Surgeons disagree

[RobThatsMe]

Hi Catie,

I would recommend that you fly up to CCF, and meet face to face with the surgeon. This is what I did for one of my valve replacement surgeries. I first met with the local surgeon, listened to his recommendations, then made arrangements to have my records sent to CCF, to a specific surgeon. He reviewed them, and said that he would take me on. My wife and I then flew up there to meet with him, and to interview him to see if he was the right person. As it turns out, they found some additional issues that were completely missed by my local surgeon and cardiologist. I ended up having two surgeons and their surgical teams operating on me. One surgeon handled very complex cases, and the other specialized in Aneurysms, and Dissections.
Look at my profile, if you would like to see their names. If you decide to fly up to visit at CCF. They will arrange that you have all tests, and also meet with the surgeon in one day, and they really stick to an organized agenda schedule. We flew up the night before, went to CCF in the morning, and flew home that evening. SouthWest Airlines had some reasonable airfares, and CCF has some hotel discounts in the Cleveland area, with free shuttles to CCF. I believe the Wyndham Hotel in Playhouse Sq was priced at $98/night.

Hope you get your concerns resolved, and feel good about your selected surgeon's approach.

 

[cldlhd]

If they feel they can due just as good a job with a partial sternotomy them why not go that route but I wouldn't necessarily push for it. I asked about it and wanted an honest answer as to whether access is enough the same. My surgeon said he would only use a full sternotomy with what he was doing to me. I don't want to sound all tin foil hat but if there is a lot of demand for it I can see where some surgeons may be tempted to give the patient/ customer what they want.
As for recovery from a full sternotomy like most of this it's individual. I don't recall having an issue with things like opening a refrigerator.

 

[epstns]

I had a full median sternotomy, too, and really didn't have any problems with doors, stairs, refrigerators, etc. I just did them carefully and tried to keep all the pull/push effort to one side of my body or the other. I felt that this would minimize any stress on the healing bone, and I had really no problems. When I asked my surgeon about minimally invasive techniques, he said that with the valve and bypass I needed, he would need full access, so no minimally invasive procedure. His opinion was that if your sternum is properly re-fastened, the recovery will be the same, so why not give him the best access to the work area.

 

[cldlhd]

I had a full median sternotomy, too, and really didn't have any problems with doors, stairs, refrigerators, etc. I just did them carefully and tried to keep all the pull/push effort to one side of my body or the other. I felt that this would minimize any stress on the healing bone, and I had really no problems. When I asked my surgeon about minimally invasive techniques, he said that with the valve and bypass I needed, he would need full access, so no minimally invasive procedure. His opinion was that if your sternum is properly re-fastened, the recovery will be the same, so why not give him the best access to the work area.

I look at it like the difference between working on a new car or one from the 1950's . Possibly a crude analogy but hey. I wonder if there is also a psychological aspect involved in not wanting to be "fully opened up".

 

[Zoltania]

I'm thinking to buy some adult bath wipes to use instead of trying to climb in the shower the first while.

Just get a shower seat. They only cost $25-$35 or so. Showering is no problem as long as you can sit down at first, and it feels good.

 

[Jamieann]

I also had minimally invasive surgery, and I would agree with Zoltania that the issue is weakness (although I did experience some pretty awful back pain after my surgery). Showering was hard and took way longer than usual but felt so good! My hormones were all crazy after surgery so I would be burning up sweating bullets and then freezing, so I had to rinse all the sweat off!

Just be prepared that everything will take way longer than it does now (walking, going up and down stairs, getting in and out of the car, etc). It's not a bad thing... Just takes time to heal. I remember there was one day maybe 2 or 3 weeks after surgery, and I was bored from being at home so decided to walk to the coffee shop a block and a half away. I was walking as fast as I could but it was still so slow that I barely made it across the street during the pedestrian walk light count down. Then 2 weeks later I got through it in plenty of time.... Things like that improved pretty quickly though!

 

[epstns]

Just get a shower seat. They only cost $25-$35 or so. Showering is no problem as long as you can sit down at first, and it feels good.

Sometimes, at least in the larger cities, there are resale shops that specialize in home care and medical-related items like commodes, crutches, shower seats, etc. You can often buy these items for pennies on the dollar compared to new, then just donate them back when you're finished.

 

[tigerlily]

The one thing I've thought about to tell you is to ask how your valve choice might effect another operation if you should ever need one. Even 10 years ago, I was hoping that the next time they needed to replace my tissue valve, they might be able to do a transvascular valve replacement. Maybe in another 10 years, they will be able to do that. This might not apply to your concerns at all but I thought I would mention it. I hope you can get all your questions answered soon and feel very at peace going into your surgery. I know how hard this is and emotionally draining but you will work your way through it and find the best route to take for you.

 

[Catie]

Wow, thanks a lot, you all, for so many useful comments. It's all good info about the mini's and the full sternotomies and the likely general condition I'll be in after the hospital.

Rob, thanks for sharing some of your journey. I do plan to fly up and consult in Cleveland. Will take a bit of time to arrange, but I've started working on things.

Jamieann, it's good to hear that progress tends to come quickly.

Steve, I actually saw a shower seat a few days ago in a thrift store. It was really big and I passed it by.

I'm actually not fond of showers but love tub baths. I would think it takes a lonnnng time to get back to those.

Tigerliliy--you're spot on. I've been pondering what my escape plan would be when tissue fails. Am grateful to not have to make that decision this far in advance. But it has raised some questions I want to run past both surgeons.

It was sooooo hard to make that call to CC today. You would think I was marching to my execution instead of toward a life-giving procedure. The anxiety is tremendous some days.

 

[rakesh1167]

Hi Catie,
You are not marching towards your execution. I felt the same before my surgery. It is going to be all right, it is not that hard and you are going to realize this after your surgery is done.
Don't let your mind wander too far, otherwise it will make huge chain of "if", "else", "buts". What you need right now is to control your mind. I would suggest that you listen to some 528 hz music available on youtube , it helped me a lot. I also read a book called "be as you are" by ramana maharishi( i must warn that it is deep philosophy). You could try that too.

 

[Catie]

Thanks for your concern, Rakesh. Rationally, I do know it's a life-saving surgery. I do use music as a tool and have other sources to draw from

I spent many years where positivity of thinking and speaking was emphasized to the point of coercion. These days I'm more apt to authentically say, "Dang, I'm anxious!"

 

[Catie]

Murphy's Law just struck again. It has gone on. And on.

Please bear with me. I have an anxiety disorder which I cannot medicate, and dealing with my medical stuff has triggered it over and over.

After the disagreement between the local and the Cleveland clinic surgeon on whether my aortic root is involved, I sent records back up to Cleveland Clinic, requesting a consultation with a different and preferably senior surgeon, so I could get a tie-breaking 3rd opinion.

As luck would have it, today the Cleveland Clinic surgeon who did my long-distance consultation in May called me directly to give me clarification about whether my aortic root needs surgery. He reassured me about several things, including saying he remeasured my aortic root and it's normal. Exactly what he said in the long-distance written consult. He's one of their younger surgeons, but he instilled real confidence.

A half hour later I get a call from someone else at Cleveland Clinic and the woman talked so fast I could not make out either who she was or who the surgeon she represented was. But she said someone had agreed to do surgery on my aortic root and valve. She didn't mention the aneurysm, the thing that's tipping my need for surgery. It was the worst timing. I was confused and anxious and thought my records must have erroneously been sent to one of the outlying Cleveland Clinic hospitals. I said I wanted someone on Cleveland Clinic's main campus to do the surgery and to please forward my records to the surgeon who had just called me.

I then call the assistant of that surgeon, to tell her my records would be on the way. She said she just received them; they arrived from the assistant of a senior ranking surgeon in the same practice who called to try to schedule me.

Ohhhh. And the caller who turned out to be his assistant had twice said he would do aortic root surgery on me.

So the original question is back in play. Is my aortic root involved or not? And I managed to diss the assistant of one of their top surgeons. Doggone it.

***** Addendum. I have now tried to pave the way for resolution. Faxed senior surgeon and his staff a letter explaining how confused I became with not knowing who called me right after speaking with the first surgeon. I asked them to call again, now that I'm on the same page. Emailed the first surgeon's admin assistant and asked to hold off scheduling till I can hear from the staffer of the other surgeon who called.

 

[dornole]

Oh for Pete's sake . . . well even the CC is human I suppose. I doubt anybody at CC is offended . . . that's anxiety talking. They got a jillion patients, probably just going "whatever" at worst. I'm sure they see it all!

You'll get this straightened out. Nobody is doing nothin' to your body until everybody's clear and you choose them and their procedure, right?

One day at a time. Try to keep your sense of the ridiculous. This time in your life is a wringer but it will pass.

 

[Catie]

Dornole, thanks! I really appreciate your writing to me.

So, I sent that fax last night and I called this morning to the "senior" surgeon's area. The woman who answered says there is no record of that dr. or his assistants handling my records. I asked for his nurse to call me anyway, because someone from his dept. must have called me yesterday and was talking about procedures!

I have really wanted the original CC surgeon who did my remote consult to do the surgery. But twice he has said the aortic root is normal and needs no surgery. He did tell me how much riskier surgery is, if the root were involved. *sigh* The local surgeon, cardiologist and radiologist have all indicated in no uncertain terms that the root is dilated and must be replaced.

Ok, so this is an impasse. I've got to have a tiebreaker. If I don't hear from anyone tied to the CC senior surgeon by end of day tomorrow, then I need to re-request that I get a different longstanding surgeon. Those take longer to schedule, so hope it doesn't take too long so I can get my rear up there. Original surgeon from long distance consult currently has my records, after speaking with him and following the debacle yesterday.

 

[scott.eitman]

I did not have time to read all of this thread so forgive me if I write something that has been said.

First I really like and trust the CCF. Just to get the bias out of the way. Now the rest should be unbiased.

I believe that standards change. therefore, what your local Cardio and the CCF Dr are using as standards may be different. For me, my first Cardio, non-CCF, believed that I did not need surgery. However, I talked with 3 additional Dr.s (2 surgeons and a CCF Cardio) They all thought I needed surgery. Finally with the CCF Cardio I asked why and the response was simply that for patients with a less than 50% EF, we recommend surgery.

I suggest asking the CCF Dr why he beieves the root is OK given your local team believing otherwise. But before that it will be best for you the be armed with why your local team believe yours is bad.

I started trusting the CCF when the first time I called for an appointment and asked for a specific Cardio, the scheduler knew enough to redirect me to another Cardio (a valve guy). Due to insurance I am forced to go to anther facility, and I have had no such luck at the new place.

 

[Catie]

Thanks so much, Scott. If you come back this way, I'd love to hear how you liked Dr Pettersson.

Won't have access again to first surgeon who did distance consult. But I'd requested that another surgeon take a look, as it happens, Dr P, and a nurse responded with his immediate opinion that the root is involved and needs replacing, while dealing with the aneurysm. The valve, he said is borderline, which is a little perplexing. Folks here call it severe. Wants another echo.

 

[RobThatsMe]

Dr Pettersson is amazing. He performed my complex valve replacement, dissection and aneurysm surgery, and even found that I also had an aneurysm that also needed to be repaired. All the other doctors missed it. He replaced my aortic root, replaced my existed mechanical valve, and repaired the aneurysm. He also had one of his colleagues, Dr. Roselli and his team assisting. Dr. Roselli specializes in aneurysms and dissections. Both surgeons were involved with my surgery. Dr. Pettersson is an amazing surgeon.Both doctors were in surgery with me for almost 13 hrs. He has also performed VR twice on one of my best friends. You will be in good hands with one of the best with him.

 

[scott.eitman]

I'd love to hear how you liked Dr Pettersson..

Dr. Petterson is great. He is known for handling very difficult cases. I would go to him again. For that matter, I would also go to any of the CCF Surgeons. From talking with patients, they all may have a specialty, but they all seem to be able to do any procedure well. Reminder: I am biased.

 

[Catie]

Thanks so much, guys. Votes of confidence like yours are most encouraging.

Scott, not a thing in the world wrong with being favorably biased about great doctors!

Rob, looking at your bio--my word, you've been through such a series of crises and procedures. That must have been one massive surgery that Drs Pettersson and Roselli performed on you. Dr Roselli appears to have a wonderful personality on his educational videos.

Really appreciate the reassuring comments.