VERY bad day for CJ

[cjsmith]

I went to the Stanford Pain Clinic this afternoon. The guy diagnosed me with something something neuritis (I'll get a copy of the full report when the typists are done with it), which he says is under the umbrella of CRPS (although not by any means a bad case).

He says there are several things we can try:
- Medication, which is not likely to work
- Some kind of funky spinal stimulation thing, which is not likely to work
- A sympathetic nerve block, which might or might not give partial relief for three hours or three weeks
- Injecting Botox (into the nerve?), which is not likely to work and which "there is no way your insurance will pay for"
- Surgical or mechanical interventions, which not only likely won't work but could make things REALLY WAY WAY WAY WORSE

So I might get partial relief from an expensive and uncomfortable procedure that would, if it lasts long enough to be worth it, have to be repeated over and over forever.

This is it. End of the line. No more hope for miracle cures, or even nonmiracle cures, or ever having a normal life again.

Comments

[ame-chan.livejournal.com]

*hugs* I'm sorry honey.

[brian1789.livejournal.com]

That's terrible news... (hug). Probably a stupid question on my part, but instead of a temporary block, why not just snip the nerve altogether? Granted, the area would be permanently numbed, and you'd have to be careful to not injure it inadvertently, but it sounds like that might be preferable... ?

[cjsmith.livejournal.com]

That's an idea I've had for ages, myself. That would be hugely preferable!

He seemed to think that further surgical intervention could convert me from a person who has pain when I stand on it to a person who has pain randomly or all the time. He suggested that the damage isn't at the extremity, but up at the spine "or higher". Clearly I have a big pile more questions to ask.

[wooddragon.livejournal.com]

Fuck.


(It's possible a pain guy is not the final, final, final word... I once had an enlarged thyroid, and a surgeon wanted to remove it. It was just an infection that went away... Sort of the 'if you have a hammer, everything looks like a nail.' I don't say that to give you false hope, but he's at the Stanford Pain Clinic. Is it possible he's looking at symptoms and not causes?)

[cjsmith.livejournal.com]

Possible. CRPS kind of is "symptoms and not causes" because we know so little about it as yet. (Wish I could remember the name of the neuritis; CRPS is a big umbrella and much of it, he said, wouldn't apply to my case. I need something to type into Google!)

Bleah.

[quasigeostrophy.livejournal.com]

Bleah. *hugs* Wish I was closer - I'd take you out for a Major Bitch Session or whatever you wanted.

[deedeebythebay.livejournal.com]

I have no idea what to say to you except I'm so sorry and I wish I could just give you Mama Hugs. Damn, that's just awful. *more hugs*

[windsea.livejournal.com]

Oh, god, no. Oh, I'm so sorry.

[dawnd.livejournal.com]

(hug) That so sucks.

[ladycelia.livejournal.com]

Oh man, I'm so sorry.

[platypus]

Fuck. I know you've seen a lot of people, and tried a lot of things, but part of me still hopes that yet another person might have a different idea. And even if various things are unlikely to work, they must work for some people, and... well, just, fuck. I hate to give up hope, but I also know that la-la-something's-bound-to-help shit isn't helpful either.

[kimatha.livejournal.com]

Oh, FUCK. That is just shitty. From the little I know of CRPS, it is just a shitty, shitty thing to have. Although it does explain your debilitating agony.

Hugs and stuff. Wish I could do something to make it go away.

[therobbergirl.livejournal.com]

So I had this super cool comment written. It was philosophical yet practical. Gosh, it was awfully well written, though I'm sure that it had my usual peculiar typos and accidental word omissions.

But you've lived with this for so long that you've thought of everything I could possibly say to you. You've evaluated these thoughts because you had to think of them a long time before they ever occurred to me.

So I'll just leave it at this mutter about how life can be normal, it just can't be the way it was. But what does that matter when what you had was what you wanted?

So screw all that. I'm sorry that the situation as it stands now is the situation as will ever be. I commiserate with you as best as I can, not being in your, um, shoes (pun not intended). Most of all, I tell you that I adore you and that I hope the awful way you're feeling right now gives way to feelings that please you more.

[datagoddess.livejournal.com]

Oh, fuck.

Today is just so fired. For everyone. No do-over.

*hugs*

[ambar.livejournal.com]

*snarls* on your behalf.

[allanh.livejournal.com]

At the risk of raising false hopes, I will point out that the Stanford Clinics, while excellent, are not the only superb medical resource in the Bay Area. Hence my consulting a liver specialist at UCSF for Hep C and a gastroenterologist at El Camino Medical Group (Palo Alto Medical Foundation) for my acid reflux, both of whom have given me more to work with in the past week than I've received from their corresponding Stanford clinics over the past year.

[cjsmith.livejournal.com]

I know I want, if not a completely separate doc to do his own "second opinion" diagnosis, at the very least a huge number of questions answered.

[cassidyrose.livejournal.com]

I'm so sorry. That just sucks.

Bleah.

[itsmegidget.livejournal.com]

CJ I am sorry your dealing with this. I hope that maybe you can get yet another opinion!
I just don't know what to say, I am sorry!!
HUGS

[joedecker.livejournal.com]

Well shit, CJ, that sucks, I can't even begin to imagine. I'm so sorry. :(

[ericainohio.livejournal.com]

Oh, CJ. I have nothing wise and wonderful to say, and I wish I did. I just wanted you to know that I'm reading, I'm here, and I'm thinking of you. (((hugs)))

[tsjafo.livejournal.com]

*hugs*

[wcg.livejournal.com]

Ah damn it all to hell. I'm so sorry.

[zpdiduda.livejournal.com]

Oh hell, CJ. That's just not fair. I'm so sorry.

I'm dealing with a similar lack of miracle cures for my peripheral neuropathy, although mine is not quite as debilitating yet. If you want to rant at someone who knows whereof you speak, hit me up.

[cjsmith.livejournal.com]

*nod* There's just so much we can't do yet. ("we" == medical care) Some people get miracles, and that's great; things that could have killed folks years ago can be cured now, and that's great; but it's easy to forget (unless you're one of the people affected) that there's stuff we just can't touch at all.

[jtidwell.livejournal.com]

Oh, man. That's awful. Hang in there...

[hnybny.livejournal.com]

I have to agree that one pain clinic is not the end of the road. I also agree that "normal" is relative. Don't give up hope. When you know exactly what you have, find the doctor most closely associated with its treatment and give him a call. Maybe you might get lucky and s/he'll accept your insurance. Here's hoping........and *hugs*

[airporter.livejournal.com]

Oh frack it all, hon. I'm so sorry.

May the glass of wine, purring cat and pizza help a bit.

[patgreene.livejournal.com]

Damn, C.J., I'm so sorry.