Hi,
I have long term back pain. 20 years. It is getting worse, so the PM&R dr.
says it is time to meet with the surgeon. What type of pain relief?
I am told the Electronic pain relief gives you approx. 50% relief the first year and down to 10% after 5 or 6 years. The Medtronics unit we were shown has a battery with a 9 year life. Does anyone have this model and if so, how do you like it? Does ANYONE have the pain relief from electrical ...uh...lines? Sorry, I don't know the technical terms. IF you have one of these units, would you use it again or get a morphine pump?
Morphine pumps: We are being offered one that has a battery operated pump. Are they any good? That is, do they seem to deliver sufficient morphine to stop the pain?
The other type of pump is hydraulic I think. Does it last longer than the electric ones? I mean, the electric version has batteries for power - - what powers the hydraulic version?
If I understand it, you cannot get an MRI or a pace maker with it in place.
How about airport security?
My PM&R doctor also said ...at my pain level...I would have to take meds orally. WHY? Why not increase the morphine dosage if you are still in pain?
AND I was told I could only get a 30 day supply of morphine, but I have read of people with a 60 day supply. The only reason I can see for me getting a 30 day is because I will use a higher dosage daily. But why can't we get a larger container?
AND....AND the final question (I hate needles) HOW do they get the morphine in to the container? I have visions of a velcro flap or a zipper. I don't see how any container could "reseal" itself every time a hole is poked in it. After a year, that container (rubber?) would have at least 12 holes in it. Doesn't it leak?
Thank you so much for your patience, since I will be asked to pick one in 2 weeks, I am trying to learn all I can.
Hey DLFO, It realy doesn't sound like your doc knows what' he's talking about when it comes to pumps. You may still need oral meds for BT pain or incidental pain, but any more than that can be managed by the pump.
What are you presently taking and I can give you an idea of where you would be with a pump.
He's describing the old synchromed pump with an 18 ml resevoir. It's a closed sealeled conatiner so there is no way to just put more in it. The synchromed 1 was the original battery operated programabale pump. Mine delivers a higher dose from 7pm untill 9am so the night pain is managed and I can get and moving when my daughter does for school, I use Roxicodone for BT but no LA meds, it would be redundent. The pump out now is the synchromed 2, It comes in a thinner version with a 20ml resevoir up to about the same size of the old but it has a 40 ml resevoir. The concentration of the solution is were the strength of the med is determioned and the rate of delivery. If your a high dose patient they would use a 25 -30mg per ml concentration. and run your pump in the 15-20 mgs a day range, that's if you were taking 600 -800 mgs of morphine per day and getting relief. In the old pumps with the 18 ml resevoir, I could have agone a few days longer but you want to refill before the alarm goes off when it reaches 2ml left in the resevoir. At that point the pump begins to slow to prevent it from running dry and it slows down enough to cause the most severe withdrawal you can imagine.
I learned early and scheduled a refill on the alarm date. There was still 1.8ml in the pump but I had been puking for the previious 16 hours and was a mess.
Now with pumps that have 40 ml resevoir using concentration of morphine or dilauid at 25-30 mgs per ml, you at least double the duration with morphine and if that's not log enough they switch to dilaudid or one of the fentanyls which last even longer. Simply going to a med that's 3-5 times stronger than morphine when delivered IT, my refill interval went from 30 days to 74 days. at 25 mgs per ml. They could go to 30 and that would mean an extra
40ml x 5mgs =200 more mgs of dilauid in the pump , at 5 mgs a day, thats 20 more days. I was tyaking 150 mgs of meth when I switched and my prebvious morphine dose was 600 plus up to 4 30 mg roxi a day. They started me at 2mgs.
Fentanyl is about 100 times stronger than morphine. So your talking mcgrams per ml and could easily go 3-5 months even delivering huge doses of fent. Not being able to go beyond 30 days or being able to deliver as much as your oral dose of any med makes no sense at all. He saying time to see the surgeon, meaning he doesn't do the implants himself, who's going to manage the thing and make adjustment?.
IF your going to go the pump route, you might want to find a doc who actually knows how they work and how to manage one. The new
synchromed11 even has a take home telemetry device he may or may not give you, so patients can give themselves limited bolus doses instead of using BT oral meds.The home device has limis set by the doc, no more than .2 mgs per hour and nop more than 3 times a day. They can program whatever they want your ranges to be.
Conversion factors are just guides. when you first start hearing about the device I heard it made meds 300 times more potent, as surgery came closer it dropped to about 100 times more potent than oral. Based on my present use, it's about 60 times more efective. but those factors will be different for everyone.
What concerns me is the idea of taking your pain away. If that's your expectation, you shouldn't have it done. When managing your pain they ask the same questions they did with oral meds, what;'s your average score on a pain scale, what's your highest, lowest etc. 100% relief is not the goal just like it wasn't the goal of oral meds. A trial that relieves 50% of your pain when you discontinue your oral meds is considered a succesful trial. I went cold turkey from oral to pump and sure it was miseerable the first few weeks or months but the office was very accomadating.However once you reach 50% relief, that's the target.
Things like constipation or urinary retention, may prevent you from obtaining better relief. Groggynees,drowsiness, feeling doped and loss of labido if not loss of function if your shooting for 100% will certainly occur. IF your ready to give up sex, they can keep increasing beyond 50% relief. If nodding off in the lazyboy for the next 30 years is cool with you, you may obtain better relief.
When I mention people do have to cope with some degree of pain , it's an honest answer, If you constantly shoot for 100% relief, your would increase at the same rate as a junkie, never satisfied, always trying to recapture that first big dose you got. A few weeks after the increase it won't be 100% anymore, if you expect an increase because the relief dropped to 80 or 90 % relief, it;'s no different than an addict or a dog chasing his tail. 50% relief is what medtronics advertises they shoot for. For some people 50% relief means they can return to work. For others it means they can walk and stand in the shower without help. Even 50% is very patient dependent.. No amount of meds will hide the sensation of screws pulling out or bone grinding on bone.
A pump is a tool, not a cure all to take all your pain away. Medtronics recomends doing a psych eval to be sure the patient has reasonable expectations. If you tell them you expect all your pain to be masked so you can start skiing again or mountain climbing, a decent shrink would say your not a good candidate. Medtronic also recomends doing trials and they recomend using a plecebo dose. I have seen folks washed out of pump trials by reporting amazing results from saline.The power of suggestion, that you're now getting drugs delivered to your spine making them 300 times more potent is a powerful thing.
Excpect to start low and increase over time. The saw me every week the first 6-8 weeks, then every 2 weeks then every 3 and eventually by the 6th month I was at 50% relief which is what I got from meth, but I wasn't dripping buckets of sweat, I was able to have sex and my head was clearer than it had been in years. It's like turning the lights on in a dim room going from equal relief from oral meds to a pump. IF you go beyond that mark, the meds do start to impair, you will nod off and loose your sex drive. It's not a gaurenteed way to relieve all your pain nor something the even shoot for.
If a doc is selling you this, you won't be happy with it.Those steps in the tiral process are there for a reason. Just because it's a more eficient way to deliver meds doesn't mean it's for everyone.
Even if it does relieve enough pain to return to work, you have to think about the liability issues anyone highering a guy with a morphine pump in his belly is taking. You won't be driving a bus or going back to be a cop or fireman, pilot, air trafic controller, or anything that requires absolute focus and concentration with a morphine pump in your belly. Nobody is going to believe you're perfectly safe to drive and take full liability for any damage you may cause while having meds delivered non stop via pump
You can go to medtronics.com and look up infusion drug delievery systems or specifiaclly the synchromed 11 pump. They do make the isomed which doesn't use a battery and is a lifetime pump but you have no programability and any increase is done by increasing the concentraion since the meds are delivered at the same constant rate.
Good luck and I hope it does what you want and I hope what you want is realistic. ) pain isn't a goal of most PM docs. YOu may find you can increase your dose and tolerate a higher proportioanl dose when meds are delivered IT, but ebventually the same side effects of high dose oral meds will start to build with meds delivered by a pump.
If you can only go 30 days on morphine because you need 30 mgs a day, which is huge, then they should switch you to dilaudid which is 3-5 times stronger which means 3-5 times longer at the same concentration. Fentanyl and Suffentanyl are even stronger. But be sure you have a succesful trial or your going to take risks you shouldn't and not be satisified with what the pump can do. That would be the only reason to continue oral LA meds but if your not satisfied with a pump at what point would you be satisified? When is enough pain relief enough. When the meds impair you and hinder you more than they help. If I wanted to spend the rest of my life with a catheter sleeping 20 hours a day, they could make that happen. But that's not improving quality of life just because your reporting no pain.
IF your not dying, they consider more than your level of pain. Nodding off during the last few weeks of life is humane, nodding off the next 30 years is what an addict shoots for. You become tied to a doc for life, yu have to trust your doc will make necesarry increases in a timely matter while titrating. But I have met folks that had questionable suces during a trial, spend 6 months trying to titrate morphine, another 4 months trying to titrate dilaudid, then another 8 months plauying with fentanyl and suffentanyl only to be never satisfied and have the pump removed.
Good luck and if this surgeon doesn't suggest doing a tiral because he ofers a gaurentee IT meds will work better than orals, find another surgeon that will do it right and let you actually experience what IT meds can do and what it feels like.
The other pump you are referring to is a Codman 3000 by Johnson and Johnson. It seems as if Medtronics (battery operated) has been around a long time. I have a friend who just had to be cut open after only 5-6 years because of battery failure. My pump I believe runs or operates off of a freon type gas. They predetermine the mixture or strenth of your medicine and the pump constantly releases it continuously, but it seems as if I read a thread once by SHORELINE who by the way is very knowledgeable about this kind of stuff, be he seemed to indicate that the Medtronic pump does have advantages, like it can be programmed to give you more medication during the active hours when you need it the most, and less at night when you are resting. Research your options very well as it is a very important decision and ASK< and ASK and ASK questions so you can make an imformative decision. Luckily I have medicare and BCBS of Fl, you will need all you can get because I got the bill in for my last injection for Morphine/baclofen/Clonodine refill and the doctor billed the Medicare nearly 2600.00 for the one shot and I didn't even get a Bolus injection. The insurance comany only settled for like half of that amount but that is expensive for a 3 minute procedure that it takes to refill my pump. Good Luck, and mke sure you really reasearch all of your options before making a decision, The stiulator was never mentioned to me so I don't know anyghing about that only the pump combined with some breakthrough meds keep my pain at fairly tolerable level, but I seriously think that thier isn't any treatment option that will give you 100 pain relief, you will probably have to live with some level of pain, just try to get something that can manage your pain the best and try to deal with the rest of it. Good Luck and never give up.
Shoreline, let me try to answer some of your questions and perhaps express myself better.
My meds are Avinza, 180mg a day. Demerol 150mg a day. I take 90mg at 8am
and 90mg at 8pm. For me, it seems Avinza is not a 24 hour med, it is a 12 to 15 hour med. So by taking it 12 hours apart I am estimating that I will rarely have more than 120mg at any one time. My PM&R dr. had originally set my upper limit of Avinza at 120mg per day due to Respiratory problems. I think my current regimen should still be close to the 120mg he wanted.
I take another dozen or so prescriptions not related to pain.
I am not sure which pump he was referring to. Since I have not really held the units, and I have not spoken to any surgeons, I am guessing which unit I would want. I do NOT want a pump that sticks out where I can bump it. The DVD we watched had a large lump where the pump was. I would bang that on something and cause a problem. If small enough, I would like the 40ml unit.
If I had a 40ml unit, do you have any idea how long it would last if it were matching up so that it gave me equal to 180mg of Avinza? I think I am awkwardly asking how many days a 40ml would last if it gave me the equal to 180mg of Avinza.
What are "LA meds"? I do not understand that sentence in your post. "I use Roxicodone for BT but no LA meds..." What does LA mean?
You mentioned withdrawals. If you were away from home and might run out of morphine, can you use an oral morphine until you get home? Or do you have to find an ER ?
You make an excellent point. Who IS going to maintain the unit? I don't know.
It has not been discussed yet. I was told I WOULD get a remote control unit to maintain a proper ...uh...balance?
I understand none of these units will take away 100% of the pain. I never thought about how I would transfer from oral to a pump. Why did you do it cold turkey?
AND when I do the test run with a pump, how do people convert? Other than cold turkey. I would have to have enough morphine to keep me out of withdrawals. Whew, you are really helping me here. I had never thought of any of these things. Your comments are a real eye opener.
I initially had urinary retention and constipation. I found relief for both of those problems, or least enough of a solution I can "live with it." I just saw my urologist and she ran a lot of tests. Her conclusion was that my urology problems were due to pain. I am not sure how much of this urologist stuff I am allowed to say, so I will drop it with that.
I have read your posting a couple of times. You refer to a "50%" relief of my pain. Right this minute, at 180mg of Avinza, I feel like it has stopped 75 to 80 percent of the pain. This is the most relief I have had from my lower back since I hurt it again in June 2001.
I am medically retired. I was in the Air Force 20 years, so I have a retirement and medical. I am very lucky. My medical is Tricare Standard (PPO) and I pay for a supplement that pays the rest of the bill.
You have a good handle on the pain situations. We are lucky to have people like you to help us through these things.
hurtin4sure...A Codman 3000 was not mentioned. My PM&R dr. has his likes and dislikes, so he is sending me to the local clinic that does medtronics. I
certainly don't know one from the other. I wish I did know more. As both of you have said...ask..ask and ask some more. I will research what you have said.
Thank you very much. I have read the posts twice already and will read it again. Some of the terms are new to me...LA..dilaudid...the concept of only relieving 50% of the pain...a lot of food for thought...thanks again.
I had a morphine pump implanted about 3 years ago and will be glad to answer whatever questions I can for you about it.
I have DDD in 3 discs and after trying everything that was available to me and it failing and being told that further surgery was not an option, we needed to concentrate on a lifetime of pain control. My PM doc recommended doing a trial of the pump. That went well and we decided to go ahead with the pump. For me the trial period was about a two weeks long. It was not a matter of getting the dosage high enough, but to make sure I wouldn't have any reactions to the morphine. I had to go to the doctor's every other day or so to have it checked and the dosage adjusted during the trial. My PM doctor did the actual surgery to implant it and does all the monitoring of the pump.
I've had some success with the pump. It has brought the pain down when I do absolutely nothing. Most people get a much higher pain relief than I've been able to get, but with my back as bad as it is, I still have to take oral meds and am extremely limited in what I am able to do.
As you know there are two types of pumps. One works on hydrolics (the kind I have) was Arrow now Codman and the other by battery. The are filled differently and the dosages changed differently, so there is a big difference between the two. From what I understand the battery one has to be replaced every so often (forget how many years) to replace the battery - this requires another surgery. The hydrolics one works by just that and is expected to last for 20 years or more.
Has the doctor shown you the actual pump so you can get an idea of how it works and what it looks like? You can see pictures of it online as well to get an idea. They implante the pump resevour (about the size of a hockey puck) in your front (one important thing is to discuss placement with your dr. - mine was very considerate of where he placed it and it's just under my ribcage) and there is a cathetar that goes around your side and connects to a port in the spine. Mine has to be refilled about every 60 days. They insert a special needle into the pump and remove the remaining morphine (there are no preservatives added so they have to drain it each time) and then refill it. It's not very painful, less than having blood drawn or about the same, as long as you have a good tech.. With the Codman they change the dosage by increasing the amount of morphine that is filled into the pump, so it takes quite a while to get your dosage up. It has to be done in slow increases and for me it took months to get my dosage high enough.
Back to placement... if placed too high it can get up under your ribs, too low and pants would be difficult to fit. Even with mine where it is I have to wear low rider jeans/pants because a normal waist band is annoying.
The pump is not visable at all with clothes on, but does poke out some without clothing. The cathetar is almost impossible to find unless you feel around for it and the port in the spine does poke out a little.
It's difficult to say what dosages would equal what because they don't figure them like oral meds.. This is going directly into your spine so you don't have to take near as much for the same effect - plus your body is not having to have it going through your system. But I've found that most people still need to take oral meds to alleviate their pain. My pump is set at 30ml which is about as high as they usually will go with the dosage and gives the same amount constantly. There's this whole formula that they use and it sounds like Shoreline is much more of an expert in that department than I am.
As far as going through air port security - you are given an ID card and are to carry it with you at all times. You can then give this to them and they will understand what is going on. It's made out of titanium by the way. I've been through a metal detector at the courthouse and it didn't even set it off.
Appointments for refills are scheduled for a few days before your "alarm date" (when your pump will run out) and this should be taken into consideration when you are planning a trip, etc.. I don't know if an ER would be able to refill your pump for you if you were out of town. My doctor has to order my meds and they come in mixed and ready to be used.
I hope I was able to add something to what the others have already so wonderfully posted. If I can answer anything else, just let me know.
Good luck and please take your time making this decision. I'm in my mid 30's and will have this for the rest of my (God willing long) life. It is not meant to nor is it going to take all of your pain away. Please make sure you are dealing with a doctor that has a lot of experience with these and can tell you exactly why you should have one model over another and that is willing to answer all of your questions as many times as you need.