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Old 11-02-2006, 06:28 PM   #1
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pain pump not working

in 99 I started getting back pain around hip. went to neruologist and mri showed stenosis around l4 and 5. He referred to surgeon who said surgery only way and i would be back to work in three weeks. Well i did the surgery and she implanted a device called a cage to act as a spacer between vertabrae removed. Pain only got worse. after a few months and no releif, I tried to return to teaching( 27 years) But I could not stay on my feet for ore than a few minutes without pain that makes me lay down. I cannt sit in any type of chair without pain. Luckily and after reading about others, i see a great gift in that my pain reduces greatly when horizontal. in 2000 I had the cage removed because it never grew together and my back vert made loud snapping sounds when flexed. Another surgeon added straps and screws around l4 and 5 to secure the site. pain persisted. 2001 more surgery to file bone stenosis but still same pain. have been taking oxycoontin since 99 I just turned 60 . I went from ten to twenty twice a day. tried 40mg but no improvement and got woozy from it. went back to 20. have tried neourontin and other drugs but nothing helped. This spring I saw about a pain pump by Medtronic and pain management surgeon said he thought it would help but my fusion doctor said probably would not help. He installed a temp pump with meds in a bag and drug went into spinal fluid. This helped and for two weeks i was so happy,Not pain free but 50% better. I thought i was going to get my life back. i could do most things as a normal man. The pump was then installed permanantly under my fat layer in the belly. For six months i have tried three differnt meds in the pump but none offer relief. the meds go into the spinal cord not the surronding fluid. two of them have made me sick and had one containing buvivicaine had to be flushed out.
the doctor says I cannot have a temp forever because of chance of infection but the permanant pump I think sends the drug to the wrong place. what can I do? he says don't give up and many drugs to try but I am getting frustrated.My wife says just get the pump removed and live on pills forever.Any ideas?

 
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Old 11-03-2006, 08:13 AM   #2
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Re: pain pump not working

Howdy, Have the they checked placement of the catheter that goes to your intrathecal space "where the fluid is" by running flouro dye through it? If the cath has pulled out the intrathecal space, the meds would be no where near as effective as they should be. The intrathecal space is the area filled with cerebral spinal fluid that surrounds the actual spinal cord. So a pump is supposed to deliver meds to the IT space and your spinal fluid, not placed into your spinal cord which would cause more damage. You happen to have exponentially more receptors in the thecal space and the drugs migrate into the cord itself binding to opiate receptors. I have a pump too and it relieves about 50% of my pain.

When they do the trial or use external pumps , they put the cath in the same place unless they don't want to risk a spinal fluid leak and then they place it in the epidural space, the free space around the thecal sack where there is no spinal fluid, but then the drugs have to migrate through the thecal sac and dura membrane before reaching the fluid and then the spinal cord. Epidural meds are about 1/3 as potent as Intrathecal meds. You can confirm all this at the medtronics web site or simply searching for intrathecal drug delivery will lead you to the medtronics site which explains the difference between the thecal space and the cord.

I'm not sure why someone has told you the implanted cath isn't placed in the IT space where the fluid is, maybe we generalize the spine too much and the doc didn't explain the specifics of cath placement. If the cath was placed in the epidural space, they would simply use more drug to obtain the same effect of delivering meds to the fluid in the IT space, but I have never heard of this being intentionally done. It is a testinmg metod but not the permanant implant method. I've also never heard of a cath placed into the actual spinal cord, That could paralyze you and the drugs need to be in the fluid or they don't migrate up and down the the space sourounding your spinal cord.

The problem may go back to the failed fusion. Without making that area stable, no matter how much drug you deliver the problem continues to worsen. When you stand or walk, nerves are compressed, stretched, or bone grinds on bone and no amount of drug is going to mask an unstable spine. The last attempt to revise and fuse my lumbar spine, L1-S1 also failed, I've broken this set of hardware too and know the crunching and squeaking very well. This is why I haven't been able to obtain better pain relief. However another surgery at this point isn't realistic. Basically 3 surgeries failed, there is nothing to make me think extending a 6 level fusion to 9 levels, is going to produce better results when I haven’t fused at a single level yet.

There is a new implantable bone growth stim they leave in, that may help with another revision. I'm not looking into it because there is a big difference between trying to get 1 or 2 levels to fuse and trying to get 9 levels to fuse after it's already failed 3 times.

Your spine being unstable is likely why your surgeon didn't believe the pump would be an answer. Until it's stabilized, you will likely continue to have problems unless you can strengthen your core muscles to the point that they provide addition stability, have a successful fusion or provide stability by external bracing.

It really doesn't make sense that an external pump would be any more effective than an internal pump.. The same meds are delivered to the same place. So it doesn't make sense to risk spinal meningitis with an external pump when there is no reason for an external pump to work any better than an internal.

That's what's making me think the cath has slipped out of the IT space or your spine has simply continued to worsen and the instability is making it more and more difficult to maintain any constant level of pain relief.

Also going through every med available in 6 months sounds extremely unusual. It took 6 months and 16 adjustments to titrate the first med morphine" they used on me. That was fine but the docs were concerned about the concentration of morphine,"# of mgs per ml". High morphine concentration can block the cath tip so they switched to dialudid and that took another 4 months to find the right dose. I tried marcaine and couldn't P, I tried Baclofen with the opiates and it caused sexual dysfunction. I'm only 40 and not quite ready to give it all up despite the pain.

Actually, sex causes a massive release of endorphins and I'm the most comfortable when being intimate. There was a show on TV where a guy had a prescription from a PM doc to watch as much Porn as needed because of the release of endorphins. It was funny, very innaproraite to pop a tape in any TV you might happen to pass, but there is some scientific data to back the idea.

If they titrated the doses so fast they could test Morphine, Dilaudid, the Fentanyls and the adjunct meds in 6 months, how could your body ever get used to the side effects or adjust it to an effective dose? Did they move the doses up so quickly you experienced side effects you couldn’t tolerate? Do you mind if I ask what meds in what order? It takes time to adjust these meds and it should be done in tiny incremenets. A couple tenths of a mg can make a huge difference but can be done every couple weeks if you are tolerating them. If your not tolerating a med, the first step is to back off and slow down, not switch meds. It doesn't give you to many options if you stop at the first sign of a side effect you might get used too. 6 months is too quickly to know if one of the meds at the right dose might work better unless your flat out allergic., but that would have been found by the external pump.

Other problems may be contributing to the side effects you experience. If urinary retention was a problem with every drug, did you have your prostate checked? An enlarged prostate and IT meds together could certainly make things intolerable, but is it the pump or your prostate. Nerve impingement can also cause problems like urinary retention, loss of bowel and bladder control that may not be related to the pump or meds. We realy need more info, like what meds and what side effects made you change meds?

Finding pain relief with a spine that needs to be stabalized would be similar to asking a doc not to cast a broken bone and just treat the pain. Every time the bones move, no matter how much medication you take, it's going to hurt. So the key would be to stabilize anything that's moving that shouldn't be, that was the purpose of the fusion. Unfortunately it obviously failed if they removed the old cages and attempted to revise the fusion with a different approach.The attempt to revise the fusion may have failed too. That's where I'm at but in the last 8 months I have been able to strengthen my core muscles and excercise, I didn't have anything else to do and was hurting anyway, and it's made a huge difference .

It usually takes several years to be able to tell if a fusion failed or if the hardware is simply holding things in place. Until the hardware slips or breaks, Donor bone may be seen in an xray , but there is no test to determine if the bone is alive or dead and simply waiting to be reabsorbed. All my fusions were declared a success, right up until the hardware started snapping at about the 2 year mark.


With an unstable spine that still shifts and grinds and compresses nerves, managing pain is much more difficult. If your spine was stable, your pain levels would be stable and much easier to treat. Going back to orals will be just as hard as far as maintaining a constant level of pain relief, not complete relief but even maintaining 50% is tough if your spine is still slipping around. Orals are much more impairing than pump meds and if you have a chance at making it work, stick with it.

If it were me, I would want cath placement checked, a cath can pull out of the IT space even with implants and anchors Cath tips can become blocked with high concentrations of morphine which is less soluble than dilaudid and fentanyl.Caths can puill away from the pump and the meds dumped into the area surounding the space. Because it's delivered sub Q, it's not neccesrrily dangerous. If that's not the problem, try other meds and give them a chance. A pump is a lifetime thuings, I've seen folks take 2 years to find the right dose and combination of meds. You can take orals for pain that's not being relieved so there isn't an urgency to give up on finding the right med or dose.

You may want to discuss possible fusion revision to stabilize the problem area or consider external bracing to stabilize things so the meds can work. As long as your spine is unstable, maintaining any level of relief will be an uphill battle as your spine continues to shift and deteriorate.

6 months is extremely quick to give up on a pump. It may be time to check and make sure everything is where it is supposed to be, but I can't imagine running out of med options in just 6 months. If that was the case, You may be able to go back to a med that caused a problem, adjust it in smaller increments and adjust it slower to allow your body to adjust to the med.
Good luck, Dave

Last edited by Shoreline; 11-03-2006 at 08:59 AM.

 
Old 11-03-2006, 04:41 PM   #3
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Re: pain pump not working

have you ever tried a pain patch (fentanyl/duragesic)? that might be a thought. you may need to change the type of medicine you are on, if you have to remove the pump.

i wish you luck and hope you find relief soon!

 
Old 11-04-2006, 04:59 PM   #4
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Re: pain pump not working

Shoreline's answer was so thorough, I almost don't have anything to add. My problem was different,MS, not back problems, It can take a long time to adjust to the pump, your injury didn't happen overnite, so neither will relief. Normally PM docs will adjust your dose 5-7 percent usually at the time of a fill.Then you have a month to three to adjust depending on your dose. You didn't say why it isn't working, is it pain or side effects? Flipping from med to med so quickly doen't seem the best idea to me either. It is physically impossible for the catheter to be IN your spinal cord, it needs to be in the intrathecal space.Medtronics is a great asset, check out their website or call the 800 number. They met with my family and I before my pump went in, and answered all our questions. I hope you can work with the pump, it was a godsend to me. Unfortunately, I developed meningitis from either a contaminated fill, or a bacterial plaque on the catheter tip. The pump had to be removed, and I nearly died from complications of the meningitis. I wish I had it back, my pain conrtol and spasticity was much better. Unfortunately, I now have breast cancer, but that is a whole 'nother story.I am only 50 years old, and I think I have had my share of tough times like all of us on this board.Hope we can help.
Wishes for a pain free day and night.
Ginger Snap

 
Old 11-13-2006, 08:45 AM   #5
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Re: pain pump not working

My pain surgeon describes the placement of the catehter as in the spinal cord and differnt location of placement from the temporary which was only in the spinal fluid. The first drug was morphine solution. started at 1mg per day and each month went up to eventually 5mg and I had zero releif form it. He tried buvivicaine or some spelling close to this.
It made me so sick I could not get out of bed. He flushed it out and went back to morphine. He incresed next month to 6.5. this still did nothing for me and I still take the oxycontin 20 twice a day. two weeks ago I had a new drug put into my pump called hydromorphine or diladid as another name. it is flowing at 1 mg per day but i still feel no differnt than without the pump.After Thanksgiving I am scheduled to see him again and he probably will increase the rate again. I had few days of sweats and slight dizzinesss with the change of drug. this could be from the decrease medication causing withdrawl of some sort. the doctor said my symptoms from the buvivicaine sounded like morphine withdrqawl to him and not reaction to the drug but he took it out anyway. I only work four months out of the year and told him i could not experiment with a new drug during the summer months that caused sickness. Now my work is slower and am able to try something new. hense the new drug he is trying.

Perhaps this drug will work but i need to hang with it over the months until the doseage is increased and see.thank you for your helping comments. The medtronic rep was present at my first introduction of the temp where the fluid was suspended from my waist in a bag and she said she would be back for the implantation of the permanant pump but she did not show up and I have heard nothing from them. I looked at their web site before the surgery and saw how the thing worked.

thank you

 
Old 11-13-2006, 11:50 AM   #6
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Re: pain pump not working

Hey love life, Honestly, it just sounds like they are titrating so slowly, your loosing patience. The only thing that limits the dose is concentration per ml and with morphine and the side effects you experience. It took 6 months and 16 adjustment to get to a comfortable level of morphine. I was miserable at 10 mgs per day but 12.8 mgs made all the difference in the world. However I had also spent years on oral pain meds and my last oral dose of morphine prior to the pump was 600 mgs a day. They did see me more often than once a month. That has to suck, but it doesn't mean that a dose can't be reached given time and adjustments.

Even with an oral dose 10 times what you were on they only started me at 2mgs per day but they did see me every week for the first 6 weeks and made adjustments and then it went to every 2 weeks and then every 3, and the last couple were probably made a month apart. Once the morphine dose was right then we added bupivicaine, had side effects so we took that out. Then we used Baclofen but as that increased it caused side effects and I honestly didn't see the benefit so we slowly took that out.

They switched me from morphine to dilaudid because when you reach concentrations of 25-30 mgs per ml, you risk developing a granuloma, morphine isn't quite as soluble as the other meds and high concentrations cause it to crystalize at the tip of the cath.

When they switched me to dilaudid it took 3 months and 7 or 8 adjustments to get that right . There isn't an exact conversion especially when you may be able to tolerate the side effects of another med better than the previous. You may be able to tolerate more, receive more and get better relief.

AS far as changing drugs, Did you switch because of side effects or switch because you weren't getting relief? If you switch because your not getting relief and you can't stand being undermedicated, you could give up on dilaudid in a few months and then the only thing left is Fentanyl or suffentanyl.

I understand wanting it to work and the way it's presented, tried and sold, but making one adjustment a month certainly isn't maximizing it's ability. If you have a synchromed pump you also have the ability to adjust doses at certain times of the day, The pump can be programmed to deliver a higher dose from say 5am to 9 am to help with getting moving in the morning, or can be programmed to deliver a higher dose at night than in the day time to help with pain if the night is always worse than the day. Have you even gotten a chance to use that feature?

If you responded well to the trial, and well to an external pump, you do respond to intrathecal meds. Your doc may have done epidural placement for the external cath and intrathecal placement for the pump but if the cath is placed in your spinal cord, you have grounds for a law suite and that may be the cause of the pain your experiencing now.

The pattern that stands out is the slow adjustment rate and time between adjustments is so far apart. You grow impatient. Changing drugs just means starting over with finding the right dose and eventually there won't be anything else to try if no med was ever given a fair shot.

If your only and highest dose of oral pain meds was 40 mgs of oxy 2 or 3 times a day, orals were never given a fair shot before a pump was implanted. Since you never reached a level of oral relief, they don't have that data to use to convert to an IT dose. Basically nobody has been aggressive with oral meds or pump adjustments, but that doesn't mean the pump couldn't work if managed more aggressively. The only thing they were aggressive about was slapping a pump in you before trying every oral med available.

You don't need the medtronics rep to approve an increase, just a doc wiling to work safely and aggressively to optimize an expensive and potentially effective tool to manage pain.. The only thing limiting the dose should be your reported response and side effects. You know within days if the dose is right, why do you have to wait a month to make an adjustment? By then, your get so frustrated you're ready to say it doesn't work after 6 months. The biggest shame would be to give up on it without giving it a fair shot.

None of this should be taken as an insult to you Hope, your doc is the one making you go a month between adjustments and giving up at 5mgs of morphine. What's his limit with dilaudid, 2 mgs? The expectation that you should have relief at 5 mgs of morphine or 2 mgs of dilaudid is creating the dissatisfaction. You don't know if 8 mgs of morphine a day would have done the trick. When it comes to IT dilaudid, a half a mg per day can be the difference between intolerable and tolerable pain.

There are some docs out there that would never adjust a pump above 2 mgs a day. For those patients it may be a terrible waste of time and money. Just like some docs have imaginary limits on oral dosing, they have imaginary limits for IT dosing. I've met people that had to change docs 3 times to find one aggressive enough to reach 12 or 15 mgs a day to make a difference with a pump. Just like It took 8 years, 3 surgeries and 12 PM docs to find a PM doc that could even put a dent in the amount of pain I live with.

If you have a chance for relief, the pump is the most advanced and most efficient delivery method available. Whether your doc will adjust the dose to one that works before your sick of the whole thing is the real question. Not whether you cath is placed in the IT space or directly into your spinal cord. If it was intentionally placed in your spinal cord, you have a real nice law suite against your doc.
Good luck, Dave

 
Old 11-14-2006, 01:57 AM   #7
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Re: pain pump not working

Dave,
You are right, 40 mgs of Oxy BID was nothing. When I was switched to the pump, I had been thru Oxy, Fent, methadone, dilaudid, hydro and everything else you can imagine.Plus all the topamax, neurorontin,depakote and you name it. My pump was initially installed for MS. I was taking over 800 mg of morphine at the end with baclofen for spasticity. While on my honeymoon in Belize, I told my husband I would go get us some lunch and be back in 15mins. I got LOST, on a tiny island with maybe 10 blocks.We knew then it was time to try a different tactic. I went from 800+mg a day to 2.5 mg to start. My dose was upped and required adjustments, but my mind was CLEAR!!! I could drive,walk and talk again.It was like heaven.Unfortunately, if you have read any of my other posts, I got meningitis and died. Literally. I coded several times and my husband was asked to think about my removal from life support. But here I am!!!! Too many Docs move to the pump WAAAAAY too soon. I have read posts, where the pt is on 4-6 hydro a day and thinking about the pump. If there is anything I try to get across in my posts is the pump is a last resort, and it requires patience, and not an overnight cure. Your pain did not start overnight, neither will the cure. Do not take this step lightly. I realize people are frustrated by the time they get to this stage, but read, read, read, ask questions and do your homework. Ask those of us who have been there, thats why this board is priceless.

Wishes for pain free days and nights,
Ginger Snap

 
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