Cleveland Clinic Questions

[Croooser]

Thanks for all of the replies. They are much appreciated. I especially found the info on how to get started with CC helpful. Since I will be 71 in a few weeks and it seems that the majority of 1st time valve surgeries occur at an earlier age, I will update my experience as a data point for older patients as well as those interested in the CC experience.

Update on my situation:

I assembled and forwarded my medical history and test results and images to Dr. Douglas Johnston's office with a request for a second opinion on whether or not surgery is recommended at this time and if he would be willing to perform surgery, if required.

After a little less than 2 weeks, his pre-op nurse, Ginger, called me and informed me that he does recommend proceeding with the surgery, that he is willing to perform it and that she was prepared to schedule it with me if I was ready to do that.

I agreed and have a surgery date of July 15th with the 3 prior days for testing and consults which is their standard for out of town patients who would like to make 1 trip to Cleveland. The pre-op process does include a catherization.

Ginger was unable to provide any details for the surgery other than Dr. Johnston believes that he may be able to do both the valve and aneurysm with a mini sternotomy. Selection of valve, final decision on incision and other details are subject to test results and a consult with Dr. Johnston on the day prior to surgery. Based on comments by others on here, that seems to be SOP at CC.

The Clinic has set me up as a patient and given me My Chart access which I familiar with from the clinic where my PCP is. All of my tests and appointments are already scheduled and appear on My Chart.

My research indicates that tissue valves typically last longer in older patients than younger patients. With that in mind, I am leaning toward a tissue choice - perhaps the Inspiris Resilia. If all goes well and I get quite a few years from a tissue valve, I should not require another surgery in my lifetime. There is good news and bad news both in that.

I will provide further updates as I proceed.

 

[BillDaThrill]

Wow, a mini for both replacements - that's awesome! I am 6 days out from surgery with Dr. Svensson at the Cleveland Clinic and I as of yet, do not know of anything beyond needing both replacements myself. My out-of-town (New Mexico) schedule with the pre-op stuff sounds the same. I agree with your interest in the Inspiris Resilia, seems like a great choice for you. I expect to get an On-X mechanical valve. Best of luck to you Croooser!

 

[KatherineA]

Hi @Croooser ! Wishing you all the best!
Your setup with the tests and surgery at Cleveland is the same as mine was! It was amazing how organized and smooth all the preliminary tests and surgery day activities were.

I too was “of the age” for the first valve surgery at 70. 71 now. I too decided on the same valve as you for the same reasons plus macular degeneration and my need for magnesium in particular.

I also had the aorta repaired/reduced and a mini and out of the hospital day 4.
With a few days in a nearby motel before heading back to WV.

 

[afraidofsurgery]

Hey CC Team, I'm traveling to Cleveland for a pre-surgery workup for aortic aneurism (sans angiogram) and my experience is the same with procedures. I sent my most recent CT scan and echo to Dr S and he recommended surgery but I want to have their fancy CT with contrast and gating done so I can get a clearer picture of what's happening. My last CT scan caused some discussion at Rush as to whether the diameter was now 5.5 or had not changed -- this seemed a bit suspicious to me and sent me looking for a more informed opinion. I haven't decided to schedule the surgery yet, I know this sounds silly but it seems rather inconvenient... I'm laughing at myself but since I otherwise feel great it's kind of challenging for me to acknowledge this needs attention. In any case I wanted to say thanks to the site for all the info on CC I'm looking forward to my workup on Monday.

 

[Croooser]

Hi Bill,

I received my Fedex prep package yesterday and am going to sort through it this weekend. Made hotel reservation yesterday.

I think that I confused "small incision" with mini in my conversation with Dr. Johnston's nurse. Upon further review, it looks like I might receive a J incision.

I assume that you have seen this video? At about the 4:45 mark he discusses options for incisions.




I believe that all of the details of the surgery are pending evaluation of all of the test results. So, hopefully we both get what we are hoping for/expect.

So, 6 days from yesterday has you in the OR on Thursday? I look forward to hearing about your experience.

Best wishes for a successful surgery and recovery with no complications.

Mike

 

[Croooser]

Hi Katherine,

Thanks for posting your experience. I am encouraged that with the same basic condition and age, you had a good experience and outcome.

 

[Croooser]

Hi Patty,

Will be interesting to hear your impressions and what you decide.

 

[Unicusp]

I think that I confused "small incision" with mini in my conversation with Dr. Johnston's nurse. Upon further review, it looks like I might receive a J incision.

Hello. Yes, the "J" incision is the mini-sternotomy. Dr. Svensson calls it a trap door. I had that done back in 2013 (to replace enlarged ascending aorta). After surgery, I could see the vertical line (very small) but never could see the horizonal part of the J.
That scar disappeared very quickly. Unlike my full sternotomy scar from February. Healing and looking good but still visible.
On valve selection, I suggest that you continue your research. The Resilia is still new, out a few years now, so no long term data. It seems to be the preferred suggested tissue valve by surgeons today. They have alot of hope for it, and that it "may" last up to 20 years in some people.
When I discussed and pressed this issue with Dr. Svensson, he said in me realistically he would predict 8 years.
I chose the On-X mechanical with no regrets.
Good luck with your decision. It is a tough one! You are in one of the best places to get this done. They have much practice!

 

[bizinsider]

My surgery was a year and a half ago and Dr. S chose an older tissue valve, which I found interesting b/c he was lead investigator (I believe) on the Resilia. I believe lots of factors go into it. I did not question his choice. He said it would probably last 8-12 years (I was highly calcified) and sized the new valve for a fingers-crossed TAVR replacement in the future. At that point, based on the right-bundle block that I have, most cardiologists seem to think I will also need a pacemaker. Apparently the way they do the procedure impacts that part of the electrical current. Anyway, regardless of the incision, you are in the best of care and it sounds like your head is in the right place. To paraphrase Unicusp (and steal from one of Dr Johnston's excellent "what to expect" videos): This is their day job, and quite a few of them do it 2x a day!

 

[esvaja]

I had my surgery for AVR, 2 CABG & a mitral valve repair at CC 4/20. I have no idea what went wrong but the intake Dr Collier was very arrogant & insulting when I tried to change surgeons (he recommended Dr Pettersson) Before they put me under I had an assistant reprimand me for my confusion regarding sternal closure) & I never met with the team before or afterwards. Covid? Unfortunately they were nursing short staffed due to covid. I was fortunate that I knew my way around from my 1st one in 2011. I think you are on the right track with the surgeons mentioned & demand excellence from CC because they can provide it.

 

[BillDaThrill]

Hi Bill,

I received my Fedex prep package yesterday and am going to sort through it this weekend. Made hotel reservation yesterday.

I think that I confused "small incision" with mini in my conversation with Dr. Johnston's nurse. Upon further review, it looks like I might receive a J incision.

I assume that you have seen this video? At about the 4:45 mark he discusses options for incisions.




I believe that all of the details of the surgery are pending evaluation of all of the test results. So, hopefully we both get what we are hoping for/expect.

So, 6 days from yesterday has you in the OR on Thursday? I look forward to hearing about your experience.

Best wishes for a successful surgery and recovery with no complications.

Mike

Exactly this Thursday for surgery day. Just checked into our hotel (Tudor Arms, we switch to the Intercontinental post-surgery) and about to walk around the campus for the first time. Initial impression: MASSIVE! Thank you for the well wishes!

 

[Unicusp]

Exactly this Thursday for surgery day. Just checked into our hotel (Tudor Arms, we switch to the Intercontinental post-surgery) and about to walk around the campus for the first time. Initial impression: MASSIVE! Thank you for the well wishes!

Exactly. Very nice large facility. Much room for walking. Enjoy and good luck!

 

[BillDaThrill]

Thanks Unicusp, appreciate that!

 

[Peej]

Another lurker and also headed to Cleveland September for a date with Dr Pettersson. I knew I'd have to have surgery someday and it's here at age 42. Good luck and thanks to all who have shared information.

 

[Chuck C]

In my pre-surgery due diligence I watched many online videos with Dr. Doug Johnson. Dr. Johnson comes across as extremely competent and very personable.

Dr. Johnston believes that he may be able to do both the valve and aneurysm with a mini sternotomy

11 weeks ago today I had both my aortic valve and aneurysm taken care of with a mini sternotomy at UCLA. It is amazing the work that they can do through that small opening. I believe the procedure that you will have is called a Bentall Procedure.

Good luck with your surgery.
Please keep us posted on your journey.

 

[Chuck C]

My research indicates that tissue valves typically last longer in older patients than younger patients. With that in mind, I am leaning toward a tissue choice - perhaps the Inspiris Resilia

True. The older one gets, the more reasonable it becomes to choose a tissue valve. If one is going to go tissue, the Resilia seems like a good choice based on the hope that it will be more resistant to calcification than other tissue valves.

 

[Chuck C]

Another lurker and also headed to Cleveland September for a date with Dr Pettersson. I knew I'd have to have surgery someday and it's here at age 42. Good luck and thanks to all who have shared information.

Welcome to the forum Peej and please keep us posted.

 

[Croooser]

At CC. Day1 test day. Tomorrow Cath day. Wed consult day. Thurs surgery with Dr. Johnston.

 

[Chuck C]

At CC. Day1 test day. Tomorrow Cath day. Wed consult day. Thurs surgery with Dr. Johnston.

Good luck Crooser!
Please keep us posted on your recovery.

 

[Keithl]

At CC. Day1 test day. Tomorrow Cath day. Wed consult day. Thurs surgery with Dr. Johnston.

Good luck, you are in great hands they are a well oiled machine there. I kid the wife we should retire to that area to be close to such excellent medical care.