Cleveland Clinic Questions

[Croooser]

Long time intermittent lurker, first time poster.

About me: 70 y/o male. 5'10" 220 lbs. High BP and cholesterol treated successfully with prescription meds. Chronic cluster headaches treated successfully with verapamil which is one of 2 BP meds that I take. Otherwise in good health with only occasional minor complaints - acid reflux, skin cancer, etc.

Aortic Stenosis with AVA trending from 1.8 in 2003 to .90 at present. Aortic aneurysm stable at 4.9 for last 5 years. Symptoms: shortness of breath on exertion - e.g. climbing stairs but still able to walk 3 miles/day at 3mph with no shortness of breath or angina, persistent fatigue but If I have something to do, some place to go, I manage just fine. No chest pain or angina.

After consulting with my cardiologist (as well as monitoring comments on this site and watching some CC videos), I am interested in contacting the CC to consult on my condition and whether or not they recommend surgery at this time. My cardiologist thinks it's time. Although he has a local surgeon that he recommends highly, upon further questioning, he acknowledged that CC is the best because they not only have excellent surgeons but also the rest of the team and facilities. And that they are geared to out of town patients. I asked him where he would send his wife if she had my condition and test results and he said CC. And he said that he would send her now.

My questions for those who have had contact with CC:

1) Did you seek out a specific surgeon by contacting his office or did you leave it up to CC to select someone of their choosing?

2) Did you make contact by calling in to a surgeon's office or one of the phone numbers that they post on their website or videos?

3) Did they have you do a testing visit first or did they do a Video consult or...?

Thanks in advance for any info.

 

[MarkZ]

I’ve spent the past two days visiting CC so I can answer what I did. Others may differ. I initiated contact using an online form on the website, which had an entry for which surgeon you prefer. They called back IIRC with the surgeon’s office assistant setting things up. I needed to send my records and echo + CTA images to them, which was easy because the place I had those done was also an Epic shop so they could send electronically. After that, I got a call back from an NP saying “Dr Svensson doesn’t do video calls but is asking me to recommend this particular type of surgery and valve and I can answer any questions you have in the meantime.” She also offered that I take a presurgical visit to CC where I can get all tests done including required blood tests, new echo, ekg, etc as well as meet with a CC cardiologist and Dr Svensson. That’s where I am right now. Cath is tomorrow. Different surgeons will likely have different ways of doing it. They also said I could get the cath done locally instead if I preferred and didn’t need to meet with the surgeon first.

 

[Unicusp]

Hello. Welcome to the fun times. As Mark mentioned, I also strongly recommend Dr. Lars Svensson. I was just there in February for surgery with him. He is one of the best with lots of practice. Here is the link. Click on Request an Appointment. Top Cardiologists & Surgeons | Cleveland Clinic

The CC likes to do its own testing. So, even if you send them the best test results, they will re-do them all. They do very comprehensive cardiac echo's. How far are you from the CC? If far, they typically will schedule everything (from testing to surgery) in one visit. Of course, assuming they agree you need surgery now. Best to start with a phone consultation with his assistant to determine the next best steps to take.
Based upon what you wrote above, I predict they will recommend surgery sooner than later. Better when you are healthier, and your quality of life will improve afterward. You will then be saying to yourself, "I should have done this sooner".
Good luck and keep us updated.

 

[Croooser]

Hi Mark and Uni,

Thanks very much for your prompt responses. That is exactly what I was looking for. I have submitted a request requesting Dr. Johnston based on some of his videos. I will provide updates as I hear back.

Thanks again,

Mike

 

[Amy]

Hi,

I’m one month post-op and had my AVR and ascending aorta resection done at CC.

I contacted a nurse here to get basic information. She said you could be assigned a surgeon, or choose. I let them assign one to see who it’d be, then ended up requesting someone else because it didn’t seem (from what I could gather from the cc site) he had as much experience doing AVRs.

I thought I heard from someone on here that Dr Johnston books months out... but maybe that was Roselli or Gillinov. There is a Dr Unai who I heard on here is good, and has great bedside manner, which may be difficult to find in the others.

I never did a video consult at all before flying there; all questions were answered, or rather, brushed aside with vague, noncommittal answers by the surgeon’s assistant. Didn’t meet the surgeon till the day before surgery.

 

[Keithl]

I knew for years I would eventually need OHS so did my homework. It has now been just over 2 years. I started by researching their doctors online. Some of their doctors only do certain types of heavy procedures. When I first called in they ask if you want a specific doctor or just whoever they feel is the right fit. I opted for them to take first pass as you can change you mind. They set me up with Dr. Unai. I had consult with his nurse after sending all my records. You will need a current catscan or MRI that is within 6 months typically. After the first consult I then asked for a second with Dr. Roselle. My research showed not were extremely good. Roselle specialized and only did my type of surgery, but was booked out 6 months. I spoke to Dr. Unai’s nurse numerous times asked a ton of questions and eventually booked with Unai. Their process is great and like a machine. I met the doctor the day before the surgery and after talking to him knew I made the right decision. He was amazing and my surgery and recovery (read my other posts) was amazing. Cleveland Clinic is an amazing place. After my 12 week scan (back in ATL) that was sent to CC, Unai called me to check in on me and discuss my scan. What impressed me is he noticed nodules on my lungs and brought that to my attention, but also stated they were very small and don’t look like anything, but to keep an eye on them as I get older.

To contact them go to their website, they have a process on there and a number you can call and they will help walk your through the process.

one other great advantage of CC is unlike some hospitals were every doctors is and independent and you get bills from hospital, doctor anesthesiologist, etc, CC is the singled biller as all the people work for them. No hidden surprise bills by someone that may be out of network. I kid with my wife as much as I have no desire to live in OH, as I get older the appeal of being near a facility like CC is very enticing.

 

[Croooser]

Amy and Keith,

Thanks for your responses. It's helpful and I appreciate it. I have made an initial contact via the web request tool. Waiting for a response.

 

[afraidofsurgery]

I have to thank the group for the Cleveland Clinic recommendations. I didn't get a response from the web form so I called there and a really helpful nurse answered my questions. I just uploaded my CT scans and Dr. Lars Svensson is going to take a look for a 2nd opinion. My team at Rush is a bit less than helpful at explaining the risks and criteria for surgery to me so I'm looking forward to an expert's opinion. I went through the anxiety of 6- or 12-month echoes with surgery/no surgery decision points after every study so I'm hoping I can avoid that with my ascending aortic aneurism. I'm at 5.2 so am in that 'grey' area.

 

[BillDaThrill]

I head to Cleveland in 30 days -- pending valve and ascending aorta replacements -- and whatever else the cath reveals. So far, the CC seems very well organized as I have ~15 appointments scheduled in the 3 days prior to surgery. I asked for Dr. Svensson and am thrilled to have him as my surgeon. Have heard great things about him and the other CC surgeons mentioned prior. Recently was told that both Dr. Svennson and Dr. Roselli served as the recent surgeries for Schwarzennegger and Lundquist. That was reassuring to me knowing that they could go to any surgeon/hospital in the US - and that is who they selected. Wishing you the best going forward!!!

 

[bizinsider]

My surgery with Dr. Svensson was a year ago March. Everybody has their favorites there (the one who did their surgery!) I flew in from San Diego via LAX pre-Covid. Two trips - the first for the pre-visit and tests. The main event was a month later. The scar is fading. If it wasn't there I wouldn't know I had so much done. You will be in great hands. Cheers, Herb

 

[Croooser]

Bill,

Sounds like you right on track. I will be watching for your updates. Best wishes for a totally successful surgery.

Biz,

No question that CC is the world class place to go and that almost everyone who has been there and posts here is positive. Thanks for your input.

I am in the process of assembling the medical history that CC has requested. Hope to be able to send it to them next week.

Mike

 

[caro]

Hi, @Croooser ! You'll be in great hands at CC. Dr. Johnston was my surgeon last year. Met with him December of 2019 for tests and consultation. Surgery was February 2020.

 

[Croooser]

Hi Caro,

Thanks for adding your input. It is helpful and appreciated.

 

[gpr100rs]

On 4-13-21 I had AVR (25 mm Edwards Inpiris Resilia), aorta graft and CABG done at CC by Dr. Aaron Weiss with Dr. Roselli assisting. I had originally sought out Dr. Roselli, but he was booking several months into the future and he suggested not waiting given my small valve area and terrible gradients (mean 50 peak 129). He recommended Dr. Weiss who was great. He's under 40, but very skilled and compassionate. He came to visit me every day and would give me as much time as I needed to chat and answer questions. Our first meeting was via video and we spoke for 45 minutes. I was a little hesitant given he wasn't one of the CC super stars, but he quickly put my mind at ease and I felt I would get more personal attention. In time, he will be one of their stars.
I'm not a doctor and know little about you, but they will likely recommend an aorta graft. Typically, anything 4.5 or above, they will do a graft. Mine was 4.6, and had been stable for years. Also, my LVAD was 60-70% blocked, so I had a bypass. BTW, like you, I really had no symptoms, but the numbers don't lie.
My CC criticisms: It's a big, crowded facility. Valet parking can be challenging, not unusual you will wait 45 minutes to get your car. We rented a house about 10 minutes away. There are hotels within walking distance and there are shuttles. So yes, very convenient for the out-of-towners. ICU was like romper room, young nurses, docs, etc. who, at 3 am, act like it's the middle of the day with their loud talk, laughing, etc. Every blood draw, which occurs several times a day post-surgery, was a challenge, one took over an hour with multiple pokes. The ulnar nerve in my right arm was compressed during the surgery and nearly 5 weeks post, I am still dealing with significant pain in my right pinkey and ring finger and palm. I've consulted with a specialist who wants to give it another 30 days to see if it starts resolving. This has been by far my biggest pain issue - sternum has been fine. And perhaps most importantly, my cardiac function is great; 65 bpm, 120/80 BP; peak 17 mean 5. So all good there.
I think the main reason to choose CC over any other facility is the surgical team, certainly one of the best in the world. I had treated with a cardiologist at the Univ of Mich, but chose CC for the surgery. Yes there were issues, but I would highly recommend them. Best of luck.

 

[Keithl]

On 4-13-21 I had AVR (25 mm Edwards Inpiris Resilia), aorta graft and CABG done at CC by Dr. Aaron Weiss with Dr. Roselli assisting. I had originally sought out Dr. Roselli, but he was booking several months into the future and he suggested not waiting given my small valve area and terrible gradients (mean 50 peak 129). He recommended Dr. Weiss who was great. He's under 40, but very skilled and compassionate. He came to visit me every day and would give me as much time as I needed to chat and answer questions. Our first meeting was via video and we spoke for 45 minutes. I was a little hesitant given he wasn't one of the CC super stars, but he quickly put my mind at ease and I felt I would get more personal attention. In time, he will be one of their stars.
I'm not a doctor and know little about you, but they will likely recommend an aorta graft. Typically, anything 4.5 or above, they will do a graft. Mine was 4.6, and had been stable for years. Also, my LVAD was 60-70% blocked, so I had a bypass. BTW, like you, I really had no symptoms, but the numbers don't lie.
My CC criticisms: It's a big, crowded facility. Valet parking can be challenging, not unusual you will wait 45 minutes to get your car. We rented a house about 10 minutes away. There are hotels within walking distance and there are shuttles. So yes, very convenient for the out-of-towners. ICU was like romper room, young nurses, docs, etc. who, at 3 am, act like it's the middle of the day with their loud talk, laughing, etc. Every blood draw, which occurs several times a day post-surgery, was a challenge, one took over an hour with multiple pokes. The ulnar nerve in my right arm was compressed during the surgery and nearly 5 weeks post, I am still dealing with significant pain in my right pinkey and ring finger and palm. I've consulted with a specialist who wants to give it another 30 days to see if it starts resolving. This has been by far my biggest pain issue - sternum has been fine. And perhaps most importantly, my cardiac function is great; 65 bpm, 120/80 BP; peak 17 mean 5. So all good there.
I think the main reason to choose CC over any other facility is the surgical team, certainly one of the best in the world. I had treated with a cardiologist at the Univ of Mich, but chose CC for the surgery. Yes there were issues, but I would highly recommend them. Best of luck.

I am surprised they were poking you. First few days they took blood from a tap they had in my left arm it was only after they took that out that they had to poke for blood. While your DR was not one if the supposed super stars, CC has some strict criteria so I think anyone there is likely better than some other hospitals super stars

 

[Croooser]

gpr100rs,

Thanks very much for your detailed response. It is very helpful.

Yours is not the first post here that did not rate the atmosphere in the ICU highly. Would ear plugs be an option or would that not be advisable the first few days post op?

Sorry to hear about the nerve issue in your arm? Do you think that was a procedure error or is it a somewhat common occurrence related to how they have to handle a patient during/after surgery?

 

[Keithl]

I had ear plus, but honestly I was so,out of it I did not use them. I come out of anesthesia badly so i just laid there. I was so dizzy and nauseous I could not move my head without feeling like I was throw up. I do remember occasionally waking up to code blues. If you think you will be awake,bring ear pugs, but I think they had them as well.

 

[gpr100rs]

gpr100rs,

Thanks very much for your detailed response. It is very helpful.

Yours is not the first post here that did not rate the atmosphere in the ICU highly. Would ear plugs be an option or would that not be advisable the first few days post op?

Sorry to hear about the nerve issue in your arm? Do you think that was a procedure error or is it a somewhat common occurrence related to how they have to handle a patient during/after surgery?

Ulnar nerve injuries are a recognized complication, but especially where the arm is not properly positioned and is then held in that position for several hours. This is very basic and something I would have expected the anesthesiologist to have gotten right or, minimally, monitored and made appropriate adjustments.
As far as ear plugs, certainly worth having a trying. Best of luck!

 

[Cactus52]

I remember a lot going on but I think I was out of it and I actually enjoyed watching what was happening, but my sleep was not bothered by any of it. The first night and day they drew blood from my neck until they pulled that port out then it was just a arm stick.

 

[Amy]

Earplugs were good to have in the step down unit, too, along with an eye mask. I was glad people here recommended them to me.

Also I hung wet washcloths and towels along the rails by the windows, it was so dry in the room.

And ask your np or md to order bundle care to avoid the awful phlebotomy ‘nurses’ in the middle of the night.

And if you need a heating pad for pain keep asking till you get the proper one that plugs in and lasts more than 3 minutes.

good luck to you.