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Pain pump, I have one, how about one for you?

Chronic Pain | Last Active: May 4 11:25am | Replies (319)

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I have had several back issues for many years. I suppose there is one diagnosis that would explain it all but that hasn't come my way. I had a disk removed 14 years ago after 10 years of pain. Not successful. The operation was to take 45 minutes. It took over 3 hours due to large amounts of scar tissue around my spin. No explanation for the scaring. In 2011 I had 3 vertebrae fused in my neck. Same situation. A 45 minute operation that took more than 3 hours because of scar tissue. That was successful. I also had carpel tunnel surgery, partially successful. I had a lot of pain in my hands and arms caused by repeated motions in my work as a glass artist. (See stephenhodder.com). Both of my feet are deformed and have also been a source of pain. I've had shoulder and knee surgery, both to relieve pain, both unsuccessful. My ability to walk is greatly limited by sciatica. I use a cane and/or a walker. Before the pump I also used a wheel chair. I also have arthritis.

I was treated with various opioids starting with 5 mg. Hydrocodon. I went off them and back on them etc. I was given Tramadol when it first hit the market. I tried nsaids, I use Celebrex, Tylenol, and lidocaine patches. I kept getting worse until I had to retire from most of my work in 2007 and then retire completely in 2011 from anything to do with glass. I was given morphine which was not effective. I was given larger and larger doses of Oxycontin and then Dilaudid was added along with Valium for cramping. It would work for awhile and then my deterioration would out pace the drugs. I had also tried Fentanyl patches which hadn't worked well for me. I was never given enough medication to completely end my pain and that is important. If you take enough to actually end your pain you run the risk of having some left in your system after your pain is gone. That's when the brain says. "Party time", and you get high. You get high, you get addicted. I also want to add at this point, no one over prescribed for me. Getting meds was like pulling teeth. I don't really believe everyone who says the Doctor got me addicted. I believe many of those who got a habit got it by misusing the drug they were given.

Throughout this time I was accused of being an addict. I was made to feel like a criminal. At one point one of the only Docs that would treat pain patients at my clinic was told they could no longer write for pain med. Most patients were left high and dry. I refused to accept that and said fine, get me another Doctor who will continue my treatment. Reluctantly they did. When that Doctor retired they got me another. On one hand there were doctors who tried their best to help me, on the other hand there was a system being put into play to make my treatment impossible.

Then came the cancer. A very rare and not well understood sarcoma. Driving was one of the hardest things for me to do and now I had to do a 2 hour round trip for radiation everyday for a month. My adult son just about carried me in to my last treatment. While being treated for sarcoma at the U of MN I learned about the Pain Management clinic and got started there. I met with a Psychiatrist and a Neurologist. We discussed the neurostimulator and the pain pump. Meanwhile they took over my meds. It was great. No one distrusted me, I was treated with respect, not that other doctors hadn't treated me well but none possessed their level of understanding. They raised my drug levels significantly and recognized that I would need treatment for the rest of my life. I should note that this clinic also makes determination that some patients can do without narcotics and helps them achieve that goal. My doctors decided the pain pump would be right for me but I couldn't get it right away. My cancer treatment nearly killed me and I kept ending up in the hospital with no immune system. I had already had radiation, surgery and some chemo. I had very large chemo doses but could never finish the course of treatment that was prescribed. I had to wait one year after my last infection to have the pain pump surgery. Part of the surgery involves running a catheter up your spine to leak the drug directly where the problem is and if an infection got into that catheter it would have been curtains for me.

I had my surgery in early 2016. By that time I was taking 200 mgs. of oxycontin and 32 mgs. of Dilaudid and 20 mgs. of valium daily and was still have severe pain. (32 mgs. of Dilaudid equals about another 100 mgs. of Oxycontin.) Over the 72 hours following surgery my oral meds were cut to 60 mgs. of Oxycontin and 16 mgs. of dilaudid and no valium. Shortly after that the oxycontin was reduced to 30 mgs. Recently I stopped taking the oxycontin on a regular basis. I still have the 16 mgs. of Dilaudid if I need it. My Doctor believe these small amounts of oral drugs have a very beneficial placebo effect and I am inclined to agree. I plan to give them up this year at least long enough to determine if they are still useful but they are in truth, miniscule doses compared to what the pump delivers.

In the months following my operation I saw my Surgeon regularly. The pump he placed in my abdomen was controlled by a remote that he had. It also recorded every dose I got. With each visit he turned it up a little more until it would not be prudent to turn it any higher. At too high a level you run the risk of flooding the sensors in your spin and rendering the meds useless. So now I have the pump inside my abdomen and the catheter running up my spine. I'm getting about 2.74 mgs. of Dilaudid every 24 hours plus I can give my self 10 "bumps" of about .01 mgs in 24 hours by holding a remote control over the pump and pressing a button. The pump records all these doses and when you took them which helps the Doctor know if he needs to turn the pump up more. Unless I'm up and walking or standing I don't experience much back pain. I sleep through the night most nights. My cancer treatment which appears to have been successful left me with severe neuropathy in my hands and feet. I take Amitriptyline and Lyrica for that as well as for leg pain caused by the compression garment I wear on my right let 23 hours per day. Part of my sarcoma treatment was the removal of 20 Lymph nods in my abdomen which now requires the compression along with daily massage to maintain good health. I've been back in the gym for over a year using a Nu-step machine which is a seated cross trainer. No load on the back. I also did a fairly aggressive course to PT after getting my pump. I did many courses of PT over the years along with anything else anyone could think of. Electro Sonograms, Rolfing, Craniosacral release, which by the way is just fantastic if you get someone who is properly trained in how to do it, trigger point release etc. etc. I did it all. You had to jump through all those hoops in order to get any meds at all which may or may not be a good thing. PT did help me, Cranial sacral release was a Godsend, other things, not so much.

Before the pain pump my life was not really worth living. I couldn't do any of the things I done for years like walking, dancing, bow hunting, fishing, blowing glass and gardening. I still don't do many of those things but I do still cook and play the guitar and sing. I was just starting to get professional work when I got cancer. After cancer I had to relearn everything about music and I don't know if I'll ever work again but I haven't given up. The neuropathy took the feeling in the ends of my fingers so I had to start over with the guitar. Exertion is hard as I lost a lung to the chemo treatments and the chronic pneumonia that came with the chemo.

Looking back at what I've written here it sounds like it's been one hell of a ride. But let's get real. At this moment I have no pain anywhere in my body. That will change as the day goes on but that's not in this moment. The fog that came with the high doses of oral meds is gone, I'm clear as a bell, an old bell but a bell none the less. I have more quality of life than I had in the 10 years before the pump. I go to my Doctor every 3 months for a pump refill. It takes all of 15 minutes in his office, the actual procedure is almost painless and take about 3 minutes. Every five years I will get a new pump but who knows, the next one might be good for the rest of my life. This is new technology and it's getting better everyday. My max dose is now about 4.674 mgs. per day if I take all 10 bumps which I never do. Meds taken with the pump are about 300 time more effective than taken orally. That the equivalent of 1400 mgs. of Dilaudid with non of the side effects. No drowsiness, no constipation that a little fiber and a good diet won't handle. If the pump fails, its default is to shut down in which case I would according to my doctor experience withdrawal and need to get to an emergency room. Big deal. Nothing is risk free. We choose to go on and live or we lay down and die. Clearly, I have made my choice.

I believe the pump is a good choice for anyone who will be in pain for the rest of their lives. Try everything else first if you must. If you can be fixed get fixed. If you can't, and other treatments don't work, consider the pump.

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Replies to "I have had several back issues for many years. I suppose there is one diagnosis that..."

You have certainly been through the ringer!
I admire your strength and determination.
I pray for your good health.
Ronnie (GRANDMAr)

What a journey. Thank you for taking the time to share all of the details. So happy you found a solution. It’s encouraging! In trying to understand how the pain pump works, you mentioned that it goes in your spine. Is that because that is where your pain is or is that because you’re it’s is where the nerve is all originate? I expect to be a chronic pain patient for the rest of my life, this sounds like a Incredible solution.

Would like to hear how you are doing after two years of pain pump please.

Dear Fellow "Walking Wounded" person - I Really hope you're still on this site. I read almost your entire "string" and was moved to join the site & respond.

Your Story was compelling & So VERY Hopeful. It is the 1st (Personal story) I have been able to relate to... I would love to find out how you're doing 5/9/2022
Although my history is different then yours: I Believe our "Fighting / Surviving Spirits" are uniquely similar.
This morning I was given the Pain Pump as my best (if not Last) option.
I am frightened to "Rock" the proverbial boat. For the past 9 years (since I was rear-ended by a commercial truck & trailer I "thought" I had figured out a way to stabilize & manage my pain without any real side effects or serious reductions in mental functioning.
Prior to the 2013 truck accident:
I had broken my back in multiple places. L1 Burst with ensuing "domino effect" fracturing a many of other vertebras. They managed to save me Humpty-Dumpty style with an emergency Life-flight, followed by an 11 hour T11 - L3 Laminectomy surgery including hauling out a big hunk of hip bone grafted to replace the missing" L1.
Add (2) 7.5" titanium rods (4) 3.5" screws & (2) 5.5" hooks & you have my back BEFORE a 30,000 pound truck slammed into me at 50 MPH.

Recovering from the 1st accident was fast & easy for me - My business was 13 months old & I literally had to work right out of the hospital bed. In the subsequent years, I Often worked over 100 hours per week, Played 104 holes in a (1) day charity golf-a-thon. That was my Pre-Truck life.

After the Truck accident EVERYthing changed. I Really had to fight (for my life) to get back to some semblance of living. (Not my life, but A life).

The "med history" is the simplest way to depict how messed up my body was after truck & how far I've been able to fight my way back...
I Instigated & Successfully Implemented, an approximate 90% pain med reduction: Without withdrawal & at the time: AGAINST medical advice.
(1) 100 mcg patch every 48 hour (And 300 Norcos Per Month)
(1) 25 mcg patch every 48 - 72 hours (And 150 - 180 Norcos Per Month)
***However, between the Insurance & The Pharmacist: They will only allow 100 per day - IF they allow it at All...
I too have been lied to, humiliated, shamed, lectured & (Literally) verbally abused by "well meaning" but ignorant pharmacists. Even After my Doctor (of 20 years) personally called to explain my injuries.

Politics has (of late) made those of us with Medically Unfixable Bodies Criminally Offensive. I know you understand... Your distinction between addiction & dependency is the best I've read capturing the difference,
With All medical alternatives exhausted: "Hiding" the pain from my brain has been the only thing my medical team has been able to offer... NOW because of the Incessant Bureaucratic Pressure: They are removing that option as well.
Like you, I have tried it all: Cortisone, Epidurals, Thousands of hours of PT, Yoga, Power Yoga plus pus Plus...

Additionally, I have developed hundreds of physiological & psychological (NON Narcotic) work arounds" & have lower my meds as far as I can (Too far really) & still keep a roof over my head & dogfood in the bowl.
Put Plainly I will not be able to fight / manage the pain enough to earn a living or care for myself.
Like you, The VERY Last Thing I want is ANY Type of Drug Induced "High".
I NEED MY BRAIN Actively Functioning & Clear. My Clear mind allows me to think my way through the things my body can no longer do. It protects me from situations or circumstances that could do additional damage to my already broken body.
Enough About Me!
Back To You & Your Illustrious, Triumphant Journey: I have so many questions (for you) & Gosh, I would be So Much More than indebted if you'd be willing to chat.
Most Respectfully.
Little d

This was an incredibly educational post. Thank you. I have an SCS that is working for me. But it is good to know there is something out there if it failed. I am so thankful for scientific research in this area.