Snowboarding with an Aneurysm

[Bina]

So, did Duff hit the runs or not?

 

[Lisa in Katy]

I found a May post by Duff that states his aneurysm is 4.5, but his cardio said no restrictions. At that time, he was swearing off weights, despite what the cardio said. I never had an aneurysm, but 4.5 seems too close to the limit to me to have no restrictions. As I said earlier, instead of living in fear, I would be finding a surgeon somewhere that is willing to operate. It seems that I remember that Duff tried that, but couldn't find anyone. I don't know why because my brother's aneurysm wasn't near that big when he had surgery.

After I had RF, I lived 22 years with restrictions based on the old school thinking of "wait till you have one foot in the grave and the other on a banana peel before having surgery." I often took chances, including running, skiing, and having 2 babies. I was lucky. I finally got tired of restrictions and not knowing and insisted that I was ready for surgery. He scheduled me for a Cath and after that was over, agreed that I was definitely ready for surgery, both physically and mentally.

Anyway, Duff, if you decided to go snowboarding, I hope to see you on here soon. If not, I hope you found something else fun to do.

 

[jjay32]

I have a 4.6cm aneurysm with no resrtictions at this time. And nobody will do the surgery at this time due to surgery risk greater than dissection risk.

 

[Ross]

I have a 4.6cm aneurysm with no resrtictions at this time. And nobody will do the surgery at this time due to surgery risk greater than dissection risk.

JJ to this day, I cannot understand why they insist on waiting for 5.0. Mine blew at about 4.7. I never got to the magic 5.0. To me, if it's there, they should deal with it when they find it. I keep hearing others saying 6.0 and all I can do is shake my head and say, "Man, your lucky". I've got a 3.6 in my abdomin now and after the hell I went through with the ascending blowing, I just want this thing dealt with as soon as possible, yet here I set again, waiting for that 5.0.

 

[Duff Man]

Oh wow, I opened a can of worms! I did go.. I just got a 4 hour pass and did my thing at my own pace. My friends were gracious and took the semi relaxed slopes with me. I'd be lying if I said I wasn't nervous as hell at first. I only fell once (caught an edge), but I'm no longer the agile athlete I was 50 or 60 pounds ago.

For everyone's information that's thinking about risking it, I believe that there is a significant amount of abdominal pressure/vagal type maneuvers associated with snowboarding... especially if you're a big guy.

I think you all have valid points and good posts, and thank you for your comments and concern. But in my circumstance (diameter and other relevant stats) I felt like the benefits of feeling human and feeling my age for a few hours outweighed the small and semi calculated risk of death.

No one will operate on me, so I'm pretty much stuck in the waiting room. Believe me, I have a healthy respect for this stuff, but I feel like if I can't get the surgery I have to spend life living and not fearing death. I often wish I didn't know about it.

Thanks again guys!

 

[Bina]

What do you mean "no one will operate on you"?
Ross, myself, and a few others are eagerly waiting for the chance to hack you open

 

[Ross]

Yeah buddy, we been waitin on you!

 

[Duff Man]

I had another consult with my prospective surgeon today and he said NO snowboarding unless I can do it without falling even once. That includes post op. At least I went with my best bud one last time before I hung up my board for good.



btw, he also said no contact sports, no sledge hammering, no chopping wood, no snow shoveling, no wrestling, boxing, jarring activities etc etc. Forever. Even post op.

What do you mean "no one will operate on you"?
Ross, myself, and a few others are eagerly waiting for the chance to hack you open

I'd be remiss if I didn't mention that I've talked to one surgeon who said he'd definitely do it if it were him, and he's willing... and another VERY well known surgeon that said he would do it but he doesn't think it's the smartest move unless I can't stand the wait. It appears, though, that there is no difference in restrictions before/after surgery at this diameter. The longest 6 or 7 millimeters of my life.

 

[Lynlw]

I had another consult with my prospective surgeon today and he said NO snowboarding unless I can do it without falling even once. That includes post op. At least I went with my best bud one last time before I hung up my board for good.



btw, he also said no contact sports, no sledge hammering, no chopping wood, no snow shoveling, no wrestling, boxing, jarring activities etc etc. Forever. Even post op.



I'd be remiss if I didn't mention that I've talked to one surgeon who said he'd definitely do it if it were him, and he's willing... and another VERY well known surgeon that said he would do it but he doesn't think it's the smartest move unless I can't stand the wait. It appears, though, that there is no difference in restrictions before/after surgery at this diameter. The longest 6 or 7 millimeters of my life.

I'm curious, (since Justin is leaving for a weekend of snowboarding -spending alot of time in the terrain park I might add, in a couple hours) What size is your annuerysm now? Did he explain why you would have to stop all the things you mentioned even after your surgery? I don't recall many people having that many restrictions after surgery.

 

[normofthenorth]

Yah, Duff, why all the restrictions after they fix what's busted?!?

 

[Duff Man]

What do you mean "no one will operate on you"?
Ross, myself, and a few others are eagerly waiting for the chance to hack you open

I'm curious, (since Justin is leaving for a weekend of snowboarding -spending alot of time in the terrain park I might add, in a couple hours) What size is your annuerysm now? Did he explain why you would have to stop all the things you mentioned even after your surgery? I don't recall many people having that many restrictions after surgery.

I'm at 4.3cm as of November. From my understanding, once you've had an aneurysm you're statistically at risk for another aneurysm and/or dissection. Jarring activities like falling on a snowboard, etc, place an extraordinary amount of stress on the aorta... not only because of the valsalva type of response but also because of the way the impact can cause sheer pressure on the aorta. I think it stands to reason that the part of the aorta just next to the graft is probably not as strong as the rest of the aorta either, and there is a chance of a kind of intimal tear in that area... especially if it's infected or something like that. Not to mention, if you've had an aneurysm, your aorta probably just isn't up to par for contact sports. It's just not built the way it should be.

Pretty much every surgeon I've talked with said to avoid contact sports. You can fall SO hard while snowboarding it isn't funny.

 

[csutherland]

This is interesting thread. When Jerry's aneurysm was accidentally discovered 6 yrs ago it was measured at 5.3. The surgeon who had done his AVR 3 yrs earlier basically said it was too dangerous to operate and he needed to wait until it measured 5.5. He also said not to lift over 50 lbs. We then saw another surgeon in St Louis who was more experienced in aortic surgery and he agreed with the first one. After several CTs in the years since it has remained in the 5.2 - 5.3 range, with another CT scheduled for March. Jerry will be 74 next Tues and we don't even discuss it now. He's still very active; in fact, he spent the day outside building fence. He won't attempt to split wood but I really can't think of anything else he can't do.

 

[Duff Man]

I didn't know Teddy, and I wasn't a member when his mom was active on this board, but his name and his story stick out in my mind because he was snowboarding when he died. I debated saying anything about him to you Lyn, but I wouldn't feel right if I didn't. I would want to know.

FWIW, I knew about Teddy when I went snowboarding for the last time. I couldn't help but recall what happened to him repeatedly while I was on the slopes.

http://www.valvereplacement.org/forums/showthread.php?16035-Teddy-Knape-1984-2006

http://www.valvereplacement.org/forums/showthread.php?15203-We-have-lost-another.&highlight=teddy

 

[Lynlw]

I didn't know Teddy, and I wasn't a member when his mom was active on this board, but his name and his story stick out in my mind because he was snowboarding when he died. I debated saying anything about him to you Lyn, but I wouldn't feel right if I didn't. I would want to know.

FWIW, I knew about Teddy when I went snowboarding for the last time. I couldn't help but recall what happened to him repeatedly while I was on the slopes.

http://www.valvereplacement.org/forums/showthread.php?16035-Teddy-Knape-1984-2006

http://www.valvereplacement.org/forums/showthread.php?15203-We-have-lost-another.&highlight=teddy

I remember Teddy and his Mom. I could be wrong but I don't think he was skiing when he passed. I think he stopped skiing himself when he started Coumadin after his ross failed and he needed both valves replaced and thats when he started being a cameraman.
I will never forget Teddy, he was pretty close in age to Justin and they both had surgeries around the same time in 05.

Luckily Justin doesn't have any restrictions all his heart doctors know he snowboards, which is why I was a little surprised you were told you had so many restriction even after your surgery.

editted to add, he does have a restriction about not lifting any thing heavy enough to make you grunt/bear down. He's had that his whole life, since he had his first 2 surgeries before he was 2 years old and growing up he was cleared (he needed doctors to sign the forms ) to play all sports except football and rugby

 

[normofthenorth]

All "before my time" and I've got no details, but from my quick review of the posts, it sounds as if he was a videographer of ski films, and doing that when he died with a camera in his hands.

From what I've seen, most of those people do a lot of skiing around the mountain as part of the job -- some of it going backwards while holding a camera -- to get the shots. I'm sure he was "taking it easy" compared to the people in FRONT of the cameras, but maybe not compared to somebody who's staying off the mountain.

 

[Lynlw]

All "before my time" and I've got no details, but from my quick review of the posts, it sounds as if he was a videographer of ski films, and doing that when he died with a camera in his hands.

From what I've seen, most of those people do a lot of skiing around the mountain as part of the job -- some of it going backwards while holding a camera -- to get the shots. I'm sure he was "taking it easy" compared to the people in FRONT of the cameras, but maybe not compared to somebody who's staying off the mountain.

Skiing did not have anything to do with his death. That was caused by scarring and pannus blocking his arteries and impinging his valve leaflets, less then a year after his double valve replacement (with mechanical valves) to replace the valves he got during his Ross surgery (that failed in about 3 years)

He just happened to be doing something he loved when he left way too soon. It was so devestating he was such a great kid/young adult.

 

[Duff Man]

I guess this illustrates how devastating this disease can be, how shrouded in mystery it is sometimes, and how important the medical advances really are. I really feel like we are pioneers with a disease that doesn't have a great fix yet. Hopefully at some point we become advanced enough that we may be able to identify the gene that causes alot of pannus growth, or monitor pannus prone people with an echo at some more frequent / regular interval.

I won't be snowboarding again for a good while, because I do think it makes sense to avoid falling with an aneurysm. Maybe once it's "fixed" I'll get courageous again. I'm pretty much resigned to enjoying a less than adventurous life for now with my young family.