Decision Advice

[KimT]

Kevin,

Perhaps you can get a second opinion from Mayo on the surgery.

Dr. Pulley is very conservative on giving diagnoses, so if he says Kevin has ALS, he does. Pulley's clinical exams can run over an hour and he leaves nothing to chance. He also does all his own EMGs and lumbar punctures. I found him much more thorough than Johns Hopkins or Mayo but I would definitely get a second opinion from both a neuro and surgeon before proceeding with the surgery.

Kevin, I've been knocked out twice since my diagnosis. Once for a colonoscopy and the other for a fissure/hemorrhoid repair and to biopsy my stomach. The hemorrhoids and fissure caused me to lose weight but I wasn't worried because I was still eating good and breathing good.

I often wonder about the things that speed up progression. Honestly, I think that stress speeds up progression for me.

Your issue is much worse than mine so, if possible, get some more medical professionals to weigh in on the surgery before you decide one way or another.

 

[BK2011]

Kevin,

I opted for surgery, granted I didn’t have a bowel resection, I had open heart surgery and my aortic valve replaced. Didn’t seem to speed up my ALS. ALS certainly slowed down my recovery but I did recover. For me it was a quality of life issue (you know “I’d rather die while I’m living than live while I’m dead.”) So, you need to decide if you are going to suffer with your gut issue for what’s left of your life or whether you’re going to risk possibly speeding up your ALS to get it fixed and enjoy the time you have left before ALS gets you.

Bill

 

[KevinM]

Thanks so much for all your thoughts. Bill, you are right on target with your comments re: quality of my remaining time.

Kim, I appreciate your suggestion to get other opinions, but I did a bunch of research (as did my PCP) on specialists in this uncommon condition, and Dr. Read is considered one of the leading experts, at least on the east coast. So I kind of went right to the most knowledgeable source. The two GI specialists in town that my PCP spoke with suggested I get an opinion from the Shands colorectal specialists because of their renown, and Read heads up that department.

It can’t be stressed enough just how major this surgery is (intubation alone for a 3-4 hour surgery is difficult on a healthy body, never mind someone with ALS), the numerous potential complications, and the recovery time. Since ALS is a multi-system disease with neurological impacts throughout the body, there is little doubt in my mind that the possibility of complications would be increased.

Right now my symptoms are a little bothersome but otherwise quite manageable, but no one has a crystal ball to know if it will remain that way. I have a lot of ruminating to do over the next few weeks. Thanks again, Kevin

 

[BK2011]

Tough decision surely.

Folks at Shands are outstanding. My daughter spent more than a month there and we have only good things to say about everyone that cared for her while she was there.

Bill

 

[Kristina1]

I'll add this just as food for thought while you're thinking all your options through--

If weight loss/inability to maintain your weight is one of the things holding you back, what about having a tube placed while you are already under GA? You said you didn't want a tube and if that's your final decision I respect that. However if you are rethinking your choice,consider that a feeding tube can help you die more comfortably. We were just talking about this in one of my FB groups. I don't want to die of starvation, and I don't want to die in mental and physical pain because I am not able to get my meds down orally. I got a feeding tube early because I was having a hard time swallowing pills. Initially I only used it for meds and hydration. It is really easy and convenient. I see it as a tool to increase my quality of life, and when the time comes, my quality of death.

Anyway, just something to consider asking your doctor about, because if you do think you're eventually going to want it, it makes much more sense to place it now while you're already in surgery, and then you could use it to supplement and keep your weight up post-operatively.

 

[KevinM]

I'll add this just as food for thought while you're thinking all your options through--

If weight loss/inability to maintain your weight is one of the things holding you back, what about having a tube placed while you are already under GA? You said you didn't want a tube and if that's your final decision I respect that. However if you are rethinking your choice,consider that a feeding tube can help you die more comfortably. We were just talking about this in one of my FB groups. I don't want to die of starvation, and I don't want to die in mental and physical pain because I am not able to get my meds down orally. I got a feeding tube early because I was having a hard time swallowing pills. Initially I only used it for meds and hydration. It is really easy and convenient. I see it as a tool to increase my quality of life, and when the time comes, my quality of death.

Anyway, just something to consider asking your doctor about, because if you do think you're eventually going to want it, it makes much more sense to place it now while you're already in surgery, and then you could use it to supplement and keep your weight up post-operatively.

Thanks so much for the idea, Kristina. Since I have absolutely no bulbar issues at present, that hasn’t been something I have had to think about yet. I will discuss it with Dr. Read if I go forward with the surgery. Kevin