I've tried to research Medical Journals on the above minimal access surgeries for isolated aortic valve replacement.
We've been to 3 local surgeons at different hospitals each with a different recommendation on type of surgery.
We are opting for a minimal access procedure vs. full sternotomy since no artery blockage at this time.
We've been told of differing levels of risk and pain which favors the surgeon's choice of surgery. Who do you believe?!
Only 3 of the top 10 leading heart hospitals per US News offer mini thoracatomy though it's been done on dogs for many years. Is it because the US is lagging again? Is it because the other surgeons lack specialized training or adeptness to do this type of surgery?
I only found email for John Hopkins surgeons but no reply yet. Cleveland Clinic offers a nurse hotline. Mayo wants you to setup an out of town appointment and visit. University of Maryland hospital nurse emailed me back that they recommend the min-thoracatomy to patients fitting my mom's profile but they aren't in the top notch hospitals.
My mom is 78 years old, frail and small is size. She has no other comorbidity illnesses like diabetes or trouble breathing.
From a commonsense standpoint, it seems like the mini thoracatomy is the approach to use as no bone (sternum) has to heal first. But we've been told by 2 of the surgeons that removal of costal cartilages between ribs is more painful.
The office staff thinks I'm nuts asking for cross clamp and bypass times for these types of surgeries but I don't know how else to evaluate it objectively. They are recommending I come in for a second appt to get this information.
I've asked the typical risk percentages and volume of surgeries each one's done and they seem comparable.
The mini thoracatomy is offered at a smaller local community hospital. The major teaching hospital doesn't offer this type of surgery...only a mini sternotomy and daVinci robotics (which is limited to the mitral valve right now). Surgical expertise appears to be comparable so the only variable is the reputation of the hospital and type of minimal access surgery offered.
If anyone has any other ideas, questions or experience, please respond!
My mom is happy to just settle with the surgeon with the best bedside manner which is the mini thoracatomy. Maybe she has a point...better peace of mind when other objective data can't be obtained easily but I think it is from my dad giving her "his" opinion. For some reason, he doesn't want to use the major teaching hospital himself. He is once again forcing his opinion on my mother.
I'm so overwhelmed and confused right now, I can't make up my mind either. I like making decisions based on facts and it's not easy to get. Do I persist to get my mom objective facts or just accept her method of deciding. My role is to be an advocate to help her make an "informed" decision and I feel like I've failed her.
The medical community not used to having to provide this type of information to patients. They expect the patient to just pick a hospital vs. a surgeon. It sucks and I'm near exhaustion even before the surgery. An older sibling chooses not be become involved yet I know she will be the first one to point a finger at me if something bad happens.
KK
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Upper Mini Sternotomy vs Mini Thoracatomy
- By kk_stl
- Posted April 25, 2009 at 7:14 pm · 4 replies
- In Experiences with medical treatments
- Shared with the public
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- By kk_stl
- Posted April 25, 2009 at 8:35 pm
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May I also add that I'll also be very pissed off and upset if I lose my mom or she gets a stroke from the surgery and can no longer communicate. I have to keep reminding myself the risk is low. I've spent 6 long months being pre-occupied with getting her the right medical care instead of just enjoying her company.
We can't control what happens but it doesn't make it any easier to accept.
The woes of being a caregiver to an ageing parent...no matter how much you try to plan, things will happen that you cannot control.
I'm just getting discouraged at this point. Other things in my life don't seem to be working out either.
Doesn't it make you wonder why things have to be so difficult for some people? Am I making things more difficult than they need to be? Aortic or mitral valve replacement is quite common.
Yeah, I could be troubled with alot more issues...you can always find someone worse off. I try to focus on gratitude for the things that are right in my life but it gets so difficult at times.
I don't feel like my friends truly understand what I'm going through right now. I'm feeling alone on this journey though I know God is probably carrying me right now.
I guess I'm just second guessing myself today which I always manage to do anyway.
I'm trying to do nice things for myself but it doesn't seem to be helping me today. Tomorrow will be a new day and hopefully I will feel better about things. I know I can't afford to get burned out now.
The post surgery recovery process will be long and trying. My mom couldn't even handle the pain from getting her teeth cleaned 2 weeks ago. When I finally called the dentist office this week and they told me to have her rinse her mouth with warm salt water and take Tylenol, she's seen an improvement. I've told her to take Tylenol 2 weeks ago but she resisted.
I didn't go with her to the dentist. I felt I didn't need to goto a cleaning and I guess I was wrong. They probably told her what to do after it but she just didn't pick up on it. Instead, I've listened to her complain about it for 2 weeks. She complains so much about her arthritis pain but it has to take a backseat to her heart problem. It bothers me to see her so uncomfortable.
I've suggested that maybe taking an anti depressant or anxiety medicine will help matters because she can get so discouraged from her pains and woes at times. She refuses to take any type of behavior medicine or to seek out someone to talk to outside of her family.
As some people say...you can bring the horse to the water but you can't make him drink it.
The prior week it was necessary for me to go with her to the foot doctor to get her toenails trimmed. She was worried that they start cutting other areas of her feet or get her wearing orthopedic shoes! I went along even though I had other things that really needed to get done.
I'm just wondering if I can manage the post surgery responsibilities even with home health care. I don't anticipate things getting any easier going forward.
My dad and sister's solution is to throw my mom in a home and make it someone else's responsibility.
I guess I'm just needing to vent. I get these occasional days of discouragement but manage to bounce back with the help of my behavioral meds!
KK
- By Kennarina
- Posted April 26, 2009 at 9:39 am
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Hi KK
What a dilemma! Aging frail parents are something like having children - you want the very best for them but, unlike kids, you can't just force them into their carseats and take them where they need to go. And also unlike kids, you know that today's frailties will only become worse with time, not better.
<< "...I've spent 6 long months being pre-occupied with getting her the right medical care instead of just enjoying her company...." >>
BINGO! You have just answered your own question with that statement. And if your Dad is "once again forcing his opinion" on your mother, it sounds like this is perfectly typical behaviour for both of them, nothing unusual. Why expect that for some reason, during this kind of major decision-making, Dad would suddenly would change his personality? Their relationship - including if your mother's agreeing with your Dad - has nothing to do with you. I'm guessing that her going along with your Dad's opinions (the best bedside manner, not a major hospital) will make her feel more comfortable, as it has long before in many other marital issues where you were not involved.
I'm so impressed that you have done so much research to make the very best decision possible, but six months of this can lead to 'analysis paralysis' if you go on much longer.
And let's face it, all life is pretty much a crap shoot. You could spend the next six months doing even more research, visiting even more surgeons, and would you there be any better guarantee of the absolute perfection of your decision? Nope!
There is a substantial risk for ANY hospital procedure for the frail elderly, particularly any requiring general anaesthesia. Anything could and might happen in the O.R. no matter which procedure is being performed or where it's being performed or by whom it's being performed, and it will not be your fault for not picking a better option. You have absolutely zero control over the outcome, no matter which option happens.
You pretty well have to throw a dart at your list of options and pick the option where the dart lands - it's that close!
Meanwhile, I hope you take your own advice and "enjoy her company", no matter what else is in the cards for her.
Good luck.....
XOXOXOXO
http:myheartsisters.org
- By kk_stl
- Posted April 26, 2009 at 5:03 pm
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Carolyn,
I've been meaning to tell you how impressed I am with your new website! I too gave up the corporate rat pace but I haven't reached beyond taking care of my folks better, at least for now.
Among your many list of talents you should go in the psychotherapy biz! lol You told me exactly what my past one would have said! As you can probably surmise this forum has replaced my sessions since I'm uninsured.
I seem to be in a hopeless cycle of "protecting" my mom which started when my dad was a drinking alcoholic. Well, the drinking has stopped but not much else!
I made a major investment to forgive my dad but I guess the memories keep creeping back in and I get very resentful at times. While my mom goes along with my dad's decisions I have to listen to her complain about this or that with him. She vents through me and it makes me more resentful towards him yet she won't stand up and decide for herself!
I don't know what makes me think I can "change" him or her now! My therapist told me that over 15 years ago! lol I guess my old behaviors are tough to change.
BTW...The six months research hasn't been about the two types of surgeries (that's only been the past week). It's been a maze of sorting through Medicare insurance policies, appealing mistakes they made, researching clinical trials to see if she's eligible, finding a new PCP who doesn't use a hospitalist, finding a cardiologist with the right temperament to suit her needs,
and understanding her diagnoses better as they slowly were given to us, reading through the wealth of information on this forum...and the list goes on and on.
I'm feeling much better today and thinking more clearly! I just needed a sounding board and reassurance that I was thinking clearly about needing to refocus my energy.
Thanks for listening to me rant and rave!
If I'm ever in the BC area, to view the amazing garden tours, etc. I will definitely look you up!
You are a walking angel in your service to others!
KK
- By Bunnie
- Posted April 27, 2009 at 8:34 am
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Not sure where you live but at University of Miami, Bill O'Neill, MD ( he did Robin Williams cath)
is doing valve replacement percutaneously
(like a cath)..he is the best!!
He may be able to tell you what other docs/facilities are doing this new procedure in your area His contact info is: woneill@med.miami.edu 305-243-1940 (ask for Judy)
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