Tentative Surgery Date: "mid-July"

[cuoricino]

Hi everyone!! It's me again: BAV girl with ascending aortic aneurysm, looking at an OHS in Italy this summer.

So I'll get you up to speed on where I'm at:

Had a TEE last Tuesday (oh holy crap, it was awful... how am I gonna cope with the surgery if I thought THAT was bad?) I don't mean to scare anyone who needs to go in for a TEE, but I was completely awake (and so were my regurgitation reflexes apparently) and although I hadn't eaten anything, my body just wanted me to throw up! Gross. I also have to add that vomiting is my very LEAST favorite thing in the entire world so I was in hell. I also had the scary sensation that I couldn't breathe, and they had warned me not to swallow during the exam or else it would take longer than necessary. So there I was, swallowing instinctively (I couldn't help it!) and getting angry at myself because everytime I swallowed I knew it was gonna make me stay there that much longer... and I was trying to relax and BREATHE.... thank god my boyfriend was there to keep me calm, I would have never been able to do it.


AAAAAAnyway, I got the results today, and the only thing my "lay" eyes can dechiper is that the aneurysm is at 5cm (up from 4.9). Yikes. The surgeon that requested the exam is unreachable (he's always hard to reach and his secretary is on vacation) so I've made a few phonecalls to the other surgeons I've been in touch with and at the end of the day I have a consult set up for Wednesday in Bologna with a well-reknowned surgeon and I have SET THE DATE with another surgeon I had already had a consult with back in early June. I'm on "the list" and his secretary gave me a tentative mid-July timeframe and she'd call about a week pre-surgery so the surgeon can re-examine my case and get in any other exams he may want to before I go under the knife.

There's one thing that hasn't yet been cleared up and that is the whether or not they can repair the valve and replace just the ascending aorta, or if they have to replace both. The unreachable surgeon requested the TEE for this purpose but I can't get my hands on him! So I'll ask the Dr. on Wednesday during my consult and definitely discuss it with whichever lucky surgeon gets to do "the honors".

I have to say that mid-July was much sooner than I had immagined and I'm in a state between happy and scared!!!

I'll keep you guys updated and in the meanwhile I'll follow all your guys' progress.... even if I'm usually just a silent peeper at the threads.

ciao

 

[escargome]

Hey,
I feel for you about the TEE. The silly pompous cardiologist who did mine didn't give me enough happy juice so I remembered everything. But that is in the past and I have moved on.
Anyway, wishing you a successful surgery and speedy recovery. I hope you can get some good answers from whichever doctor you choose. Please keep us posted and I will pray that all goes well for you.

 

[ALCapshaw2]

Tell your Cardiologist to learn how to use VERSED.

It's a "Conscious Sedative" that can take you anywhere from "I don't care, can I watch" to "I don't want to Know or Remember ANYTHING" simply by varying the dose (by IV)

 

[Adrienne]

I also found the TEE a disgusting test, not so much because of the tube, but because the the junk you have to gargle and swallow beforehand.

 

[Mary]

Tell your Cardiologist to learn how to use VERSED.

It's a "Conscious Sedative" that can take you anywhere from "I don't care, can I watch" to "I don't want to Know or Remember ANYTHING" simply by varying the dose (by IV)

My husband is frequently present when they perform TEEs (in case the patient ends up needing to be bagged) and he's mentioned that some cardiologists are afraid to give an adequate amount of versed and other meds used during the procedure. They've had patients who reacted too strongly to the med (they stop breathing) so they err on the side of low dosing with the meds. Sounds like that's what happened to escargome.

 

[cuoricino]

I also found the TEE a disgusting test, not so much because of the tube, but because the the junk you have to gargle and swallow beforehand.

?? I didn't gargle anything.... I was however hooked up on an iv for the first time ever. yikes

 

[Jkm7]

The gargle is to help numb the throat prior to inserting the camera.

 

[COLLEEN S]

Thats how I felt waking up intubated. Not fun for me. I hope this new doc can get his hands on your TEE test so he will have all the info he needs. Sometimes, they don't know what they will do (repair or replace) until they are "in there."

 

[cuoricino]

setback today

setback today

So met with the surgeon in Bologna this morning. And he seemed every bit "the best" that his reputation implied. He boasts a personal 0,8% morbidity/mortality risk for this surgery which sure beats the 2-5% they told me elsewhere.

This is the problem: as I had feared, there is no space in the OR before September for little old me. August is the unspoken "everything shuts down for summer" month, and they are already looking at a full July.

So, I had already gotten on "the list" at a different hospital which would get me in by mid-July. I mentioned the surgeon's name, and the Dr. today said, "oh no... you don't want him to do your surgery." YIKES! Apparently he'll be great at replacing my valve, but when it comes to the ascending aorta or trying to repair the valve (if it's repairable) he has relatively little experience.

So just as I thought I'd be fixed up by summer-time I'm looking at September/October.

This is my fear: my aneurysm in my ascending aorta is already at 5cm. I have BAV with severe insufficiency, and I'm just plain SCARED that the longer I wait the more chance I have of my aneurysm bursting. What should I do? Get operated on pronto by a less experienced surgeon or wait it out for the more experienced one? I mean, what difference does it make???

Also: the surgeon I met with today put me on beta-blockers. 25mg twice a day. He told me that it would keep my blood pressure low. Being weary of any medication, are there any side effects I should expect?? In my confused state this morning I didn't even ask

grrr...

 

[Bina]

I would want the best surgeon for my particular situation.
It's good that you are on the BB, they will take the load off of your heart and arteries.

 

[Adrienne]

Also: the surgeon I met with today put me on beta-blockers. 25mg twice a day. He told me that it would keep my blood pressure low. Being weary of any medication, are there any side effects I should expect?? In my confused state this morning I didn't even ask

grrr...

I'll just tell you my experience. When my ex-cardio put me on 100 mg (50 twice a day) when I had A-Fib, I could hardly lift my legs when I walked, and I was very tired. I am now on 25 mg (12.5 mg twice a day) just to keep my heart rate down (I have always had a fast resting heart rate), and I have no side effects at all.

 

[escargome]

Were it me, I would go with the surgeon who has the most experience with my particular set of problems. I take Metoprolol 10mg twice a day which is very small dose, but I haven't felt any side effects from the medication. Just a jumpy heart if I forget to take it. Wishing you the very best.

 

[Bina]

Cuoricino, I also take 50 mg per day....I do have some side effects, but life goes on.
Like Adrienne, when I took 100 per day I was a wreck.

 

[cuoricino]

I've just taken my first 25mg dose this morning, could be why i'm draaaaaagging now. (or could have been the 6am wakeup call this morning?) It's 7:30pm here and I'm just counting down the minutes until I get to go home and crawl into bed!

thanks for all your replies. my gut is going with wait-till-september-and-better-surgeon option, although I can't help feeling I've got a time bomb inside my chest. How will I know if I'll be fine until September??? I'm kind of freaking out a little bit!!! Then there's the fact that I get all of August off. What oh what am I going to do with my time besides worry myself sick!!?

Any encouraging stories about aneurysms that made it over a few month period before surgery would be much obliged.... even a link to an uplifting thread, many of the threads I have found only talk about them bursting

 

[Reddog]

Go with the Best Surgeon

Go with the Best Surgeon

I had a similar choice to make... 5.4cm aneurism (though I'm a big guy), one good surgeon could operate within two weeks, but I also spoke with a world-class aortic surgeon that required scheduling 3 months out. The world-class surgeon quoted similar statistics as the surgeon that you prefer. I chose to wait the three months. I had surgery 2.5 weeks ago, and am glad that I waited.

How to wait several months without going crazy? Well... you have an aneurism, so no heavy lifting. Take it easy in general. I also asked my general practitioner for anti-anxiety medication that helped immensely. By the way, they typically don't recommend surgery until you reach 5cm in the U.S. (unless you have Marfans) - so while you want to get on a surgeon's schedule... I wouldn't sweat the wait of a couple of months - at least as far as the aneurism is concerned.

Best of Luck,
Red

 

[catwoman]

cuoricino:

Waiting until September or so will give you enough time to plan for your surgery -- get your house all ready, all paperwork in order, etc.

I also had a TEE last Tuesday. I had to gargle that numbing "cement" for my last one (July 2007) but this time all they did was spray my throat 3 times with something that faintly tasted like a banana Fudgsicle and smelled like WD-40. The spray worked better than that gargle did -- they had to repeat the gargle 2 years ago.

I remember being told "SWALLOW!" last time. This time, they put something plastic over my mouth and I guess they inserted the doo-dad through that. I don't remember much about it, other than the cardio giving John and me a report and saying, "She probably won't remember much of this, so I'm telling you too." Duh, I'm better at details than John.

On the whole, this wasn't bad at all. I slept a couple of hours afterward, then ate and drank something and then was able to leave the hospital. Much better than the last one!

 

[hall]

Sorry to hear you had an awful time with the tee. I had one and do not remember any of it. Thank God. I would not want to be awake for that.

 

[dl_mooney]

Ive had 2 TEEs,one with the spray & Versed, & later one with Gargle & Versed both went well.

 

[COLLEEN S]

I would go with the world class surgeon and in the mean time, don't worry yourself sick...you'll feel better when you commit to a decision.