Lousy Options

[Nuts]

It's been five months since my husband's diagnosis, and I thought I'd come to grips with it. Right. I barely made it out of the hospital in one piece today and I'm terrified that I'm going to break down in public and just not be able to stop crying.

We knew my sweetie has a vertebrate that is out of place and putting pressure on an already bulging disc, but the pain was manageable--until he fell getting out of his chair at work. The neurosurgeon says only surgery will provide real relief, and...lucky for us...this slow progression means he's still a candidate. Really? Of course, that same surgery could kick the ALS into high gear and speed up the progression. At his request they are trying a steroid injection this week, knowing that it will offer temporary relief. The NP kept saying he only needs to call and they will schedule the surgery. What a crappy decision to have to make: face a future locked in a body that he knows will experience excruciating pain or have the surgery and bring on a less painful future more quickly . After I explained our hesitation the NP said he can continue to have the shots every three months if he choses that route, but I imagine a time will come when that won't be practical. Isn't it bad enough to know he will be faced with the feeding tube and ventilator choices? Must he really be faced with a choice now that could hasten the need for those other awful decisions?

Yep, I'm officially not ok.

And Max, if you are reading this, go swimming again by yourself and I'll come to Texas and help Mark smack you upside the head.

 

[MaxEidswick]

>Yep, I'm officially not ok.

unfortunately I really do understand. Our thoughts and hopes are with you.



>And Max, if you are reading this, go swimming again by yourself and I'll come to Texas and help Mark smack you upside the head.

 

[Barbie]

what a terribly hard decision...

 

[SMP51]

nuts, my Steve had a fusion done in his neck a year after his diagnosis. it was an injury of his neck from a car accident many years ago. and a last ditch effort of maybe this will fix things. There was pains that would have been made worse by the lack of movement from ALS, He did just fine and those pains are gone.
the doctors have always considered him slow progressing, this did not change with surgery

 

[Nuts]

Barbie-I know you've had a very difficult time and I'm just starting this journey-thank you for all you share.

SMP51-I can't tell you what a relief it is to read your post. I know anything can happen, but it's so good to hear a positive result to something we are facing!

Max-- back at ya!

 

[Jeff Long]

Nuts,
Tough choice, and we're praying for you both.
Makes me think of the old (bad?) joke... "So, other than that Mrs. Lincoln, how did you like the play?" Seems nothing with ALS is willing to give us a break, but we can make our own breaks!

Next time you're down for clinic with Dr. B we'd love to have you over for dinner. Or lunch. Or beer, wine and any other vice! We have them all.

 

[Snowman78]

That is a very tough decision, my prayers will be with ya'll. Dad had two surgeries years ago to remove disks and fuse the vertebrea together and wire in a rod. Both surgeries helped tremendously with his pain one was much more successful than the other. Thankfully though we weren't battling the monster known as als at the time. I hope all works out and goes well for him.

 

[zoohouse]

Nuts, although I don't have ALS I have had my C5-6 disc removed, artificial disc replaced and fused with titanium rods done. I was suppose to stay in their ICU step down unit, but I found the surgery so easy I went home the very next day. The other thing is that maybe you could ask if they will use Propofol for the surgery as an anesthetic, there are some that say that they had an improvement following a procedure that it was used in. In my family there have been 4 of us that have had disc surgery and all have gone very well, and for most of us the pain relief was immediate.

Paulette

 

[affected]

Oh Nuts, that is way tough and you are totally allowed NOT to be OK!

I would encourage you to talk to the specialists there as much as possible as you settle from the immediate shock and gather as much information as you can to help make the decision now.

What I mean is that if he is slow progressing and there is a good chance of giving really good relief, NOW is the time to consider it. What if he is in so much pain in 6 months he wants the surgery but his breathing is compromised and they say he is too high risk?

Don't make a rush decision on the spot, but don't dismiss the benefit he may get from the surgery, especially now at this stage he is in.

I know it's easier for me to say than for the 2 of you to live, but that's my 2c worth.

 

[rosec]

Nuts, it is OK to be not OK. Like Tillie says, may be get this done sooner than later, and he will be pain free..

 

[Nuts]

You have all brought me great relief!

Jeff, I love that joke, and yes, we'd love to get together!

Snowman, Paulette, Tillie, and Rosec, thank you! I'll ask about the Propofol-- we're going for the injection today and I suspect he'll schedule the surgery very shortly. His breathing is great right now, but we hadn't thought about having to get it done before that changes. You gals and guys have restored my sanity!