After an accident in 1997 left me with crushed nerves from the waist down including the left leg along with rather progressive RSD that spread to my right leg 5 years ago, pain became my constant companion. While I'm learning new things each and every day, I can say I've been around the block when it comes to both oral pain medications and infusion type ideas such as my beloved morphine pump that changed my life. I'd like to help others at whatever stage you're at if I can because yes, I do understand.

Anytime I hear those immortal words, "I'd never take this narcotic or allow that procedure or implant, because I'm stronger than that," I'd like to ask if they have any idea about what real pain can be? See the sad fact of life is that once the pain gets bad enough, you'll do anything to get away from it - and I do mean ANYTHING! If I had to drink cat pee, but it would make the pain ease up at least a little, here's my glass. When pain gets bad enough, desperation sets in, but being stupid can as well. I know, I was at the head of my class when I took that course twice I enjoyed it so much.

It's all about finding the right doctor and then taking the time to build the trust. When my Mayo's specialist decided I needed a pain doctor, he found another Mayo's trained guy who's simply changed my life.

As my damage and nerves continue to deteriorate and die as the narcotic tissue damaged and diseased my leg(s), the pain grew exponentially. Though I can't say I have actually fought depression since that's just not my style, I will say that I had many days when I just sort wished sleep would become eternal.

When the oral narcotics hit 160 mg of OxyContin plus the OxyIR kickers, plus the Morphine Sulfate kickers were my typical daily bread, we knew we had to find something else. That's when the morphine pump was finally discussed and wow did this scare the living daylights out of me, but we proceeded with the overnight stay in the hospital test anyway.

After they finally injected my spine with the good stuff, for 4 glorious hours I was actually pain free. With tears rolling off my face I thought I'd died and gone to heaven, but then I realized I was to naughty to have ever earned that privilege so instead it must be the medication. The test results were immediate and I was just blown away.

The hockey puck sized device was installed the following week. My first pump needed to be refilled every 8 weeks even though I was on the highest concentration (morphine comes in different strengths). After 5 1/2 years the battery died. That's when I tanked emotionally as all this pain just flooded back. Meanwhile I was battling infections in the legs and body-wide while a clot decided to head north and hit my lungs. Talk about a really crummy batch of days all hitting at once. Since I was such a high surgery risk and since we had me scheduled for a duel above the knee amputation, the pain doctor decided we'd have to hold back on my pump replacement till after I became stabilized post amputation. For 4 months, it was rough. After the amputation there were six weeks where I bounced off the walls and my poor wife joined me because of the pain being that unbearable. Then my new pump was reinstalled.

This time it's in the same location, except it slid south, so it's riding right along the belt line which makes bending over a bit of a thrill in all the wrong ways, yet there's not a day I'm not thankful for these amazing devices. When I saw an X-ray of how this all looks inside me, I became rather queasy over all the plumbing that runs through the middle of my body. Since my new pump has a much larger reservoir I don't have to have it filled near as often and since we increased my dosage even more, I'm now off the Morphine Sulfate. I'm still on my OxyContin and OxyIR cocktail combo.

Don't look at a morphine pump as a silver bullet. They're not. Don't expect all the pain to go away, because it probably won't. Do look at it as the most amazing device you'll ever see as the pain somehow eases out so you're just not blasted like you use to be now that the pain is more modulated throughout the day.

These are not small devices and don't even begin to compare them with pacemakers since they're so much larger, but I don't care about being lopsided - only that the pain is managed better.

For anyone who's wondering if this might work, then there's an easy answer. Go pack an overnight bag and check yourself in the hospital for an overnight stay with crummy food and a bed-mate who has bad taste in TV viewing. Then let the doctors fill up your spine. You'll know in minutes and you're life might just change forever like mine has.

Here's hoping you all get to take the same ride I have. Bob.

Bob- I have got to tell you I liked your handle from the moment I first laid eyes on it. Without looking, I just Knew you had to be from near JeffCity Mo. You see, I have family galore around the KC environs and spent several childhood years in that area myself. Yep.

Thankfully you have come onboard and have begun what was SO needed, the perspective from the Pain Pump viewpoint. So true, there is no remedy, No Remedy, which will bring a silver bullet end to the pain any of us has endured; however, pain CAN be better managed through therapies such as you now introduce to all. I, on the other hand, am one of those SCS folks bent for leather on the path to have permanent implant of what is now a Boston Scientific neuro stim unit. With such a device I have a goal of finding pain remediation through the BORG collective sans meds.

My docs are on team with me as having a goal to leave morphine and the others of my laundry list behind. We'll see, we'll see. My physiatrist has assured me I will hate him as we strive to ween me off the morphine, but I am game, because I have every hope of being able to be professionally practicing once again in some means. Be nice to bring in a "paycheck" once again.

You hang in there regarding the amputation issues along with the pain management. Hard yes. I have had family members and close friends alike who had to go with loss of limbs for a variety of reasons from diabetes, to gun shots, to staph. Each handled theirs in different and positive ways. For you, it sounds as though you have a strong support center in your family and now here. We will gather around you Bob. Cheer when you wanna cheer, cry when you gotta cry, and pray regardless. In my life, I have found that prayer perspective has been ultra important maintaining sanity through PAIN. So, now there is an extra measure headed in your direction.

Anyway, for your strength in sharing with all of us on your new thread I welcome you and hope through this you reap the rewards of support sure to come because you sought first to reach out to others in their need.

Peace,
Mark56

Wow.
Thank you Bob. I am left speechless at the moment
And Mark ..... the comradere here is beyond belief.

It amazes me when I reflect back a few months and put myself in that mindframe of wishing for that 'eternal sleep' ...... yes I was there. You are spot on with describing where chronic pain can lead us.
And NOW, when I read such an inspiring testimony as this, it paints a bright future.....one that seemed impossible to obtain.

Have so much to say, but truthfully, I just want to absorb what you've shared and marvel in the gratitude that words cannot bring just yet.
Thank you so very much for coming aboard Bob!

Such a wonderful bunch of people have come together here, and we share on so many levels.....
This forum truly needs YOU.....

We be jammin now my friend!


.......all we need now is a tour bus !

Rae

God bless you Bob. You are a welcome relief in honesty, candidness and humor. I'm so glad you're here. You give a completely honest look at what the pump will be like and that's what's needed. Nothing is 100%.

I had the SCS for 6 months and the stupid thing didn't work right and it went south and tried to work itself out of me. they said i didn't have enough fat content in my body. well, then why did they do the trial of the morphine pump on me since it's much bigger? duh. they got my hopes up cause it took my pain away and then said i couldn't have it. grrrrr.

anyway, i'm glad you're doing better, painwise. i know you're not pain-free but we won't ever be. we can pray tho. god bless you. you are a pillar of strength. take care. hugs, lee

You'll never know how hesitant I was about making this original posting, but thanks to your kind heart, I'm glad I did. Your kindness is more than I'll ever deserve, but I thank you for it.

There's some really good topics out there we need to talk about, but I'm always concerned about how some people might take or receive certain issues that are well worth some serious discussion. You've helped motivate me to consider bringing a bit more on, but I can't deny there being some risk.

When I look upon all I've learned from insightful and brilliant people, I'm only reminded how much I still have to learn (and my own stupidity) and that I'll never have enough time to learn it all, but thanks to this venue, at least we've got a forum that's a great starting point.

Best of wishes to someone who really gave me one heck of a smile today, Bob.

Hello Bob- and thank you for your candor. We need to develop the full spectrum of topics which affect folks from these issues on which we touch. So many things are unsaid, and not for lack of trying, that bring tears to our eyes day in and day out. I will look forward to your next venture.

Appreciatively,
Mark56

How a guy who was raised out in San Diego ever turned country still has me a bit dazed, but it's probably just medications that's kicked in. Here my wife and me are on 5 acres in a 110 year old funky farmhouse she grew up in and I couldn't be more at peace. The area is so lovely.

Living halfway between the Nelson Gallery in Kansas City and St. Louis where there's a Vatican expo where they're now showing antiquities that have never been shown before to the public makes me so appreciative we live where we do. If you're ever coming through, we'd love to have you out.

When I was forced into giving up my job because of blasted narcotics it was a hit I wasn't prepared for so you'll never know how pleased and proud I am that you're figuring out a way to manage your pain and regain your life and income without them. I wish I was in your shoe (pardon the pun, but when you're legless like I am, they sort of dribble out) and I know you're going to get your foot back on level ground again.

There are other options for controlling pain, but between the greed and profit factor plus prejudices that some won't overcome, I'm afraid it's going to be a long road as we open our minds to other methodology - but hopefully it will come.

Because of the invasiveness of pain, only those who've really experienced it in it's fullest form can fully understand the desperation that accompanies it. I've been asked for years how I manage to keep a clear head when I'm on the load I'm taking and yet it's hard for others to understand how the pain eat the medication thus leaving behind no foggy brained, half dazed effects. Though there are some drugs that can, the beauty of morphine when properly prescribed is that it won't. It's quite evident you're a person of intellect who's a whole lot better at articulating topics that are worth discussing so others can better understand and comprehend the complexities involved with pain and the treatment options. Now please, get your fingers typing!

Thank you most kind one, Bob.

You spark yet ANOTHER tear !
The 'Good' kind of tears! Very touched. You made my day.

Memorial weekend is a holiday that has most of us with our hearts on our sleeves, as I'm sure we've all lost someone special somewhere along the path in our lives.......I find much comfort here at NT.....even if by just saying something 'silly'........ So,
For no particular reason at all, other than this making absolutely NO sense.....
here's a big batch of puppy dogs......one for each of us!
Have a great day!
Rae

Here you go through the darn test, the pain eases up and you know it can help when - whammy! I would have cried and probably for hours. What in the world was this doctor thinking, or was he?

For those who are thin like you and my mother (she never weighed more than 93 pounds my entire childhood), there's just not enough body to fit these rather invasive devices inside of. Maybe if they relocated it a bit higher or lower under some natural padding? Oops, did that slip out, but gee when it would have helped so much, it just hurts even worse when you don't have a place to install the stupid little sucker.

Maybe because this window got slammed shut you'll figure out a new one, but meanwhile you're suffering and that makes my heart so sad for you. Before giving up altogether, I would try and discuss this option with another specialist who might be able to figure out some other idea that would work.

Wishing you better days ahead, but appreciative for your kindness, Bob.

Bob: While my experienc has been a negative on because of my circumstances, your post has refocused me. It has made me remember back to my "before pump" days when my pain was completely intolorable. Since I've gotten the pump in my pain is being managed ok.

My dilemma is that I found out 2.5 months after I had it implanted in Oct 2011, that it had actually be FDA Class I recalled 3 months prior. My NEW doctor says I have a ticking time bomb in my body and need to have it immediately removed......