United Brachial Plexus Network, Inc.

First of all, thanks to all you folks who responded to my query(s) I hope to hear a few more. Here's my deal;I have suddenly gotten the oppurtunity to try any of these procedures. BUT--I am very concerned about causing additional damage to myself--i.e.--adding to my problems. Cutting holes in my vertabrae seems to indicate simply weakening already questionable areas that-lets face it-have been thru a lot of trauma already. Worst/best example--in six months or a year I get in a fight, or get knocked off my motorcycle at a red light. Does my neck snap? Suppose it does work. BUT-now my necks so fragile I cannot engage in any of the physical activity that is the whole reason I'm trying to get "well" for anyway. I wind up mostly pain free--but can't do ANY physical activity. So what the hell's the point. Relieving the pain is NOT the be-all and end-all of this treatment. I'm trying to get back up on my feet-not become more invalid than I already am. I take ten mgs methadone twice a day. A rediculously small dose. So I cheat. I take one on good days--save 'em up so I'll have 3-4-5 on really bad days- and suicide has been moved back down towards the bottom of my "options list".
I read about people getting 30 mgs 3 times a day--40 mgs oxycot 3 times a day. Duragesic patches 150 every 72 hrs. I got 50 every 72 hrs. A joke. Enough to keep me hoping like some idiot who's convinced that ONE day they're gonna win the lottery. ONE day they'll increase my dose--thay'll actually LISTEN to me and do a little research and realize that I need appropriate dosages of these meds. REALITY CHECK--it ain't gonna happen.
False hope is a kind of torture--and when you wake up realizing that things aren't gonna change you can taste that gun oil in your mouth again.
I got some wierd reasons for staying alive. I wanna see Alien vs Predator. Iwanna read "The Wolves Of Callas" by Steven King. I'd like to publish AT LEASt ONE Novella or short story before I go. I'd like to get my Faith in Something back. Christopher Walken, the exiled Angel Gabriel in The Prophecy says he doesn't hate God--God just doesn't talk to him anymore. I feel alone. Totally. And everything I've tried to help with this has been bust. They give me too much bad medicine and not enough good medicine and when I tell 'em to go up 10 mgs they say I'm a junky. They say "you'll just have to learn to live with it--well it's been 11 years and I tell 'em that I don't have to live with it and that's a fact.I can end this pain ANYTIME--PERMENATLY. Butr I can't give them the satisfaction of saying "well he was obviously unbalanced". "If he'd daid something we could have helped him". Bull-frelling-shit.
The arrogence--gall-audacity. The 'God Complex' of most Dr.s I've seen appalls me.
They say it could work-or not. There's little risk-except for infection, paraplegia-possible death.When it works we have a 90% success rate--except when it doesn't work and we have a 90% failure rate. And 20% are completely pain free--but they lose the use of thier legs. Or become impotent.
Didn't mean to go on and on but I'm making a point. All this info I get from the God-Doctors simply states NOTHING.
SO I NEED TO HEAR FROM YOU. THE ONES WHO KNOW-WHO'VE BEEN THERE--WHO'VE FACED THESE CHOICES.
11 years brothers and sisters. I had a 10 year deadline--litterally-a DEADline. I gave myself an extension--mainly because of my LadyGirl--my relationship altered my plans--(I'm flexible)--and she gives me some little hope.
So--let's see what happens.
And My cycle's not quite done so I need it to go out in a firey crash.--(a joke)--maybe.
I was gonna spellcheck---but I don't feel like it--so pardon the bobbles in my spelling.---------------------mad enough to hold out a while longer, Ronin

Hi Ronin No wonder you're feeling down since you have to fight your docs, who are suppose to be on your team, as well as fighting the pain. I'm glad your girl friend is so supportive. I've read some of the encouraging words you've offered to others on this site; please keep in mind that there are many of us who have profitted from your advice who are pulling for you, too.
Would you educate an ignorant American about why you are stuck with these smug, insensitive doctors? I was especially thinking of you the other night when I wrote about the wonderful relief I've gotten when the anti-inflamatory Bextra (20 mg once daily) was added to my regime. My new pain doc - a Chapel Hill, NC, psychiatrist who is also certified in pain management - explained to me the relationship between nerve damage and inflamation but I'm afraid I don't remember his words well enough to pass it on. But it's real and I pray you find a doctor who understands this. My sincere apology if this qualifies as false hope. It just isn't right and I feel outraged on your behalf if there isn't some way for you to get a "second opinion" from a better informed physician.
Sandy

Hi Ronin
Sorry you seem to be hitting this wall with the doctors, I've read numerous articles saying that opiates used for pain relief do not usually lead to addiction even if high doses are given. I have heard that some doctors take their own view on this and decide they know better than research, I totally relate to your view of how the God like status some of these doctors confer on themselves seems to prevent them absorbing any new information. Some of them even think they understand bpi pain better than we do!

I wouldn't know where to start with advising you in this, I have never considered DREZ or anything else like that so I'm assuming my pain is not on the same planet as yours. I do still get significant levels of pain sometimes and for that I use cannabis which works well for me. My only problem is that it's not legal where I live which means that I have to break the law to get my pain relief, and it's not cheap. Following the trials of cannabis as bpi pain reliever carried out in the UK, there has been some interest in decriminalising it for medical use in my country, but I'm not holding my breath!
I'm glad you have some support now and I hope you keep fighting the system-you have a right to a level of pain you can deal with and that should be the doctors first concern.
Take care and keep us posted Jen NZ

Ronin, Please don't give up, God will provide the path for you if you trust Him and follow Him. Just shout up a prayer in faith and He will show you a way out, but you have to trust Him. Once I found the love of God and the hope Jesus brings to life my outlook on my situation gradually changed, and now I've never been happier and I'm still in the same amount of pain, and I get decent relief from meds.

I lived in despair also and had arrogant doctors, In fact the one who told me to get the Drez procedure told me I was hooked on my meds too, which brought me down for a day or 2, but then I snapped out of it because its not true. I have an excellent pain dr who also believes that when you are taking pain meds the meds are working to fight the pain, they have their job to do, and you aren't "addicted". I tried many different combos of meds and finally found the ones that work on the pain well enough, and don't cause me to be "high".

I have ltbpi, going on 16 yrs, hit by a truck riding my bike, I lost total use of my arm, and the only feeling I have left is PAIN. I've tried methadone, morphine, and all the other meds, the morphine pump, the electrical tens in the spinal cord, injections, etc. but only the meds relieve any pain. I take Lortab (hydrocodone), 3-4 tabs a day as needed when the pain really spikes. I also take 2mg Dilaudid in am and pm. And a must is Zoloft for the depression that can come from taking lortab, and from the "situation". The one drug that really changed my life was only prescribed a few years ago, which was Trazadone which allows me to sleep thru the night. What a difference that makes! For about 12 years I woke up 5-6 x a night from the pain, never getting a full night of sleep.
I agree with you that causing pain relief but having limited use of your body is not worth any surgery, esp. when its so uncertain. I don't recommend that at all! When dealing with these drs, trust your gut, its usually right. You don't have to believe what they say esp. when you have a forum like this that tells you otherwise.
Keep fighting for yourself and my prayer is that you will find a good dr.
God Bless,
Jennifer