mitral valve repair/replacement

[Christina L]

surgeon

surgeon

Hello everyone and thanks again for all of your uplifting support to a total stranger!! I am certain by the time all of this is over, I will have made some great new friends from this site.

Andrea, again, thanks for your detailed description of what you went through that you sent in a personal E-mail and also thank you for your suggestions. I will write you personally soon.

I have decided on a surgeon (99%) sure - Dr. Cosgrove in Cleveland. I guess he is six weeks' out for scheduling surgery with him, and I am hoping to be scheduled the first week in November. I spoke on the phone with a patient of Cleveland Clinic's (a doctor under Dr. Cosgrove did the actual surgery for her) who had a very bad mitral valve (like mine) and it was repaired. I am hoping for the same results.

I also spoke with Jeanne who is Dr. Cosgrove's assistant and she approves of my plan to have a tissue valve if my valve cannot be repaired. I know, Andrea, that you and most people (even my cardiologist) want me to get a mechanical valve, but for me, I feel better going with the bovine pericardial mitral valve that Dr. Cosgrove uses extensively now - I guess it can get up to 15 years of life before reoperation. I was relieved to here that Dr. Cosgrove and his associates would not make it difficult for me to choose to have a tissue valve.

Of course, I am praying-praying-praying that I will have a repair done. Lynk, what was your valve like before you had it repaired?

AND to all of you who have responded to me, with such inspirational and successful stories of your heart surgeries, congratulations to ALL of you on your repairs and replacements - you all seem to be doing so well and that is so encouraging to someone like me, who is standing at the foot of this darned old mountain - and I live in the mountains and love most of them!! Hee!

Anyway, that is the latest. I will keep you all updated. And God bless the gal who is going through (Gisele?) the rough time right now with reoperation and all. You are in my prayers.

Thanks all!
Chris

 

[MelissaM]

Hey Christina, I sent you this PM. For ease of use/reading, I will also post it here for you:

Howdy Neighbor!

Hey Christina, just wanted to say hello from a fellow VR.com-er living down the road. I live in Boulder (although am currently in PA recouperating from my recent valve surgery). As was mentioned in your initial thread, I just had my mitral valve repaired at the Cleveland Clinic by Dr. Cosgrove. For me, it was the best choice possible, as I am still looking to have children, which becomes much more complicated with a mechanical valve. In the end, I was able to get a repair, a minimally invasive procedure, and a relatively smooth ride out of the OR.

If you are like most Coloradans, you have an active lifestyle, which may suggest either a repair or a tissue valve so you don't have to be on Coumadin. . . but as you know, a tissue valve means another surgery down the road. If you only want to travel this road once, then mechanical valve is the way to go. Having been through the mini-sternotomy version of the surgery, I can say that it was much less painful than I anticipated, and the recovery has been much quicker than expected.

A note about insurance: not sure who you have, but it can be an extraordinarily draining experience to fight to get seen at somewhere like the CCF. I chose to fight that fight because I wanted the best chances of repair possible, and I believe a repair requires a bit more finesse than a valve replacement. Had I opted for a mechanical or tissue valve, I would have happily stayed in Colorado, and avoided the massive headache of travel before/after surgery and the uphill battle with the insurance company.

There are several great surgeons in Colorado - Dr. Douthit studied under DeBakey (world-renouned surgeon out of Houston), and performs surgery at BCH in Boulder. PillarPaul (of this site) could recommend a surgeon down in Denver. I saw Kevin Miller in Denver, who also seemed very competent. Let me know if you need any of their contact info.

Glad you are getting knowledge - even if it freaks you out - because in the end, it is knowledge that will set you at ease. As you gain more knowledge, you will become more confident in the procedure, the potential outcomes, and your role in all of it. Valve surgery is still BIG SURGERY, which is why we will be here to support you through it. Just know that it is do-able, and you will most likely come out of surgery with flying colors.

Wishing you all the best,

Melissa

 

[Christina L]

Melissa ?

Melissa ?

Melissa,

I don't know where/how you sent the information. I haven't received anything that I know of.

Chris

 

[Christina L]

HELLO!!!

HELLO!!!

Hi Melissa,

I should have checked the board again first!

I am going to read your letter right now. Thanks so much!

Chris

 

[MelissaM]

Changed my original post and posted the message above for you. To access a Private Message, click on "User CP" in the upper right hand corner. You should see a list of private messages there. Melissa

 

[Ross]

Chris I've sent you a couple of things also and never got a response, so I'm assuming you don't know how to check your Private Messages.

There are 3 ways to check them.

1. Go to the bottom of this page and you'll see a box on the left side of the screen that says "Forum Jump" click on the arrow and choose Private Messages from the drop down menu. You may have to scroll a little to see it in the menu.

2. From the main forums page (Where you see all the forums listed) go to the bottom and click the word Private Messages. There is also a counter there to tell you how many you have in all 3 folders.

3. Go to your User Control Panel or "User cp" button by the VR logo at the top of the page. On the first page you can get to your PM's.

Hope this helps you some.

 

[Christina L]

Melissa

Melissa

Melissa,

Thanks so much for the information. I have already sent a TEE tape to Dr. Cosgrove (almost a year ago) and he said he can repair the valve. Of course, I still know that is not a given until they get in there.

I definitely want this to be repaired if at all possible. I also have decided on a bovine pericardial valve if it needs replaced. I don't want to start on the Coumadin quite yet at this point in my life -you are right about being active in Colorado - I can't stand the thought of never getting to X-C ski again.

I am sure once I go through the surgery, I will NOT want to do it again, but I will have to live with my decision if/when the time comes - if a tissue replacement is done.

Was your valve a "bad" one. It doesn't sound like it. The anterior and posterior leaflets of mine are floppy but there again, Cosgrove said he can repair it. My cardiologist in Fort Collins sends most of his mitral valve patients to Cleveland (if they want to go there that is). I trust his judgment. Dr. Cosgrove is a wizard as far as I'm concerned, after all I've read.

What do you think of the man? I would LOVE to meet with you when you get back to Colorado. You must be at your family home getting TLC from your parents and family. That is wonderful - I wish you a 100% full recovery very soon. I "envy" you - having it all over with, with a repair. The waiting is definitely the hardest part.

Healing wishes for you -
Chris

 

[karlaosh]

Another girl from Colorado

Another girl from Colorado

Hello to all, especially Melissa and Christina.

I live in Fort Collins, Colorado. I posted a few messages recently about my declining bicuspid aortic valve and my impending TEE. Well, I had the TEE on Tuesday and as you all so compassionately assured me, it was a piece of cake. Actually, I don't remember any of it! Thanks again for your reassurance. It really helped me not to be scared!

According to Dr. Cullinane, my cardiologist here in Fort Collins, my valve looked a bit better on TEE than it did on regular echo and he's now thinking that surgery won't be necessary immediately, but maybe in 6-12 months. The measurement that continues to deteriorate on me is the LVEDD, or left ventricular end diastolic diameter. Basically, my left ventricle keeps getting bigger and bigger. My ejection fraction and other key indices are OK.

Cullinane wants to see me in three months for a regular echo to check how my LVEDD is progressing. In the meantime, do you all think it wise for me to get a cardiac consult from Cleveland or somewhere else? Or should I wait until my measurements are closer to the critical number? I like Dr. Cullinane but I don't think any of the cardio docs here have TONS of experience with bad aortic valves, nor with replacement surgery.

Christina, who's your doc here?

Melissa, I was interested to see that you mentioned Dr. Douthit. I haven't yet begun to search for a nearby surgeon as a possibility. I have looked into Cleveland Clinic and would feel great about going there, but I do have three young children and husband here in Fort Collins and Cleveland Clinic is considered out-of-network for my insurance. Do you know how many valve replacements of any variety Dr. Douthit has done? How about any other surgeons in the Boulder or Denver area? So glad to hear you were able to get a repair and that all is going well.

Karla

 

[pillarpaul]

Denver Doc

Denver Doc

Karla,

I too am a fellow Coloradan (Denver). I had aortic valve repair about five months ago in Denver. Although Cleveland Clinic is probabably one of the best, I want to assure you that this surgery isn't so specialized that you have to go to Cleveland or Rochester, Minn. Certainly you won't want to have this done in Fort Collins (and I wouldn't trust Boulder either) but the cardiovascualr surgeons at St. Anthony's Central and St. Joe's in Denver are tops. They have done thousands of these surgeries combined. My surgeon was Dr. Lance Walker. He is the head of cardiovascular surgery at St. Anthony's. He does a couple of hundred open heart surgeries a year and has been a surgeon for 35 years. He is considered a "master craftsman" by the Cardio nurses and he is a wonderful person (not always the case with surgeons). Please feel free to call him for a consultation. His number is (303) 595-2700. If you want a second cardio opinion, my cardio is the head of cardiology for St. Anthony's (obviously I had a fantastic team). His name is Dr. Michael Ptasnik and his number is (303) 595-2600.

I mentioned to Christina that the only drawback of a Cleveland Clinic or Mayo Clinic is the aftercare. If you have a family that you don't want to leave, Denver may be a better option. Also, you will be able to more easily access cardiac rehab, something I would highly recommend.

If you want any other local information, please feel free to private message me. And by the way, I have felt absolutely terrific since my surgery.

Paul

 

[Georgia]

Hi, Chris

Hi, Chris

I'm glad you joined our site. I haven't had a chance to get online for a few days, but have followed this thread. You sound like you've already started to come to terms with this shocking event in your life.

Here we all are just toodling along and suddenly can't breathe, for crying out loud. And it's not a cold. And even though we may have known for years that we have a minor or even major heart issue, we KNOW we're not ready for ohs!!!!! And NOTHING HURTS, so how can we need surgery???

Oh, yeah - can't walk into work from the parking lot without stopping to catch our breath 3 times; must be our age, huh?

So we all got to be realists suddenly and completely; and those lucky enough to find this forum prior to surgery had it all over the rest of us. Congrats to you; and please utilize this treasure. There's days' worth of reading here for pre-surgery types.

And we were all scared and shocked and all that; and here we are feeling lots better; and we are not exaggerating or fibbing when we say that the anticipation is the hardest; the other side, while not a breeze, is totally doable. And the better shape you're in going into surgery, and the more knowledgable, the easier it is.

Hang in there, kid - we'll give you a hand every step of the way.

 

[MelissaM]

Hi Karla,

My impression was that Douthit was a great general heart surgeon and all around nice guy. I believe his specialty is saving desparate cases that come in through the Boulder Community Hospital ER. I've heard he is a magician with those cases.

Sounds like Paul has a good grip on a couple of local surgeons. I was sent to Dr. Kevin Miller, who does a couple hundred valve surgeries a year. He seemed to be a very competent valve surgeon, and he was very candid about what he was comfortable doing and what he wasn't comfortable doing on the operating table. He is also a Kaiser-affiliated doc, if that happens to be your insurance. I can post or PM you his information if you are interested.

Glad to hear time is on your side - it helps with coming to terms with the surgery, doing research, etc. Keep us posted!

Melissa

 

[Bob]

Recovery takes time

Recovery takes time

Chris, I had mitral repair on Jan 13. My valve was like yours with two leaflets not working and was a candidate for replacement. When the surgeon opened the heart he choose to repair with the ring and sutures. He put me on warfarin for three months and baby aspirin for forever. Now I am almost nine months out and feeling good. However this didn't happen overnight. It was about six months before I realized life was getting better and I am stonger than I feel. I mention this because it was so subtle. I kept thinking I should feel good but didn't. I would read posts on this site and it sounded like all of them were better so whats wrong with me? Is it my age(67) or am I doomed? Well as many of our group will tell you and me, it takes time and no amount of self remorse, self motivation, self worry or self anything will make it come any faster. Your body just needs time to heal and your psyche will follow along in its own time. The message I want you to hear is that you will recover. Your surgeon will make the best choice for you and your body will heal at its own pace. This is a major challenge you are facing so make your peace with your god, join us online and learn all you can. In time you will be one of us looking to comfort someone just like you. My prayers are with you. Bob

 

[Christina L]

Thanks Bob!

Thanks Bob!

Hi Bob,

Thank you so much for the encouraging reply to my post. You are all patched up and feeling great - I am so happy for you.

Where did you have your surgery done?

I have been wanting to hear from some more "mitral valvers" who have had repair and who had a valve like mine is now (pretty messed up). I am going to go into the surgery expecting a replacement and hopefully will be pleasantly surprised if they are able to repair it.

Thank you also for warning me about the long recovery period. You are right, so many people feel good immediately after surgery, but some do not.

I pray for continued healing and health for you also -
Chris

 

[Christina L]

what to do?

what to do?

Hi Karla,

I see Dr. Dennis Larson, who is Dr. Cullinane's associate in Heart Center of the Rockies practice.

Dr. Larson is older and wiser (I believe - and he would love me saying that - hee) - from all I have talked to in this area, Dr. Larson is considered "brilliant." I have seen Dr. Cullinane and don't doubt his abilities either - they all consultate with one another, so rest assured that Dr. Cullinane is discussing your case with the other doctors.

I would listen to Dr. Cullinane and be tested every so many months. That is what Dr. Larson did with me and this last MUGA scan showed that my ejection fraction had dropped and Dr. Larson said now is the time for surgery.

We are waiting to hear if Dr. Cosgrove in Cleveland approves of me having the surgery now, and will proceed accordingly.

Dr. Larson is the one who recommended Dr. Cosgrove/Cleveland Clinic - he thinks they are one of the best faciliities in the world for valve repairs and replacements as they do such a high volume of surgeries -and their mortality/morbidity rates are phenomenal - meaning very low.

I do not want to travel, of course, but I will go for the best surgeon, bottom line.

My valve to be operated on is the mitral and it is pretty messed up - mitral valve prolapse - congenital - SO every case is different and Dr. Larson prefers to send me to Cleveland. There ARE many good surgeons in the Western region, and in Denver. Start looking and researching and ask Dr. Cullinane what he thinks and check into some of the surgeons recommended from the people on this site.

Good luck!! You are going to be fine. Who knows, you could go several years before needing surgery. I was hoping for that with myself, but no such luck.

Chris

 

[fyrfytr]

Hi Karla,
I think you should at least check with the local cardiac surgeons. You will be surprised at what they have done. Dr. Stanton is known for aortic valve replacements, he is the surgeon that did mine and my aneurysm. I would put the Rocky Mountain Surgical Specialists up against any in the Denver Area. You should also go and visit the Heart Center at Poudre Valley. They will be more than happy to show you everything they do, the CICU is state of the art. So from another member from Colorado Welcome.
Take Care

Dave
________________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical
Heart Center of the Rockies