Dear Rich;

I saw your post and wanted to say how wonderful it is to read something POSITIVE for a change!!!  I am so happy that you have found pain relief with the pump.  Also being able to stop all oral meds for BTP. That is a HUGE thing for us pain patients and it makes me so happy to read that!  

I just had my consultation for the pump, and it all comes down to $$$.  Who would pay, what kind of cost is it for refills and having another pain doc follow me for the pump...I would never leave my pain doc, he is a caring man, the Medical Director of his Hospital, and still takes the time to call his patients perswonally if there is something he needs to discuss with us.  Very rare!  Being a nurse for 20 years (although retired now d/t my pain), and also have been married to a doc for 9 years, I know how rare the personal communication is this day and age, with all that doctors must deal with daily that has nothing to do with seeing patients.  SO much business and insurance issues, Independant Physician Associations to merge with, then un-merge with.  It is truly a stressful job and to work with him in his office showed me just how much Internal Medicine docs do. Then there are the hospitalized patients.  The families.  The emergencies.... Whoops didn't mean to go on and on there...

Not sure where I stand on my pump decision; I did say to myself no more surgeries, and I knew this would be the LAST thing I would try, or actually it is the last procedure left to try.  Had em all. 

A couple questions about the pump:

Do you find it comfortable?

Do you go in for monthly refills at a pre-made time, or do you have to adjust when you go in around how your pain is responding, and adjust your doseages that way?

Did you go through any type of withdrawls during the 'changover'?

Does the pump ever need to be replaced, say with a newer model? (Forgot to ask consulting doc that one.)

Thanks, and you can send me a message through here if you want to answer my pump questions.   

Gentle Hugs to all who may be suffering tonight.

Good Morning, Welcome to the struggle!!  And thank you for the nice comments.  One of the things I 'learned' is that it's very important to keep as much positive that one can--sort of a glass half full sort of notion!!  I've been to the 'bottom' and even had a plan to make the exit from this world-but, a couple of great docs and prayer helped me hang on andthen I got a pump--and a month later bought a Harley Davidson--that was my 'reward' for getting strong enough for a pump-both physically and mentally.  THe docs weren't going to do a pump because my depression was so bad.  Short version-I went from being an athletic middle aged guy, riding horses, running, hiking, etc-to one day barely able to walk.  And the pain was excruciating.  Found that I had nerve damage to my ilio-inguinal and genito-femoral nerves.  About 10 surgeries later-in two years-I finally got the pump--much like you, there were no other options.  I had set a goal-in January of 2007-that if I could get strong enough to walk again, and strong enough to hold a bike up, I'd buy a Harley.  This was a way of replacing or supplanting some of the benefits I got from my active life-the outdoors, social, alone time, etc. and that I could not do any longer due to my injury.

My orals consisted of 160 mg/day of extended release oxycontin, 80 mg day of immediate release oxycodone for breakthrough pain, 3000 mg of Neurontin, 50 mg of Noritryptline, and then a couple of other milder anti-depressants.  So, when we did the pump I went through incredible withdrawls--it was not anticipated by anyone.  I left the hospital 2 days post surgery-with incredible nausea.  I made it two miles down the road and got very ill, called the dr and was re-admitted for about 4 more days as they tried to get my nausea under control.  I went through pretty nasty withdrawls for over a month-I lost 35 pounds.  YIKES.

Now I'm back to my almost normal weight as I approach my third year anniversary of the pump.  It has literally given my life back to me.  Please u nderstand that I still have pain--but because of the small dosage my side effects are minimal-that's a great thing. 

Refills:  I used to get filled every 20 days--because my dosage was so high; Then a switch from morhpine to hydromorphone extended my time.  Over the last 2.5 years I've decreased my pump output three times: 10% then 4 or 5 months later another 10%, and then about six months later 5% more.  I went from over 4.2 units per day to just about 3.0 per day now.  and, off the orals.  SO it's been a real journey of fun LOL!!

With every decrease I had noticable changes in my behavior, cognition, and affect.  So it's well worth decreasing as long as one can handle it.

The pump life depends on output, rate, etc.  Something like 5-7 years before the battery dies.  That's another surgery. 

The relationship with the physician is most a critical to the success I believe.  My docs used to call me at home on the evenings and weekends because they were concerned about me.  As you already said, one does not get that level of care generally.  But I gu ess when they saw how bad I was, and they new my mental health was hanging by a thread they felt a need to stay connected.  Thank God they did so!!

I have to go to work--OH YEAH, i returned to my teaching job full time!!  I had been off for 2.5 years.  So hows that for a 'story?'  For 2.5 yrs I was forced to spend my days in a recliner, sleep in a recliner, be so drugged I would get lost in my community, and never ever have reductions in pain. To a guy who is back teaching full time and riding 25 thousand miles a year on a Harley. I actually sold my car when I made the switch--sort of a 'full time' bike rider because I CAN!!

Write again if you'd like.  I would be happy to exchange my 'e' mail with you, but that's up to you.

Take Good Care,

Remember it will get better.

Rich

Hi Rich,

Thanks for your answer and all the info about your pump experience.  

After my 3rd back surgery, a Thoracic Fusion with Discectomy, removal of two rib heads for fusion and Costotransversectomy---I was again able to function.  For the first time in a long time, my pain level was wayyy down, I was off all narcotics, back at the gym 3-4 days /week with 1 hour of aerobics then an hour or longer with weights.  That's just been me, the way my life was...full of water skiing and hiking and swimming and body surfing and...well you get the idea.  I was an athletic gal most of my life. 

Dealing with the pain PRE surgery was nothing compared to the post-surgical pain.  Worst of everything done to my spine.  Then the year of feeling great.  Went back to Hospice Nursing; driving a lot on the So. CA freeways.  Ended up messing up my knee in step aerobics, had a big surgery on that knee after the roll-over accident I was in in High School.  A hazing for cheerleading that went drastically wrong.  So, after the 2nd knee surgery on that leg, I found that getting in and out of the car and driving in general was beginning to cause pain in my back.  It increased quickly and came on hard.  I had to stop working for awhile to figure out wtf now?!?!?!  Apparently, T-8 herniated, the level above the fusion as is known to happen; the fusion causes weakining in the levels above.  I have Osteophytes that can not be operated on, also severe Spinal Stenosis @ multiple levels.  It was the first sugery I had--to take out a peice of bone impeding the cord.  But there are too many to operate now.  So I was considered a "Great Candidate" for the pump by my doc. 

I know it is confusing to read another's pain story, because it is our life story.

It has been very hard to go from taking care of others for a living (20 year nurse),  to needing help myself.  Really tough.  I am accepting of this pain that has controlled most of my life for the past 14 years.....well Rich I'd enjoy emailing with you also if you'd like--you can send me a message.  I also write a blog and if you'd like to stop by....leave a comment so I know you were there!! :)

Shauna

http://shaunaslifeinpain.blogspot.com  

Greetings

Thanks so much for the nice comments.  I was trying to leave yesterday on my ride to Pittsburgh, it's actually one of the 'goals' I set for myself-to bet strong enough to make the journey.  It's take an while,. but I'm ready.  Well, yesterday I stopped at the Harley shop in Portland I frequent for a friends funeral-the plan was for us to all ride to the Willamette National Cemetery for his memorial.  There were 125+ bikes.  Well, we got on the freeway, high way 205, and it was terrible.  U betcha.
I'm leaving a day late-stopped at Latus yesterday for a funeral ride for a friend-guy who worked there.  We all headed out north on I-205-about 125 Harleys-Once we hit the freeway it was chaos-people in cars were cutting us off, breaking into our line, etc.  Well, I'm riding about the end of the group, and up ahead I see brake lights and from cars, and bikes,and I see a couple of bikes going down-Everyone was hard on the brake-and as I was slowing,  the next thing I know is some woman comes flying next to me-hitting me at about 50 mph-it knocked me to the left and I was trying to hold it up, and then I was hit again from the left rear-That impact knocked me almost over-so far in fact that the side of my exhauust is now gouged from the road,and my foot rest was pushed clear up to the engine.  My engine guard got messed up-twisted and scratchd as well as the supporting braces on my saddlebags  are bent, and my front fender has a dent from the woman hittinng me.  WHEW-Friends riding behind me said I did a masterful job of not going down.  I made it to the side of the road-through the bikes that were lying down and two women who had fallen.  IT was as close to losing it that I ever want to be.  Traffic was a mess with about a dozen bikes scattered across 205-And a couple of people down-and the cars still kept trying to drive through--amazing.  Thank God nobody got seriously injured, although ambulances did transport two women they are both doing fine now. Everyone was shaken badly. 
So, about a couple of thousand dollars in damage and a little sore from my leg hitting the ground so hard, I'm going to try and get going again today.
I'll talk again later.
Rich