't delay too long....
I would not be shy to take the bovine valve with the full sternum cut.
Choose a surgeon who has lots of experience with whatever procedure you choose to do.
Many people have great repairs that have held up nicely. Only your surgeon and cardio can best judge what you need.
The sternum heals, believe me. I am very small and kind of frail, and I've healed.

Oh, and about the bra.....I ditched mine a long time ago.
Otherwise, there are many bras with nice fabric covered elastic that are actually quite comfortable.
Harmony, I hope that you can come to a conclusion, have the surgey, and live a very long good life.

 

[kfay]

Harmony, I'm sorry that you are having such a tough time with this although I am sure you are not the first. I know there are several people on here who had this surgery past 60. It is a very survivable surgery. It was my second OHS and my surgeon gave me 97-98% of success. He said if I waited until I was in trouble, that number would drop to around 70% of success for my issues. I will be thrilled to live long enough to need OHS #3 anywhere between age 55-60 and then a fourth at around age 75-80.

The decision on whether to have a repair (if it is possible) versus a replacement, is a personal choice that really should be made by you with guidance by your surgeon. I think I have read cases on here of just about everything that can happen, both good and bad. Yes, some repairs fail. Some don't. Some tissue valves fail earlier rather than later. Some don't. Some mechanical valves even fail. Most don't. You can look for the worst in every situation or, you can seek out information from the best that you can find in the field, and then make the best decision for you based on that information. You won't know what the outcome of yours will be if you do nothing, but alot of us have been told what would have happened to us if we had done nothing.

As for the practical issues, yes, you will be able to wear a bra again. Some of us found them more comfortable sooner rather than later. It took about 3-4 weeks before it felt ok for long stretches for me. I had a sternotomy both times... I didn't have a tremendous amount of pain from that. My back and shoulder hurt much worse. Minimally invasive may be prettier but it doesn't mean no pain. I also wouldn't worry about the surgeon using the term faster. I think they have a bigger and better view of the heart with a sternotomy, so in that sense, it probably does make the surgery a little "faster".

If your valve is that bad, you need to do this. You CAN do this. Maybe at this point it would be helpful to speak to a psychologist who specializes in helping people deal with medical issues.

Kim

 

[Harmony]

Kim Its not my age I worry about. I still look very good dont know why guess stress agrees with me. I guess it sounds that way. The surgeon I saw today is in the same hospital as my cardio. Before he said faster he was talking about the whole operation. He thought doing a repair would take 4 hours and a replacement 6 hours. It was not cutting the sternum that will take a long time but having to remove the calcium from my vave as I understand there is a lot of it. My valve has bad regurg. but my angiogram shows no CAD. it measures less than 40% which the told me is none.I have no sob. I had said to the surgeon every morning I wake up sweaty what is that. He told me you have CHF. I said I have been seeing the Cardio for 10 years takes echos every 6 months and EKG's once a month he never said I had anything wrong. So he asked do you have SOB, no I dont. So he said you have nothing. He was a hard sell Surgeon. I have been to 4 surgeons and they all seem to be like salesman trying to sell a product. It seems to be that way in New York hope its not like that elswhere. I need to have this valve fixed then my PH will go away. I know something bad will happen if it is not fixed.

 

[Lionheart]

He says this is a cleaner and faster way. Faster turned me off.
I am really confused.
Cutting the sternum really scares me. I think would be very painful.
How would I ever wear a bra again. Thank You

Harmony,
A faster surgery is a good thing because you then spend less time on the by-pass machine.

If you are confused I suggest that you consider a second or third opinion from a doctor willing to take the time to answer your questions. You can also get a phone or internet "second opinion and consult" from places like Cleveland Clinic.

I too was scared about having my sternum cut but after I had it done I found out that it really did not hurt that much and it has healed up pretty well.

As far as the bra, remember Women's lib?

I wish you the best.
Take care,
John

 

[Jkm7]

Harmony,

My surgeon hoped to do a repair for my mitral valve but we agreed prior to the surgery that he would implant a bovine tissue valve in the event he could not do a good repair. He spent a long time working on the repair, got to a point he knew it was not going to be a good one and went ahead with the replacement. My surgery was a little over 7 hours. I have to say I was a little relieved when I woke and learned he had replaced my valve. My worst nightmare in advance of surgery was a failed repair necessitating a third OHS.

Both times my sternum was opened. My surgeon began discussion with me about minimally invasive if that is what I wanted but I preferred having my sternum opened. It was my instinct to give him plenty of room to work. I am coming up to a year post op and this time I healed so well and I can actually again sleep on my stomach. I could not after my first surgery though it was four years between them. He opened me exactly along the line of my first scar and both have healed so beautifully I wear low cut and strapless and any clothing I wish. While there is a fine line, it's amazing to me how 'unobvious' it is considering I was opened twice along the exact line.

As to wearing a bra, I need one. I wear the same underwires I have worn all my adult life. Immediately post op, I wore a stretchy pull over lightweight sports style bra until enough healing permitted a more substantial garment. (I once sent you a link for where to buy them.) Now I have absolutely no discomfort from it at all.


Hope you find a surgeon you trust and who can convince you of the absolute need for you to have surgery. The right surgeon is out there. You just have to find the one that gives you the confidence and trust none have yet provided. Good luck.

 

[abbanabba]

Hi Harmony, well, like you said..

I know something bad will happen if it is not fixed.

Please, please, please believe me when I tell you our fears of this surgery are more often than not FAR worse than the reality!! Honest!! And at the end of the day, the surgery is a far better option than the alternative!

Yes - there's a lot of discomfort while recovering from a sternotomy (I won't lie to you), but it's generally very well managed by hospital staff and your GP once you've left hospital. I had my surgery 6 weeks ago today - had my first rehab session, and have happily been wearing a bra all day. I was able to start again about week 3 and while I would often only wear one if I was going out, it gets less uncomfortable all the time (and there's a lot of choice out there!). Meanwhile, I really am beginning to feel SOOOOOOO much better - it's been worth the last 6 weeks!

I don't really have any advice on the repair vs replacement since I didn't have the same problem, but certainly seek a second or third option and discuss all the options with your surgeon/s. Ask why they may favour one option over the other and what the projected outcomes are for each.

I know it's scary, but we're all here to help you through this. You CAN do this!!!!


A x

 

[ALCapshaw2]

Harmony -

I'm wondering exactly WHAT you read or heard (and from whom) that made you think that Valve Surgery is Dangerous. Note that people who have NOT been through OHS or are not Medical Professionals are CLUELESS about the reality of Valve Replacement (or Repair) Surgery.

YES, it is Major Surgery, but when done by an experienced Valve Surgeon, the Risks are extremely Low (1% morbidity, 1% mortality) which is WAY better than your chances of living a long life if you do NOTHING.

I've had 2 full sternotomies and do NOT remember much sternum pain, mostly just some 'discomfort'. Muscle Pain in the long back muscles after #2 was *intense* because of how my arms were pulled out during surgery but was relieved quickly by MASSAGE (WAY better than Pain Pills).

ANY Repair Surgeon will know if his repair 'worked' or not, and if it did not, he will almost certainly do a replacement 'on the spot'.

It would be wise for you to write down your Fears and discuss them with the surgeon(s) you interview. Do NOT let them rush you out before you get answers to all of your questions.

'AL Capshaw'

 

[Harmony]

I have been to 4 surgeons 2 recently and 2 BA. I was hit by a car almost 3 years ago while walking on sidewalk and was very hurt. Could not walk for almost a year. So I divided my life in 2 parts BA before accident and aa after accident this way I dont have to think about why my legs are deformed. Sounds crazy I know but it was a dificult time. The 2 recent surgeons one I almost let operate but did not. He wants to do a minimal invasive and cut under right side which is what I wanted, However I was told by Surgeon today that probaby will not work for me as I have large calcium deposits on Mitral Vale and scraping it off would take too long. Also I should have a bovine valve as a repaired valve would leak after being fixed. I am very confused about what to do. The doctors in New York are not great. They talk to you as if they are runing a valve fixing store. Also you have to find someone who takes your insurance or they will not see you. The Surgeon I saw today was not great. He was not board certified and only wanted to do a bovine replacement and sternum cut down the middle. While first Surgeon I saw will do a minimal invasive and cut under breast. I am really confused.I will call the first doctor tomorrow from group AA I doubt he will talk to me. Surgeons in New York do not talk to uou on the phone either.

 

[Harmony]

felt it was faster to do a rknow I would have a l

 

[Curtsmum]

My son as had 2 Mitral valve repairs and his valve is leaking again but we found out that he as a rare defect and was told after his second surgery that it would leak again. After his first repair it lasted 8 years before needing another surgery.
It will be different for everyone.
The hospital left my son a little too late and he ended up being put on medication, so it really is better to get it over and done.
Goodluck in finding a surgeon you are happy with. Very best wishes.

 

[ALCapshaw2]

I know there are some GOOD SURGEONS in New York.

Dr. Paul Stelzer comes to mind. He is the most prolific Ross Procedure Surgeon in the USA to the best of my knowledge and is known for talking to his patients extensively before surgery to answer ALL of their questions.

Dr. Mehemet Oz is another well known NY Surgeon.

Hopefully other VR members can give you some other names to contact.

YES, a full sternotomy is the fastest and easiest approach for surgeons to take. It also gives them Full Visual and Physical Access to the heart which is a plus. I've not heard of anyone being housebound for a Year after VR surgery.

Minimally invasive techniques, in particular a thoracotomy through the ribs (and under the breast) is also a good option for the Mitral Valve. It can be more 'uncomfortable' but is known to heal faster than a sternotomy. Dr. Michael Petracek at Vanderbilt University in Nashville, TN specializes in that procedure and performs around 200 per year. I don't know if he would be open to a telephone consult.

One of the mantra's here on VR.com is to find a surgeon who has LOTS of Experience doing the procedure YOU need. Your post makes it clear that you are not yet comfortable with the ones you have met. You may want to discuss this with your Cardiologist and ask if he has any more (and better) recommendations. You may even want to start a New Thread asking for the names of good Mitral Valve Surgeons in the NY area.

The Bovine Pericardial Tissue Valve has a proven record of longevity (90% freedom from explant in patients over age 60 or 65, I forgot which). IF your parents lived well into their 80's you may want something that lasts longer.

Mechanical Valves offer the lowest rate of re-operation.
See www.heartvalvechoice.com and www.onxvalves.com for the 'latest and greatest' in mechanical valve technology.

Best Wishes for your quest!

'AL Capshaw'

 

[Adrienne]

One of our members, Sparklette77, just had a mitral valve repair in NYC done by Dr. Adams. You should get in touch with her.

I also want to stress the fact that you should get a surgeon who is very experienced in mitral valve repair. My annulus was also very, very calcified (because of endocarditis) so the surgeon did a sternotomy. When he was in there, he also saw that the P1 scallop of the posterior leaflet was too calcified to do the usual type of repair where they cut away part of the valve and put the two other ends together and then put a ring on. Because he was so experienced, he was able to pull down the posterior leaflet with neo-cordae (replacing two that were ruptured) and then put on the ring. It's been over 3 years, and so far so good.

In any case, you have absolutely got to do SOMETHING!!!

 

[Ross]

Hon listen to me please, your fear is keeping you from getting fixed and yes, if you don't do it and soon, your not going to be here to worry about anything. The longer you put this off, the more damage is being done and chances for a full recovery are starting to decline.

The surgery is not so terrible that you cannot do it. Sure there is pain involved, but it's nothing like what your mind is making it out to be. My hip replacement hurt far far worse then having my sternum cut in half.

NY has many great heart surgeons. Maybe not in your particular area, but I'm sure someone is close by. Please don't delay this any longer. Please.

 

[netmiff]

The worst parts of OHS are the fear of the surgery, and the waiting. And the longer you wait, the worse shape your heart gets into. I was only 52, and my surgeon would not recommend waiting more than 6 months, and after that the chances of me dropping dead increased dramatically.

I can understand your worries if you have had previous medical problems that have left you incapicated, but seriously, you should only be limited for a few weeks. I was making lunches and stuffs a week after surgery, NOT a week after being released. You can't lift anything heavy (like a big cooking pot or a heavy casserole or a load of wet laundry) for a few months, but plan around that one and you should be fine.

Also, there are drugs out there that will help the anxiety thing - and even if you don't like taking that kind of thing, it would only be temporary, and if it gets you into and through surgery, it could save your life. One thing that helped me was the day I realised that our heart centre probably does more heart surgery in a week than our local hospital does tonsils and eppendixes in a year! This all routine to them, if not to us! Loads and loads of people go through this every day, and most of them make it through no problem.


As for wearing a bra, I wore sports bras that I got in Walmart, regular Fruit of the Loom cheap things, I think they were about $12 for 3, for a few weeks. I am big-busted (no comments, Ross et al!) I really didn't like the "uniboob" look, so I went back to my underwire ones about a month after surgery, and I had the full sternum cut.

No matter who you choose as surgeon, if you do decide to go with repair, you should also have a plan B in place, because they can get in there and realise that a repair is not going to do a good job.

 

[ponytaila1a]

Harmony...I was so glad to see your thread...although I am so sorry that you are still suffering with the decision. You had been on my mind since the 8th. The people on this site give such great suport....just keep asking and posting. You are in my prayers. Jennifer

 

[WayneGM]

Any surgery has it's danagers but not have the surgery could be even more dangerous. Although everyone's medical situation is different, generally speaking heart valve repair or replacement is faily routine as major surgeries like OHS go. Whether the valve can be repaired or should be replaced is a matter of the damage and condition of the patient. I had a mitral valve repair and it's holding up fine, although it's only been three years. From what I've read, if the repair fails it usually does so fairly quickly after the surgery so I figure the longer it lasts the more likely it will hold.

As far as pain, etc....I was really surprised how little pain there was. The pain meds work wonders. I was really expecting the worse and post-op I found myself thinking "This is it?". It wasn't nearly as bad as I expected.

 

[Jkm7]

My cardio told me there is a point of no return. If you wait so long that it gets so bad, it's too late and a surgeon can no longer help.

 

[briansmom]

You may have some Post Traumatic Stress from your accident. Now they want you to VOLUNTARILY submit to another surgery! Are they kidding!

My son's heart problems were not caught in time so he has permanent heart damage and unless stem cell research saves him he will face a heart transplant at some time in his future. Please don't delay too long. Find a surgeon you feel comfortable with - that is the right one for you. I have not read a lot on this site with Bra problems so I think that you will be okay on that.

Keep searching for your surgeon and please keep us posted.

 

[Lynlw]

Harmony, When you were going to have the surgery before your accident did you have PH then? or is it something that started more recently? It could be a sign your heart is becoming damaged.