Consult with Cleveland Clinic January 8

[harleygirl528]

Well, after waiting over a month, I finally was able to schedule a consult with Dr. Svensson at Cleveland Clinic for January 8! I was extremely frustrated with the entire experience and the "run around" I received from the people I spoke with who kept promising I would get a call back next week, next week, and even yesterday I was told I would hear by today...as it was approaching 5 pm EST I called and insisted on speaking with someone. They said that Dr. Svensson wanted additional testing and a full consult with me. I asked her if it could all be done in one day and she assured me it could...I need to arrive on Jan 7 because my lab work and testing will start at 7:30 am. I am hoping that the hassle and problems I had had in simply getting a consult isn't an indication of my treatment there...I know they are "the best" but I certainly haven't experienced that yet.
In the meantime, I have also called Dr. Raissi's office at Cedars Sanai in Los Angeles. I am sending my records to them as well and hopefully will be able to consult with Dr. Raissi soon. I have heard wonderful things about Dr. Raissi and certainly being on the west coast would be easier for me and my family in terms of travel arrangements.
The whole thing is starting to make me nervous! Waiting for months when I know I have an aneurysm that is 5.0 cm doesn't seem to be the best course of action. I am feeling somewhat symptomatic with twinges and tightness into my upper neck and jaw area, continued back pain (which my ortho speculates may be related to the aneurysm) and the only thing I am doing now is taking a beta blocker and "taking it easy." As a result, I have gained weight and the stress is taking its toll on my family. I am irritable and frustrated...I was a very independent person who could lift or move just about anything, I ride a 800 lb Harley, and didn't really depend on anyone for anything...if I needed something done I did it...now I am afraid to lift anything, push or move anything, etc. I am ready to get this show on the road! Does anyone find it odd that with a 5 cm aneurysm in a woman who is 5'7" that no one seems to feel a sense of urgency in operating? Not that I am eager to get my chest cracked open but I am eager to start healing and get back to a more normal life...the sooner I get it done the sooner I get better...living in limbo and being extra cautious about everything is really getting old! So I guess these doctors must know what they are talking about when they say I am fine for now and reevaluate in January.
Sorry for venting...just getting frustrated and ready to move on with things!

 

[Phyllis]

Lorie, I am glad you finally have an appt. at Cleveland and another one in the works for Cedars. It may seem like everything is taking forever, but you are doing your homework and getting opinions from the best so you will be a well-informed patient and better off for it. The waiting is the hardest so vent all you want- we're here 24/7.

 

[psalmist]

keep your chin up

keep your chin up

I am 9 weeks post op. I remember the whole pre-op all too well. I would say I averaged around 193 lbs and decided to loose weight. (i was tired all the time so I ate to get energy). . . i thought it was stress. I lost to 183 and was happy go lucky. I went to a doctor for a hand rash and he said, "WoW! That doesn't sound right." Next thing you know I was on my way for surgery. Oh yeah. I was so terrified of doing anything. I gained all that weight back and then some. I feel great. I will tell you. For me the mental burden of needing heart surgery was alot worse than the actual thing. I only took tylenol after leaving the hospital. And Number 1 would probably shine through in your care. It is different for everyone but I am sure you will fly through it with ease. Keep your chin up! It will pass. God bless, Seth

 

[Kate]

Hi Lorie,
I'm sorry you are feeling frustated and scared. I truly understand how you feel. Two years ago, I was in the same boat - 4.8cm aneurysm at 5 foot 3, terrified, waiting for the Cleveland Clinic to get around to calling me back.

Two things I want to share to hopefully make you feel a little better. First, although not always quick to return phone calls, the Cleveland Clinic consistently exceeded my expectations when it came to the care that I received, particularly when I was being tested prior to surgery and during my recovery afterwards. Dr. Svennson was my surgeon as well and, although I didn't spend much time with him, I felt like he was truly listening to me during our consult and he stayed with me until every one of my questions was answered. I'm sure Cedar Sinai would also provide terrific care, but I just wanted you to know that the Cleveland Clinic is better in person than it seems when trying to get an appointment. (This isn't meant to excuse the run-around you've received so far. It's not right and they need to figure out how to be better in that regard.)

The second thing is that, although I know how terrifying it is to have that aneurysm inside you that could theoretically go at any time, the odds are very much in your favor. I agree that at 5cm it is time to have it taken care of and I'd be pushing for surgery too. However, when you look at statistics, the chances of it giving way on you over the next 12 months are actually very slim, especially if you are being careful not to lift things, keep your blood pressure low, etc. The studies I've looked at suggest that the risk is well under 10%. Of course, as people often point out on this site, the statistics don't mean anything if you're the unlucky one or two in a hundred. However, I think it is important to keep in mind, as you do everything in your power to get this surgery taken care of in a timely manner, that odds are on your side. In my opinion, you are making a wise bet when you wait a few weeks longer to ensure that your surgery can be done at an experienced center like Cedar Sinai or Cleveland Clinic.

Hang in there for a little bit longer and there is every reason to believe you'll successfully make it to the other side of the mountain. I'm not going to tell you not to be scared, because it is only reasonable that you would be, but keep taking care of yourself. Best, Kate

 

[harleygirl528]

Thanks everyone for your words or encouragement...I know that I am doing all that I can right now but sometimes when I hear from Ross and others about doing it now, now, now....it makes me nervous because I am moving as fast as I can. I did meet with my new cardio yesterday and I really, really like him. It was kinda interesting though...I actually seemed to know more about my upcoming procedure than he did! But, at least he freely admitted his lack of knowledge and did promise to do some research for me and to look at my films...he actually called me at home later that night and said that after reviewing my echo....he thought he saw 3 cusps! I was only told "probable bicuspid" valve....and it was assumed that it was such since I had the aneurysm...but I specifically remember when I was first diagnosed with the aortic regurgitation 7 years ago the echo technician showing me my "3" cusps and the leakage. He also put me in touch with another cardio who is actually a surgeon...not as a potential surgeon...but just someone for me to consult with who may be more qualified to answer some of my questions and be there for follow up. Is it possible to have a tricuspid valve and aneurysm? Also, if it is tricuspid would it increase the likelihood of salvageing my native valve?

I have gone back through some old threads and did a search on Dr. Raissi and he sounds really wonderful...I think if I consult with both of them I will be well served either way and it will just boil down to who I feel better about...for some reason I just feel that I will know it when I meet the right surgeon....and I am fairly certain I have not met him yet!

Thanks again everyone!

 

[WayneGM]

Glad to hear you got your appointment with Dr. Svensson at Cleveland Clinic. From what I've read, you'll be in good hands. If I learned anything from this OHS thing, it's patience....nothing seem to go as fast as you'd like. Hang in there. Best wishes.

 

[francie12]

One thing I've noticed from watching and asking questions at quite a few echos now is that a BAV (at least my son's BAV) really does look as though it has three cusps...until you see it move from the right angle. The key thing is to look for three cusps when they are open to their fullest extent.

 

[Marguerite53]

Hi Lorie. Weekends are bad for me as it is family time and I can't get away to the computer as much. I'm sorry I'm not posting until now. I'm sorry that you are so frustrated. We ALL know what that feels like, if that is any comfort to you.

There are particulars to your condition that are best left to experts who truly and completely understand them. The surgeons.

Currently, our rather new member, bbb, is 2 days out of her surgery for an aneurysm (maybe if I'd had one I'd know how to spell it!!) at Cleveland Clinic. My understanding of her situation was that she made a tentative surgery date and then arrived several days early, did all the preliminary testing and then Dr. Svennson went to work. I guess I'm not sure why you can't arrange the same kind of thing. Either at Cedars or at CC. Maybe that's what is slowing things down. That you are just going in for evaluation and not actually signing up for the surgery. Do you see what I might mean here? Sometimes receptionists/schedulers have different agendas and if every Tom, **** and Harry wants an illustrious CC opinion....well, maybe there is a back-up of requests. But if you want the actual surgery...maybe it's different.

As far as your feeling of imminent danger.....really, it's what we all tend to feel. Yes, you have more of a time bomb in you than many of us did, but the fact that so many true professionals have told you that it is okay to wait through the holidays...well, you should probably just try to believe them. For me, there were many sleepless nights where I cried quietly by myself, and did a lot of writing. I just wrote to my family...the just in case things....the if I die before I wake things. It really helped to comfort me to know that my feelings and thoughts were there if for some stupid reason, I wasn't, the next morning.

Of course you are a strong and independant woman. Please try to get your arms around the true notion that this is all so very temporary. Once your are fixed and healed....you will probably be back to your normal routines and extravagances. Right now, though, well.....it's like when we were pregnant.....we didn't drink liquor....we didn't drink caffeine.....we didn't lift heavy things......we had someone else to think about. There is a lovely woman from Australia here named Tonia (Aussigal). She and I went through our surgeries just a day apart. We "held hands" up to the last minute. She had an aneurysm (and she had an unusually rough go of the surgery, so don't go reading up on her!!! She's very well and fine, now!!!). She always called that aneruysm "her Annie". Well. Maybe that was helpful to her so that she could keep it separate from herself and be respectful of it. And because she knew that it really wasn't meant to be a part of her and would soon be gone.

I don't know if any of this is helpful to you. I hope so. Please know that we are all here and in so many ways, have been through the same kinds of feelings which you are experiencing. PLEASE use us any time for any kind of venting. We can probably understand you somewhat better than your family does right now. I know they are trying. It is a very lonely journey. But you're not alone here!!

Best wishes.

Marguerite

 

[Blnmakerr]

Lorie:
I too had a great deal of difficulty setting up an appointment with Dr. Svensson. After five weeks and dozens of calls to Rhonda and Barbara, I was able to set up an appointment only after an additional Echo was performed.

Once the appointment was made, I was told that some pre-op tests would be required. It took three days to complete the pre-op testing. The pre-op tests showed that my aortic valve was indeed biscuspid and that the opening was down to just 0.53.. Surgery was then scheduled for the following week.

For all the difficulty in getting the appointment with Dr. Svensson, I am convinced his surgical expertise contributed to my speedy and uneventful recovery. Dr. Svensson is one of the best in the world and CCF is one of the best cardiac facilities in the world.

Best of luck and keep us informed as to your decisions.

 

[MikeHeim]

Getting a surgical consult can be an extremely lengthly and frustrating process, but there is one good side to what you are experiencing - YOUR SURGEON IS IN DEMAND! I personally would have been much more worried if I would have had no problems getting into the schedule. As it was, it took me about six weeks to get the consult, but I was able to get my surgery only about two weeks later.

 

[njean]

Lorie, I am glad you finally have an appt. at Cleveland and another one in the works for Cedars. It may seem like everything is taking forever, but you are doing your homework and getting opinions from the best so you will be a well-informed patient and better off for it. The waiting is the hardest so vent all you want- we're here 24/7.

Dear Lorie & Phyllis,

The waiting period is the hardest time that a person anticipating surgery can go through! You feel like a "condemned person" waiting for "the day!" (I remember having to waiting 8 months before I had my first AVR & MVR in 1975 -- I only wish there had been a forum like this where I could have vented & relayed my fears!")

I'm so glad that you finally have your appointment scheduled in Cleveland Lorie & also getting a 2nd opinion in CA. Best of luck to you & hang in there. It will get here soon enough!

 

[tcopel]

Its is hard balancing the urgency of getting the aneursym addressed as quickly as possible given the consequences of a rupture vs jumping blindly into someones inexperinced hands and having a bad outcome. On a previous thread of yours, I mentioned that it took me several months to get comfortable with my choices. I had a 5.8 cm aneursym. I not saying that was right thing to do because of the risk...but for me, it turned out to be good. I guess that doesnt really help you other than to say I know exactly how fustrating it is to put your life on hold. I even had one doctor tell me not to strain while on the toilet so I felt like I was walking on eggshells all time.

About the the possibility of having three leaflets, that is something to ask about as it MAY be a possibility of having the David procedure. Having three leafets allowed my surgeon to repair the aortic valve and insert it within the dacron graft. The good thing about the procedure is that you have your native valve of course, and there is no need for anticoagulation. Multiple studies suggest that there is a 90% chance of being viable for l0 years.
The down side is that they have been doing them for about 10 to 15 years so it isnt known how long they may effective. Maybe 10 years, maybe a life time.
My surgery was May of this year. I just got back from playing full court basketball just now before I read your post so it has worked for me (although being a 52 year old man, I think I think I should learn something a little less taxing, like golf). Anyway, that is just something you can ask your doctors about.

Just wanted to tell you to hang in there. Have faith that all will be well.

 

[frank10b]

Nice to know that I am not the only one waiting on the CCF to give me an appointment. After having been a previous patient who was invited to return at anytime for the redo I have been much surprised at the length of time I am having to wait for an app.

 

[Bionic Man]

Gotta fight for yourself

Gotta fight for yourself

I found out after a while that you really have to fight for yourself sometimes to get the care you need. Everyone has good intentions but we're all human. Thankfully when surgeons get you on their patient list you are suddenly much more important and things get done. Not to mention when they're in the OR they really are awsome at what they do. I don't think any other profession on the planet deserves the big bucks like heart surgeons do.

I'm glad you're getting help at Cleveland Clinic. They're awsome there so I hear.

David

 

[Ross]

Hon I'm sorry if I make it sound so urgent, but fact of the matter is, these things have minds of their own and can grow and burst very suddenly. If there were a sure fire way to tell your safe, I'd be the first one telling you. I can only tell you what it's like when it does rupture and that is something no one should have to endure.

If or when you go to Cleveland, they'll have your moving your butt off from the moment your registered until the end of the day. They'll give you a schedule much like high school to follow. Word of advice, if it's close to lunch time and you have an appointment scheduled, go eat your lunch or you may never get too. The times they have on those schedules are so subjective that it's not funny. You may well be in one area and watch the clock pass the time that your supposed to be somewhere else. Take the time to eat, you'll need it.

 

[BackDoc]

I can't speak for CC Ohio, but my experience with CC Weston Florida has been noting short of excellent. Telephone calls returned promptly, arrangements made in an extremely timely manner, little to no waiting.

I would not hesitate to recommend CC florida in an instant.
Dr. Boyd and Dr. Dullum are first rate, and their secretary Barbara is the best!

 

[Ross]

I can't speak for CC Ohio, but my experience with CC Weston Florida has been noting short of excellent. Telephone calls returned promptly, arrangements made in an extremely timely manner, little to no waiting.

I would not hesitate to recommend CC florida in an instant.
Dr. Boyd and Dr. Dullum are first rate, and their secretary Barbara is the best!

Clevelands problem is the shear volume of business they do. You can't conceive how large an operation the place is until you get in there. Were talking dignitaries from foreign countries and well everyone.

 

[BackDoc]

if that is the case I might decide to go elsewhere. I feel like I was treated like a dignitary at CC Weston Florida, from day one over 2 years ago, until the moment of my discharge following surgery.

I have always made it a point to return all of my own patients telephone calls that same day by the time I leave the office. My staff arranges all outside diagnostic testing for my patients, and we also arrange necessary referrals.

Maybe my office is out of the norm, but that is exactly the way I would want to be treated. If a secretary takes days or weeks to return a message, then sorry, I am out of there.

Everyone deserves to be treated as a human being, not a number.

 

[harleygirl528]

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....

 

[kfay]

I'm with the back doc on this one. I originally contacted my surgeon at the Mayo Clinic by e-mail just briefly explaining who I was and my situation. He personally e-mailed me back that same day requesting more info. Within a week my local dr. had sent him my info and he was on the phone to me and by the next day his secretary had 2 full days of appointments set up for me. After meeting my cardiologist there, she gave me all of their cards and said for me to call anytime for anything. When I have, I have never waited longer than 1 hour for a return call. I think the Mayo is as big of an operation as CC is. They had no reason to treat you that way Lorie. I wouldn't have gone there either.

Kim