Consult with Cleveland Clinic January 8

[catwoman]

Much of Lorie's problem with CCF can probably be attributed to the staff, not necessarily the doctor.

My sister recently went through this with an OB/GYN. She's an RN and is in her 2nd pregnancy. She left several messages for her OB/GYN and never got a callback. Enough was enough, and she found a new OB/GYN through info gleaned from a chat room. (New OB/GYN is chief of staff at the hospital she'll deliver at.)
Then she called her now-former OB/GYN to advise her to transfer her records. When the doctor called her back to ask why, Kristi said she wasn't getting callbacks in a timely manner.

Wish doctors would realize how much damage their staffs are to the practice....

Sounds like Lorie's surgeon is on the ball. Will keep you in my thoughts as Jan. 16 draws near.

 

[shellyb]

Lorie...it's great to hear that you've got your surgeon and surgery date lined up! I wish you the best of luck!

I'm also sorry to hear that your experience with CC was not a good one. My husband's experience was the opposite. He was called back quickly and then called back by a surgeon a few days later. It only took a couple of week from his first contact with them until he was there for tests and surgery. Your file must not have gotten into the right hands.

shellyb

 

[bbb]

I had a really great experience with Cleveland Clinic, too. I sent them records over three years and when it was time for surgery, everything moved ahead pretty swiftly. Actually being there was really incredible, I felt like I was in the best hands, all around!

Betsy

 

[frank10b]

I was surpised to see this old post thread of mine resurface...the fact of the matter is I realize how busy Cleveland Clinic is and I was absolutely aware of the fact that it might take 2-3 weeks to get a response as that is what I was told by the intake nurse that I originally contacted. However, when 2 weeks became 4 and then 5 weeks and so on and when I was told every day that I would be getting a call the next day and that my file was in scheduling...well that was very frustrating. In fact, I NEVER got a call...I ended up calling them multiple times and finally got patched through to a scheduling receptionist. I NEVER spoke with a physician at all, much less the surgeon I had requested, Dr. Svensson, and what was finally scheduled was a consult only. I had already sent them all the diagnostic tests including MRI, CT scans, and echocardiograms to confirm the 5 cm aneurysm. I did not think a consult and retesting and then having to pay again to fly back for surgery was the best course of action but I was willing to do that just to be seen by the "Best".

Then a funny thing happened, at the urging of a few members on this site I went ahead and sent my records to Dr. Raissi at Cedars Sinai in Los Angeles, which is a heck of a lot closer for me....and to my surprise within days Dr. Raissi himself called me and spoke with me for over a hour. I think I knew within the first 10 mins I would go with him. Not only is he a highly respected "aortic specialist" he felt that I already met the criteria for surgery immediately and was not requiring me to fly all the way down there for a "consult" but simply stated that we could schedule consult, testing and surgery all in one trip...after all there was no disputing the fact that I have a condition that needs immediately attention.

I do know that I would have ultimately received excellent care from Cleveland but for me personally I feel that actually having the doctor contact me directly, and almost immediately after receiving my information, meant a lot to me.

So, although they are internationally acclaimed I feel that they are not above reproach and certainly could improve in the area of follow up, particularly with issues where timing can literally mean "life or death." Just my thoughts....

I am having the same problems with them and I am a previous patient. Sometimes the consult turns into a surgery the next day! This happened to me the first time, however they are very busy and they have alot of pts at the door. I know people from the hospital you are going to and i is a very good hospital , now if only we had a good hospital here in FL there would be local option for us over here.

 

[harleygirl528]

Hi Frank,

Sorry to hear that you are having problems getting a response from the Cleveland Clinic. I know it was sure frustrating for me and ultimately, thanks to some very adamant members on this site, I was urged to contact Dr. Raissi at Cedars. I am sure if you start a new post asking for referrals of other doctors in your area you will receive many. As I understand it, Cleveland Clinic has an affiliate hospital in Florida now, have you contacted them yet?

My best wishes to you as you continue your endeavor to get your issue resolved. My only advice, as I have received it so many times, it to deal with it sooner versus later. Good luck to you and hopefully you will get in with the right surgeon soon!
Take care!

 

[ALCapshaw2]

I am having the same problems with them and I am a previous patient. Sometimes the consult turns into a surgery the next day! This happened to me the first time, however they are very busy and they have alot of pts at the door. I know people from the hospital you are going to and i is a very good hospital , now if only we had a good hospital here in FL there would be local option for us over here.

Frank -

Have you contacted the Florida Branch of the Cleveland Clinic? Or SHANDS?
BOTH have received glowing reports here on VR.com

Did you look into the other Major Heart Hospitals in the SE USA such as Duke in NC, Emory in Atlanta, UAB in Birmingham AL?

'AL Capshaw'

 

[Ross]

So, although they are internationally acclaimed I feel that they are not above reproach and certainly could improve in the area of follow up, particularly with issues where timing can literally mean "life or death." Just my thoughts....

Oh I agree with you 100%. I think most everyone here that's ever dealt with them feels the same.

 

[frank10b]

Thank you for all of your help and support. I had two stays in Oct and Dec at the FL CCF hospital and that is why I am so discouraged becaue they are themsleves confused by the actions of OH. The hospitalists have recommended that I just go to cleveland and if I get sick, CHF maybe, enter thru the ER forcing them to act. I did have an appointment with a cardiologist there in Dec but at that time I actually thought that they would put me on the schedual, however that is apparently not happening. Now my cardiologist at CCF FL is not getting back to me!

I am not really tilting towards the SE as I live in the far SE but really know no facilities here. I dont know of anyplace in FL I would want to go. I really want a high volume center but also one with a good hospital - hence the concerns about MGH. I have appointments to dealwith the pulminary hypertension but with a BP of 90/58 no one is going to do anything about that, plus to get out of bed is really such a struggle I would really like to make one last attempt to get this repaired or just forget it. thanks