Lorraine1234's surgery postponed/cancelled

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katie1234

Well-known member
Joined
Jun 5, 2007
Messages
85
Location
New York, NY (my mom lives on Long Island).
Hi everyone,

So my mom went in for the cath yesterday (wed) in preparation for her double valve replacement surgery today (thurs) and the results indicated that her mitral valve did not look as bad as they thought. I think they thought it was going to be mod-severely stenotic, but it was more like mild-moderate. So they cancelled the surgery today and are doin a TEE instead, because now they are not sure 1) if they will do the surgery at this point and 2) how many valves they will replace if they do go ahead with it.

Her aortic valve is still moderately-severely stenotic (I think .9 cm), so they are saying that she will definitely have to get it replaced at some point, but they don;t know if they need to do the mitral now, since it is not as bad as they thought based on the echo. The surgeon said how he doesn't want to put her through the risk of the surgery if it isn't totally necessary yet, and that he would also feel bad if he did the aortic now and then she had to go back for the mitral in 3-5 years.

I felt so bad for her when the nurse practictioner came in yesterday afternoon and told her that the surgery was cancelled. As I am sure you all know, psyching yourself up for this surgery is so hard, and once you are there, you just want to do it and get it over with.

It would be great if they were saying that the cath results showed that she her valves are actually in wonderful shape and she won;t have to have the surgery at all, but the fact is that they are damaged and she is having symptoms from them. She has some mild pulmonary hypertension, a PFO (I think that's the same as an atrial-septal defect), and SOB when she tries to do the things she normally does, like go for a walk or get up and walk at a normal pace from a sitting position. She has also been getting tired a lot more easily in the past six months, and just doesn't feel great.

The surgeon said that if she was not a radiation damaged patient, he would not be so hesitant to replace at least the aortic right now without doing the TEE. But since she does have radiation damage, he wants to be extremely cautious in planning this out and deciding what to do. He kept reminding us that surgery for her has somewhat of an elevated risk (no numbers given). He said he will have a game plan by Tuesday. I am really confident in him and her other doctors, and I know they will come up with the best plan. I just feel terrible for my mom, even though the cath results were actually pretty good (mitral valve not as bad as they thought it was). One definite positive thing is that she won't need any bypasses if and when they do the surgery.

Thanks for reading this long long post.
 
Hi Katie,

I know it is so hard to hear that a surgery is being postponed, but perhaps your mom will get some extra years out of the ones she has now. I guess we will know more after the results of the TEE are in.
Please update us and let us know what has been decided.
Hugs,
Mary
 
Maybe it's a God thing that she's not having the surgery just yet. It sounds like it's a hard one for her with the radiation damage. We will keep her in our thoughts. Let us know how it goes. Blessins.........
 
I always like it when the surgeon makes sure of things, especially when there are extra problems to consider. I hope they decide to do both valves and spare her another operation down the road. But the TEE will show what's what, I think.
 
Katie, you should take solace that the surgeon is being very careful and considering all best options for your mother. It sounds like she is in good hands and our prayers for her will continue.
 
The waiting is hard, but as others have said I am sure there is a good reason.... I had to wait a bit so I know it is hard. Maybe she can use this time to get a little more prepared etc.

Best wishes,

Tom
 
I'm sorry your mom had her plans interrupted. OTOH, I am GLAD the surgeon is "checking everything twice"!

Yes indeed, radiation damage is a tricky thing and needs to be considered carefully.

As a Radiation Treatment Survivor, I had an MI, angioplasties, and eventually Bypass Surgery. My valves were supposedly NOT a problem at the time of my Bypass.

TWO years later I was diagnosed with Aortic Stenosis and one cardiologist recommended surgery at that time. Another, after consulting a local surgeon, thought that I could / might get 3 to 5 more years out of my Aortic Valve with appropriate medication.

ONE year later it was at 0.8 sq cm (measured by TEE and Catheterization) and surgery was recommended. My Mitral Valve leaflets were calcified but "freely moving" and MV replacement was NOT performed at the time of my AVR.

TWO years later, my Mitral Valve opening had decreased from 2.5 sq cm to 1.5 sq cm and I consulted a surgeon. He recommended close monitoring and suggested "call me when your quality of life is no longer acceptable".

THREE years later, my Mitral Valve area is still 1.5 sq cm but I was having shortness of breath. LASIX (for fluid retention) releaved my symptoms significantly and we continue to monitor closely.

ONE surgeon recommends surgery NOW, another was obviously a little afraid to take me on, and the original surgeon keeps in close contact ("we are ready when you are").

It's a TOUGH CALL, knowing just when to go in and replace the Mitral Valve, especially for a radiation damaged patient.

Note that SOME Surgeons are now offering / suggesting replacing BOTH valves (Aortic and Mitral) at the same time *for Radiation Damaged Hearts*, 'even if' the Mitral Valve doesn't quite meet the usual guidelines for replacement because of the high likelihood that it will need replacement in the future.

Again, I'm glad your mother's surgeon is taking a long and careful look at ALL the factors before finalizing his plan and going ahead with surgery. I believe this is a GOOD THING! He sounds like a wise and knowledgable surgeon.

Best Wishes,

'AL Capshaw'
 
very similar situation

very similar situation

Hi Katie, Your mother and I are in almost the same situation - around the same age, post radiation, severe aortic stenosis and mild mitral. I am being followed in Boston at Mass General (surgeon) and Brigham and Women's (cardio). I see the cardio every six months, have an echo once a year and a stress test every two or three years. Symptom-wise I have gone from jogging to walking three miles a day and am probably a little more tired than I used to be. They are waiting for more symptoms and changes in the echo before doing anything.

The possibility of replacing both valves at once has been discussed but similarly the mitral isn't "bad" enough yet. The idea of replacing the aortic and waiting with the mitral has also been discussed. The surgeon discussed a lateral, non-sternotomy approach for the mitral if this is the case.

I echo the sentiments already expressed that you are lucky to have found an astute surgeon who is being careful.

Best wishes to your mother. Maybe we could PM sometime. We sound like valve twins!
 
Yikes ... very sorry Lorraine is enduring all of this :(.

Thoughts/prayers coming to you, Lorraine....



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
WRMNshowcase.lego.HO.model.MCs.RT.CHD = http://www.chevyasylum.com/cort
"Waiting to be mended like a potter would mend a broken vase" ... Larry Gatlin & The Gatlin Brothers ... 'Broken Lady'
 
Ditto what others have said....it sounds like your Mom is in good hands. I am sure it is hard being psyched up for OHS and then having in cancelled, but it sounds like the right thing to do. Best wishes to your Mom.
 
Katie,
Please accept my warmest wishes for you and your Mom. I cannot even begin to know what she (and you too) is feeling after preparing for surgery and having it postponed but I'm sure it is not a pleasant experience. And to get such conflicting news. I think however, you should be glad the surgeon is being so cautious and checking everything. He sounds like he has your Mom's best interests at the top of the list.

Prayers and positive thoughts coming your way...
Take Care!
 
Katie, I haven't posted to you yet, and I am a new member, but I believe from reading your posts that your mom had been scheduled for surgery in New York City with Dr. Krieger...isn't that so? At any rate, I am a NYC resident who will be considering Dr. Krieger (through cardiologist Robert Campagna) over the next several weeks, so I expect to be following your situation with interest.

I'm so sorry your mom had to be put through such a stressful experience! I hope that her TEE offers the surgery/cardio team the definitive info needed to make a more informed decision on her condition and surgery options. My best wishes to you all over these next days!

Best, Sona
 
As always, you guys know just the right things to say to help us to feel better and put things in perspective. The more I think about it, the more grateful I am to have a surgeon as cautious and thorough as Dr. Krieger. With so many variables and risks/benefits to balance, I am so glad that we have such a fantastic team on the case (and that the decision is not mine to make). In addition to Dr. Krieger, Dr. Mellow (one of my mom's cardiologists) has been great, too. I'll let you guys know what the verdict is on Tuesday when we speak with Dr. Krieger again. Thanks for all of the support through this weird and confusing time.
-Katie
 
Will look forward to your post on Tuesday- hang in there, Katie. You're a great daughter!
 
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