Back in the hospital tuesday

[ketamine kitty]

Spasticity in back to uncontrolled 24x7 and pain, both CP and nociceptive have gotten much worse.

xrays etc to check the IT pump also showed shrapnel moved and close to the line connecting the pump to the indwelling catheter.

They'll re move the shrapnel and experiment with drugs for 3-4 days for spasticity and the nociceptive pain, still nothing for CP.

Have baclofen and clonidine in the pump so they jack that up every 4 hours and try add ons, versed and ??? frankly don't care anymore
would try anything and have tried all but the brain surgery route with zero efficacy.

Diabetes totally wonky now too. lost 60+ lbs in the past 2 years so they try to regulate that or review it anyway. nice way to spend my vacation

ket

[David Berg]

Dang it kk, I hope they can sort something out for you.

[alan]

Good luck, man. You deserve it.

[LaMemChose]

Thinking about you. **hugs**

[Sue Pendleton]

I didn't even know versed was possible in a pump. Anything on that snail venom for pain that was in all the research news about 10 years ago? Anything DARPA is working on? More hugs and there was a glass at the table last weekend.

[ketamine kitty]

What a clusterfuck.

Sue, thanks for the empty glass.

Ziconotide is the snail venom synthesis. tried it. hearing voices (got that thought I could handle it) it can cause extreme aggression and in some people increase the pain. I got the extreme aggression and nearly killed a drunk construction worker on a train who cursed me for being a gimp and shoved me hitting my IT Pump. next thing I knew I was having severe spasms and the ahole was on the ground I had hurt him pretty bad bruised but didn't crush his larynx. dislocated his shoulder and he hit the ground so hard he got a pretty bad concussion. got sorted out as there was a crowd who saw him curse and shove me, and start it but surprisingly I was still too fast for them to see/comprehend what I really did. apparently had an abusive history on the train so "no one saw or knew anything" being in a spastic state when the conductors and cops came and saw my brace and cane, was sure it could not have been me. spent 5 days sedated til the drug dissipated and I returned to my loveable self. so the new wonder drug is proving difficult in the real world.

Versed is just hitting the IT world. Just got home last night. the good news. it relieved all the nociceptive pain leaving only the CP. increased the baclofen 5-6x and spasms are much better.

the bad news. there seem to be issues. they took me off it yesterday at noon and I am already in agony. 3 weeks to get it in my pump and it may require a new pump and interacts with many drugs so they're sorting that out, and last this is experimental and there is no long term efficacy data so it could crap out at any time anyway (just off the phone with the doc). The three week window. the drugs must be compounded (couple days) then quarantined for 14 days for contaminants. prescribed injectable Demerol but only 5 doses for the screamers and no one stocks it, special order upon presentation and validation of a prescription, should have it Wednesday.

Will look into DARPA, the company got me to this doc one of the best and most progressive in the country works primarily with salvage cases

This is just grim. "shadows are falling and I'm running out of breath" W.Z.

ket

[Sue Pendleton]

For those of us who need demerol in a non-emergency setting be careful where it is injected. When I tore a bicep tendon during rehab round two I got a shot in my left cheek. That is my major spaze leg so no sleep as the demerol caused swelling at the injection site. The leg kicked for the next 30 hours. Maybe give the sticker ideas of your fleshiest muscle group that works well and ask if you can ice it immediately after.

I'll try and locate my old physiatrist. He's no longer at Reed/Bethesda but he was the outlier of their pain clinic.

And thanks. Just opened it. Wow! BTW, the glass was full until the end of the evening. With a salute to the sunset I took care of it while the others packed up.

"One lone soldier rode away."

[dejerine]

Bollefen

And in this corner, the new world pain champion KET, who can be defeated only by himself. Sure hope things work out and that you are too weak to defeat yourself. :-)

Thanks for the information. Scared me to death. Compounded medicine? I bet that is cheap. And bless all those blind, deaf, and dumb witnesses. People are good. CP is bad. Love to you bro, and anyone who messes with a pump....better not say it.

Stay alive.

[ketamine kitty]

I should clarify the nociceptive pain was not gone gone but floated 6-7. From where i'm coming from and my training 6-7 is manageable. the massive baclofen/clonidine reduced the spasticity by 60%.

I know I'm a guinea pig but should have cashed in my chips more than a few times, short timer, many issues. I have endured. There is not enough info so maybe this will help us all. During the trial i was monitored every 15 minutes at each titration and ekg harnessed and cuffed for bp, and blood ox. Can't recall anything else had multiple major episodes so spent a lot of time with demerol. doesn't stop the pain but somehow i didn't seem to care, but definitely spaced out.

Last, if i could get one more summer, see my family, do a real vacation with my wife, then crashed and burned i will have run a good race and will then set a new course. And if something goes wrong (unexpected) the knowledge base will be expanded.

A win win in the grand scheme. Don't think this is altruistic, I have reached my capacity to endure. Dejerine, I wrote for you, that is my past 12 years and it has gotten worse. I will have tried every option and no matter my decision if it turns into a shitstorm I will have a clear mind.

kindly,
ket

[alan]

Wouldn't injectable Dilaudid be better than Demerol?

[ketamine kitty]

Hi Alan, Tried Dilaudid, Morhine and a couple others have a bad reaction an for whatever wacko reason in combination with my flavor of SCI I lose B&B and my right leg which are tenuous and problematic anyway, Having that function is a huge benefit. Had a bad cath and a pretty nastily scarred urethra so that is almost always a bloody mess.

I really hope you are coping and think of you.

Kindly,

Ket