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Old 06-02-2006, 05:40 AM   #1
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Question New here/ Pump ???

Hi everyone! My name is Kim and I have a few questions. I have MS and was going through chemotherapy for the MS when my pain and problems started. The pain is in my hands and feet. Neuro says it's central pain. I am also spastic, so I take tons of baclofen and zanaflex. For the pain, I take lyrica and a small amount of morphine when I have too.

I was supposed to get a baclofen/morphine pump in Feb, but when they did my ekg I failed and had to undergo a quadruple bypass at the age of 47. I can honestly say my chest and legs didn't hurt at all compared to the pain I had in my hands and feet and it's got so much worse since my bypass.

Anyway, I have again been cleared for my pump trial. My pain mgt doctor says that they are just going to try to help my feet since if she trys for both hands and feet, it doesn't work so well on either. 3 day trial in a spine hospital

My questions and Thank you so much for the insight:

1. Is anyone on the pump with that extra thing that you can decide when you need more medicine? I need baclofen all the time, but morphine or something only part of the time. Can it differenate or do you have to get both.

2. Anyone with heart problems and the pump?

3. Anyone with spasticity and the pump? They think I will walk again

4. I have read where most didn't get medicine in it for 6 weeks. Why?

5. If you had a choice again, was it worth it?

6, Anyone with both hands and feet pain on the pump? Did it help both?

Any insite at all would be great. I'm scared. I have just got over bypass and I'm still concerned about another surgery.

 
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Old 06-02-2006, 03:21 PM   #2
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Re: New here/ Pump ???

welcome kim....... kelsey

 
Old 06-02-2006, 04:33 PM   #3
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Re: New here/ Pump???

Hi! So happy to find others looking into pumps. I had an intrathecal pump placed in Sept. i have mixed connective tissue disease. I have tried every drug out there and in trial and am considered a "non-responder". I looked into this for well over a year before even seriously considering it, and then spent over a year consulting with various pain specialists. It seems, in particular since my placement, the theory behind pumps is that they (the DR.s) only wish to use this in cases of spasticity or terminal cancer. Baclofen pumps according to iterature seem to be effective. Like you I have pain in my lower body as well as my upper body. My Dr was honest from the onset in telling me that he didn't think he could "cover" my upper body. Mainly because in order to do that, the catheter must be placed much higher, and therefore your brain gets bathed in the medications. One week post op, i fell, and we are pretty sure my catheter fractured at that time, but wasn't formaly diagnose for a couple of months. All I can tell you is my experience. If I can urge you to do anything it is to DO YOUR HOMEWORK. There are 2 companys that make these. Medtronix, and johnsan &Johnsan (SEE Codman). Both pumps work differently. Medtronix must be replaced every 5 years and is programmable, the Codman has a life of 99 years and is not. My feeling is that the Codman catheter is superior because it has a titanium coil making it very difficult to fracture. Medtronix, has lots of fractures. Also, very important, if for any reason you move or your Dr. does, it is almost impossible to find another Dr to take over your care. If they didn't implant it, they don't want to fill it. Thisis bigger an issue than most realize. I am in a very bad situationnow, and have found out that when the University program shut down here in towm, half of the patients ended up removing their pumps because they couldn't find care..Please consider all your options. Also, ask how your Dr performs his trials. Some are epidural x 3 days then they implant if effective. Others place catherer and send you haome for a week because they want a true test of function while performing your ADL's (activitys of daily living) I hope I didn't further confuse you, but I spent so much time investigating this and still missed some major points. Aslo due to my previous profession and my husbands, it's hard to believe what has happened to me...If it can happen to me, it can happen to a lot of people! Be Well. Good luck Keep me posted. Best wishes for future health and happiness, Amy

 
Old 06-05-2006, 11:04 PM   #4
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Re: New here/ Pump ???

Hey cactus, I can't really speak of the benefoioooooits you might get from Intrathecal baclofen other than what I have learned from my docs.

MY pump was done for chronic intractable pain, I'm not terminal and I don't have the spacticity problems that MS patients face. I have been told that oyou smly can' take enough oral baclofen to be efective in many cases partcluarly MS patients.

As far as your bascic technical stuff, no there is no way for an internal pump to deliver bolus doses of morphine as you see fit, both manufacturers use a single resevoir, they can mizx=x morphine and baclofen but if your recievng one you recieve the other. The Medronic does have a sid e port in which injections of morphine could be delivered to your IT space in thepory, but the port is really designed to inject dye to check placement of the cath and to fill the catheter if a pumpcompletely rund out. They calcualte the lcgth of tubingused and can flill it up so you don't have to wait for the slow drip to move from the pump to the insertion site If mophin is only needed ocaisionally stick with whateveer form is working for you now. You probably want to refine your search to Intrathecal baclofen for MS rather than it's genral use an an adjunct drug in IT pumps.

Just because one doc says they only do it for cancer doesn't mean that's every docs opinion, or just because your doc goes out of practice doesn't mean you won't be able to find a new doc. It just depends on the area you live in and the number of docs and PM clinics in your area, having a med school around is an obvious plus.But I know where to turn if my doc disapeared tomoroow.

I have never heard of waiting weeks for meds to be delivered unless they are infusing at such a low rate it takes weeks to travel the length of the cath. Baclofen is measured in micrograms but the lower the concentration the faster it will be delivered, they normally increase the concetration to give patient more time bewteen refills. The newer models just came out that have much larger resevoirs so it's good timing technology wise.

My pump was on and they can fill the cath at the time of implant so there really was no wait. They do usually start on the low side and it may take weeks or months to reach a theraputic dose, perhaps waiing 6 weeks to actually reach a level that worked is a more reasonabale statement, but there is no reason to implant a pump and then wait 6 weks to fill the resevoir.

I don't have radiuclopthy or arm or foot pain so the meds are used to trat spianl pain whcih is whee morphine would be most effective. Nerve pain doesn't respond as well to opiates as other types of pain like Visceral or Somatic pain even with the pump. A pump shouldn't be seen as a magic cue all. For me the best it can do is relieve 50% of the pain on a good day, but that has more to do with spinal instability than the pump. The pump doesn't stop crunching and grinding from sevral failed fusion attempts. It won't reppair the broken hardware or do anything more than mask pain that i couldn't other wise mask without being too impaired.

The bigest advantage is the ability to give more efective doses without causing the brain fog that oral meds do. Use for extremity pain is still pretty contreversial as far as opiates, if they hope to achive that with Baclofen, that's where the MS forum may be able to give you more testimonials to it's effectiveness.

The good thing is you get to do a trial, The goal of the trialis to reduce your pain or spacticity 50%, If someone expects more or the may have to pu up with some major ide efects, Although it does clear your head more than oral meds, you can certainly crank it up to deliver enough medication to become impairing

Good luck, Dave

 
Old 06-06-2006, 03:42 PM   #5
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Re: New here/ Pump ???

Hi Dave, Thanks for responding, But I think you were addressing the original poster. As a RN, wife of a physician and chronic pain patient, I can only speak to my experience with the pump. You mentioned that no pump can deliver a bolus on demand. The new Medtronix in fact can do that (within perameters set by your DR). After my catheter fracture was finally diagnosed, and soon after my Dr ended up taking a leave of absence which evolved into a suspension of his license, none of his partners would take his pumps on, and I was told by several of them that primarily (no entirely) Drs are only using pumps for spasticity and terminal cancer. When The University program here in town shut down more than half either were forced to remove their pumps because other Dr.s wouldn't take their case especially since they didn't place the pumps, or they were forced to travel 1 and 1/2 hours to the nearest city. Pumps in whatever case, should be considered life long, and the patients ability to get care long term needs to be addressed. We even contacted th insurance company regarding this...Can you imagine spending so much money on a pump only for it to end up as medical waste because Dr.s don't wish to take on a pump they didn't install. This translates as I was told by my clinic RN to " Why should somebody else get the meat, and others get just the gravy?!" Once again, it comes down to money. While pumps have restored many peoples lives to a level of function they only dreamed of, this is a life long decision, and all questions should be asked. For example, many people don't realize how high the incidence of catheter fracture actually is...Ths codman catheter, which has a titanium coil, has publically had fewer reported cases of fracture, and is compatible with the Medtronic pump. Both pumps function very differently, and have their own benefits and drawbacks.....Always be as informed a patient as possible is the bottom line, and nobody is as good an advocate for you as you...

 
Old 06-07-2006, 11:14 AM   #6
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Re: New here/ Pump ???

Hi dizzyintx I am going on my third pump ( the next to be replaced in Sept ) I just came back from pain management today from my refill. I get a refill about every five to six weeks it depends on the rate the drugs that they are using and the amounts. I am on marcane and morphine together. I do get a bump up at night along with vicodin for breakthru pain. Since they did that I only get up once at night. The new pump that I am getting put in this Sept. will have a bigger port so I will not have to have so many refill. As I understand it I will get a refill about every five of six months. That is a time saver for me. They did not have this five years ago when I had this one put in. I have the metronics and I have never had a problem since 1997 when I have the first one put in. I hope this helps and it does give me excellant pain control but I do use breakthru meds also. Take care and stay safe geifer

 
Old 06-07-2006, 01:33 PM   #7
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Re: New here/ Pump ???

Hey cactus, I'm not sure we both understood the question regarding a bolus dose the same. Yes, a patient can be given a bolus by using the access port, and I imagine the Codman has an access port to bypas the resevoir too, but a pump is nothing lke PCA where you press a button and a bolus of morphine is given.

The synchromed pumps are programable as far as delivering a higher dose at night or when you need it most if your pain has a specific pattern, but you get the same increase every night at the same time. The Codman delivers the same continous dose from one resevoir where meds are mixed. I know I'm not telling you anything you don't know, but someone that doesn't have a pump and is considering one needs to understand the difference between programing a higher dose to be delivered at a set time every day and the ability to make the pump deliver extra meds or only extra morphine at home is not possible. I was assuming the person asked if a pump can deliver a bolus on demand like they may have experienced with an external pump like they use for PCA after surgery. The patient does not have the ability to make the pump deliver more meds on demand.

If there is some way, other than using the side access port to give a bolus in an emergency, please fill me in. The person asking the question doesn't have a pump and probably doesn't understand what's involved in giving a bolus injection through the side port. It's not something done by the patient as needed at home. I thought that's what was being asked.

As far as the cath, the coil or the pump itself, there is no gaurentee with anything. I've broken more hardware and pedicle screws that the manufacturer says should last a lifetime than I can count.

Take care, Dave

 
Old 06-07-2006, 07:22 PM   #8
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Re: New here/ Pump ???

Hey Dave, You have no idea how good it is to know there are welll informed people out there, as well as a community like this where people can share info and experience. If you go to the Medtronic site, The newest pumps. My pump was placed Sept 05, but in late Nov i think it was they in fact came out with a pump that has a programmable capability to deliver boluses aside from those scheduled via the pump. These of course are set within perameters your Dr determines. These pumps are so darn smart. If only the battery life was longer...Because my course has been so difficult, I am very concerned about replacing the cathteter (as mine fractured). The piece that is within the dura cannot be removed and is causing a lot of additional pain. Either I try again with a second catheter and hope for the best or I remove the pump and live with the additional pain from the retained catheter. I know these have given back lives to so many people, but I have had my hopes dashed so many times that I am almost afraid to try again. I am really hoping now that more and more people are having pumps placed that long term studies will be done regarding fractured retained catheters and other issues that we don't know long term effects of... I hope this finds you feeling well. I so appreciate all of your info and experience...Regards, cactuslily

 
Old 06-07-2006, 07:52 PM   #9
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Re: New here/ Pump ???

Hi Dave, I just jumped to the medtronic site, and if you type in PTM (or Patient Therapy Manager) it will give you the newest info related to the addition to the Synchromed II. It is the size of a cell phone, and enables patients to bolus themselves at home, but has a time and dose lockout to prevent overdosing. I was wondering also what your thoughts are on some people who aren't on a lot of pain medication wanting pumps? I f percocet controls your pain, and you are able to work ten hours but are "too tired to do housework" after that....I don't think they are good candidates, and I would hope to G-d that no respectible PM Dr would consider them for a pump. Also, if you haven't already, I would appreciate your opinion on a post I made regarding physician abandonment and impairment. THis may help with background without my being redundant. While I recently found a Dr willing to take my case, as I said before due to my experience I am very concerned about proceeding, and yes I have contacted a lawyer who wants my case, but my husband is doc and we are worried about backlash and inability to obtain care later...Any thoughts or words of wisdom would be greatly appreciated.

 
Old 06-07-2006, 09:05 PM   #10
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Re: New here/ Pump ???

That's amazing they are givig patients that kind of control, that's one of the other trades you make when you go to a pump.Giving the control over to the doc and trusting he will work with you to reach max benfit. My doc gives me enough BT meds to manage but they are so much more impairing than the pump even when it kicks up from 7pm to 9am. I have the old synchromed 1. I have certainly thought about having home telemetry units but figured it would never happen.

I guess when my pump croaks in 2-3 years I'll have that capapability if my doc chooses to use it. I'm sure it can track how many each day, and control the level given, but that just seems so wide open.For cancer and the absolutely most screened patient, but it's mind blowing to have lived through the era of no opiates stronge than Percocet even being avalable to the way things are now, it's amazing. I've also met quite a few nurses and PA's that haven't adjusted to the new way of thinking.

My pain has a very specific pattern, as the day goes on and the longer I'm up and moving the more I hurt, It's not like I feel the increase kick in at 7pm but it does reduce my need for BT meds and gets me through the night. The higher rate doesn't drop down untill 9am so I can get up and moving with my family so programability was a big factor for me. I've had 3 back surgeries and the last was a failed attempt to revise and replace broken hardware from L1-S1.

I'm fortunate I don't have the radiculopothy but I'm numb from the hip flexor to my knees. I did somethng that lit my legs up for a couple days a couple weeks ago and it cut right through what the pump and BT meds can manage. I know I'm fortunate not to have the nerve pain any longer, that was the only benfit of surgery, but things are very unstable and more surgery would only be to prevent spondyliothesis from progressing even farther.

There is always that question of will a pump work for nerve pain, what's your experience? Do you mind telling a bit about your condition. I 'had my first surgery in 93 so I remeber the days of Percocet being all there was and PM docs that wouldn't prescribe tylenol 3 for NFM with open soars. I've Been through 4 PM clinics that were 8 hours a day 5 days a week, seen over a dozen different PM docs so pretty much had to becom self tought , It helps having a brother in the research field of medecine. There really isn't much I haven't tried for back and leg pain and done lots of research on every modality I have used and some I choose not to.

Things have really changed as far as PM and I wonder sometimes if things will take a swing back in the other direction once folks realize there is a point where opiates can only do so much. I've been disabled since the last surgery in 99 but have gone from bed ridden for a year to pretty much managing the house and taking care of my daughter. It's a big role reversal and it takes me 3 times longer to get stuff done, but if I stop moving I will loose the abilty to move.

I really think it depends on where you live as far as what happened with all those pump patients. Not state or region, just locality. A jerk is a jerk whether they have MD after their name or it's the someone you bump into at the store. If someone legitmately had a pump implanted and the doc retired, it shouldn't be a problem even travel can't solve. I already checked into it and have the list from medtronics as far as other docs.

That was a concern. My doc is around 60, I'm 40 so it's a reasonable question. There are 5 docs at the clinic I go to from multiple specialties so unless something crazy happens I don't want to have to change docs or facilities.

I came up when pumps were considered the last resort, I have read articles from well known pain experts that would rather go straight to a pump than even try oral meds. IMO I think pumps are much easier to get now but it seems folks are surprised by the hoops like psych evals,the trial process, the recemendation that medtronics makes to try a plecebo. I have read a post from someone washed out for reporting relief from saline.

Some folks simply never get the relief they want , need or expect from a pump. IMO the expectation part is the biggest factor.

It will be fun having you around. We have some good folks here and I hope you enjoy.
Take care, Dave

 
Old 06-08-2006, 01:14 AM   #11
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Re: New here/ Pump ???

Hi Dave, Great to see your response. I think what worries me most, in particular in the field of PM, is exactly what you said, and maybe for a good reason, however as I said before, there simply isn't quite yet enough research (as your brother can attest to), out there to know who and what the pumps work best for and with what medicine. Some current literature suggests that the use of narcotics long term can actually cause a hypersensitivity to pain. The question you posed actually pertains to me as well, in terms of nerve pain. My underlying pathology is not from failed back surgery or any injury to my spine. I have never had any nerve pain until now...That, is thanks to my catheter fracture. If I remove my pump now, then I'm in worse shape and pain than before I had it placed. If I place another catheter, in theory, I was told that it should take care of that nerve pain. A lot of people have had great success combining bupivicaine to morphine or whatever narcotic as its base. I, for whatever reason had such profound anesthesia with bupivicaine that I lost all sensation from my chest down until they stopped the pump, removed all drug from resevoir and catheter....THat was really scary. You don't realize how much at the mercy you are to someone with the proper software....For that reason alone, I think everyone with a pump should have narcan nearby. Have you ever taken neurontin for nerve pain? I just hope you continue to have good success with your pump. Take care, cactuslily

 
Old 06-08-2006, 07:27 AM   #12
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Re: New here/ Pump ???

Hey Lilly, I do hope the new cath helps manage the nerve pain, I was just amazed at how ineffective opiates were when my legs lit up again. I have tried neurontin which I nicknamed Morontin, I also tried Topamax /Dopamax with little results. This was when I was with a doc that would through the kitchen sink or a cornucopia of any drugs aside from opiates at you with the logic that those drugs won't be as impairing as opiates, wrong. I would forget where I was going before I got out of my neighborhood when using anti seizure meds.

I had an insurance change and had to change docs and the first thing he did was increase the opiate 50% and then I discontinued Neruontin, Zanaflex, ambien, Xanax, Celebrex and the OTC meds I was taking in adition like apap and an occasional IBU. Somehow in that docs mind it was better to be drooling from the combination of non-opiate drugs than it was to be functional on opiates.

I didnít have prescription insurance for the 2 &1/2 years prior to having the pump implanted. 3 months before the implant, the screws in my sacrum backed out but I couldn't tolerate the increase in meth which was the only LA med I could possibly afford to reach an effective dose. So that was pretty much the final straw in the decision making process.

I did try adding bupivicaine "marcaine" to the mix but it caused such severe UA retention I just couldn't tolerate it. I've tried Baclofen in the mix and had side effects I couldn' tolerate either. Now I just have Dilaudid in the pump. I was doing fine with morphine in the pump but reached a point where they were concerned about developing a granuloma at the tip of the cath so they switched me to the more soluble dilaudid.

From what I have read, Fentanyl is the drug thatís causing the most concerned about causing hyperalgesia or hypersensitivity to pain. My docs explained this by going back to NMDA receptor blocking or binding activity. Where meth has NMDA receptor blocking abilities and other meds like Nemanda and DXM are even more potent NMDA blocking agents used to prevent hyperalgesia. Fentanyl actually binds to the NMDA receptor and can cause hyperalgesia, theshold and sensativity problems. You are right, pumps were intended to deliver opiates for a limited amount of time in terminal patients or to delver Baclodfen in MS patients. Thereis limited info on contnued use but they don't have any long term studies on any of the new LA oral meds that were not available prior to 96.

Obviously there is still a lot they don't know with only a decade of data to draw from. I have been fortunate that once I found a dose of meth that was effective, I was able to go without an increase for over 2 years. Once they found the dose of IT morphine that worked I remained stable until they changed it due to potential granulomas and now I've been on the same dose of dilauadid for a year and havenít even considered an increase. I guess the next thing to try is adding clonodine should I not want to increase the hydromorph but try to obtain greater relief.

I think pumps are kind of perceived as the pinnacle of PM, but it's truly just another tool with a better delivery system. I can't say I'm getting substantially better relief with the pump but my head sure is clear although not reflected in my typing skills.LOL

50% relief is still the goal my docs shoot for and the best I have been able to obtain and not be zonked which isn't an acceptable side effect for me. Even though 50% relief seems to be the best they can obtain it still leaves me disabled but I am happy with the choice I made. Going from meth to the pump was like going from a very gray and solemn life back to full Technicolor and really feeling the difference in how orals effect you Vs IT meds.

Long term, I guess we wait for more data to see just what happens from prolonged use. Since my sci fi thougts of home telemetry units have come to life, perhaps my next idea to create a pump with more than one cath to provide better coverage for patients with both cervical and lumbar problems may come to be a reality some day.

I'm still shocked by home telemetry and have a feeling it won't be something every patient will have access too. My groups of docs have been using the Synchromed 11 since the fall of 2004 and I haven't heard a word about any patient having access to home telemetry.

My group of docs haven't tried Prialt in any patient yet do to its potential psych problems. I do wonder if they can mix a small amount of Prialt with opiates and avoid the risk of psychotic breaks and hallucinations by limiting the amount to where it's used as an adjunct med rather than the main drug used in pumps for pain relief.

Is your surgery scheduled and what are the doing in the meantime while you wait? I do hope the new cath is successful and gets you back to where you were.
Take care, Dave

 
Old 06-08-2006, 10:44 AM   #13
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Re: New here/ Pump ???

Hi Dave....50% improvement of pain seems to be the gold standard in terms of pain relief. For those of us in constant intractable pain 50% is huge and could mean the differance between being bed-ridden to actually geting up and around and back to some semblense of normality. So many people, professionals included have truly no idea what constant pain does to someone andn their family and life as a whole. Suck it up, or get past it seems to be the majority concensus. Short term pain they understand, but the psychosocial, economic and psychic issues are not well understood. I know Dr's worry about creating adiicts and losing their license, but undertreating pain is just as ethically liable. Malpractice issues are always everpresent, and in todays era of managed care, many Dr.s are frustrated with the limitations that are placed on them due to the almighty dollar. When we discussed placement of the catheter with our then PM Dr, he was pretty honest in regard to his inability to "cover" my upper body pain. While he could place the catheter tip much higher, we opted to compromise because obviously the higher up you go, the more your brain gets "bathed" in narcotic. My pain is in my upper and lower body. While walking is important, I was a classical pianist, gourmet chef and artist, all of which required the use of my hands. I would almost rather be able to use my hands than my legs...what a choice huh?! BTw, my understanding was that high conc. of morphine was associated with ITdelivery,but few drugs are actually FDA approved for use within the device. I had dilaudid...now saline. I wish my answer to remove or replace my pump was easy. Have I been Really unlucky, or is someone upstairs trying to tell me that this isn't for me and I shouldn't push the envelope so to speak. I have to decide soon, and am hoping I will just come to the decision and be at peace about it.

 
Old 06-08-2006, 12:35 PM   #14
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Re: New here/ Pump ???

Hi Lilly, I was probably one of the last to get medtronics synchromed before the synchromed 11 came out 3 months later. Because the pump I have only has an 18ml resevoir, I required a high concentration to be able to go a month between refills. The newer pumps have up to a 40 ml resevoir so I higher dose patients could get by longer on a lower concentration solution. 30mg per ml is where my doc starts to worry with morphine. at 12.8mgs a day, 18 ml just doesn't go far with morphine. It's actually been nice being able to go 80 days instead of 30.

YUp, that 50% thing is tough to live with and means different things to different people. like you said, 50% may mean the difference between bed wridden and functional round the house or it may mean going from miserable to being able to work again. I kind of look at pain as a bell curve, everyone falls along that curve somewhere.Function is probably a better indicator than level of reported pain because pain is subjective and rating it is based on prior experince if you use 10 as unimaginable pain. I know the pain someone expeinces on one side of the hump is reported just as high as those with truly intractable pain on the other side of the curve that will never get better than 50% relief. You can only rate pain on what you have experienced. from mildly innconveinat and anoying too complete disability and truly Intractable on the far right. Because pain is subjective, folks on the far left may rate their pain the same as folks on the far right, but the level of disability and loss varries so greatly from one side to he other they need to incorporate a functional factor to the pain rating system.

I didn't want to go off on my theories of when pain requires treatment and some pet peeves like people beliving maintaining their golf handicap is a quality of life issue. Unfortunately quality of life has become a catch phrase that's a little over used and not understood by those using. Kinda like rating pain a 10 all the time. To me t mplies it's the worst pain someone has ever experienced, and I don't understand how someone can sit and type about it while their pain is a 10. But that's just on my scale. I was young and inexperinced at one time too.

With failure after failure and loss after loss I often think I have that clowd hanging over me at times. I'm assuming you know who Shleprock from the Flintstones was. LOL

I did read something that made me feel good and remebered it.
"Dissabilities are given to extraordinary people to level the playing field."

It's a better way to look at things than feeling like Shleprock.

Are they managng your pain with oral med or patch? I was just curious what going from pump back to orals was like conversion wise. I guess the hard part is getting the same relief without the head fog and remaining functional.

I've enjoyed talking with you, I feel I can relate a little better to folks that fall a little closer to where I do on that bell curve.

Anyway, It's been fun and I hope we can talk more.
Take care, Dave

 
Old 06-08-2006, 04:00 PM   #15
Junior Member
(female)
 
Join Date: Jun 2006
Location: Tucson az
Posts: 33
cactuslily HB User
Re: New here/ Pump ???

Hi Dave, For me, since I never had pain relief from the pump, I unfortunately was never able to wean off any meds. Now, I am actually on more than I ever was before. MS Contin 120 T.i.d. and dilaudid 4-8 mg q 4-6hours. The fentanyl patches A) wouldn't stay on, B) I am allergic to the adhesive so I was covered in a bad rash around the patch site, and C0 was inconsistent in terms of delivery as it is dependant upon many variables i.e. body temp etc... I tried Actiq, 800mcg, however, my insurance wouldn't cover them and one month supply was 3000$. Same drug, different delivery, but insurance wouldn't cover ACtiq, which is immediate release fentanyl. My disease, since my pump placement, has progressed, and the newest drugs that they want to use are too immunosuppresant, and they are fearful of infection. Basically, everything is on hold until I difinitively take action. If I had had a trial or even a period of time post implant that I had relief, I definately would replace the catheter, but I was profoundly numb during the trial, and my catheter probably broke 1 week post op when I fell, although we have no way of proving that since they didn't do a catheter study in the hospital. At any rate, I had it placed Sept 05, and they diagnosed the fracture early Dec 05. So....I have no actual positive experience with the pump. It is almost scary to even hope that it could change my lifebecause I have been so dissappointed thus far.Sometimes, I do believe "ignorance is bliss" Knowing too much, often just increases fear and paranoia. THanks for all of you info and support, I truly appreciate an objective ear.

 
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