ideas and or advice please on approaching a Surgeon

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.

aussigal

Well-known member
Joined
Oct 6, 2005
Messages
2,354
Location
Perth, Australia
Ok...

I have had enough of this pussy-footing around by my cardioligist #2 who I had thought was to be my saviour :rolleyes: ...

2 opinions and both dont seem to put the same importance or urgency on this aorta of mine as me or anyone-else I have spoken to for that matter...only my hubby and mum agree with them.(and their biased they dont want me in surgery if it can be avoided)

I however know the reality of the situation that at 4.8 I am right on the cusp of being in mortal danger from this and if it goes all of a sudden which they have a tendency to do apparently. I also have an abdominal aneurysm which is alot smaller than the above-mentioned one.

I would much prefer to join you guys on a quick trip over the mountain and onto better things with my new clicker and hose in place.

These guys reckon that if they put a new bit in a old body it will encourage other bits to get aneurysms and blow because my system has adapted to my heart as it is...they reckon I'll be fine for many years to come. I however do not feel very confident with their decision.

So what do you guys reckon...should I look for #3 opinion or should I try emailing the experts in aortic surgery over in the Eastern-states ( its a cheap 4hr plane trip...is that safe?)


any and all ideas appreciated

ton
pacing ther floor of the waiting room :confused:
 
Well I'm over here, so no your not safe! ;) I think most of the females will agree with this statement.
 
"reckoning" about something has what I think is a guesstimate type of mentality about it. I would much prefer it if your cardiologist had given you scientific facts and numbers which have been approved by cardiology associations worldwide. And had then quoted you percentages.

There is a problem with that too. If you are in the unlucky percentage and yours decides to blow before most would, then percentages mean nothing at all.

If you are not comfortable with what your present doctor/s are saying, by all means seek out someone who will be more aggressive with the situation.

This is YOUR life, not your doctor's, not anyone in your family, it's YOURS. YOU are the one who should make the decisions about YOU.
 
Strange Philosophy

Strange Philosophy

Dear Aussigal, When I had my Aortic aneurysm repaired/reinforced?/repllaced with Dacron, my surgeon made it wider in diameter than my original aorta. He said he did this to avoid creating a source of pressure that might lead to other aneurysms. Sounds good in theory, and I'm still here 21 years later. Unless your guys have statistics to back up their thinking, I would try to find someone for a second opinion. I'm like you, I wanted to get the darn thing fixed asap! I'll be thinking of you, Brian
 
Other than the fact that you might have to fight off Ross, I would want to explore any possibility that someone is overlooking something. This doesn't mean "Doctor Shopping" until you find someone that believes like you, just finding someone that will take YOUR concerns serious enough to listen.

Unfortunately, I think some (not all by any means) Surgeons and especially Hospitals (bottom line, you know) play a numbers game. In this game, success or failure is based on statistics, hence the hospital/surgeon rating system. If you "patient shop" for only the cases that are EASY or have a high probability of success, then your success numbers will be up. I don't know if the rating system allows a "worse case" factor but it stands to reason that hospitals/surgeons that take the worse cases/oldest patients/etc. would potentially have a lower success rate.

We have a friend right now who is starting a simular walk that I did last year (I'll post prayer calls when I find out more information). His situation is further compromised by lung problems due to heavy smoking. After all the tests, they determined he needs surgical intervention. However, the "high-risk" Surgeon in town REFUSED to take his case. They had to "Surgeon Shop" until UAB AGREED to accept him. They are to move him as soon as he is stable. I hope he receives the help he needs before it is too late.

So I hope you can find the Surgeon that will at least listen to your concerns and give you a better reason than "if they put a new bit in a old body it will encourage other bits to get aneurysms and blow because my system has adapted to my heart as it is..." "We can't fix what we know is wrong because it MIGHT cause a problem elsewhere" seems like a poor excuse for NOT DOING ANYTHING.

Ross is an stong advocate for "the earlier the better" and rightfully so. Unfortunately his turned into a life or death situation where there were not any other choices. Others here have "been there-done that". I would tend to trust their opinions over a guy who may have the "bottom line" to worry about.

Good Luck in your quest for solutions to your problem. BTW, as for the "...only my hubby and mum agree with them" comment; we have a saying here in the US of A:

"IF MAMMA AIN'T HAPPY, AIN'T NOBODY HAPPY!!!!!!!":D :D :D

May God Bless,

Danny
 
I didnt mean the Eastern states of the USA Ross...lol...:p :D

We have Eastern-States over here too :rolleyes: ..ie: Melbourne and Sydney both have most of our best and biggest hospitals and specialists.

Sorry Ross unless these local Aussi experts cant/wont fix me I doubt I will be hopping a plane to the US of A.

I really didnt want to go thru this changing cardio's again so soon after the last swap...It seems as if I am almost trialling them for the position of my saviour :eek: . They are really nice guys too...makes it hard to FIRE them.

Is it normal for me to be feeling as if I know more about this than "they" do?... its annoying me greatly.

Thanks for the encouragement peoples...keep it coming ...I might need to start a petition too soon :D .

Danny...this Mumma aint happy and it is affecting her whole world...so it sits true here as well...thanks mate
 
If it were me I'd be finding a surgeon to consult with. You have to go with your gut instincts. Honest. That's what I did. I went in 5 months early for an echo that (as you know) I kind of set up myself! I really sensed a change. Not a serious one, but a change nonetheless. I turned out to be right. The numbers had changed for me. There's no hurry for me, but at least now I know.

You need to trust yourself. At the very least, make some calls to some surgeon's offices and see if you can get some assurances there.

Keep us posted.

Marguerite
 
yeah...I had sensed a change too.

..thats why I fronted up 12 months early to my review and presented them with my aneurysm! :p

that was 3 months ago now...

I was on 5 yearly watches until then :eek: :rolleyes:

I almost shudder to think what could have been :eek: .

I am so glad you guys agree with me...dont know how many times I have been told I am over-reacting to this.
 
My thoughts and prayers are with you. It is really hard when everyone is telling you something different. I went to 6 Dr's and three surgeons before one Dr. told them to send me to CLeveland clinic my insurance wasn't happy about it.
I went and the rest is history.
 
With an aneurysm at 4.8 you are getting close as you know to the magic 5. I know we have had members blow them at less than 5 but this has to be compared to the risk of surgery. Have you had any CT scans or MRI's on the aneurysm with contrast this is apparently very good at determining the exact shape and structure of the aneurysm? It can also determine if any of the layers that make up the Aortic wall have started to fail this is a precursor to a blow out normally. What follow up schedule are you now on with the cardio and are they accompanied with regular tests on the Aorta? I would be asking the cardio what the blow out rate is per year at less than 5 and compare that with the <2% risk of surgery. Surgery isn't risk free. :)
 
Hi Aussigal!

While 4.8cm may or may not be the right time for surgery, it is absolutely, positively the right time to find a surgeon. Choosing a surgeon is an important decision and really should not be left until the last minute. Find a surgeon who is an aortic specialist and whose reputation is top notch--someone who does nothing but aortas and valves every day and who has a <2% rate of death/stroke/infection is my idea of the right person--and who you can personally trust. Then start trusting that surgeon with your life because that's what we're talking about here.

I do understand very well how much it gnaws on one's psyche to be "in the waiting room" with an aneurysm. (mine was actually called 4.8cm until it was seen by the aortic specialists) I doubt I'll ever be wholly comfortable in this lounge area (despite the fantastic company!). But Old Man Emu's last point is one to not overlook. Bad things can happen during surgery and even though a great many of them are survivable, surgery is best avoided unless it's absolutely necessary. There are plenty of people on this website who have heart arrhythmias post-surgery and some with vision disturbances and what-have-you. The idea of surgery is to become better off than you are now. I think what makes it so difficult to wait is that when your primary problem is an aortic aneurysm you have no real concept of being "bad off" at all and the notion that you are "bad off" and have no palpable evidence of it...it falls into the realm of the (deep, dark, scary) unknown over which you have no control.

Personally, I feel strongly that the way to find a level of comfort with one's decision to wait and watch OR to operate is to find a surgeon one trusts and ask him all the questions (be sure to ask, "if I were your wife...?") and make him explain things ad nauseum until you understand and can accept the decision--even if he agrees with your cardiologist. Just as it's not really appropriate for the cardiologist to decide when the surgeon operates, it's also not really appropriate for the patient to decide (to have input, yes...to decide, no) --you are too close to the situation and you do not have the medical or surgical expertise to decide on your own--no matter how many kind veterans and waiting room occupants offer their valuable opinions.
 
aww...again...many thanks for your kind reassuring words...

Now I have had as well as the usual Echos a Cardiac CT with dye and a Cardiac MRI with dye and all have shown the exact same thing ...the MRI included a distention study which measure how stretchy my aorta was and it is still in the safe range. They undergo a change and get hard/brittle I spose kinda when theyre gonna blow is kinda how I understood it. And thats what they measured on me...the whole ENTIRE length of my aorta from top to bottom literally :D .

1 Ascending aortic annie of 4.7mm by 4.8mm dimensions with max dilation 6cm up from my BAV which is mildy calcified and mildly not working well :rolleyes:
...also an Abdominal aneurysm of much smaller size 3.?mm :rolleyes: something.

My BP was controlled kinda at 110/65 but it has gone back up now to its usual 140/95 so I need to go back and discuss/show him ( cardio) that as well.
 
As one of our astute members stated,

"When you have a problem that can ONLY be fixed by Surgery, get a SURGICAL opinion" (emphasis added).

I wholeheartedly agree. Time to go surgeon shopping.

I've already picked my next one, a fine fellow from Brisbane (Dr. McGiffin, now practicing at the University of Alabama at Birmingham :). I hear good things about heart surgery in Brisbane...

'AL Capshaw'
 
This is what I did...:eek:

dunno if it was a good or bad idea yet...

time will tell I spose :rolleyes:

I emailed my story to the Biggest Best most experienced Cardio Thoracic Surgical group in Australia :D .

This morning I recieved an answer back saying YES....they would have their 4 surgeons who specialise in aortas exactly like mine look at my case and report back to me in whether or not they can help. :D .

If need be I will fly to Sydney on the East coast of Australia (sorry Ross;) ) and get myself looked at and treated by them. I have family and friends over there to take care of me and mum would fly with me. Brisbane is only an hours flight up the road from Sydney and I know people there too...and Queensland is gorgeous.
 
Hi Aussigal,
I have an appointment with my cardiologist tomorrow. I have a bicuspid aortic valve and an enlarged ascending aorta (about 5 cm I think). I had a MRI scan six months ago and the cardiologist decided to leave if for now. The cardiologist also consulted a surgeon regarding the MRI scan before deciding to leave it alone. One side of me says "I want to get this out of the way" and the other side says "leave it alone and let the doctors decide". The bit that puts me off is the small 2-3% chance of not making it. I hope you get the response you want from the surgeons.

All the best

Martin
 
Aaa

Aaa

OK. I've been sitting at 4.8 cm for four years. I wasn't feeling too good with my original cardiologist's assurances when this all started and saw the department head for the local medical school for a second opinion. His advice was the same, and said that absent other risk factors, like Marfan's, he recommended waiting until the aneurysm had increased to at least 5 and maybe more. He added that as the risk of surgery goes down, so does the minumum size at which they recommend intervention, but at the moment 5.0 was his minimum for surgery.

I have a relatively active life style and both physicians were positive about that, within normal limits for someone like me in their fifties. So. Each year I get very worked up before I am retested for the size of the aneurysm, but so far, so good. No easy choices here.
 
I must be just going thru another one of my "moments' where i get all tied up in this and decide I want action again...

After much thought ( and advice from interested parties ) I have decided to go back to see my original Cardioligist that has known me for 5 years now. I have the 2nd opinion he said I could go get if it would settle my mind..(and it didnt)...This 2nd opinion guy is a very busy man and I originally had only intended just to seek his opinion then return to this other guy anyway.,...somewhere in the middle I got lost...

Dr.Mark ( original cardio) isnt in denial about the fact I will need surgery and he has given me facts and figures for this surgery in much greater detail than the 2nd guy...whereas the 2nd guy says I may never need it :eek: I mean that is good but I dont think its realistic. I will even fess-up to having E-mailed the CT Surgeons in Sydney regarding my case, to show him how confused/scared and lost I still am...but that I have trust in him to help me...

I too believe surgical problems should be monitored by surgeons...I see my NeuroSURGEON everytime my back goes bad, I dont go to the neuroligist unless tests need to be done??!! so why am I seeing a cardio to discuss when I have surgery on my aorta???...mmm...good point you make there peoples...:D :cool:
 
aussigal said:
Ok..ideas and or advice please on approaching a Surgeon

:confused:

VE-WY, VE-WY CAREFULLY......especially if he has a scalpel in his hand!:D

Sorry, couldn't resist that one! Seriously,though, I am the queen of additional opinions, so if it would give you peace of mind - versus piece of mind - then go for it. Once you mull it all over, if you really feel comfortable with the first doc, then stick with him and try not to keep second-guessing your decision............(for those of you who know me, I'm a fine one to talk, aren't I? )It's a tough decision, I know, but you are your own best advocate. Do what you can live with, both physically and mentally. Many hugs and keep us posted. Janet
 
LOl...thanks janet...
and I shall remeber to stand back from him so he cant reach me til I'm all drugged up and ready to be cut ! :p :D .

My BP has dropped 20 points since I came to this decision...
must be a good sign ;)
 
aussigal said:
This is what I did...:eek:

dunno if it was a good or bad idea yet...

time will tell I spose :rolleyes:

I emailed my story to the Biggest Best most experienced Cardio Thoracic Surgical group in Australia :D .

This morning I recieved an answer back saying YES....they would have their 4 surgeons who specialise in aortas exactly like mine look at my case and report back to me in whether or not they can help. :D .

If need be I will fly to Sydney on the East coast of Australia (sorry Ross;) ) and get myself looked at and treated by them. I have family and friends over there to take care of me and mum would fly with me. Brisbane is only an hours flight up the road from Sydney and I know people there too...and Queensland is gorgeous.

You did the RIGHT THING Aussiegal !

Let us know what you hear from them. "Curious minds want to know" (stolen from a US gossip newpaper slogan)

'AL Capshaw'
 
Back
Top