Hi! I'm interested in anybody who has a pump for low back pain and whether you've been helped or not, can you live a "normal" life, etc. I'm allergic to MS so I know that will not be a drug used-anybody on anything else? I've got an appt with a Doc soon about using one and I'm trying to gather as much info from people who have one. Since I've started my road down chronic pain 15 yrs ago, I've always tried to live as active a life as I could. I'm not the type to sit in recliner day after day. A pump has always been a last resort for me-kind of like the end of the road thing. Now that I've reached that point,I'm pretty angry and depressed about it. Anyone out there that can help?
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Hey Pat, the first step is to do a trial in which they shoot for a 50% reduction in pain. By no means is the pump a cure all for all pain. I presently have morphine in my pump and the old sychromed 1 system only has an 18ml resevoir, so at a moderate dose of morphine I'm only lasting 33 days at tops before each refill, you also have adjustments to make with any med they choose. I'm on adjustment 13 or 14 , can't remeber now how many times they have inched the flow rate up since June 3.
At the time I investigated what was new and coming out and found out about the sucnhromed 2. The newest version of the programmable battary operated pump. The advatage of the Synhromed pumps are that they are programabale and can deliver a higher flow rate in the am or pm , whenever your pain is at it's worst and when you would normally need BT meds. The new pump the S11 is what's beng implanted now and instead of a 18ml resevoir that I have the new one hads a 40 ml resevoir which can mean months between refills. Another thing that determines how often you need refills is the flow rate and strength of med. Morphine is the wekest opiate mg :mg they can use so simply by addswitiching to something like Dilaudid or one of the fentanyls this could doyublt the time between refills or even extend it longer. The disadvantage of the programabale battary operated pump is the battary dies and the entire pump unit needs tobe replaced when this happens , somewhere btween 3-6 years, again depending on the flow rate.
Medtroncs came oput with a versoion of the Arrow pump called the Isomed, It works off of a vacum principle and doesn't use bateries. The amount and delivered is based solely on the cmcentration of the meds placed in them. Which basically means insteasd of a click of a botton to increase th flow rate they have to increase the concentration of the meds because the Isomed and Arrow pump only deliver at one steady constant rate. So the only way to adjust the flow rate is with a stronger concentration of opiates. Refills are more expecnsive than simple telemetry adjustments and it takes time to find the right dose of IT meds and extremely important not to set your hopes so high, thinking it will relieve all your pain and promise a return to normallcy. That wopuldbe ideal but depending on your problem may not be possible even with the strongest meds at the highest rate.
I had the pump implanted because ZI reached igh doses of oral meds and ran into aa side effect wall that was just intolerable. My optons were limted without insurance to only methadone and the cheapest BT med I could find which is either MSIR or Dilauaid.
Althugh the pump has decreased my level of fdaily pain, I haven't got the increased function without addtional pain I was hoping for. But that'sdue to spine emchanics. I have failed fusions from L1-S1 with broken and toggliing hardware, no fusion at L5-S1 at all and some gaps all along the fusion. Even at night when the pump is delivering additional meds, the highest rate it';s presently set on. When I walk, the screws in my sacrum toggle, and slip in and out of the wholes that have deterioarted around the screws. S when a screw slips and crunches, which happens with almost every step I take, It's still hurts like helll.
So I bascally traded a better delivery suystem, no expensive LA meds for better pai relef as long as I remian sedentary. Once i start walking the grinding and crunching resumes and no amount of med is going to fix it. The last surgery was my 3rd failed surgery., and getting back on the surgical table to roll the dice and hope another attempt at fuusing is much more cmplicated than a virgin back that needs it's first surgery. For whatever reason I just don't fuse well. It may have been the way they tried to fuse me or it may simply be my physiology that has prevented fusions and proper union of bone which would have prebvented snapping 2 sets of hardware. The hardware n my now is failed and there just isn't anything around at the moment I can do to try to fix it.
My head is much clearer, I don't nod out from meds, I have less side effects, But i can't ay it's changed my life in the sense I can fnally return to work. I still have the same limitations but have better pan control. I tend to do more because I feel better in the day but pay dearly at nght for what I've done in the day.
I'm just one case. I know folks that have had great functinal improvement from the pump. It just depends on the stability of your problem, Is it going to continue to rogress and worsen or is your spine stable and your simply left with pain management as your only alternatve to have some quality of life.
Nornmally docs willmax you out on oral meds before goning to a pump. when you can't tolerate the side effects or can't get relef from orals, There are several ther opioids they can use in the pump. Aside from dilaudid, =you have the fentanyl family, Carfenbtanyl, Suffentanyl, Affentanyl and then adjusnt meds they canadd like bupivicicaine for numbing, baclofin for spasticity and clonidine to control the release of the calcim chamell blocker NK-1 which carries substance P which is a potent neuro inflamatory aget that you only see in chronnic pain patients. Cp is very differently chemically and physiologicaly than acute pain, a different part of you brain recieves acurte pain mesages than does chronic pain essages. Different neurtransmitters and the directions they flow are different with CP than acute pain.
There are several way to to the trial of the pump, One is in patient, they implant a temp cath into the intrathecal space and use a PCA machine to deliver meds, this can be adjusted a couple tmes a day and the stay is usually 3 days to adjust the meds and decreasse the oral meds. The second is outpatient with a portable pump, where you check into your clinic or docs office for adjustments and reports and the thirds is a single bolus injection into the Intrathecal space. They can do more than one trial or make adjustement to the Bolus injections if you don't hi the 50% mark.
Whhatever method of trial you use, if you decide to go through with it, the implant isn't a terrible op, nothng like back surgery, just some incision surgery and if you don't get an abdominal binder to hold it in place the first few months so it doesn't cause pain when it bounces around when you walk or dirve before it's comletely set in the pocket on it's own.
The level of relief everyone gets is going to be different, but anything better or ncluding a 50% reduction is considered a success. There is no magic conversion that gaurentees relief and adjustments are a part of the process and more expensive time of the implant procedure. Once you reach a level of relief tha's exceptable, with the newer pumpswith larger resevoirs you can extend refills out to as far as 6 months apart.
I hate to say I'm disappointed with the pump, But I understand it's not going to numb my spine when somthing shifts. Instability is a problem the pump can't manage and when my spine shifts it's like having no meds at all. It just a matter of laying down, getting things back in place and pressing on.
I resently had BUpivicaine removed from the pump due to urinary retention, It was replaced with Baclofin and it's taken about 3 weeks for al the bup to disperse and now I'm realizing how much the nimbing agent helped. Swithcing meds to a more potent med that would take less MGs per day would extend my refill dates but it's almost like starting over with the titration process. I would hate to need 14 adjustment to get the dilaudid dose right.
We have some other pumpsters, that have been able to return to hobbies like garedening and a more active lifestyle, and I am more active, I just pay for it more at night. I've been disabled since 99 and the LA meds and now the pump has been a god send, otherwise i would still be bed ridden.
If you have questions, I can try to answer, but I'm sure some other folks with pumps will be along. Noboday can really say Fentanyl will work better than dilaudid or Carfentanyl with work better than Suffentanyl. They can use any preservatve free med in the pump and use several adjunct meds like clonodine, Bupivicaine, or baclofin to potentiate the opiates. There are also oral meds that can potentiate the pump meds like Nemanda or anti cunvulsives if you have nerve pain along with the back pain. If your only complaint is nerve apain, the pump isn't quite as effective on neuropathic pain as it is on back pain without a neuro component like radiculopothy down your leg.
Have you done the trial yet ? The main thing to remeber is that the pump is jsust another tool, it's not the end all cure all of chronic pain, and if it's being presented that way it wuld concern me that nce the pump isin, will your doc continue to work with you as far as adjusting the dose and rotating meds or smimply say your getting the strongest med in the most efficient deliver method so deal with what the pump doesn't manage. We all have some amount ofpain to deal with and with a 50% reduction considered a success, it still leaves quite a bit to manage and live with, everything has it's limtations.
Hav yu investigated the pumps, gone to the medtronics site, seen the videa, seen the pumps? The pump I have is a bt larger than a tuna can and become fairly promenent as I loose weight. The newer models are little more streamline but it's still a foreign peice of equipement implanted in your body. But your right on tme for the latest changes and inovations with the new pumps and Had i knwn it would have benavailable so soon I would have held off for the Syncromed 11, but at the time I was told it would take months to test market and get final FDA aporval. That happened much faster tha originaly projected, so wyou would be getting the state ofgf the art pump, with te largest avaiable resevoir and yu have a choice of programmable synchromed pumps or vacum continous flow pumps like the Isomed or Arrow pump.
Medtronics has a great site and easy to find [url]www.medtronics[/url] and you can investgate the pros and cons of both pumps. Check your insurance coverage. I have medicare and the meds and refill cost me about 50 bucks where a simple eval and telemetry increase cost me abot 35 bucks each time. Some folks find the right dose faster than others and some are still tryng to tweak the dose and adjunct meds and rotate opiates 18 months post implant. There just isn't a gaureneed dose a doc can set it on that will provide relief.So it's more trial and error just lke with oral meds and not a toll used to reduce 100% of anyone's pain. The best thing I can say is Ihadn't slept through the night or morethan 4 hours straight in over 4 years untill I had the pump and had it adjusted and delivering a nightime bolus dose or "'increase"
Dave has done his usual great job of giving you the information you need. I just want to tell you that I got my pump l7 months ago and it has made a huge difference for me. I was ready to commit suicide....nothing was touching the pain I had. One night I took 60mg of oxycontin and 5 lorcet l0mg....just to try for relief...didn't get any. So literally, the pump saved my life.
I started on morphine but was switched to dilauded last month and it is working even better than the morphine did.
Good luck with the trial. I think you will be glad you gave it a try, and if you are like me, you will be counting the minutes until you can have the actual implant done!
Dear Dave and Carol,Sorry for the delay getting back-yesterday just wasn't a good day. I really appreciate all the info! The only person that I know that has a pump is terminal, but even before that diagnosis, she was perfectly happy with taking her meds and being a couch slug. I just keep going and going even if my pain is terrible. I figure as long as I'm not screaming I have to keep moving. Doesn't do much to control my pain,but I'm afraid if I stop that I may never move again. My docs are used to this. If I even got 25% relief from a pump I would be thrilled. I've had CP for 15 yrs, cervical fusion C6 C7, 1st rib resection for bilateral TOS, 4 low back OR's w/L4 L5 fusion, decompression L3 to S1, and due to incontinence bladder OR so I have to cath all the time to urinate, too many ESI to count, fibro, RSD and for the cherry on the top a major depression (go figure!). Unlike you Dave, my hardware is stable but in the past year I've developed 3 more bulging discs, increased stenosis and my spine has shifted forward around L2 almost 3/4". I was pretty well maintained on Methadone 40mg X3 with VicodinES and Dil for BT until about 4 months ago when I just couldn't stand it anymore. I had reached the screaming part I mentioned earlier. My Docs switched me to
Oyc 80mg X3, more injections and it's not working. I've just about topped out on narcs. With what I take, I shouldn't be walking, but I still keep going. If I just sit all day, I don't have to take BT meds, but the pain is not under control at all. If I could get some relief with a pump and decrease my narcs I would be thrilled. The med level I'm at now was always something I didn't want to be on. That was the dose I figured I could keep in reserve if I needed it. Right now, there's no where else to go med wise. I get maybe 2-3 hrs of sleep at night because of the pain and leg spasms. I know a lot of people will say just stop doing so much, but there is no one to help. My family just doesn't get it and forgets what's going on even though I keep telling them. My husband gets freaked out with my depression and thinks that I'll have to go to the hospital ( did that about 7 yrs ago for a week). I'm sorry for bending your ears. I could go on with more but I won't. It's just been so long since I've had any where to go to talk about all this. I hate when I whine!!!!! Anyway, thanks again for the comments. I hope I hear from a few more pumpers! Thanks Pat33
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Hey Pat, We are not alowed to post limks to other frorums but if you do a search for Pummpsters, you will likely find the forum composed of nothing but pumpsters at Yah..
It's membership is nothing but pumpsters and people looking for pump information.
The couch potoatoe thing tinks and when the meds start hindering you more than they help you , I think you have reached a point where you need to consider something more invasive. There are plenty of folks that take 5X the amount of opiate mds you atke, Oxy doses in the 800mgs a day range, I';ve met folks taking 160mgs of meth 4 times a day, But it comes down to benefit VS the negative aspects of meds. The goal isn't to make you a tater, THe goal is to keep you moving. I defnitely move more and have had to do more because of an inury and DX my wife recently found. I've been able to keep up so my activity level s much higher with the pump, I just pay for t it a little more at night, but thank god for bolus doses with the SYnchromed pump. From &pm to 1am my pump rate increase from .350 an hour to .400 an hour. Since removing the bupiviacaine I also lost some ground but I wasn't ready to do the self cath thing and that was the main reson for removing the bupivicaine. The other meds I mentioned can also be used and here are 2 articles that exlain CP and the meds used, how they work and why.
Dr Danial brookoff, University of Tenn at memphis....
I understand about not wanting to stop or you may not be able to restart. i face thesame decision with a wheel chair. I could certainly be moremobile, travel and take my daughter to any number of local theme parks like Busch gardens and kings dominion, But I know once I give in and and go the wheel chair route, I'm afariad I'll loose the strength I have and the muscles will atrophy and eventually the chair won't be a choice. There are meds that can be addedorally that don't have the cognative impairment like Nemanda, a potent NMDA receptor blocker which you will reas about in article one.
I also think your conversion from meth to oxy is on the low side and there are certainly stronger BT meds that don't conatin tylenol. Roxicodone or generic roxi is available in 5mg, 15mg and 30 mg strenghts without the tylenol, However I do believe there is a benefit to using a different BT med than your base med due to different opiate receptor activation. Different opiates bind to different receptors. There is room to make adjustement orally but if you have reached the side effect threshold the pump may be the way to go.
It is a process of titration all over again, nobody gets the dose right the first go round, but if you look ahead and keep your eye on the light at the end of the tunnel, the pump can do things without all the cognative impairment that orals cause because IT meds don't run through yur body systemically and the amount used is minuscule compared to oral opiates. My present daily pump rate is only 8.6 mgs of morphine a day. Qiuite a strep down from 600mgs of Kadian or MSContin a day or 150 mgs of meth a day.My heads clearer, constipation isn't as bad, urinary retention isn't as bad and I can sleep so much better , 5 years of never sleeping more than 3 hours defnitely takes it toll.
Good luck with your trial, but they are going to shoot for 50% reduction in order to justify such an invasive procedure, It may take several trials with adjustments or several different trials or versions of trials with different meds. As long as your doc is commmited to helping you and you know up front what to expect as far as how long you have to wait between increases it goes much smoother. It would be 14 months down the road if they only allowed a monthly increase. The first few months I went in every 10-14 days as needed for increases.
Your starting dose is just a ballpark guess, It has to be safe enough not to harm and strong enoug not to send you into withdrawal. But even at the starting dose, switching from a high dose of oral meds to what seemed to be a low dose of IT meds, withdrawal was never a real issue, just increased pain whch can be managed in the interim with additonal BT meds strong enough to be effctive untill you get your pump set to a comfy position.
I've gotten dicouraged at times but over all, I am happy with my decision. I'm realistic and know nothig is going to relieve all my pain and I would still be happy to reach that 50% mark. When I dd my trails I was on meth, although I discontinued meth for the trial you still have quite a bit in your system for days later. I did a 3 day in patient trial and later the single bolus injection trial. The inpatient caused a spnal fluid leak which skewed any positive benefit from the pump. It tok me several months to akllow another needle into my spine again but wewas worth it in the long run.
So even with a 50% reduction on a trial, it doesn't give you the perfect starting dose because of meds already in your system. OxyC wears off rather fast so your trial may be abit truer if they DC the oxy and strictly use the IT pump. They do also use oral or IM meds for when the pump isn't cutting it betwen adjustments while inpatient . Just things to be aware of.
Good luck and let us know how the trial goes, Dave
Young, Seeking Advice on Pain Pump for low Back Pain!
HELLO OUT THERE,
MY NAME IS KATRINA AND I HAVE JUST STARTED MY JOURNEY ON RESEARCH FOR INTRATHECAL DRUG THERAPY. ALMOST THREE YEARS AGO, I WAS INVOLVED IN A CAR ACCIDENT. FROM THAT I WAS LEFT WITH CONSTANT, CHRONIC LOW BACK PAIN. I HAVE NOW BEEN THRU ALL CONVENTIONAL TREATMENTS AND MY PAIN DOCTOR HAS ADVISED ME THAT A PAIN PUMP WOULD BE GOOD FOR ME. I HAVE BEEN THRU EPIDERAL & CAUDAL NERVE BLOCKS, A DISCOGRAPHY THAT SHOWED A TORN-LEAKING DISC AT L5-S1, IDET, AN ANTERIOR INTERBODY LUMBAR FUSION AT L5-S1, PHYSICAL THERAPY & AQUATIC THERAPY, RADIO FREQUENCY LESIONING, FACET BLOCKS AND EVEN TRIGGER INJECTIONS. I AM NOW BEING TREATED WITH NARCOTICS, OXYCONTIN TO BE EXACT. MY LAST VISIT WITH MY DOCTOR LEFT ME WITH A VIDEO & INFORMATION PACKET ON INTRATHECAL DRUG THERAPY. I AM ONLY 26 YRS OLD, SOON TO BE 27, MARRIED FOR FOUR YEARS AND NO CHILDREN YET! THREE YEARS OUT AND LEFT WITH ORAL NARCOTIC MEDICATIONS OR THE OPPORTUNITY OF A PAIN PUMP? I AM TRYING TO GET AS MUCH INFORMATION AS I CAN. ANYONE WITH ANY ADVISE, I WOULD GREATLY APPRECIATE. I HAVE READ THE MESSAGE BOARDS AND THEY HAVE BEEN VERY HELPFUL, I'M LOOKING FOR MORE. IT'S NOT THE FACT OF ANOTHER SURGERY, ITS MY AGE AND I WANT TO HAVE CHILDREN. I HAVE STARTED LOOKING ON THE INTERNET FOR ANY INFORMATION THAT I CAN GET, BUT THERE DOESN'T SEEM TO BE MUCH ON WOMEN WITH A PAIN PUMP GIVING BIRTH. AND BECAUSE OF MY AGE, I DON'T KNOW IF I SHOULD WAIT AND GIVE MYSELF MORE TIME OR WHAT? I HAVE BEEN TOLD THE PAIN COULD POSSIBLY GO AWAY OR IT COULD LAST A LIFETIME. I ALWAYS SAID TO MYSELF THAT I WOULD DO WHATEVER IT TOOK TO RELIEVE A FRACTION OF THE PAIN... AND WITH THE FUSION IT WAS NEVER A QUESTION, I DON'T KNOW WHY I'M SO UNSURE OF THIS??? IF ANYONE OUT THERE HAS ANSWERS, I'M DESPERATELY SEEKING ADVICE!!! LIKE ANYONE WITH CHRONIC PAIN, ALL I WANT TO DO IS RETURN TO A SOMEWHAT IMPROVED LIFE, CLOSER TO WHAT I HAD BEFORE. I WANT TO BE ABLE TO HOLD MY BABY IN MY ARMS AND BE ABLE TO PICK THEM UP WHEN THEY NEED ME, WITHOUT HAVING TO WORRY THAT I CAN'T! THANKS FOR TAKING THE TIME. GREATLY APPRECIATED, KATRINA
Last edited by KAT913; 07-07-2005 at 12:22 PM.
Reason: New Thread
I am on my second pump the first one was installed in 1997 and I had the second one in 2001 so I will have a third one in about one year. Pain management don't like them in more that 5 years. I do get some pain relief but I still take bt meds mostly at night. I have developed some new things like numbness in my right foot so I have to talk to my pc and get a cat scan to see what is going on. You can have mri's but I have medal in from ostomy surgery so I have to settle for cat scan. Shoreline do you know about a test called a mylogram? I'm not sure on the spelling but I want to know if this test is better than a cat scan or does it also require magnets? Thanks My pump does help with the pain but it dosen't take it all away. I don't work outside the home but I do some flower gardening and all my house work so the pump does not interfer with any of the normal things. My pump bulges soem from my clothes but it doesn't bother me. If you have other questions just lets us know. Medtronics gives you a card so you can travel I always opt to get hand searched ath the airports because I know I am going to set off the alarms. They are really nice about it also. Take care geifer prayers go out to the people of London
Hi Geifer, A meylogram is when they inject dye into the epidural area and view it under flouroscopy on a table that moves. The table will tilt side to side, put ya nose down and toes up and in the standing position, It's a good test because it shows weight bearing and obstruction of the flow of dye when weight bearing, and no other test does. It's usually followed by CT because they have the dye in ya. No magnets in a meylo and best I recall they aren't used in CT imaging. So it shouldn't shut your pump off like an MRI.
Knowing someone terminal with a pump is very different than CP, When your terminal, it should be totally up to you how much sedation you can handle. It does clear your head if your goals are reasonable and you want to be more functional. Most dying folks will deal with high dose sedation rather than the agony of death, and families don't want to see that kind of agony.
Pain free or sedated isn't something they shoot for in non terminal patients though.. If they cranked my dose up it would knock me out and leave me nodding off in mid sentance.
As is, I hover around 50% pain relief. It's tough to live with, I'll never be my old self. I'm disabled by pain and mechanical disfunction. Spinal instabilty isn't cured by a pump or surgery or hardware in my case. I can function at a higher level but I pay for it dearly the next day and use BT meds. Personally I won't increase the pump to where I can't stay awake in the day time even though I haven't slept more than 3 hours straight in 5 years. My doc wouldn't do it either. I have a wife and daughter and they don't need and I don't want to be a nodding off cripple that participates in bear minimum and contributes even less at the age of 39.
If your still able to work and function with orals, then a pump will likely enhance the pain relief and clear your head but I wouldn't expect a pump to mask everything particluarly if your condition is unstable or deteriorating. IF your working and the side effects of orals are becoming too bothersome to continue, a pump can likely keep you working by providing equal or better relief with a clear head. A pump can also impair you if you shoot for too much pain relief.
IF the side effects from orals are keeping you from working then the pump may be the right choice too. IF your working and handling the side effects, I would probably wait untill you could no longer work with that level of pain or the side effects were overwhelming.
Everyones situation is different and their level of impairment from pain, condition and level of impairment from meds is different. I was hoping the relief would be profound and I would be able to function better than I am, but I'ts better than orals, better than bed wriden, less side effects, and the brain and personality fog we get so used to, we feel normal living in a gray world. CP and opiates pretty much took the color out of life. The pump brought back the technicolor world, has quadroupled my standing and siting ability without having to lay down, doubled my walking and I was able to stay at every softball game and practice my daughter had.
Things I never could have do on oral meds. I also cook, clean, shop, and play catch with my daughter, but I pay for it and have to deal with it. I crunch and squeek with every step and the pump doesn't mask it, just makes it tolerable.
As far as being preggers with a pump, it would think it would pull the cath out of your spine as your belly grew but talk to your doc. Maybe there is a way to go over the shoulder, place it higher and bring the cath aronf the upper thoracic area but I haven't met anyone or even heard of it before. The pump becomes fixed in place by scar tissue, the cath does too and has an anchor on a vertabrea. Something would have to pull as you grew and that would be the cath, either out of the pump or out of your spine.
Good luck, Dave
I would do the meylo to get some action footage, and I would do the pump again if this one failed tonight. The only problem I see with the trial is they aren't long enough or med free to really see how much your head clears and expectations are naturally high when it's your last hope.
Shoreline, Thanks for the update on the test I go to my PC on Monday and I will ask him about it and see if it the way to go for me. With the new things that are happenign the numbness in the foot and others I think it is a good idea to check further into what is going on. I didn't have the numbness before so something more is going on. Thank you again and have a good weekend.Take care and stay safe geifer