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Information and advice needed for Implanted Pain Pumps.

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Old 08-03-2007, 10:00 AM   #1
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Smile Information and advice needed for Implanted Pain Pumps.

Hi to all who can help me,

I was referred to a back/pain specialist dr., by my rheumy dr. I went for 1 visit and he and the office took a lot of info from me. The prescribed a MRI and I had that done, of my spine.

My 2nd visit, he said that I had about 5 (not major) injuries/RA places on my spine. He advised me to have a pain pump implanted. I hope to be able to do this. His office is currently checking with my insurance (I cannot afford to do this, unless they pay). And if that checks out ok, then the next step is to go to 1 psych appt. That doctor has to ok me to possibly have a pain pump.

Then I would go on a 3 day trial pump/catheter. He says that I would need to stay in a hospital that is not too far from his office. Then he could check on me often, during this trial run.

From what I have read (very little so far), some people get to go home during their trial.

Could any people help me with this type of procedure/operation. Any and all advice would be greatly appreciated.

Thanks, Wannabe

Last edited by WannaBeFreeToRoam; 08-03-2007 at 10:02 AM.

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Old 08-03-2007, 04:16 PM   #2
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Re: Information and advice needed for Implanted Pain Pumps.

Hi Wanabe ....Wow! It almost sounds like you are going straight to the big guns right off the bat! I'm sure that you must have some medication history because I can't think of a doc who would recommend the pain pump as your first, second or even third option. Can you give us a little more information about what you've been doing to take care of the pain? There are a few folks who have the pain pump on this board and I know one in particular can be very helpful with his advice and information. I'm sure he'll be posting shortly. Anyway, I have been considering a pain pump myself. But I've also been on opioid medications for almost 10 years and currently I'm using the 100 Duragesic Patch (changing it every 48 hours) and 30 mg. of oxycodone up to 4 times per day for breakthrough pain. I'll wait for your response about your current treatment. All the best - Memere (Kath)

Old 08-03-2007, 10:54 PM   #3
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Re: Information and advice needed for Implanted Pain Pumps.

Hi Kath,

Thanks so much for writing. I started out with my family dr. giving me some hydrocodone, just for use when my osteo arthritis was acting up. Then after a year or so, he referred me to a rheumatologist.

My rheumatologist doctor is great. I have been going to her about 3 years or so. I was 1st diagnosed with osteo arthritis. She started me on Skelaxin, a muscle relaxer, possibly 2 x day. And with that, she gave me relafen (arthritis med). Every 6 mo. or possibly more often, my pain or help with pain, meds were upped or changed. I was eventually diagnosed with rheumatoid arthritis. And that is now full blown (no ups and downs) and just about everywhere on my body.

I now take Skelaxin, 4 x day, Lyrica 2 x day 75mg, Relafen 2 x day, Sulfasalazin (another RA med), 3 pills 2 x day, Tramadol 200 mg ER 2 x day, and Prednisone 5mg, 2 in the am. I also have other drugs from my family dr, my gastro dr., my uro dr., and gyn. dr.

I am not proud of how many meds I have to take, but I do need them all. I have stomach and liver problems and my RA. Now my legs have been hurting badly and my rheumy referred me to this back/pain specialist. He just says that he prefers not to give drugs, because he ends up having to raise them or change them as your body gets used to them and needs more.

I would take the pain meds, if that is what he suggested. As long as they did not hurt my stomach and my liver very much. I just am the type of person that cannot stand a lot of pain. And apparently my back/spine has been injured by things that I have done over the years and my RA.

Just wanted to add that my insurance would not pay for a regular pain medicine dr., but I guess that the fact that this dr. only takes care of the ones with back problems, is why they paid for the 2 visits and the MRI. Just do not know until Mon. or Tues. if they will ok the pain pump.

I could go on and on about what has injured my back (I think), but that would make the post even longer! I do hope that you will keep helping with any information or advice that you or anyone else has to give me.

Thanks, Wannabe

Last edited by WannaBeFreeToRoam; 08-03-2007 at 10:59 PM. Reason: Added the part about my insurance co.

Old 08-04-2007, 06:26 AM   #4
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Re: Information and advice needed for Implanted Pain Pumps.

Hi Wannabe, I think the point Memere was making was that althogh you have been dealing with this for a long time and it's a life long problem that requires continued care. I haven't read that you have been exposed to the doses and types of pain meds, specifically opiates to know if you couldn't be helped by an oral opiate.

The pump is going to deliever opiates and perhaps something like baclofen, but the big string of anti inflamatories to combat RA are still going to be needed, so it's not like the pump is replacing any of those meds. Ultram is hardly an agressive way to manage disabling pain and jumping from Ultram to a pump is like sending your 12 year old son that plays football well off to the NFL because he has potential.

I understand the need to control inflamation with steroids and anti inflamatories and then the meds to manage the side effects from those meds, but those are nothing to be ashamed of. You have RA and other than going to the new class of chemo meds they are using to fight RA the pump is designed to deliever doses and strengths of opiates medication you simply can't tolerate or reach orally. You have exponentially more opiate receptors in your spine, so deliveryving 1/100 the amount of opiate to the spine is a good idea in theory, but if your not presently taking opiates, why would a doc be eager to go staright to a internal pump to deliver something you can take orally.

A Rhuemys' discomfort with prescribing oral pain meds isn't the greatest reason in the world to have a pump implanted, I'm not saying it may not work and be very effective but why have surgery and take the risks of surgery if an oral pain med would work and you tolerate the side effects. You don't know if your doc is unwilling to try.

Pumps can be mismanaged or set too low just like oral doses can be too low, If your doc isn't going to be agressive at managing your pain with a pump because he/she still has the same phobias that prevent them from prescribing oral pain meds. It may be alot of trouble time and money to end up with a pump that isn't set to deliever enough pain medication to maximize the purpose you had the pump implanted. If the doc has some inumber in his head as to how many mgs a day you should need of morphine or any pain med he may never be willing to set the pump higher than some arbitrary number, maybe it's 1 mg a day, maybe 2 or maybe 6. But numbers don't gaurentee relief.

I have seen people with pumps that have to find other docs to take over their pump manamgement when they find out that the doc that talked them into implanting a pump never adjusts a pump above 2 mgs a day. Had they known the doc wasn't going to continue to adjust the dose to achieve max benefit, they probablyy never would have let that doc implant a pump.

Medtronics will give you a list of every doc in the area that is certified to implant their pumps, Knowing their are other docs in your are that do manage pumps is comforting but it's also a back door way to finding someone else to consult with.

I know if you came and saw my doc he certainly has the ability to prescribe prednisone and Rrelafen and when the subject of a pump comes up he would look at your history with oral opiates, if it's non existant, it's hard to sell an insurance company that this s the only way to manage your pain, Aside from selling the insurance company on the idea, he simply wouldn't go straight to a pump without trying all the orals first. He would need the data from the trial and error with orals to manage a pump efficiently anyway, which ones work best, what meds caused what side effects, what dose was working and how to convert that into an intrathecal dose of a med you responded well to orally.

Once you reach some type of ceiling as far as as side efects, cost, or abilty to function on oral opiates then he would consider a pump. So you have to wonder, is he only doing the pump so he can avoid prescribing orals or is he simply lookng at the options and concluding that because meds delivered by pump are 100 time more potent than orals why not go straight to the most efficient way to deliever meds, which isn't the best logic as far as managing pain.

I have seen miracles with oral meds and RA, One of my docs nurses was slowly being disabled by RA and she went through the PM clinic every patient has to go through before becomeing an out patient at the practice I go to, and she went from considering quitiing her job because it was too ddifficult to work with her arms so twisted by RA the palms of her hands were always facing outwards, to getting enough relief to use PT efectively and return to work. With the right dose of orals and the work she put into PT you couldn't tell there was a thing wrong with her by looking at her. Palms now face in and she can get through the day on the right dose of oral pain meds plus the common meds to control inflamation that any doc can prescribe safely.

I know you can't write your entire history, but have you ever tried an LA pain med like Oxycontin, LA morphine, Duragesic patches, Opana or methadone? Any long acting pain med at all that would be a good indicator opiates would help and since they help, using a pump makes sense. The only pain med i saw you mention was Ultram and if that's all you have been exposed to, why would a doc jump to a pump if any of the oral pain meds could be just as effective.

If you have any specific questions please ask, but my big question is why wouldn't they try orals before taking the risk of implanting a pump to basicaly do the same thing an oral med can do.
Take care, Dave

Last edited by Shoreline; 08-04-2007 at 07:06 AM.

Old 08-04-2007, 08:08 AM   #5
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Re: Information and advice needed for Implanted Pain Pumps.

To, i have a suggestion, i understand part of what you going through ( a s here ) however while insurance will not pay for pain managment, is there a possiblity that your doc could refer you to a neurologist, that specilizes in pain treatment?
I guess the problem folks are having are the jump to the pump without the steps to see if you are opid tollerant first.
While i see the insurance at this point and cost is a deterant there is another way so to speak to go.
A nurologist usualy could be found through your network list usually just co pay, while i also understand your frustration adding yet another drug, going straight to pain pump is a big step when there are other possible steps that may be more appropraite to take first...
So my suggestion would be see if you can use your network get a referal to a nurologist which could start you on the path
to see if you are opid tollerant before the "big jump"....
Good luck on your search and there are some great folks here that have lots of information that can or may help point out other directions

Old 08-04-2007, 09:02 AM   #6
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Re: Information and advice needed for Implanted Pain Pumps.

Thanks Shoreline and Zoey,

Ok, I am trying to think and understand what both of yall are saying. I thought that it was sort of drastic for my new Pain/back dr. to say, do you think you would like to do the trial on Medtronics pain pump. But, he said that he hardly ever uses oral meds anymore. I guess that it is just more simple for him and possibly me to do the pump?! I really do not know that much about the pump.

He gave me the booklet and the DVD and I have read the booklet, and will look at the DVD tomorrow. I think that I just do not know enuf about the level and kinds of pain meds. I do know that he said that the pump would not use as much med as I would need if I took pain meds orally.

I cannot use very many kinds of anti-inflamitory meds. The sulphasalazine for my RA, can be used for pregnant women. I tend to itch my arms a lot and get sores - part itching from meds and from stress.

How do you think it would be best to approach my new pain/back dr., to see if he would treat me with drugs instead of the pump? I do know you have to be careful about appearing to tell this kind of dr., what you think you need.

Like what is the differences in the kinds of pain meds that you said, Shoreline? Or where can I read up on this kind of comparison? I guess I need to know more.

I would like to add, that my dad is in a NH about 1 hour away and my mom is still at home, but should at least be in ASL. I drive to see them and pay their bills and try to advise them. So, whatever kinds of meds I would take, I would have to be able to drive and make decisions.

I would like to ask you, what are LA pain meds? Is that just a "special way" to say the meds that you wrote right after that? And are any of those bad for your stomach or liver? I guess that one of the reasons for the pump (in the drs. eyes) is that the med would not go into my stomach. Just straight to the place - I think.

And who would refer me to a Neurologist? My RA dr. or my family dr.? Also, how could I do this - change types of drs. - without upsetting my new pain/back dr. I might really need the pump in some years to the future.

I will keep researching and hope that you help by telling me what you know and zoey and others too. They will probably call me Mon. or Tues. to tell me it the insurance okayed these drs. and procedure.

One more thing, that I might add. My insurance is $5,000. deductible per person per year. And after that 20 % for awhile and then 100%, for the rest of the year. So, I tend to do the most expensive things that I need done, all in the same year. I am 56, and we may run out of money before we get Social Security. Sorry, another ? - do any of you on this forum, think that I could get SS Disability?

Thanks for all yalls help!!! Wannabe

Old 08-04-2007, 05:10 PM   #7
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Re: Information and advice needed for Implanted Pain Pumps.

I'm glad to see you asking lost of questions. I am totally blown away that any doctor would ever suggest a Pain pump with ever trying long acting medications. The comment that he doesn't prescribe orals and prefers this only tells me one thing, he's in it for the money. Pain pumps are incredibly expensive and are a last resort not a first.

Like you I suffer from severe arthritis and have since a small child. My pain is semi managed with high levels of morphine. It does not affect your kidneys or liver and does cause a tad of gi upset but nothing compared to products that are steriodal or have acetomenophen.

I've been seeing a PM for around 5 years now but have been treated as a PM patient by my rhuemy for 20 years. I have been through a gammut of medications and am at the point that my morphine is so high all I do is sleep yet my pm would never suggest a pain pump at this time and I am so shocked that so many doctors lately rush to this huge protocol for pain control especially since the only med you take really for pain is ultramn.

Like Dave said you are jumping ahead in line and it may not be in your best interest. Without a real history of narcotics no doctor in their right mind would subject their patients to such a life altering protocol. That's like you going from 2 tylenol for swelling to Humara injections without ever trying any other product first. It is just not done. Unless you suffer from stomache cancer this may not be the appropriate option and I would think long and hard.

Pain pumps are FOR LIFE!!! you can not have one go dry, the only way to get rid of one is to surgically remove it. are you willing to take that risk? THere are not many doctors who serve these pumps and if yours leaves you what will you do? Theres been many posts here from folks who's doctors stopped dosing the pumps and are left high and dry with the only option of having to have them sugically removed.

Long acting medications like Morphine, Oxycontin etc last for 8-24 hours at a time so you are not clock watching, furthermore most prove to be safer on the kidneys and liver than products like Ultramn or Vicodin.

I suggest you really read the boards, do some searching around here because there's a lot of posts about pumps. I have seen a rash of posts lately about patients getting pumps and not actually going through the real chain of narcotics and it's sad because often doctors do this because of the amount of money they make off these things. Doctors of this nature really need stop practicing.. it's just that scary
No matter how great your illness or pain, there's always someone else who may be worse off.

Last edited by Kissa; 08-04-2007 at 05:12 PM. Reason: rotten spelllllling

Old 08-04-2007, 10:29 PM   #8
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Re: Information and advice needed for Implanted Pain Pumps.

I think I would get several opinons from PM docs. This is the rhuemy sugesting it right? It's not unusual to have another doc do an implant and the PM doc to manage it, but is the rhuemy going to manage the pump, they are hardly known for being the most experienced and knowledgble when it comes to opiates.

Maybe things are just changing so fast that medicine is trying to keep up with patient demand. I'm 42 and I remember when there was no such thing as long acting meds for non terminal patients and If you had a pump you had probably been sent home to die. I was given meds as a last resort when all the surgeries failed and every atempt at PM without opiates had been tried.

I was offered a pump when I reached doses of orals that caused intolerable side effects and I couldn't aford any of the newer meds. This doc makes it sound like why use old technology like pills when you can fly first class and upgrade to a pump. Maybe things have changed to where opiates are the first choice, why risk surgery and actually fix a problem if a pill or pump can prevent somone from having to make a lifestyle change? I guess the natural progression of that school of thought is if your going to be on opiates, why not use the most efficient and effective way to deliver them?

Anyay you look at it, This is just one docs opinion, I'm not sure I would jump at this because it won't be your only chance. The sales pitch can certainly make it sound more apealing than pills every day for the rest of your life. Instead you become a pump patient for the rest of your life.

As far as which pump a doc offers or uses, it's realy up to the doc. Some have a preference between Medtroics and the Johnson and Johnson pumps. My expeirence with pumps is if you have a sucesful trial, they do expect you to go ahead with the surgery within a weeks. Why wait once you make it throug the psych screening and the trial. I first thought I would do the trial and think it over for a few months, but that's really not the level of commitment my docs were looking for. They see patient selection as huge commitment to that patient for he rest of their life, it's not just something you do like a free upgrade to first class because it's available. So they expect the same level of commitment and cooperation on your part.

My opinion is my opinion, just like every doc has their own, but I truly don't understand why someone would have a pump if they hadn't tried oral meds. If you can get by with a dose that works and the side efects are minimal/tolerable, swallowing a pill is a lot less invasive and risk free as far as complications. I do understand your situation isn;'t going to get better and maybe that is reason enough not to waste years on orals dealing with side efects you may not have with a pump. However , when youu turn a pump up high enough you will experience side efects with that too.

It truly is just one docs opinion at this point. Some docs use BT meds with pumps, some won't, some docs still use LA meds with pumps and some won't, some have limits as to the number of mgs they believe shouldbe used dailyy and some will work with you untill you reach your goal. Every doc is going to have a slightly or greatly different opinion. The next doc may say are you nuts, don't you want to try something like oxycontin or 24 hour morphine. Another may try tyo convince you that you already are addicted to medication. The best opinion isn't always the one we want to hear or even agree with but the decision is still yours.

Once you have a pump, any change to the setting or dose is entirely up to the doc. Do you have that level of trust with this doc that he won't go through a 40K surgery and then refuse to increase the dose and leave you in just as much pain. Iisn't as easy to find another pump doc that will make a lifetime commitment to a patient he just met.

I would make a list of questions. Ask if the pump trial goes well, what does the doc expect,How soon would he want to do the implant? Why wouldn't you at least try orals to see if you respond well without impairing side effects? I had lots of questions too and medtronics was great as far as answeing the technical stuff, but actually going this route comes down to do you think it's the right thing or your only option. Just because it's the only thing this doc is offering in the way of pain medicine and relief, doesn't mean it's your only option, Other docs will have other ideas and opinions.

I can't fault you or a doc for thinking it may be inevatable down the road once tolerance demands doses that cause too many side effects. I really can't say what the right decsion for you is, but it does seem highly unusual to skip orals entirely. If the next 3 docs suggest the same, maybe their right and spending 4 years on orals is just a waste of time when you can get better relief with a clearer head with a pump. That is if you respond well to opiates. I'm not sure we know that yet and a spinal drip is a heck of a way to see if opiates relieve your pain. When a simple pill will tell them if your pain even responds to opiates.

Withholding orals seems like a cruel way to rush someone that's in enough pain to need a pump into the one thing they are being offered.
Good luck with your research and decsion and ask lots of questions.

Old 08-12-2007, 04:19 PM   #9
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Re: Information and advice needed for Implanted Pain Pumps.

Hi to all, especially Shoreline,

I just wanted to say that I am not going to have the pain pump implanted at this time. Everyone that I have told, said no, that I should be on oral meds for now.

What really stopped me in my research was, the cost of the refills of meds to the pump that has been implanted. I have heard anywhere from $1,000 to $5,000. And do not know how often I would have had to be refilled.

My insurance would not cover this for the 1st half of 2008, and we do not have very much money. In fact, we may have to quit paying for insurance in a couple of years. I go back to the same pain dr. and will see what he says. His nurse said that he does prescribe oral pain meds. And if that is not true, he has another doctor, that uses the same office space as him. He is not a partner with this doctor.

I was hurting pretty badly, so, my very nice Rheumy doctor, gave me an extra pain med til this or another PM dr. helps me.

I thank you guys for helping me with this procedure.

When I am given some different and more helpful pain meds, by a pm dr., I will certainly come back andd see what yall think.

Thanks so much for your help.


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