I Now Understand The "Mountain" Analogy

[lieb2101]

The closer you get, the bigger it looks. Right now from base camp I can't see the top so well.

My surgery is scheduled for January 22nd @ UofM with Dr. Deeb. All my concerns about him as well my tissue vs. mechanical questions are now settled.

My latest diagnosis: I'm 29 years old and I have a 52+mm aortic aneurysm that has gone up into the arch. This was the result of a lifetime of excessive and uneven pressure from my uni-cuspid aortic valve. (not sure if it was the kiteboarding or mountain biking that did me in )

My procedure: Here's the scary part. They need to put me in full circulatory arrest by using an ice bath to induce hypothermia. I'm having a hard time with that concept. Anyway, they're going to use Dacron to replace my ascending aorta and arch. As for a valve, I'm hoping for the Medtronic Freestyle (porcine). However, the concern is that I'm too big for the largest porcine valve available (I'm a big dude). My doc says that they won't know until they're in there but I may have to go with the stinted bovine valve. Still good but does not have the superior natural flow of the Freestyle.

The last trip to the Doc was crazy. We ended up waiting five hours to see the surgeon to find out that he had been in emergency surgery with an Aneurysm victim since 2am. Yet, once he was done, he still took the time to see every single one of his patients that were waiting to see him (into the afternoon) while still in his scrubs. The best part was, he was in consult with my wife and I when he got the call that his patient was going to live. Talk about a real life hero. It turns out that this time of year he can end up with 4-5 Aneurysm emergencies a week. That whole experience made me take my situation a little more seriously, especially with the new 15lb weight limit.

The show and tell was a little freaky. I got to see the results of my TEE (echo) displayed as a 3D model on his computer. That really drove it home. He also let me play with the Dacron aorta replacement and showed me the various valves in his selection.

So, question time:
- Has anyone else ever been put "on ice"? Will I even know it happened?
- Are there any concerns I should have with the Dacron or the Aneurysm repair in general? I've heard that they last a lifetime but I didn't know enough to ask.
- Anyone have the Freestyle valve or have any related stories?

Big question:
- Will I feel anything different internally after the surgery and I'm healed? (i.e. will I feel the Dacron or new valve?)

My anxiety level has been really high lately but thankfully I have discovered that meditation helps me not only cope with my situation better but also helps me appreciate and enjoy a fuller experience of life. Unfortunately, I'm not very good at it

Happy new year and best wishes to everyone. Especially those of you who are in similar shoes. Thanks for reading.

Peace,
Brian

 

[Susan BAV]

Hi Brian -

A couple of things you mentioned I'd like to make a reply to... I have a Dacron graft in my aorta from nearly 30 years ago and the doctors all seemed to be somewhat surprised that I wasn't having any trouble with it when I had valve replacement four years ago . I don't know what that means exactly but I'll look at the good point, that I'm not having any troubles with the graft. But mine is in a different area of the aorta and wasn't from an aneurysm but rather the opposite, a coarctation that sometimes happens when a person is born with a bicuspid. Enough of that.

Another thing that I read fairly recently is that bigger valves tend to not be as noisy as smaller valves. So maybe you won't even be aware of yours after awhile. Mine's small and I can hear it sometimes but much less so than immediately post-op. I think I also read, another time, that mitral replacements tend to be louder than aortic replacements.

Also, even though you are not a bicuspid, you may find some very helpful aneurysm graft information here at www.bicuspidfoundation.com

Hope all goes well for you! Take care and post again.

 

[netmiff]

it sounds like you have faith in the surgeon and that sure helps! If he is doing 4 or 5 a week on an emergency basis, I would think (just my humble non-medical opinion, though) that means he is quite experienced. I have a mechanical valve, and don't feel any different (except no little chest pains like I had before, apart from the healing ones). I do have a mechanical valve, and when I woke up in ICU I thought there was an alarm clock on a metal table somewhere - except that it followed me up to the step-down floor and THAT was when I realized what it was; I rarely hear it now, although I am sure it is just as loud as it was.

I am only 4 months out of OHS, and I have to tell you that you are at the absolutely worst stage right now - waiting is SO hard to do !

I did not have the ice-bath, I was on the heart-lung machn, so can't help you out with that, either, but wanted to wish you all the best, keep positive and take one day at a time - and DON'T do anything strenous !

 

[MikeHeim]

I believe deep hypothermic circulatory arrest (DHCA) is used for all valve patients. It was certainly used for me and I was having my mitral valve operated on and certainly had no aneurysm. My understanding is that it serves a couple purposes. The first being that the decreased temperature constricts blood vessels and helps control bleeding and the second, and probably more important, is that it severely depresses all body functions and helps preserve brain function. Several people on this site, including myself, have mentioned that it seemed difficult to get warm for some period after surgery - couple weeks if I remember correctly. For example, I have always been a person that could sit around the house at 67F in shorts and a t-shirt and feel fine. For a few weeks after surgery, I was constantly wearing a sweatshirt and pants. I have no idea if that had to do with DHCA, the anesthesia, or any other surgical side effect, but it did happen.

 

[Magic8Ball]

Yep, i was frozen completely and i actually chose my surgeon because he was prepared to do this.

They can only repair your arch properly if they do this as the alternative is to clamp (while still keeping blood flowing to your brain) and repair below the clamp.....this (to my knowlege and understanding) leaves a dodgy bit of tissue where the clamp was which may be already weak and made weaker by being clamped....you can then re-anurism in that area.

I wanted to get it all done in one go and get the best job done first time....the none frozen method just looked like you were taking short cuts to perhaps minimise risk by .001 percent just to make you feel better but leaving a time bomb in your chest for later.

I think the only thing with the freezing is that they have to freeze you gradually and warm you gradually so if you are also a big bloke as i was then your total surgery time can be quite extended by this process due to the body mass so perhaps if the standard surgery time is say 6 hours you should let your loved ones know you may be in for 7 or 8 hours and that its just the freeze/defrost time causing the extension and not any complications.

My surgeon hinted at this and i actually said goodbye to family on sunday and told them not to come in until tuesday....it worked well in that they were not sitting around in the hospital all day waiting for news and working themselves up.....they just called later on and were told it was all finished and all was ok....they turned up to visit bright and early tuesday and i'd already had tubes out etc so they missed all the crappy bits.

I noticed nothing really weird that i didn't expect to feel anyway after surgery....i did have trouble sleeping for two weeks but that just stopped one night and suddenly i could sleep again but i guess that could just be what most experience.



I don't beleive i have any altered brain function from the procedure, i'm still the moody, sarcastic, hard arsed individual i always was.


As for the dacron, i went for the 1 piece st jude 35mm mechanical with the dacron already joined in the factory.....i figured that the surgery was risky enough not to also have the surgeon or his assistant also have to stitch the valve to the dacron during the procedure.....as for noise, bigger is not quieter in my limited knowlege...the only valve ive ever heard is my own....


I did have some unusual feelings early on after surgery in that when i swallowed it felt like something was stuck together in my chest....my mental picture was always that my arch was stuck to my throat (i realise that is probably impossible) but thats how it felt......that feeling went in time....probably a few months.

As for the mountain thing, i never felt the climb up, i was pretty level headed about it all in hindsight.....after surgery things on the downhill side just seem to get easer the longer you are on the journey......to be honest, if it wasn't for the clicking i'd feel the same if not better than i did before surgery....

Best of luck.

 

[ALCapshaw2]

Frankly, I've always been a bit confused by the "Mountain Analogy".

To my mind, I viewed the Pre-surgery Decline as going DOWNHILL, like into a Ravine and Climbing Out was analogous to Recovery. MY recovery was definitely a SLOW and LONG Climb! I expect Radiation Damage was a factor in that.

'AL Capshaw'

 

[harleygirl528]

Hi Brian,

I also have an aortic aneurysms that extends into my arch and bicuspid valve. I actually selected my surgeon based on his extensive experience with deep hypothermic circulatory arrest. As was mentioned in another post, the alternative is to clamp right at the beginning of the arch and this leaves weakened aortic tissue that is highly suspetible to future aneurysm...particularly in the case of connective tissue disorder which many of us with aortic aneurysm are likely to have. Therefore, this hypothermic circulatory arrest is a hallmark of this type of surgery any a surgeon who tells you that you won't need it with aneurysm involving the arch you should just move on. This is the only way to ensure that cerebral functioning is protected. My doctor compared it to the kids who fall in the frozen lakes when ice skating only to be pulled out an hour later, resusitated and going back to school the next day! Usually a person can only go about 6-7 mins without oxygen before sustaining brain damage but when the body is cooled this time is extended tremendously. My understanding is they don't actually put you in an ice bath but the blood that is pumped through the heart/lung machine actually gets filtered through an ice chest type thing so it's your blood that is cooled (correct me if I am wrong anyone), then once you're brain waves measure 0 for four consective minutes they turn off the heart/lung machine and you are technically in full circulatory arrest...at this point they have about 30 minutes to complete the repair...most doctors do what they need to do in far less time....then they "slowly" warm you back up.

I know exactly how you feel in terms of being nervous about this...I myself am scheduled for surgery which will involve total circulatory arrest on January 16 in Los Angeles. I have heard from many others who have had this procedure done, however, and I am very encouraged that most do not suffer any long-standing side effects, and most importantly, have not lost any cognitive funtioning. It really is the best way and the key is to find a doctor with lots of experience. Best of luck to you....I will be through the procedure before you so I will be sure and post as soon as possible. Take care!

 

[DeWayne]

I had an aortic aneurysm that measured 5.8 cm in the aorta, 5.4 cm in the root and a bicuspid valve. They did not have to replace the top of my arch, but sort of a diagonal cut across to bottom of it.
Yes I was put in the deep freeze, only blood flow to the brain. I also have the medtronics freestyle valve.

No I don't feel anything different as far as noticing the dacron replacement or the medtronics valve. I basically do just about everything I did prior to surgery that I did before with the exception of a weight limit of 50# (which I will have to ask about again at my next cardio appointment). In the days right after you might "feel" your heartbeat a bit, but it is just a normal reaction to wanting to know its working right

I don't think I have any memory problems (at my class reunion this past summer I was accused of remembering way way to much!)

For the most part life has returned to normal for me, I did not have any real symtoms prior to surgery other than an occasional problem with skipped beats which I no longer have. the only side effect I have is for the first time in my life my feet tend to get cold, but that is mostly from the medications I am on.

I only take 2 different medications 2 x a day, so no big deal there either.

I would say my recovery was pretty quick, at least my Surgeon said I was a great patient and other than normal physicals and scheduled cardiologist appointments I have not been to the doctor since.

Everyone gets a bit uptight in the days prior, its normal, but the closer it gets the more ready you will feel. Once the day gets there it will go so fast you won't have time to worry about things.

My surgery was supposed to take 4-5 hours, it ended up taking 8. They told my wife that it was just how it goes, not a sign of problems or anything.

Best of luck and we will all be waiting on the other side of the mountain for you.

 

[gadgetman]

The closer you get, the bigger it looks. Right now from base camp I can't see the top so well. Peace, Brian

Welcome.

Wal now, jest cornsider us th' Sherpas of VR.COM. We is all hyar t'he'p yo' on yer climb up this hyar mountain an' clear a path when yo' retch t'other side.

To my mind, I viewed the Pre-surgery Decline as going DOWNHILL, like into a Ravine and Climbing Out was analogous to Recovery.'AL Capshaw'

Of course, we'll also he'p Al outta thet pit he done dug hisse'f into. DANG, hope it doesn't start rainin'.

Bubba