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.
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.
LA means Long Acting. Any medication lasting more than 8 hours is pretty much considered to be "long acting". The Avinza you are on is considered a LA medication.
I don't have any advice about the pump, I haven't had one. But I do have some concern regarding the reason why you are getting one. If you are at 80% relief of pain then your pain goal is met by medical standards. It is not the goal of any PM to have 100% relief, this is unrealistic for many reasons and your doctor may be setting you up for a hard fall and sometimes it can also lead to addiction through self medication because 100% relief doesn't last long and some individuals take it upon themselves to get back up to 100% when they fall short of it.
When an individual is initially placed on medications they've not taken before and the level is adjusted appropriately there's what one calls a "honeymoon period". This period of time is when an individual gets high levels of relief, 100% relief for instance. Because of tolerance issues and our bodies adjust this "honeymoon" or period of great relief can often be very short lived (weeks or months) and a certain percentage of pain comes back. The only way to get that same level of relief is to increase the levels of your medications.
As posted by Shore many times in other posts, you'll be chasing medications in the same way that an addict does and you may never get the amount of relief you believe you should have.
The actual goal of pain management has never been 100% relief, most doctors shoot for 50-80% relief tops because they understand that to give you 100% relief will leave you believing that you must always have this level of relief and again, it's unrealistic in the sense that you'll be on very high levels of medications before you know it.
I think the guys gave you some wise advice, definately ask lots of questions, especially as to why you are going to have a pump implanted and are you actually a candidate? Most doctors require a psychological evaluation and often pumps are left as a last resort for individuals who gain no relief from higher levels of opiods/narcotics. 180mg isn't that high of a level to be honest and if you have 80% relief with that you are getting more relief than the average person. Because you have stated you have problems with asthma on several occasions I would be concerned as to how you would react to morphine via the pump. What will happen when the day comes that your medication no longer stops the pain and you can't increase your morphine? Remember you are going to have to have surgery to have it put it and if there's a problem then surgery is the only way to remove it. It's a huge step, especially since you haven't tried diluad or fentanyl which are alternative medications that can be put in the pump. I would think that if you are unable to take that medication you'd be at a dead end when it comes to the usefullness of the pump itself.
Whatever you decide, I hope you do what is best for you in the long run and wish you lots of luck.
After reading your posting and the others I wonder about a couple of things.
1. Did you or anyone else get the option of an electronic or morphine pump?
2. Do all the pumps have remote controls? The two I was told about both
have the remote controls. In fact, I got the impression you could change your settings immediately if there was a problem....a spike in your pain.
3. The battery type seem to have a lot more flexibility when using it: Increase/decrease the dosage easily. Here is the question I want to ask and say it "just right". Let's say a person can adjust the dosage at any time. And suppose this person is receiving 15ml of morphine per hour (is it per hour or per day?).....anyway...if you are getting 15ml and hurting quite a bit, why can't you turn the pump up from 15ml to
20 or 25ml to stop the pain? WHY would you suffer if you can just increase the morphine dosage?
5. Trial periods ...did everyone get exactly ten days? Or if you are happy with it after four days, would they terminate it? I mean, really, we can get oral or a pump...right? Not counting an IV...not practical.
6. Charliecat31, one sentence you used...I didn't understand it. "I've had
some success with the pump. It has brought the pain down when I do
absolutely nothing." What did you mean by that?
7. The electronic pain relief unit they told me about has a battery that is guaranteed to have a 9 year life. And you can re-charge it while it is in your body. I wonder how THAT is done??
I understand what you are telling me. This is a lifetime commitment. I have heard of people having a heart replaced, and even replaced again. If these pumps fail you...can you avoid withdrawals with oral meds? Thanks again, I will read your posts several times before August 8th. Nothing happens fast.
I was told about the pumps in March 2006. I will finally get to talk to the doctor almost 5 months later. Glad I wasn't in a hurry.
Hey Dlfo, I happened to pick up the Kadian conversion book the manufacturer sends toPM docs. Just as an example, They were converting dilaudid to morphine, The conversion rate is anywhere from 1.3 to 7. That's a pretty wide range and everyone is different. The route of delivery makes a difference. Dilaudid is far more efficient when given IV than when given orally.
Like kissa said you not on a high dose and 80 relief is where docs should be considering cutting back if your not taking adantage of it and excercising, and doing something other than swalling pills to improve your condition.
If your concerned about respirtory surpression, you take the same risk of respirtory supresssion with Intrathecal meds delivered by pumps. Opiates are opiates regardless of how they are delivered. Eventually side efects will prevent you from further increasing wehter it's oral or pump. If you start out trying to obtain better than the 80% relief your getting with avinza, how much higher to you think you can go before you impaired by side effects, or can't pee without being cathed or can't have BM without being unimpacted weekly.
You seem to think it's strange that it took 5 months to finally talk about the pump as if it was somehow being withheld. I talked to my docs who do the implants and management themselves for 3 years before I did an actual trial. The first trial failed due to spinal fluid leak and I waited 6 more months before doing another trial.
The main question the pump doc is going too ask is why do you want a pump. If your answer is to get better than 80% relief when your already their with orals, A doc with any credibility would tell you to come back when you can no longer obtain pain relief with oral meds or just laugh you ourt of the office. Then again, he may be willing to make 30K for 2 hours work and straighten you out as far as what to expect. Once you have a pump, if the doc sauys I don't go above 2 mgs a day,which is equal too 600 mgs of oral morphine on some charts and youmay actually take a giant step back if he's not willing to shoot for the same absurd goal you want.
My dose was more than 3 times what yours is before I even considered a pump because it is the last resort. I was experiencing intolerable side effects and couldn't get better than 50% relief from orals. The benefit of the pump is it doesn't circulate through your body systemeically. If you take LA orals on top of a pump, you defeat every advantage of usig a pump. If your able to work now, and aren't satisfied with 80% relief, By the time a pump is relieving 100% of your pain and you have to adjust it at every visit to maintain that level, the drugs themselves will impair you to the point of disability. Is that exceptable in your mind. To trade yourbrain and other working parts of your body for 100% relief. Your not planning on having kids are you. I guess they do make Viagra and why shouldn't you have some of that, but cialis lasts longer so that's the one your entitled too because it's the better drug.
Just because they make a stronger med, doesn't mean you are entitled to a stronger med, better delivery system or even should consider a pump.
My doc said that when you can no lopnger obatin relief from orals or the side effects become to imapiring then we should talk about a pump. That made sense to me because I had resonable expectations. There is no amount of medication that would relieve 100% of my pain and leave me fiunctional.
As far as bolus doses, delivered with an at home telemetry device, THose don't change your settings or concentration, They simply alow a slight increase for a limited period of time. The reason they use higher concentrations like 25mgs per ml or 30 mgs per ml is because a patients dose is so high they have to come in so often it becomes a hassle.
I hopped between 120 mgs of meth and 600 of oral morphine "Kadian and generic MSC." But morphine is morphine. The initial conversion the doc uses will be between 100:1 and 300 1.
At 100:1 your morphine pump dose would 1.8 mgs a day devided by 24 hours.
That equates to a delivery rate of 0.075 mgs per hour. Although the home bolus telechnology is available, it doesn't mean you will get it, or the doc may remove all orals in place of a bolus device. The home telemetry uinit does not have the ability to increase the mix ratio/ concentration of the meds that are in your pump. When your meds are ordered for refill the doc chooses the concentration, whether it's 15mghs per ml or 30 per ml.
The only thing the home telemetry unit can do is increase the flow rate for a 1 or 2 hour period. If .075 was you constant flow rate a bolus would mean the pump would speed up and deliver at a rate of say .080 per hour for a couple hours, The telemetry device may be set to allow you to do this once a day or twice a day but parameters are set by the doc. Other wise they couldn't predict your refill date and these preservative free meds at whatever concentration with whatever adjunct med, have to be mixed by a compounding pharmacy. I live in VA and my group uses a pharamcy in Fla, so they need 2 weeks advance notice to order the meds.
Going from .075 to .080 doesn't sound like a lot but it's a %5 increae in what you were fealing and intrathecal meds don't require the large 10, 15% or 20% increases to make a diference. 5% can be the difference between tolerable and intolerable side effects.
If the doc goes on the conservative side, he would use 300:1 as your starting dose and your starting dose would be .6 mgs a day or .0025mgs per hour. . If you have a 40 ml resevoir, and the doc started on the wild side "wreckless" and used 50:1 conversion to start. 180 mgs of oral morphine would equate too O.2 mgs per day or .oo83 mgs per hour (.0083 X 24 hours =0.2 per day). Usingg 50:1 and a daily dose of .2 mgs a 40 ml pump will last 200 days with a 1mg per ml concentration. I just don't see how a pump could not deliver enough meds to manage your pain.
How your doc that doesn't do pumps can predict you will need to continue long acting Avinza and BT meds even with a pump because the pump can't deliever an equivelant dose is absolutely wrong. The pump can deliver more meds than you ever considered possible. 5 months or 10 years from the time you began LA opiates isn't the time to think about the pump if your getting 80% relief. What unwanted side effects are you experiencing that won't allow you to increase the oral dose of avinza, not that should need an increase at 80% relief. You need counseling to learn to cope with the remaining 20%. .
You having a pump installed now would be like asking for a pump implant for sprained ankle. Your meds are giving you maximum relief with little to no side effects. What's wrong with the orals other than you see the potential for even greater if not absolute and complete relief? Good luck getting passed the psych eval and good luck trying to maintain 100% relief, you won't be able to and if you could it would be because your using morphine when tylenol would due. If nothing less than absolute relief is exceptable, you will likely wash yourself out of the proghram. To thinK you need a pump and to continue avinza is totally absurd.
I could flip flop between 120 mgs of meth and 600 mgs of kadian, they started my pump at 2.0 mgs per day. It took 16 increases over 6 months to get back to where I was with oral meds. How could you possibly tolerate les than 80% relief for that long? Are you willing to take a giant step back and spend 6 months titrating morphine? What if they can't find a level of morphine that satisfied you that allows you to urinate without a cath or you loose all labido or become impacted from constipation. The answer is they do a another conversion, start on the low side of dialaudid or fent and increase 5-10% at a time untill your reach relief or intolerable side efects. I've met folks at 18 months post op still trying to find the right med and the right dose.
However your not at that point now with orals so why would you consider a lifetime commitemnt to a doc you don't know. If he thinks the conversion is always 600:1 or 300:1. You don't know how this doc will respond to weekly calls for an increase when they start you at 1/10th of what you may actaully need. If you think 5 months is too long to wait for a consult, how are you going to manage 5 months to titrate your pump back to the same level of relief your geting now. Pump meds have the same potential to cause respirtory supression as oral med, IV meds or IM meds. Opiate are opiates. That's what they do.
God help you or the doc if you BS your way through a psych eval by adjusting you expectatins to make them sound right or reasonable. The pump is not the end all of all pain and your expectations are totally unreasonable. AIf I reported 80% relief they would ask if I wanrted to try to reduce my dose. Do you not get how outragous it is to expect a doc to continue to adjust and try stronger and stronger methods to knock a 2 down into 0 pain.
It's the last resort when relief can't be achieved through oral meds. You should be jumping for joy if you can work, meds are avilabele that provide 80%, relief but just knowing there may be something better out there makes you feel entitlted to whatever is used by anyone else. I have a pump, why shouldn't you?
At best my pump relieves 50% on a good day, 50% to me means I don't need my wife to help me stand in the shower when I bathe. You have no clue as to what you could be going through or the levels ofpan you could be dealing with. You haven't even had back surgery and you want the most expensive and highest tech device to manage your pain. Honestly you sound like the most entilteled, self indulgent and unrealistic patient I have ever met. Your not entitled to a morphine pump simply because they make them. Your just as entitled to a 3 or 4 level fusion that may heal you comletely so you don't have to spend the next 40 years dependent on opiates.
You may not like being at the pumps docs complete mercy. Docs that use pumps aren't any different than docs that use orals. Some docs won't exceed certain oral doses and some pump docs won't exceed certain IT "Intra-thecal" doses. What if your doc won't give you what you want, do you think it will be easy to find another doc to take over management and help you try and obtain better than 80% relief. Will you have it removed next year because you don't like the lump and it only gives 80% relief?
You're tied to this doc for life or untill he leaves the area, then your on your own to find another doc that has the 30K in aquipment to manage these things. With such a low dose or oral meds that are more effective than most CP patient will ever experience even during a honeymoon, I think 200 days is plenty of time to find another doc wiling to try and help, but I doubt you will have luck finding a doc willing to shoot for complete relief because you can't cope with the remaining 20% and believe you shouldn't have to experience any discomfort or make a single change in your life to accomadate your horiabbly dehydrated discs.
Shaving 3 strokes off your golf handicap is not a qualift of life issue that demands a med increase or a pump implant. So far you have said nothing to indicate oral meds aren't completely efective or as effective as any rational person would be able to except. You don't need a pump. You need counseling to learn to except the remaining 20% of pain that morphine isn't wiping out.
I don't even want to tell you any more because you may use it to convince a doc you do have relistic expectations or you are experiencing intolerable side efects just to get a pump that you think will relieve all your pain. The only problem is you have to find a doc that thinks that's realistic.
Giving you info on how to convince your doc because your not satisfied with 80% relief isn't doing you any favors. IF your presently working, how will you justify being too doped to work in 3 years if you continue on the same path. I hope your not married or have kids, because they seem to get upset when daddy can't be woken up again and is drooling on himself in the lazy boy.
That's where you headed. It would be one thing if you had 2 months to live. It's completely different when you have another 30-40 years and no concept of what's realistic to expect.
Thank god your geting the relief you do and cancel the pump doc, he may be just as crazy and proceeed with adeice that will need increases monthly the rest of your life to maintain your expectations..
Glad to help in anyway that I can. Here are some answers to your questions.
1. Electronic or morphine pump? I assume you are talking about a Spinal Cord stimulator vs. a morphine pump?
My doctor and I discussed the two at length and decided the pump was a better option for me. It's been several years and I honestly don't remember why the pump was better for me, so I can't help you much there.
2. Do all pumps have remote controls? No. The Codman (mine) does not. On mine the only way to increase the dosage is to increase the actual concentration of the morphine when the pump is refilled. It delivers a constant flow only. The other brand I believe you can adjust the settings, but don't know anything more about it.
3. Can't help you with this one, don't know how that would work.
5. (you skipped 4 ) Trial period - I believe they do the trial period for a specific time to make sure how it is working out, so I would assume they would not terminate it early. The trial is very important to make sure you do not have bladder/bowel reactions, heart reactions, etc.. This should not be shortened or taken lightly.
6. My comment of pump controls pain down when doing absolutely nothing... If I lay in bed or my recliner and do absolutely nothing, the pump has helped with pain control. But for me, if I get up and do anything at all, the pump is not enough pain control, so I'm still faced with taking oral meds and extremely limited in what I am able to do. I've been declared Permantly and totally disabled by W. Comp and Social Security, even with the pump. And the pump does not mean you will receive SSD. It actually made my case harder because it was assumed I have better pain control.
7. No idea what this is. I'm starting to think you are talking about something other than the Spinal Cord stimulator and I have never heard of this electronic thing so I can't hellp you there.
I'm glad you are taking this decision so seriously. It is a big deal and something that requires a huge commitment. If you are able to avoid going to this extreme, I would. BUT... if your pain is not being controlled sufficently, then the pump is a good option. I've reread your posts and it sounds like you have fairly good pain control with what you are currently taking. The biggest advantage to the pump is that your entire body is not having to absorb so much medication and you would be able to lower the dosages of what you are taking orally. For me, being so young, that was a big factor. Not having to take so many narcotics, etc and having my liver and kidneys filtering them for so many years to come. But this is not the only reason to consider having a pump implanted. There are so many factors that go into if you are a good candidate or not.
Another thing you need to understand is that it takes many months after the pump is implanted to get the dosage up to where it needs to be. I believe it took me approx. 6 - 8 months to get it up as high as mine is. The increases have to be done very slowly, is why it takes so long. During this time you will probably be going to your doctor more often than the every 60 days for refills. I don't remember if I mentioned that I would expect that most, if not all doctors would have you go through a pysch eval before implanting a pump. The answers you provide are very valuable to your doctor in determining if you are a good candidate for a pump, so please be honest in this eval.. It's also important to talk to your doctor before hand about how high he is willing to go with the dosage in the pump. I'm not sure if all doctors are willing to go as high as mine did with me, so you need to take into considerations what limitations he may have.
Not all PM docs fill pumps, so if your doctor retires, moves or you move out of the area you are going to have to find another doctor that fills pumps. My doctor actually has a patient that travels over 1,500 miles to see him every 2 months because she had such a hard time finding a dr. she liked when she moved. This is something you also need to take into consideration.
Thene there is the cost to consider. I believe my doc told me that the pump alone is $20,000 PLUS! Mine shouldn't have to be replaced, but there are very few people that have them implanted so young, so there is always the possibility that I will need a new one down the line. That means a new pump, another surgery, etc. and another very large bill. I don't know what kind or if you have insurance - but if you do, you better make sure that they cover pumps, refills, etc.. The refills alone are expensive!
I honestly believe that the decision to have a pump implanted is a very personal decision and that you have to consider ALL the pros and cons about. Please - talk to your doctor at length about it. Is your doctor the actual one who will be doing the surgery and filling the pump? If he's not, you need to make an appt. with the one who will be. Ask him all the same questions. Write down all of your questions and take them with you to your appt.. One thing that I found was helpful when I've had a lot of questions is, I fax them to my doctor as far before my appt. as possible and that way he has time to go over them at his convenience and then can basically just tell me the answers when I'm there. Of course you can take more questions with you if you think of them after. Another thing is when I take questions to my appt. is that I write them down and leave plenty of room between the questions so that I can write down the answer when he tells me. That way I won't forget what he said.
Please make sure you are dealing with a doctor that has A LOT of experience with pumps. Some doctors out there do not and I would assume could make a great deal of money off them. However, you will be the one to suffer from an inexperienced doctor.
I wish you much luck in making this decision. Dave (Shoreline) has some compelling things to say and I hope you will take them into serious consideration. The wonderful people on this board are full of information and compassion and it is wise to listen to what they have to say.
If I can answer any more questions, please let me know. Take care and again, good luck in your decision.
I think Dave makes some very compelling points that should be carefully thought about before going ahead with a pump. I am a bit disturbed that a doctor would willing place a pump in a patient who has greater than 70% relief, has not tried different medications and has not had surgery to try to resolve the problem. Perhaps the doctor has planted unrealistic expectations as to what a PM actually does?
I know that we all strive to be as pain free as possible and sometimes will do almost anything to achieve that goal but we need to be realistic in terms of what medicine can actually do for us and what may happen as a result.
I've been a PM patient for about 3 years and have been on morphine for 2 of those years. I get maybe 50% relief on a good day. I have gone through 13 surgeries with #14 in 2 weeks. I have days where I can't even walk the pain is so severe and life as I once knew it has long since gone. From what I'm understanding by your doctors standard I too would qualify for a pump but it's something I personally would not do at this point in life when there are still other treatments I've not tried.
I guess what I'm saying is please really think long and hard about this and also consider other options first. Having the pump and getting greater than the standard expected relief almost gives cause to not ever have surgery and in turn the longer you put off surgery when viable the harder it is to heal and the more complex a surgery may become. I would really hate to see you create new problems while trying to fix a current one. Understanding what the actual goals of PM really are and accepting that you may never be 100% pain free is essential, without it you'll be chasing dreams for many years to come
I was sorry to read in your post that you have suffered a spinal fluid leak in the past. I had one and OMG the pain!!!! I don't think there is anything worse that I have experienced in my life than a spinal fluid leak headache and hope that I will never experience it again!!!!
Did you have a blood patch to alleviate yours? Thank goodness for that thing!
Hey Charlie, Yes they did a blood patch to fix the leak from the in patient trial. However my PM doc said he preferred todo the blood patch at his clinic rather than at the hopital the implant was done at. I was discharged and my wife drove me home in misery. I was as reclined as much as possible but it just wasn't enough. He also said it may heal on it's own over night which I think was just thrown in to make me feel better.
The blood patch fixed the leak the next day and I haven't had a problem. My own situation sounds so much like many that have a better undeerstanding with the limits of meds. I could have written Kissa post and just changed the surgeries a bit. Being awarded SSD for chronic pain and physical injury is no easy feat. If someone also has psych problems and many on SSDD are there for psych arhave a much evsier time because psych problems are also uinescable and at best meds keep things in check. That is those truly sufering from active disorders.
I've had 3 other lumbar punctures from ESI and had blood patches for them that worked instantly. IT was the only thing that has ever made me pass out, a blood patch that is. They were inhecting the blood and telling me I would feel a fulness ion my neck and base of skull. I remeber feeling woozy long enough to say I feel woozy and I went limp right into the nurse standing in front of me. I guess they stand there for a reason.
Although I passed out, It was hardly the worst pain I have experienced. Everyone knows that 1-10 scale and has a different interpretation. I use a 10 as the worst Pain I can imagine or have experienced. With every surgery, I had to adjust my pain scale because I was now living with pain I had never imagined.
At best I may reach what I would call a 5 or 6, but I have the same problem. If I'm sitting, standing or walking walking screws pull out, my spine crunches from bone rubbing on bone and squeeks from broken hardare. I would trade a dehydrated disc for no disc and no fusion any day. If a pump is implanted now and any disc goes completely or surgery is pwerformed and fails, where do you go from there. What if you get cancer. If the best they can do is manage half now, what would dying from cancer be like if not sedated. You have to think abouut all those scenarios.It's not as simple as the pump delivers meds to wear you have the most receptors.
I think I forgort to mention that I also did the pump trials without taking oral meds. I had shots of meds available as needed but I had to stop the LA meds the day before. They want to know if the pump will relieve 50% of the pain. Not 50% on top of the 70%+ someone may be getting now. It's an extreme method for extreme cases. I'm not implying anyones pain isn't real, but if it's well managed and you can function it doesn't make sense. IMO
I have read all of your posts. I thank you from the bottom of my heart for taking YOUR time to help me. You have shared not only your pain, but I can get glimpses past your pain into your emotions. Pain is difficult to quantify.
At my worst, I have fell out of my LazyBoy, writhing in pain and if the house were on fire, I cannot say I would be able to get out. I have said this before, and I have read it a second time. I am not good at expressing..at quantifying pain. After hearing of your experiences and how you handled them. I hope I don't have to go through that.
I will cover a couple of things, then want to try to cover your comments in more detail.
Right now, I am leaning AGAINST getting the pump. The way my doctor approached this ...was..like everyone got these pumps and it is just the way we do things. I am not exaggerating much.
I have learned so much from you. I wish we could all sit down and I could buy you a nice dinner....at the drive-in window of your choice
Seriously, I have only scratched the surface of this pump thing and thanks to you I am so much better off. What YOU tell me makes a lot of sense. IF my
oral meds are taking care of it, WHY get a pump?
The only reason I can think of is that the pump should allow you a better life. In that your body does not have to deal with all those opioids. I hope I am saying this right....If I was on a morphine pump, in theory, I would be using much less morphine. My brain would not be subjected to it in such high
dosages. It would be easier on my body? No?
I have so many questions I want to ask, but I don't want to take unfair advantage of your kindness.
FIRST: Wouldn't a pump be easier on my body? Less morphine?
Secondly: NO ONE at my doctors office has EVER mentioned blocking my pain
at the 50% level. Both doctors appear to me...uh...it seems their goal
is to stop the pain. Period. I am 60. Not young, not old...
Thirdly: I am confused. But in a healthy way. You have spent so much of
your time helping me and giving me a LOT to think about.
Fourth: IF I get a pump and don't like it...why not turn it off and leave it?
Would it hurt my body if it just sat there...not putting out drugs?
That question sounds dumb to me...but I am trying to ask you ....
uh...I guess I am asking just that. WHY take it out?
I deleted the end of my posting. My brain is on overload. 2+2 = 5. I think I had sort of walked in to this forum thinking I would have a pump. Period. And life would be better, with few pain problems. Thank you again. We are so lucky to have you helping us. I do not trust my memory, so my wife goes with me to every dr. appointment. Nothing wrong with her memory. She does not remember my dr. covering ANY of the things you are covering. Maybe he thought I would back out if he did. If I didn't mention it, I am retired. Have been full time retired since the end of 2003. As for the SSDI thing, a local attorney who does nothing but SSDI cases reviewed my info and said it should be approved first time in. I have NOT heard that before, but he says they are getting easier to work with lately. I hope so. I just don't have the emotional energy to fight them. I used to love a good fight, but not anymore...thanks again.....
About the spinal fluid leak - my doctor also said that hopefully it would heal on it's own. Hope knowing that another doctor said the same thing as yours makes you feel a little better that your doc was telling you the truth. Unfortunately it didn't fix itself and I had to go in for the blood patch (which like you was done in the clinic). I layed in bed for 36 hours or so experiencing pain like I never knew existed. Plus my doctor is about 70miles away , so my husband rented a van and put a blow up mattress in the back to get me there because I couldn't even sit up. Within an hour or two after the patch I was feeling like I atleast wanted to live. They kept me in the recovery area of the clinic for 6 hours or so to make sure I was doing all right and then sent me home. By the next day I was back to myself and have never had a problem since. I don't remember feeling much of anything when they did the patch - maybe because my head was in so much pain that I didn't have feeling left anywhere else in my body.
I was just granted SSD a few weeks ago and am still waiting on the figures. It was a long battle and it's been hard to accept that this is my life and I will never see any improvement . It's been over 3 years of filing, appeals, hearing, blah blah blah and I'm so glad it's finally over. My attorney was concerned that I wouldn't be approved because of my age, education, work history, but I was. Chronic pain is not one of the cryteria that is listed for approval, so getting SSD was very difficult.
I've actually been told that my discs are so bad that more surgery is not an option, so it was then a matter of life long pain control. I had my pump implanted a little over 3 years ago and there were so many things I had to take into consideration when making the decision. It's not a solution for everyone and quite frankly I don't think it should be an option for all pain patients. But for me, it was the right choice.
DLLFO - I'm glad to hear you are taking so much effort into researching the pump. I know it can all be a little overwhelming, but it's worth it to make a very informed decision. If you are getting the impression from your doctor that everyone gets pumps, then run as fast as you can (or slowly walk away ) and do not return to this doctor. Of course, make sure you have another doctor lined up first. Pump, spinal cord stimulators, etc. should be reserved as the treatment of last resort and only after careful consideration of each individual patient.
What you said about the pump allowing you to decrease your oral meds is true. You would be able to decrease your oral meds and therefore your body would not have to filter (for lack of a better word) the meds through your system. However, this is not and should not be the only reason for going with the pump. It is something to consider, but not the only thing to consider.
Please feel free to ask all the questions you want. If I get tired of talking to you, I'll let you know (JUST KIDDING )! Now, on to your questions...
Pump easier on your body - yes AND no. Yes, you would be taking less morpine orally, but you are also subjecting yourself to surgery and complications. It is possible to get an infection at the site of the refill injections and this can be extremely dangerous. This is a possibility each time you have the pump refilled.
Blocking the pain completely????? What a nice thought! In a perfect world perhaps, but here in reality, I don't think that is possible for the majority of chronic pain sufferers.
Turn off the pump if you don't like it? I'm sorry, but that you are having this thought at all says you shouldn't have a pump implanted. No, you can't just leave it in your body without having it refilled. I actually talked to my doctor about this specifically because I wanted to know what would happen with my pump if I decided to get pregnant. I wouldn't want the morphine in my system at all, so I wanted to know what my options were. He said I would need to have the pump filled with saline on the same schedule to make sure the pump didn't go dry. Once you have the pump put in, it's a lifetime commitment of refills, doctor's appts., etc. This is part of what the trial is for, to see if you have any adverse reactions, etc.. Bottom line, once the pump goes in - it's nothing to screw around with. Also, you are talking about an extraordinarilly LARGE amount of money to have this done. If I remember right the pump alone is upwards of $20,000.
I'm glad you found this board and are finding so much information that your doctor isn't covering with you. The fact alone that he's not discussing this in such great detail bothers me. This is nothing to take lightly and I'm glad you are realizing that. I'm also glad your wife is so involved, this is definately a time when you need a strong support system. I don' t know what I would have done without my husband. It put a lot of strain on our marriage, the pain, the battles, the financial problems, but we made it through and are still going strong.
Hang in there my friend - and feel free to post all the questions and concerns you may have.