Saw the surgeon today

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RvUsa

RvUsa

Well-known member
Joined
Mar 20, 2009
Messages
69
Location
Darlington, Pa
Well, I am home.... A lot happy, and a little concerned. LOL

I saw the surgeon, he said the CT says the aneurysm is 5.4cm, not 5.9cm and the guideline is 5.5cm for operation for someone of my "size" .... so I got about this (_) much to spare lol.

He wants me to get the WLS (weight loss surgery) and then come back and see him, but he would not clear me for it, he says I should see a cardio that deals with my weight loss surgeon, to get his clearance LOL.

So I have another appointment tomorrow morning lol. I don't know if the WLS guy will even touch me now, so I am in kinda a giant catch 22, surgeon won't fix the heart till I have WLS, he won't clear me for WLS, have to another guy to get clearance, if he clears me, then the WLS guy might not even do it LOL

So, he says I will have to have the AA and valve repaired at some point, and I will have to be monitored on a regular basis, with echo's and ct's to make sure it doesn't get any bigger, and if it does get bigger then I will get cut no matter how fat I am lol.

So here we I am, I guess I got bumped into the waiting room, but at least I got a while to get 'prepared'.
 
Hi John, I am glad you posted about your appt. Was there any talk of medication to control blood pressure (puts less stress on the aneurysm)? I also believe second opinions are good opinions. Cleveland Clinic gives second opinions at no charge, at least they used to. I think some members have done this and will chime in with specifics on what to do. Good luck with your appointment tomorrow, I'll look for your update again.
 
Get a Second Opinion

Get a Second Opinion

John, at your size (which I calculated at 6' 8" 400lbs, and I'm guessing that weight is conservative) it's fair to say the 5cm guideline for operating on a BAV does not apply. Instead, I guess it makes sense to apply the 2.5cm/square meter of body surface area standard. Your BSA would be 3 meters squared, so that would dictate operating at 7.5cm, which just seems crazy.

Even if your WLS doctor wouldn't operate on you, he may have valuable insight into what he would expect the size of the ascending aorta to be in someone your size. Another way of determining when to operate has to do with comparing the size of the descending aorta to the ascending--some use a rule of thumb for how many times the descending the acending should be. I can't imagine there's a lot of data on folks your size and I'm guessing the WLS doc sees more folks like you than the cardiothoracic surgeon does, so perhaps he can offer advice or steer you toward someone for a second opinion.

Good luck!

http://www.medcalc.com/body.html

http://content.onlinejacc.org/cgi/content/full/48/3/e1?ct
 
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I fully disagree with this waiting thing. I highly suggest you seek a second opinion quickly.
 
Did this surgeon tell you how many Aortic Aneurism Repairs he has done in the past few years? And his outcome?

I agree with the others...
Get a Second Opinion, preferably from a very experienced Aortic Aneurism Surgeon.

I know that Cleveland Clinic has an On-Line Second Opinion Service but was under the impression there is a charge for this (maybe $600? ... I don't remember).

'AL Capshaw'
 
RvUsa said:
Well, I am home.... A lot happy, and a little concerned. LOL

I saw the surgeon, he said the CT says the aneurysm is 5.4cm, not 5.9cm and the guideline is 5.5cm for operation for someone of my "size" .... so I got about this (_) much to spare lol.

SNIP

So here we I am, I guess I got bumped into the waiting room, but at least I got a while to get 'prepared'.
Click to expand...

John,

I get the impression that you consider those numbers to be "Hard and Fast" which is not exactly the case.

They are "Guidelines" based on historical and statistical evidence.

ANY distribution of numbers will have a Mean and a Standard Deviation. What this means is that if 'for people in your category, the guideline recommends surgery at 5.5 cm, there is NO GUARANTEE that you are safe at 5.4

Our Moderator Ross barely survived a disected (or was it a ruptured?) Aortic Aneurism that 'blew' at 4.7 cm. So much for the (presumed) 5.0 guideline for his size and weight. The smaller the number, the lower the probabability, but at 5.4 you are NOT in the range of ZERO chance of an 'event', just a 'lower chance' of an event by maybe 1 standard deviation.

That's why he and we encourage you to seek a second opinion.

'AL Capshaw'
 
I agree whole-heartedly - you need a 2nd opinion. I wouldn't think any other surgery would be advisable for someone with an enlarged aorta, but I'm not a professional. I would highly recommend getting the opinion from Cleveland Clinic.
 
Thanks everyone, my wife and I talked about it last night and read your posts and we are definitely gonna get a second opinion.

I really liked the guy yesterday.... but I didn't exactly leave there with a feeling of confidence. He said and I quote "you are a big guy, you just have a really big aorta... and you have zero chance of pulling a John Ritter".

I didn't think that was a statement that was entirely true...lol

I will see what the cardiologist has to say today, and then we will make an appointment for a second opinion when we get home....

Does anyone know of a good doc at UPMC presby in Pittsburgh PA???

thanks guys
 
Re: UPMC, you could call the hospital and ask what Cardiothoracic Surgeon(s) have the most experience repairing Aortic Aneurisms.

Didn't your wife work at UPMC at one time?

Maybe she could get some leads from people she knows at the hospital.

Good Luck!

'AL Capshaw'
 
Ok, for all those keeping box scores, it's the bottom of the second inning and I am 1 and 1, lol.

Today's cardiologist was cool too, I started with an ekg (my first one of those in about 20 yrs) and said it was perfect, he says he is in between on the measurement of the aorta, says the echo could have been on an angle, and the ct could be a little small cuz of all of the pressors and nitro they gave me to get my bp and pulse down.... so hi ho hi ho, of to an TEE I go.

I go in tomorrow morning for a TEE, and I don't know, maybe they can add up all the sizes and divide by 3 :eek:

I feel like a freeking yo yo, you do you don't you do, maybe..... he says he is a little more concerned about the valve, than the other guy, because of my SOB and chest pain, fatigue, (which has been more than the normal fat guy fatigue over the last couple months), poor color, cold hands and feet, and occasional dizziness.

So I let em shove the thing down my throat in the morning... (which is a lot easier than going in from the other end by the way) and see where we stand from there.. LOL

I will keep those of you still reading this soap opera up to date, and if you can think of anything I should ask/mention tomorrow before they send me to la la land, PLEASE let me know, I go into each appt with a book full of all your questions.

Thanks

John the human yo yo
 
Sounds like you have a plan, so stick with it. I will agree that the TEE is not too much fun. When they did mine, they didn't give me enough lala juice so I remember everything. But oh well that's life. Do keep us updating on your adventure.:)
 
http://bicuspidfoundation.com/

John, Here is a link to the Bicuspid Foundation. Arylss, who founded it, posts here from time to time. If you contact her she may be able to steer you towards some top-rate docs at UPMC. She is a very sincere & compassionate woman, and has lots of info! I don't have any suggestions for you as we deal with pediatric docs. I am glad you are getting a second opinion and the TEE tomorrow. 5.4/5.9 ... scary stuff. And for the surgeon to state that there is "zero chance for you to pull a John Ritter" ... I think that is a very disturbing & irresponsible remark on his part! That alone would send me shopping elsewhere!! Good Luck tomorrow.
 
I think I like your Cardiologist too.

He's taking your symptoms / condition seriously, has some questions, and is taking measures to get some answers. Very Reasonable Approach!

Some of our members HATE TEE's, some have had no real problems. The biggest problem is that occasionally, they don't get the 'gag reflex' tamed sufficiently.

They will spray your throat with some nasty tasting stuff that ends in "caine", then ask you to gargle it and maybe even swallow it. YUCK! Just do it.

You will also get an IV, typically with Versed ("conscious sedaton") or Valium and some sort of mild pain killer such as Demerol.

Versed allows you to awake without a hangover but can act as a short term amnesiac so you will need someone to drive you home and to Stay Put for the rest of the day. You may want to warn your wife NOT to let you make her go shopping and do / buy all sorts of Crazy Things :)

They can take you anywhere from "You're gonna do what? Can I watch?" to "I don't want to see or remember ANY of this!" by varying the dose.

Onward and Upward!

'AL Capshaw'
 
Thanks guys, unfortunately, I am all to used to the conscious sedation thing.... a long time ago in a galaxy far far away... I had my second ankle surgery, and because of nerve damage, I had a associated nerve pain thing, and I had to have about 30 lumbar epidurals.... NOT FUN as all women with children will testify to.... ( I love hearing new moms tell stories of how bad the epidural hurt going in> I just smile and say do it 30+ times and come back and talk to me), well with each one of them, because of something else they had to do with them, I would get my "buzz" on, get stuck, and then they would wake me up a little to ask about pain etc, by problem is because of my size, docs, etc can never seem to get dosages right. It's always, he is a big guy, he can take it, and they give me an aspirin for getting hit full swing with a sledge hammer in the shoulder (true story too :), or wow he is big, give him a lot of sedation, oh crap he stopped breathing (also true with about 10 of the epidurals)

I just took my 78 yr young aunt into the same place about a month ago for a TEE, and I stayed and held her hand the whole time, so I am pretty prepared. Of all the crap happening to me right now, I am pretty happy about the TEE, maybe I can just get some answers!!!

Thanks for all the support, it really is helping a lot!
 
"And for the surgeon to state that there is "zero chance for you to pull a John Ritter" ... I think that is a very disturbing & irresponsible remark on his part! That alone would send me shopping elsewhere!! Good Luck tomorrow."

I agree with Andrew's Mom on this.

A cardiologist told me and my son "let me reassure you 100%, this is not a cardiology issue". A few weeks later my son had a massive heart attack from the aortic dissection that was occurring as we talked to above cardiologist. I will never again trust a doctor that is that arrogant.

That being said, I do think that you have a little more room on your aorta than others of smaller stature.

Good luck, nothing like a roller coaster ride to keep the stress level elevated, huh.
 
When I had my TEE, I told them that I have a hair trigger gag reflex, and well, we had a little problem with swallowing the Milk of Magnesia/lidocaine mixture. The nurse said drink half, gargle it, the do the other half. The first half is all I got down. Then, when she sprayed my throat, she hit the back of my throat with the tube on the spray can, and I started gagging. That's when the curtains snapped shut! LOL :D All I can say is it's a good thing I hadn't eaten in over 12 hours or there would have been a mess. My Cardiologist stood there saying: "What's wrong with YOU?" One of my buddies said he would have paid $100 to see a video of this debacle!

Eventually, the stuff that had gotten down took effect, I was resprayed, and there were no more problems. I received a Versed IV with a little Fentanyl thrown in, and I don't remember anything except a few words here and there, which is the way I wanted it.The whole episode is funny now, but it wasn't at the time. The best part is I get to repeat it all next Thursday(4/2).

Steve
 
ALCapshaw2 said:
Our Moderator Ross barely survived a disected (or was it a ruptured?) Aortic Aneurism that 'blew' at 4.7 cm.
'AL Capshaw'
Click to expand...

When I go through my papers again, I'll post it. It clearly stated ruptured ascending aorta. It wiped my valve out when it ripped and Dr. McCarthy fashioned some flaps for it out of my pulmonary artery. The repair only lasted 7 years. Of course, the best he was able to get after 3 attempts was moderate regurg leaving surgery. I was on bypass way too long as it were, had a stroke and every other nightmare that could possibly happen.
 
RvUsa said:
Thanks everyone, my wife and I talked about it last night and read your posts and we are definitely gonna get a second opinion.

I really liked the guy yesterday.... but I didn't exactly leave there with a feeling of confidence. He said and I quote "you are a big guy, you just have a really big aorta... and you have zero chance of pulling a John Ritter".

I didn't think that was a statement that was entirely true...lol

I will see what the cardiologist has to say today, and then we will make an appointment for a second opinion when we get home....

Does anyone know of a good doc at UPMC presby in Pittsburgh PA???

thanks guys
Click to expand...


I'm glad you are getting a second op. What were the measurements of the other parts of your aorta?
 
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