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

[laurenhat.livejournal.com]

Crap. I am so sorry. *hugs*

I saw your follow-up posts... I had just started thinking about how I want to run some races for the first time sometime soon (including Bay to Breakers). I definitely don't have any of the attitudes you mention... but would you be happier if I filtered those posts?

[cjsmith.livejournal.com]

Aw, thanks. Please don't feel you have to on my account. Yeah, I'm really upset right now, and yeah, whenever I read about running it hurts -- has for years -- but I am going to have to be who I am in an able-bodied world, and I may as well start now. But thanks for the thought. *hugsback* And good luck on BtoB! It's not at all a serious race, but/and it's very fun.

[eveningscribe.livejournal.com]

{{{{{{{JUST LOVE}}}}}}}}

(http://photobucket.com/)
Diamond holds your hand.

(http://photobucket.com/)
Next, Diamond goes RAR!!! at this day and scares it off.

[cjsmith.livejournal.com]

AWWWWW cutie!

[lisa-marli.livejournal.com]

*hugs* That's just awful. Do try other pain clinics. And don't forget alternative medicine, like acupuncture (frequently covered by insurance these days) and Reiki. At this point, western medicine has said "We can't do anything" time to try something else.
*More Hugs*

[genderfur.livejournal.com]

That's just what I was going to suggest. I have a friend who recently injured his neck badly, and among the other physical treatments he's getting, acupuncture is helping a lot.

I know of 2 good chinese medicine people (1 *extremely* good and a genuine ancient Chinese guy as well) in your general area. If you want contact info, drop me a comment with an email address.

[hot-turkey.livejournal.com]

Oh, no. :-( *hugs*

My two cents: try an osteopath who does manipulation. There's one in Portola Valley, Dr. Michael Rosen. I'm thinking of going to him for my back, which has been unresponsive to everything else I've tried (in particular, everything that's covered by my insurance).

[cjsmith.livejournal.com]

Thanks for the idea! If I understand the doc right, manipulation won't help because it's not a mechanical problem, it's an electrical one. Not that spinal pressure can't cause issues! Just that this isn't, apparently, likely one of them. :-( (Have tried chiropractic. Now it makes more sense why that did nothing for my feet.)

[anirishpenguin.livejournal.com]

CJ,
I'm so sorry *HUGS* If you want drop me an email at pengr at mac.com I want to talk to you about the nerve blocks and spinal stimulation (if you'd like to) I may end up with at least one nerve block and have done several different spinal stimulation things.

Take care
Penguin

[cjsmith.livejournal.com]

BIG BIG thank you. I'll do that. This procedure does not sound... pleasant. (Anything where the doctor says "If the tourniquet fails, you could have seizures and die" doesn't sound too good.)

[rampling.livejournal.com]

Ohhhhhhh, *huggety-hug-hug-hug* *kitty-purrrrrrrrrs*

Mot much more to say at this point. I'd offer vent space, though you prolly have closer sources for that.

*more-hugs*

Sighsssssssss...

[annina-writes.livejournal.com]

You have just been through the mill with this, m'dear. [gentle hugs]

As someone who also lives with chronic pain, I know how hopeless this kind of thing can feel. I miss walking so damn much, and the pain in my knees even when I'm not on them is horrific, but then I'm also aware that there are people without knees who would be willing to put up with the pain and frustration just to have knees. But putting things in perspective doesn't do crap for the pain, so I totally commiserate with you.

OTOH, there are new medical advances all the time, so there may still be a "magic bullet" out there for you. Don't give up...be alert to new developments...and hang in there. There's just got to be future solutions and working remedies out there for folks like us.

More gentle hugs...normal life? I've forgotten what that feels like. Hahaha/sneer/sniff!

[gdmusumeci.livejournal.com]

I wish I had some good advice. I was wondering whether you've ever been tried on any anticonvulsants -- I recall reading somewhere that some of them can have an effect on CPRS-type disorders. Have you tried (say) UCSF for a second opinion?

Regardless, this news royally sucks. :-( Let me know if there's anything I can do.

[cjsmith.livejournal.com]

Thanks for the idea! I have so far refused anticonvulsants because I want to keep my FAA medical. It's a tough decision: if meds could truly help, I might choose the ability to run and hike and backpack over the ability to fly, but if they WON'T help, the next best choice for putting any fun in my life is probably acro.

My doctor seemed to think meds would be disappointing. There are two(?) classes of people with "this problem" (his words, "this problem"). I *think* some have a problem with the nerves near the end being oversensitive and others have crossed wires at the spine or farther up. Whichever one I am (I *think* the crossed wires) doesn't tend to do well with meds.

[gdmusumeci.livejournal.com]

I vaguely remember from talking to an AME that medicines prescribed off-label are often waiverable. It seems like the FAA would be more concerned about an anticonvulsant failing to control a seizure condition than about the drug itself, after all.

I wish you the best of luck! Let me know if you want to go fly the Arrow someday. Nothing like flying something new to get your spirits up, after all. :)

[vito-excalibur.livejournal.com]

Well, that's fucking horrible. I am so sorry to hear it. You deserve better. Damn.

[hitchhiker.livejournal.com]

oh, cj :( i'm so sorry to hear that - i was really hoping it was one of those "damn that was hard to diagnose but now that we know we can cure it" things. *cuddle*

[lesliepear.livejournal.com]

(HUGS)

[kineticphoenix.livejournal.com]

I am so sorry, CJ. *hugs*

[extra300.livejournal.com]

I don't know what your problem is other than it seems to deal with incurable pain. I can't offer much other than sympathy and I do offer that except this, my father had a problem with back pain when due to age his spinal discs collapsed. There's not much can be done for this, but he went to an acupuncturist who after a few treatments got rid of the pain. The pain stayed gone until he died. Acupuncture is not a cure, but it is an anesthetic.

[cjsmith.livejournal.com]

Yep, that's basically it. My feet hurt, my feet haven't stopped hurting since late 2003, and I loved running and hiking and backpacking. I also deeply value being an independent, self-sufficient person. Nobody tells you, when you get a diagnosis like this, that the hardest part isn't learning how to make all the endless accommodations in your daily life; the hardest part is convincing yourself that your core values are no longer sustainable and must be jettisoned.

Thanks for the idea, by the way. Research shows acupuncture is only occasionally and temporarily effective for CRPS, and sometimes the microtrauma kicks the CRPS into its bad mode (permanent or random pain rather than activity-based pain). I'm going to be awfully darn cautious about lots of things for a while. But if it looks like I'm not at risk of kicking over into the bad mode, I definitely want to try acupuncture.

[firecat]

Sympathy. I think one should never believe doctors who say or imply "No more hope"; I especially agree with the person who made the comment about everything looking like a nail. But there is also a point of diminishing returns to visiting more and more doctors and sometimes going on with making the best of life as it is makes more sense, at least for now.

[cjsmith.livejournal.com]

*nod* I find I am already inventing hope for myself. I could have what he says I have and I could go into totally spontaneous miraculous remission. I could have what he says I have and medical science could learn what to do with it. I could have something different from what he says I have.

On some level I realize this is completely illogical; on another level I realize it is essential. Reality-based? Me? Not when I can't afford to be.

[yoak.livejournal.com]

*hug* I'm very sorry.

[cjsmith.livejournal.com]

Thanks.

I owe you an e-mail, big time.