Surgery Decision

[TomG]

Hi there all,

I am new to this message board and like to know how people deal with trying to make the right decision in regards to major OHS. I am a male age 55 my name is Tom and I have servere MVP with a class 4 Barlow's disease and just last week I went to interview my first cardiac surgeon as advised bt my cardiologist and I was all set to try and talk to him about getting the OHS within six months or so as I asked my cardiologist what would he do if he was me and he said he would get it done within the next year, so I was all geared up to see if I can get it done a little sooner like with six or seven months and when I asked the surgeon that same question what would he do if he was me he said I would get it done no later then the first or second week of this coming September, so that was a huge SHOCK to me and on the way home and even now is hard to deal with that response. He yold me he rather would repair it if at all possible and he said he can say it will be 80% possible successful repair. He said with how serevere my Barlow's disease is that it will be a very difficult repair and a big challenge for him. He told me if I decide to wait a few months or longer that things can and will more then likely get a lot worse, basicly he said the sooner the better before any more complications develop. How do people deal with this kind of decision, I have done tons and tons of research on my condition and yes I had so many tests and I am tested out. (haha) My mind was all set for one way now it is trying to deal with this new information from the surgeon. He also agreed with me and my cardiologist that I have to have the full OHS (Sterumony)(spelling) as I call it the traditional OHS do to the difficulty of the repair. I know I will have to have it done at one point but how does one decide as to went? That is my one big question.

 

[ESF]

Sometimes things move along faster than we anticipate, which means we're no longer thinking about getting on the roller-coaster but actually on it.

I knew that repair/replacement was a possibility since last spring, and this December, my cardiologist said it was time, I was showing symptoms. They don't want to wait too long because then the heart can be damaged. So my timeline was: December 15, the cardiologist said now; January 4, I met with the surgeon; February 16, I had my surgery (OHS).

I felt as if the decision had been taken out of my hands, which was a good thing, and although there was a lot of pre-op anxiety, the fact that things moved along quickly was better for me than waiting for months.

If it's any consolation, having your surgery done in early September means that the weather will still be good: walking is very important after you get home from the hospital, and having good weather means that you can get out and walk every day and get your recovery underway.

Good luck!

 

[Jkm7]

My cardio had been watching my mitral valve for about three years and when I least expected it, he told me it was 'time'. From that appointment until surgery was a month. By the time my surgery date arrived, I was so emotionally ready for it.

For many of us, the wait is the worst part of the whole OHS journey.
If your cardio and surgeon are in agreement you will require this surgery in the near future, unless you have a very serious reason for waiting, what is the advantage?

We have a saying here that often proves true: The worse your valve gets, the faster it gets worse.

Your anxiety and confusion and hesitation are all very common among us. Most of us feel it in one way or another.
Best wishes.

 

[dick0236]

I know I will have to have it done at one point but how does one decide as to went? That is my one big question.

Once you accept the need for corrective surgery....why wait? Most peopl will tell you that the waiting for surgery is worse than the surgery itself. Your condition, from what you posted, seems unlikely to get better over time. I was also a procrastinator and stalled my docs for about 10 months. They finally got rough with me and began giving me disturbing odds if I didn't correct the problem. I finally "bit the bullet". It was a very good decision as today, Aug 16, 1967, is my 45th anniversary of the surgery.

 

[Adrienne]

Similar situation

Similar situation

Hi Tom. I also had Barlow's Disease with 4+ regurgitation. Long story short, at the end, I got A-Fib, and it became rather urgent that I have the surgery. Luckily I had already spoken to the head surgeon. In any case, I also had a full sternotomy for the same reasons. He also gave me an 80% chance of having a repair. Luckily, although he could not do the traditional type of repair, he was able to do another type of repair using artificial cordae and a ring around the annulus.

In any case, I urge you to get it done quickly.

 

[Mike1952]

Hi Tom,

I am a week post op. I discovered I needed a new aortic valve on June 11, 2012. I tend to want to research something until I understand it, then get it done. I could've waited several months to do it but once my wife and I were convinced it needed to be done, there didn't seem to be a good reason to not do it sooner rather than later. It was consuming my thoughts almost all my waking moments. About a week prior to the surgery, I noticed that all my talking about it to my wife was having a toll on her. I made a conscious decision to try and do like so many people on this forum say: make a plan, stick with the plan. Trust in the plan and the professionals you have chosen to care for you. It is so much better to have the surgery in the rear view mirror!

Wish the best for you!

Mike

 

[camgough]

The anxiety of waiting was definitely one of the worst parts of the whole experience. I used to joke that I wished someone would just knock me out, drag me into a van, drive to the hospital and then I would wake up and it would all be over.

 

[DanielB]

I was told '4-6'' years when diagnosed with Aortic reguritation for my surgery, but, just seven months later I had symptoms and all things switched into high gear. Though my Cardio said I could wait up to a year, I opted for five months out. As it turned out, it was good I had it then as my surgeon told me after he was done that my 'valve was shot'. As it has been said many times on this site, Cardios tend to want to wait as long as possible, surgeons tend to want to get to it sooner. In any case, sounds like you need it and getting it done as soon as you and your team decide to get it done is a good idea.

Waiting is the worst. I am so much happier now, knowing that it is behind me and 'the fix is in'.

 

[Racquetshopper]

I was given similar info from my cardiologist (next 3-6 months). Met with the surgeon a week ago who said the MV was so severe it looks like it's ready to tear off. Surgery is scheduled for Aug. 28th. A shock to say the least BUT I'm thankful he is ready to do this sooner than later as the waiting is very anxiety producing. Sooner than later would be my decision as there is a better chance for repair and that seems to be the best scenario.

 

[karla]

it's probably better to have a repair than a replacement, if possible. if you wait and things get worse, the option of a repair might fly out the window...

 

[LouLou]

The decision as to when to have surgery is a difficult one. On one hand you want to get over with and start recovery, but on the other hand, it is a scary thing and you don't want to rush. You have to mentally prepare (if possible). You are not alone - it is something many of us struggle with before surgery.
When I had my surgery 23 years ago to replace my mitral valve, I was very sick and knew it was time. I was more than ready and I was young back then. Now I need my Aortic valve replaced and I don't feel ready. But I am going forward with a TEE test and after that a meeting with the surgeon and then......I don't know yet. But I am leaning toward sooner than later. Cardiologist says the time is getting near. I think I will find more peace when the decision is made. I am 49 and will also have the full OHS.
Good Luck to you.

 

[TomG]

Hi there,

Thanks for the reply and I understand what you mean, I am slowly developing more symptoms and they seem to last longer and come at times when you least expect it, like last night I been having trouble going to sleep a lot lately as I get palapatations, short of breathe but sooner or later I get to sleep and I MUST sleep on my back only. But last night I woke up at around midnight had to go to the bathroom which is almost every night but could not get back to sleep as I had my heart was racing a bit a slight pain on the left and I tried several times to get to sleep I sat up on the edge of the bed many times for long periods of time and kept trying to get to sleep. So with that being said I know if that keeps happen I will get this done like real soon as I was thinking if this keeps happen and say I schedule surgery for September that will be a long long wait if I keep getting those symptoms like that every night.

 

[TomG]

Hi Tammy,

You are so right, it is very scary and having been told back in February 3-5 years for surgery then it went to 3 years then within the next year now within a month what person wouldn't get shaken up a bit, I was unprepared for that last one from the surgeon kind of made me dazed and it still is a lot. I know I MUST get it done sooner or later, I know that and now the risks in waiting but I like to think I could be a lucky one for a change and bet the odds, as I was told in 1998 when I was in the hospital with pnemonia (sp) that I would be on oxygen for life and I said to myself and the doctors "NO WAY" I said I know I can live without it and actually get fully well, as it turned out eight to nine months later I was trekking in The Amazon in South America. Maybe I could do the same here, but I know it wouldn't be like that as all the research I have done my class 4+ Barlow's Disease MVP is too severe and I know that, just do not like the thought of going from not taking any medicines at this time, do not have any doctor visits or any kind of health tests to getting major OHS going to this doctor and that doctor, taking medicines and getting tests. big change after the OHS.

 

[TomG]

Hi Karla,

I quite agree I do want the repair even though he said it will be a very difficult repair, however I am going to discuss with him about a replacement in the event he finds he can not repair it for any reason then at least I would of decided with him what type to have for me.

My surgeon did say if I wait for months I "WILL" develop complications, I understabd and know that, just need time to let this all sink in.

 

[TomG]

Hi there,

I agree that it is better sooner then later just that I was all set thinking when I met with the surgeon for the first time that I would have to try and push for the surgery for within six months or so and to be told first or second week of September took me by surprise big time! Infact he said he would do it sooner but he is going away for the last two weeks in August and he wants to be there for the pre-op foolow up and incase of any problems, so that is why I am so stunned at this point! We are both in the same canoe, I will let you go first! (haha)

Good luck to you and let me know how you make out as I will let you know how I make out once I made my decision.

 

[selma]

Hi, Tom -- I'm not sure what your insurance deal is, but I would recommend you go to a mitral valve reference center and have your surgery performed by someone with vast experience in repairing Barlow valves. By that I mean in the thousands. I had mine done at Mt. Sinai in New York City by Dr David Adams, who literally wrote the book on the repair surgery. His website, www.mitralvalverepair.org was invaluable to me in making my decision about where and when to have surgery. Current thinking is that even asymptomatic patients with severe MVP will benefit with early surgery. I'd encourage you to review that website and seek a place with a near 100% repair success rate. Good luck to you and if you have any questions, please feel free to contact me.
Selma

 

[carolinemc]

I just have to jump in. I agree with a number, waiting is the more harder part than just getting it over asap, as long as there are no serious complications to hamper recover. The recover is really with the sternum and muscles. Sternum can heal pretty well and quickly. The muscles and the tissue will take up to a year to completely heal, that is why the few weeks of no heavey lefting of 5 pounds or more is restricted. Otherwise, you will feel a million times better in no time, start getting more energy to do more, etc. I have seen that you have done research, good. Education is the key to healthy heart and body. You are doing great so far. The final decision on what you do is up to you. Good luck in whatever happens and keep us posted on your progress. Hugs for today.

 

[jake]

I don’t have any real advice for you, but having faced a similar situation with my aortic repair and possible valve replacement, it is a very tough place to be in. I guess I handled it OK because I refused to burden my family with my, well lets call it SEVERE apprehension! I did my homework, was lucky enough to find this forum and a few people who it turns out, went through a similar situation. I wish I could tell you what I did to overcome the feelings you have, but when I had insecurities, honestly, I just simply go here on the forum and just did my homework. I searched out a great surgeon, and he made me confident and secure with our decisions. The great thing about my experience here was that it wasn’t just a board where unsuccessful procedures and doctor bashing was going on. Rather, rational people who just ended up in this sub culture through massive invasive heart surgery and those who soon shall. We all got shocks, challenges and eventually more time on the earth to share our experiences. Were here for you.

Your in good hands, you’ll find a great doctor who makes you feel confident and comfortable, you’ll hurt and struggle for a bit and before you know it, your going to be on the other side saying "Man! Am I glad that’s over with." You will have some of the same and some different features to your recovery, but we all did.

Good luck to you and don’t worry, everything is going to go great!

 

[Boston Tiger]

Oh, do I remember the shock of being told "it's time" when I was in for my check-up. I was told I needed my repair within 6 months, and ended up getting it in month four. If I had to do it over again, I would choose to go in as soon as I could rather than waiting. I don't know how much of the symptoms I developed during those l o n g four months were caused by my deteriorating MV versus fear related issues caused by my mind. But I do know that I woke up in the cardiac ICU breathing much better than I had in a long time.

My only advice will be for you to make sure that you are totally comfortable with your surgical team. I wasn't with the first surgeon I saw, but was completely at ease with the second. But I'm lucky, since I live in an area with several top notch teaching hospitals.

 

[TomG]

Still Thinking...

Still Thinking...

Hi again to all,

This is TomG again and I want to THANK all of you who have replied and read my post on "Surgery Decision". It has been over a week since I seen the cardiac surgeon and I am still in "SHOCK". It is hard to believe that within six months I went to 3-5 years for mitral valve repait to 3 years to within one year to within a month or so. Hard to handy that rollarcoaster issue. However I did make one decision as my real good friends in California says, "taking baby steps" which is I called the cardiac surgeon who I met over a week ago whom I feel very secure with and fully trust and I like his bedside matters etc.,well I told his receptionist as he was with a patient, that I decided to definitely want him to do the surgery and for her to inform him of that, but (always a but) I still have not decided as to when, maybe a month maybe six months not sure as of yet, as I told her it is not like buying a TV. The one thing is also which do not know if it is good or not, he my surgeon is going on vacation for the next two weeks, guess that is good at least he will be well rested and stress-free when he comes back and whn I tell when I would like the surgery.

I guess my main struggle with this is, I am a male 55 years old, rarely gets sick, even in regards to getting a cold. Prior to this year I have not seen a doctor for years and I DO NOT take any medicine at all at this point in my life, do not have to take any routine tests etc. I am doctor,medicine,test free and I know all of that will change! Plus the scar that I will have down my chest as I have to have a FULL stremony (spelling). I know tht will take a long time to heal. Plus concerned with any issues during or after surgery and recovery as I had that simple TEE test done, well for most simple for me major issue as I had an allergic reaction to the mnedicine and had to go back to the ER hours later if I didn't I was told I would of either died or have been in intensive care for months. So that has me concerned as well. Only good thing I guess from that is it is better to find out then, rather then have that medicine given to me for my OHS.

From all the replies and all what I have read on this GREAT forum that mostly eveyone is in agreement and say get it done, no good reason to wait, I know that plus I know I MUST get it done as I was told it will not go away and get better by itself, and the longer I wait complications can and was told will come. I know I will be making my decision probably soon and when I do I "WILL" let everyone one here, my surgery friends know.

Thanks for all your support as it does help!!!
TomG