What do I ask the surgeon?

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67walkon

Well-known member
Joined
Mar 17, 2007
Messages
263
Location
Tequesta, Fl.
Bicuspid aortic valve here, down to an estimated 1 cm, based on echo. Next week, I am traveling to Shands teaching hospital at the University of Florida for a CT scan and a consult with their surgical team.

So far, I have no symptoms, but the valve has gone from no stenosis 5 years ago, to mild 20 months ago, to 1 cm now. They're telling me OHS is in my future, somewhere between 6 months (and that was 2 months ago) and 2 years, depending on how fast it goes and depending on what the CT shows on my root, etc.

So what do I ask the surgical folks next week?

Thanks, John.
 
This will be a great visit for you. You are not in any hurry and can gather information with this surgeon to get you ready for your upcoming surgery. All is good!! Keep that in mind and approach this like any other important meeting.

I would think your main concern would be valve choice. Find out which valve he uses the most often and why. Ask him what he'd use on his own family, or himself....and why. Find out how long your surgery will take, how long he expects you to be on the heart lung machine. Have him walk you through the steps of the procedure briefly to see if there are any questions there, or things he needs to clarify. What kind of stitches does he use to close you up and why. Does he have experience with minimally invasive surgery, or is he all about full sternotomy and why. Does he use wires, then, to hold the sternum back together? How long does he expect your scar to be? Ask about recovery. How long does he stay in touch with you post surgery? What is the office set up for questions and concerns.

Most of us advise that you take a coherent list, concisely written, in to the appointment with you. Have a pencil. Check off each item lest you forget an important one.

DO NOT WORRY about taking up his time. You are paying for it. My surgeon would've stayed another hour, but we ran out of questions!!! This is for YOU. Make sure you don't leave until you feel satisfied with what he has shared with you.

I walked away from my visit feeling GREAT! I loved my guy. I looked very carefully at his hands, registered the grip and kindness in his shake and left feeling amazingly confident. Tomorrow I go in for my first annual echo.....we'll see if he was as magnificent a surgeon as I think he was! ;)

Come back and tell us how it goes.

Best wishes. Marguerite
 
Hi John,

I'm glad you are going to Shands, are you meeting with Beaver??? One thing, ask if you can have it at Alachua General, much nicer place to have your surgery and if you do, I've got a list of nurses you need to say hello to for me :D

When I met with Dr. Martin I was at .8 and he said that was severe and I couldn't wait 6 months, I waited 6 weeks....that was too long for me. I would have liked to have gotten it over sooner. My only symptoms were SOB, and I was going downhill fast.

Did you tell Saurman that I said hello?? I need to email them one of these days!
 
John:

My husband and I spent about 1 hour 45 minutes with my surgeon on 3/27 concerning my husband's upcoming mitral valve surgery. Dr. Matter did my surgery almost 4 years ago, remembered that I was the "cat lady." (We have a consult with a 2nd surgeon 4/16.)

Dr. Matter recited a long list of info that answered most people's questions -- mortality risk, complications and % risks, length of stay, what to expect, % risk of infection, etc., etc.
Some things I already knew, based on my surgery, nearly 4 years of being on vr.com and 4 years of reading up on cardiac surgery.

We also wanted info on:
thorocotomy vs. sternotomy
durability of repair
mechanical valves, as a backup

He showed us a chart with a variety of mechanical valves. He prefers the St. Jude Regent, which I have; we asked about the On-X. He's never implanted one, but said, "If that's what you want, I'll do it." Ditto on the thorocotomy.
 
Thanks, all. It is overwhelming and difficult to remember what to ask. My wife is going with me, so that should help. All I really want to hear is that everything is okay, or will be.

They do use the so called minimally invasive procedure which is, I guess, an easier recovery. I hadn't thought about most of the other comments. My main concerns right now involved scheduling. Since I am asymptomatic, I hope I can do a week long bike ride across Georgia in June. If there is no significant risk, I plan on doing that ride.

After that, I guess scheduling is going to be an educated guess. Do I wait for symptoms or not? The ideal scheduling would be to have the surgery a day or two before any real symptoms develop, but I know that is impossible. And it isn't clear to me how much longer I can expect to go without symptoms, given a very active lifestyle, and what the risks are of early vs. later surgery. There are a lot of grey areas, I fear.

Lynn, I did tell them both you said hello. Ken asked how you were doing and I told him you were doing well.


John
 
John take a pad of paper, write down everything that comes to mind that you want to ask, then take it with you as well as your significant other. We tend not to hear things very well when it's us being talked about and they do.

Actually you don't want to wait for symptoms to show. By then, damage is being done, so the sooner the better. You already know it's in the future, but your going to have to let the surgeon make the call as to when. They don't like to wait for damage where some Cardiologists would have you wait for symptoms.
 
John:

Do NOT wait for symptoms. Generally, the better your pre-op condition, the quicker your recovery.

What I have read about the sternotomy vs. thorocotomy:

The sternum has few nerve endings. The soreness you feel is muscular, due to the position you are in on the OR table.
Surgeons vacillate between sternotomy & minimally invasive surgical incisions.
My surgeon said he used to do MIS, has gone back to sternotomy. He says (1) the MIS is more painful than sternotomy and (2) surgeon can get a better access to the heart w/ sternotomy.
I've known several people who went in for MIS with mitral valve surgery; surgeons had to do a sternotomy.

My surgeon said not everyone is a candidate for thorocotomy. Overweight people or women with large breasts are not good candidates, since the incision is under the right breast. The surgeon said it's more difficult to do MIS on mitral valve repair/replacement because the incision is under the right breast, and the MV is on the left side of the heart. But he's done it, just prefers not to.

Of course, surgeons can do a modified sternotomy. Mine is about 7"; some people have very short incisions.
On the other hand, an employee where I work had CABG about 2-3 months ago and her incision is probably 10" long, based on the top of the incision (starts above the collarbone!).

You may feel overwhelmed with a lot of information, and you'd be abnormal if you didn't have a tiny bit of fear/apprehension at facing surgery. Don't know anyone who didn't.
But you will come through surgery. I had to tell myself that many many people had faced the same thing as I did, and were alive & healthier because of their OHS.

Good luck.
 
Overwhelmed is probably an understatement! I have to go look up some of the terms you guys just used.

I will use this information as a starting point for a list and make sure my wife has it too, just in guess I get unnerved with the surgeon.

Based on my past experience with coumadin, when my afib was active, I am pretty certain I want a tissue valve. One cardiologist had me on coumadin, when it probably wasn't really necessary, and they had a really difficult time with the levels. My liver apparently processes the stuff like crazy so I have to take a lot and get checked frequently. Plus, bike riders fall, sooner or later, and even with a helmet on, I don't want to hit my head with coumadin in my system, if it can be avoided.

Is the recovery from the partial much different than from the full? I think this guy does the partials or with some repairs, even the one from the side. I doubt I get the side entry.

The scary thing will probably be timing. When they get a more accurate measurement of the valve, I guess I'll know more. My guess is that if it is really at 1cm and progressing, that it will be down in the .9 or so range in a few months. If I can get through the summer, or at least the first part with no symptoms, a late summer surgery wouldn't be too bad. I really want to do my cross Georgia bike ride in June, but I know my wife and primary doctor will encourage me to do whatever the surgeon and the primary think is most prudent.

Do some people not have any symptoms until the valve is down around .8cm? I guess that may be a question for the doctors, but I wonder what your experiences have been.

Thanks a million. Now I have to go look up new words!

John
 
It's okay if you never understand some of the words!!! That's what the pros are for in the operating room!! :D

Not everyone gets symptoms. Not everyone can distinguish what a symptom actually is until they recover and go, "oh......yeah....that's not happening anymore!! It must have been a symptom!"

They are going to be watching you very closely. Some people can go for years at 1.0 cm. Maybe you'll be one of those. But, maybe you won't. You might feel better about everything if you get a clear idea of how they are going to proceed with you and with monitoring your valve's deterioration. If they seem lacadaisical about your number; pat you on the back and tell you to forget about it for a year -- you can always insist that you get yourself checked (echo) every 6 months. I did that since I was actually very impatient to get the thing done with. Waiting 3 years was driving me crazy. Then, in the end, my insisting on an earlier date for my echo (gut feeling) brought up my .53 measure and then when it all boiled down to picking a surgery date, I'm the one who stalled for 4 months because I had some other things I had to do (some medical, some personal). The surgeon told me that my valve had held in there at .53 that whole time. Everyone's different. Insist on a monitoring schedule that you are comfortable with.

Plan on recovery (no matter what you end up with sugically speaking) that will encompass most of your energy for 4-6 weeks. Then, if you are better much faster -- great. But allow yourself that time...you may need it OR you may just want it!

We've got your back, here....you're gonna do fine!!

;) Marguerite
 
Actually, anything under 1cm is operable. I wouldn't wait for point 8.

Don't deny symptoms, and don't dismiss them in yourself. Some doctors will steadfastly wait for symptoms no mattere how bad your heart is getting.

Most people do get a standard sternotomy, which basically means that they split your sternum lengthwise to open up your rib cage fully. When they're done, they wire it back together to heal. The wires stay in. Not really as bad as it sounds.

The questions I would ask in a teaching hospital include, "will you be doing the actual heart work yourself, or will you be observing a student?" I asked my surgeon that. Doesn't hurt to know for sure.

Some thoughts fro when you do go in:

Some hospitals use a lip clip with the ventilator tube. It can leave a nasty fat lip, which is an unnecessary annoyance. Ask them if they can use tape instead.

I found that Fentanyl is less apt to cause "morphine constipation," and it didn't leave my mind in a stupor, or make me feel disconnected. It comes in various, patient-controlled formats, but you should ask for it ahead of time.

If you want to use their linen, just put on a second robe backwards over the first, and you're covered both sides. No messing with wires or dressing/undressing for an amble through the ward.

Have your loved one(s) bring a pen and paper when they come to see you in intensive care. If you've still got the tube in, you can communicate through writing.

The Tube is your friend. It breathes for you for hours during and after the OHS. You shouldn't fear it when you wake up.

Best wishes,
 

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