Trial Pain Pump

Hello,

I am new to this site and from good advice I was directed to start a new topic. Anyhoo I had a burst disc in 2005 and ended up wit permanent nerve damage to my syatic nerve (sorry if the medical spelling is wrong) down my left leg and a spinal fusion of L5 & S1. I understood the nerve damage was irreversable and dealt witn the shooting pains and numbness for 4 years. The the pain in my lower back and on top of my hips became unbearable. I saw my doctor who suggested physical therapy and Gabapentin along with Vicoden. Did not help. then referred to a orthopedic surgeon who referred me to a pain management doc. I had the steriod epidermal twice and the radio frequency to burn the nerve, (no help again). The had the neurostimulator trial, (no help, just added a new sensation that was uncomfortable). Now I just had the pain pump trial put in yesterday, I was just wondering if anyone has had similiar problems and doctors suggestions and wht their outcomes were. I so much want to get off the Percocete, I can not stand the side effects anymore.

Thank you Chartreux,

I Hope you can get whatever relief you can as well. Any other help with pros Vs cons would be greatly appreciated.

Hi... welcome to the board...

I'm sorry for all of the pain you are experiencing... sciatic nerve pain is the worst thing ever!! It sounds like you are now doing a trial for the intrathecal pain pump...outpatient, is this correct?

I had the pain pump trial at the end of '08. I ended up getting meningitis from the cathetar... It was a nightmare. BUT, I still could tell that the pump would probably be effective for me, though. It did reduce my overall pain...before the headache from h*** began!!

This, though, was after 5 years of being on every different narcotic there is, at about every different strength and combination. For me, I would try to exhaust the oral medication before getting the pump implanted - but that's just my opinion. Have you been on any long-lasting pain medication... like MS Contin; Oxycontin; Avinza; Duragesic Patches; etc??

At the end of the day... I've decided to hold off on getting the pump implanted. My oral meds seem to be holding me over for the moment. I always know the pump is there as an option... so that's a good thing. I'm also only 36 years old... so I want to make good decision for the long haul...because I don't think my health issues are going anywhere.

Well, I hope that helps some... and I wish you the best of success with the trial. Others gave you great suggestions, too. I'd search "pain pumps" and just do a bunch of reading...that's what I did when I first became a member a couple of years ago. Finally, Stella Marie said something super important... you really want to make sure you have a doctor that is experienced. I think that is the main difference between a successful pain pump, and - as Stella Marie said - being disappointed with the outcome.

Good luck to you... and keep posting!
Take care...Tina

Hi and welcome to our little slice of nut-house heaven....LOL....But seriously, are you having some problems with the trial?  We have similar issues....I have perm. nerve damage, been through many ESI, PT, a Lamenectomy in 1999, and Spinal Fusion without hardwear in 2005..they used the stuff they took out during surgery in place of metal....and I still have serious pain.  I just had another MRI a few weeks ago and have major stenosis and DDD and now DJD. 

I take 120 mg. Methadone a day along with Oxycodone IR 30 mg. 4 times a day for BT pain.  I go back to the PM Doc on April 7th for my follow up and to review my MRI findings.  We are also considering a change in my meds.  He has brought up switching me to Opana ER 40 mg. 2 times a day...leaving me on only 80 mg. Methadone and hopefully he'll keep me on my BT meds.  He tried to change me to Morphine this past year but he didn't titrate it properly and thought that I could just do it mg. for mg.  so he only had me taking 120 mg. Morphine a day....I had withdrawls that first day!!     No No No....can't have that/can we?  The pain scares me, but going through withdrawls scares me even more.

 

I asked him about the Pain Pump and he said that I would have to do a stimulator trial first.... NOPE...that won't happen.  so I guess I'm one of the people that will take pills for the rest of my life.

 

So, as you see we do have something in common....please let me know how it goes...I'm gauging my efforts to try this on how well you do or don't do....   Good Luck

 

Me.

Hi,

Pumps work the best with those in chronic pain.  If your pain comes and goes, then I can't come up with a reason why I'd go through all the problems associated with having one.  If you do live with a constant grind of pain 7/24, then a pump is the only way to go, but first find a doctor you can really trust.  These are not just a simple cell phone implanted in your body.  It's high tech, and it requires service and care so you really need to work with someone who really knows his stuff.  After you find the right doctor, listen, learn and then figure out if it's right for you.  Morphine pumps don't make all the pain go away, but they do make it so a person can deal with it a whole lot easier.  Bob.

After having internal morphine pumps for 8 years now, I'd guess you'd say I've been around for a while. First one lasted 5 1/2 years before the battery finally died so we replaced it out thus I'm now on my second one.

First, morphine pumps are no panacea that miraculously make all the pain go away. Morphine pumps are more about giving a constant dosage of whatever drug the doctor chooses on a regular interval that moderates your middle of the line pain load. Depending on your situation you could still find yourself taking oral narcotics such as OxyContin and OxyIR for breakthrough pain in addition to having the pump.

Second, there's a simple way to find out of your a good candidate for this kind of expensive to install and maintain option (your medical diagnosis and prognosis will greatly determine if you can get your insurance to pay for it in the first place). The doctor will check you into the hospital overnight and then inject morphine directly into your spinal fluid just like the pump eventually will. You'll know on the spot if you're feeling better or if there's no change with your pain. I was so amazed over how the pain eased off I was actually cried it felt so good. 4 hours later the pain returned and I was emotionally crushed. Whatever you do, make sure you're 100% honest with the doctor and the results. I have read where people lied to their doctors during the test claiming the pain had been greatly reduced when in fact it hadn't. They then got the pump installed and then complained the pump wasn't working. Of course it wasn't the pumps fault and the test had shown this fact. It was the patient who was at fault here. You'd never make this mistake, but it's one worth bringing up since others are not always as smart as you are. While it's an option worth consideration, the sad fact is that it's always the doctors and their medical documentation about your health situation that will be the ultimate determining factor as far as you actually getting this high priced piece of technology.

Third, there are some serious consequences that go with having these pumps. First being the install. Mine leaked for the first two weeks at the sight everything was sewn into the spinal column. The first four days I was in hell on earth as my spinal fluid leaked forth. Everything did eventually seal up, but wow were those first days loo-loos. There was also the huge lump on my back about the size of an avocado pit that took over 6 months before finally easing down to around a peach pit sized lump that I still have to this day. It can be very uncomfortable during the first months, and I still find my back getting sore for no reason whatsoever even after all these years. Then there's the hockey puck sized pump that's located in a pocket under your tummy in front - usually to the left of the bellybutton. We're talking about no pacemaker sized device, we're talking about a rather cumbersome round machine that is annoying at best. My second pump slid down south a bit and now resides directly on the belt/waist line which makes pants considerably more uncomfortable to wear depending on the size and style. Since this device is located in a pocket that's created right under the skin, it doesn't matter how much extra or less tummy fat you have - they all are in our way to some degree or another.

Getting them refilled has become easier thanks to modification in design over the years. I use to go in every 8 weeks but now it's more like every 4 1/2 to 5 months thanks to the reservoir holding so much more medication than in older models. Refills are not painful, but they can be uncomfortable.

I went 4 months between my first pump and my second pump due to having almost died after having gone septic, blood clots hitting the lungs plus my amputation that needed tending to first. We also had to get a medi-port and clot buster installed leading into my lungs off the main vein so I really saw what life was like without the pump v/s with it. The differences in managing my pain with my beloved pump astounded even me. When we got the new one turned on (with even a higher dosage than before), I was blown away that these $30,000 machines could make such a huge difference so of course I consider this a lifesaver - but nothing is perfect and there's always good that goes with the bad.

There is no silver bullet that eradicates all pain so don't go out asking for it. There are new difficulties associated with bending over a pump that's always in our way. There's the problems associated with the install and the first months after it's all set up. In the end it all comes down to your relationship between you and your doctor. If you know him very well and you trust him, then I'd do what he says. If there's any doubt whatsoever, then I'd hold off till your 99% sure this is the only option left and only after you've had successful results with the test.

I might not have told you everything you wanted to hear, but I assure you I knew you wanted a straight answer so that's what I've tried to share here. All the best of luck whichever direction you go. Keep me posted. I'd like to know how things turn out. Bob.

OMG....reading your post was like reading my own...Everything except the nerve ablation...and the stimulator....How weird is that...anyway, I would love to know more about the pain pump trial...I have been on Methadone 120 mg. and Oxycodone 30 mg. up to 5 a day for years....and it's not working very well....I asked my PM Dr. about a Pain Pump but they don't do them....I am thinking I might like to try one myself....Could you email me and tell me about it? It's on my profile how you can reach me


Rhonda