Should I keep consultation w/surgeon?

[Bigred]

Wouldn't mind getting some board mbr's opinions on this one:

I had my follow up visit today with my cardiologist since having an echo and ct scan done in August. As I said before, the ct scan says it's a 4.5 cm aneurysm but has been noted in the past at 4.7 and 4.9. Either way there is apparently no significant change over the last 8 yrs. Echo results were actually better than the last time with a mild aortic insufficiency and leak vs moderate listed in 2001. Mean gradient was 17 vs. 24 in '01. The staff cardiologist at Deborah Hosp told me that he doesn't need to see me for 2yrs. I asked if we should be keeping a closer watch on the aneurysm and he said since there has been little or no change over the last 8 yrs that there was no need. Not too comfortable with this response considering what others on here have gone through.

I have a consultation set w/ Dr. Duke Cameron at Johns Hopkins for Oct 15th. When I made the appt I told his asst the size of the aneurysm and stated I didn't want to waste his time since surgery might be some time from now. She insisted it wasn't a waste of his time. My wife is of the mind that this appt was scheduled for almost a month now and I should go. I scheduled it to be proactive regarding finding a surgeon but now I'm wondering if I should wait longer since the news I was told today.

thoughts? opinions?

 

[ALCapshaw2]

The time to go Surgeon Shopping is BEFORE you are laying upon a gurney in some unknown hospital in an emergent condition.

Dr. Duke Cameron is a Well Known Valve Surgeon.
I recommend keeping your appointment and see what he has to say.

FWIW, I also tend to favor the opinion of Surgeons over Cardiologists when it comes to Timing for Valve Surgery.

'AL Capshaw'

 

[Lynlw]

Which part of the Poconos do you live in, My Dad lives in Wayne County. I'm not sure how many hours away it is but AS long as you don't mind travelling to Baltimore, it would probably be good just to hear what he has to say ect and Baltimore is really nice this year, you could go walk around the inner harbor and make a nice day of it.

 

[Duffey]

I'd keep the appointment and see what Dr. Cameron has to say.

 

[Freddie]

keep the appointment.

 

[Superman]

Bigred,

Did you know about your aneurysm prior to 2001? If so, do you know how quickly it progressed to the high 4 cm range before stagnating?

I'm wondering if there is a period of rapid growth followed by a long plateau, or is it something that wasn't discovered until you reached the mid to high 4 cm range?

Mine is at 4.9 cm, but it appears to have moved from roughly 3 cm in 2007, up almost 2 cm in two years. I'm inclined not to wait, but I'm also wondering if I'm making the right decision.

Regarding so scheduled appointment, and so I don't take over your thread - I would keep the appointment. There isn't really a downside to this surgeon agreeing with your existing doctor and you carry on as you are now.

 

[Star54]

Keep the appointment....

 

[Lorimacm]

I think you should keep the appointment. There is nothing wrong with being prepared and just having the conversation with the surgeon. I started talking to surgeons before cardiologist was ready to recommend surgery...he only said replacement some time in the future.

I thought progression of the stenosis was rapidly increasing, but cardio wouldn't confirm (I actually changed cardiologist after this). I was worried that I would be caught in an emergent situation and not be prepared with my surgeon or hospital selection.

Talked to my surgeon on 7/20 - had catheterization with new cardiologist to see if echos were accurate on 8/20 - cath showed worse than my echos - surgery on 9/9. So it was worth it to me to do that preliminary appt on 7/20 - nothing wrong with being prepared.

Good luck at your appointment.

Lori

 

[skeptic49]

So I went to see a renowned surgeon in advance of my need for surgery. First of all, I felt better after his evaluation. Second, I got myself established in his patient database. Third, he wants to see me yearly. I don't consider this a waste of his time or mine. It was the right thing to do.

Good luck,

Jim

 

[Cooker]

I vote keep it ... if can be prepared, be prepared...

 

[csutherland]

Hopefully I'm not hijacking this thread, but I tend to agree with those who say cardiologists don't seem as concerned as surgeons. However, could one argue that perhaps surgeons just want to operate on more people in order to make more money? (I'm not assuming that, but I've heard it said)

When Jerry's aneurysm was discovered in 2005 in a routine echo it measured 5.3 and technicians were alarmed, immediately sending him for a TEE. The dr. who did the TEE was also alarmed, sending him to a surgeon who was alarmed but elected to watch & wait. We ultimately went to a more experienced surgeon in St Louis who had the same opinion. The aneurysm has been stable for almost 5 years now.

The cardio at the time wasn't too concerned and Jerry ultimately changed cardios. Last week this last cardio said it's not even a true aneurysm, just a "widening" of the aorta. Whatever. We still consider it an aneurysm.

Since Jerry has this ongoing lung fungus and needs frequent chest CTs he's keeping on top of the aorta size by default.

But, back to the original question: Yes, I'd say keep the appointment with the surgeon!

 

[Nancy]

Keep your appt. even if you don't need surgery right now, you will learn new things from your surgeon. At every appt. Joe had, we always learned something new, some that we didn't want to learn, and some that we needed to learn.

So, go.

 

[Jkm7]

I agree with all the others about you keeping the appointment.
You will learn from your appointment and will start a relationship with a top notch surgeon. Once you have a visit with him, you are, so to speak, on his books. You become his patient and will have a contact source for questions and future consultations.

His opinion of your condition is important.

Best Wishes.

 

[TXWildflower]

I agree too - keep it. I had my first consultation yesterday and got a lot of useful information and established a feel for the surgeon and if he is the one I will like when the time comes - which is further away now than I was lead to believe back in June. I think I just got a bum echo - they can really vary depending on the technician and other factors.

Anyway - I think it is worth it and in my case gave me some real peace of mind that I needed.

 

[Bigred]

Well, after speaking with cbdheartman last night and reading these posts I am going ahead with the consult on the 15th. A lot of good points were made here and thanks to everyone for your insight.

And honestly I'm not comfortable with waiting 2 yrs to follow this thing. I can understand spacing out ct scans due to the radiation but why not at least suggest an echo? I know the measurements are not as exact but at least it could show if there were significant growth of the aneurysm. We'll see what the surgeons recommendations are regarding watching this though.

 

[coach14]

As everyone has said, go ahead and keep the appointment. If nothing else, it may put your mind at ease. Dr. Cameron is very good to speak with and was very helpful answering all mine and my wife's questions.

One word of warning - Dr. Cameron is extremely busy, so make sure he has a way to contact you if you have to drive very far. I had 2 consultations with him and his office called the morning of each one and changed the times. I also had my surgery delayed by 3 days, which I found out about 10:00 pm the night before. This is in no way a criticism of Dr. Cameron - he is fantastic and provides top notch care. Just a VERY busy man.

 

[Maryka]

Dr. Cameron did my valve and aneurysm surgery--very satisfactory! He IS very busy and is sometimes called in on emergencies because he is GOOD. But he tries his best to keep up with all of his appointments.

I, of course, say GO to you consultation!

 

[Equusz]

Red, I was wondering if you had your appointment with the surgeon and what he had to say.

Also, very interested in what both he and your cardiologist had to say about the chest pain you were having, since my ascending aorta is at 4.5 (same size since detected 3 years ago) and I seem to have had low-grade chest and back pain fairly constantly for the last year or so.

Equusz

 

[Bigred]

Equusz,
Yes, I kept my appt. w/Dr. Cameron. Glad I did. He was better at explaining the aneurysm to my wife. Its been confirmed now by him at being 4.5cm like I thought. Honestly, I forgot to mention the chest pain to him but I plan to follow up with email since there were a few things I forgot to ask during my consult.

He did say I should get an mri in Feb since this will be 6 months from the last ct scan. Then if everything looks the same he wants me to repeat this yearly. He gave the stats that most on here have been told, if the aneurysm grows .5cm within a yr then he would want surgery done, otherwise he suggests waiting until the 5cm mark. Since I've had previous avr I thought this would have been a higher number but he said once aneurysms reach 5 they usually grow at a quicker rate.

Surgical risk vs. rupture/disection is equal at approx 1-2% per year. But I'm interested in the cumulative risk you brought up in another thread. something else I'll have to ask him about since my aneurysm has supposedly been at this size for 8 yrs now.