Chronic Pain

okay, i have an update on my condition. i was thinking about getting the pain pump but after seeking the guidance of a second opinion i have fouind out that my fusions may ahve not taken as should be expected. therefore, i am on to see a chief surgeon to discuss the next steps. however, the second opinion doc mentioned i could still go with the pump, but i keep reading too many horror stories. i just wonder how long i can "manage" the pain. but, i will see what the chief has to say....

Hi Jimmeeb,

I agree that the pump is usually the last resort for controlling back pain but remember that comments and posts that appear to be "horror" stories are from people who have had problems of one kind or another. Those of us who have had success with the pump rarely post anything so you are mostly hearing from the minority.

The same goes for back surgeries. I've read many posts and articles about failed back surgeries and my own was a failure which is why I'm on the pump.

Certainly, surgery, when successful, is the best way to eliminate chronic pain but it sometimes only provides temporary relief. Fusing of joints is a good example. When a joint is surgically fused, it may mitigate the pain from that area but it also puts stress on the adjacent joints that may ultimately result in new pain from these joints.

Before a pump is implanted, the pain specialist will generally try various oral medications and sometimes recommend alternative therapies such as acupuncture which can be very effective but it needs to be done frequently and is expensive.

The oral medications, usually narcotic based, can provide good pain relief but they do have side effects such as constipation. If they are being used to treat genuine pain, the possibility of addiction is greatly reduced in most people but this possibility should be monitored.

I hope your visit with the surgeon will result in a good recommendation and that you will be able to control your pain soon either through surgery or pain management.

Aloha,
Bob

Hi Bob! And thanks for your kind words and comments. I have so many problems with my leg, hip and back that the docs really don't know what to make of me. I've already had 2 left replacements and I'm only 55 yrs. old. I use to wear a specially made orthopedic boot on my little leg for walking. However, after the 2nd hip replacement, the dr. recommended I give up walking on that leg to keep wear and tear off my bad hip. I have always used crutches for long walks but now I use them for all indoor walking and use a scooter when we go out, etc. Presently, I don't get out much, usually about once/wk, because it is just so painfull to sit. I can't sit on anything hard or straight. I must sit at an angle. I spend 99% of my time in bed laying on my good side. It drives me crazy! I use to be very active. My husband of 33 yrs. is very supportive and since he's retired, can handle the housework, cooking, etc. I'm very lucky in that department!

My pump has never been 100% effective but it does help the pain. Everytime I have an MRI, the drs. see something they didn't see before! There are just so many defects. I also have an old scar for a broken back they tell me. Since the pump replacement in Feb., I've been very uncomfortable. I haven't gone through withdrawal so I must assume they didn't give me a placebo. After the surgery he increased my pump med. by 20% and it hasn't helped at all. I don't understand.

I also suffer from depression. I see another doc for that and she has been some what helpful but we are still trying various meds. to control the problem. I don't know if the depression controls the pain or the pain controls the depression! I can't concentrate on anything like reading and my crafts.

Also, I stay groggy/sleepy all the time. This is a side affect fromm the Fentanyl in my pump. I go to sleep around 1130PM and usually am not fully awake until 4PM! We have tried various medications to help with this but nothing really solves the problem completely. I'm just one big messs.

I hate to think about changing the med. in my pump but maybe that's what it will take.

I have never had my pump area numbed for a med. refill! I have a numbing cream I apply before going into the office but actually numb the area with a needle...no, I've never had that done. But the process isn't 'painful'. I did have one nurse stick me 7 times for one pump refill! (Before she finally hit the port!)

I'm so sorry you are currently having so many problems with your pump. I hope you get the problems resolved soon!

I can tell you are a huge part of this community and also huge help to many people. Thanks for all you give!

Bobbie in West Virginia

Hi Bobbie,

When I read posts from people like yourself, it makes my problems seem very minor in comparison. I certainly give you credit for being able to bravely withstand your situation and for sharing with us in this forum.

Just a couple of comments: depression and chronic pain go hand-in-hand so it's not unexpected. I'm glad you are being treated for that and hope it's successful.

As for the pump medication, morphine sulphate, which I have, is quite common. Prior to the pump implant, I once used Fentanyl patches until I got a bad batch and had to suddenly stop. The withdrawal was most unpleasant. I've never had Fentanyl in the pump, however.

There are some other pump medications that your physician may want to try if you are not getting sufficient pain control from the Fentanyl.

I think my recent problems of having good and bad pain days have been resolved. My pump is now rather loose has changed position since it was implanted 3 years ago. I now find that I have to be sure the pump itself is above my waistline rather than below. Apparently, the feeder tube from the pump was being squeezed when the pump was not positioned correctly. This resulted in a lower dose of medication being placed in the spinal cord which caused the pain to return.

I now keep the pump above my waist when I'm dressed and use a belt at night to keep it from slipping down. As a result, I've had many good days of pain control rather than the "roller coaster" of some good and some bad days I was experiencing previously. I will probably need to have the pump re-implanted in the near future unless I wait for a couple of more years when the battery wears out.

I sure hope you can get the pain and depression controlled soon and that you'll be feeling much better. Let us know how you're getting along by posting now and then.

Aloha,
Bob

Hello, I saw my GP doc today and she was very understanding. Mike, my hubby, and I both currently have sinus infections and feel pretty rough. I suppose she could tell from my expressions, etc. that something more was wrong. She invited us to share the problem(s) as she patiently listened. She really didn't have any earth shattering suggestions but thinks I'm on the right track with having an appt. with my pain doc. I just hope he's as willing to listen as she was.

I have no idea why the orginial pain doc. choose Fentanyl for my pump. The proceedure of the trial for my pump was a disaster. There were only myself and the radiolgist in the room. And he about killed me! The pain was unbearable when he tried to insert the needle and I was in tears. However, my pain doc choose to go ahead with the pump inplant and did not discuss with the choice of meds. for the pump or much of anything else.

The 3rd pain doc I had contact with tried to get me off the pump completly by putting me on the Fenanyl patch. I had a bad reaction to the first one I tried...so much for that idea! Please cross your fingers that Wed. goes well!

Bob, I am so glad you are doing better! Do you get out much? I am unable to get out much at this point. Hopefully, things will improve soon.

I lost a lot of wt. a few yesrs back and I think that was the reason the nurses had problems hitting the port in the correct spot.

Have a good evening and thanks for listening.

Bobbie

First of all, Hello Bob! I wrote to you on this thread 2 years ago before I got my pump put in and you shared your experiences with me. It's nice to see that you are still on here!

My overall pump experience has been great the past 2 years. I did have to change from Morphine to Dilaudid and now they've added a second med that's more of a numbing med. Other than being very patient with getting the dosage right things have gone well.

I do have a new issue that started last night and it prompted me to get online to try to find some info and no luck Yesterday I got out of my car and my stomach feels like the pump is pulling on a muscle or something. I thought maybe I just hit it on something but throughout the night it has gotten worse. When I stand up the gravity pulls so hard and it is so painful. now I can barely graze my skin and it hurts. I notice some sweling around the pump also. The best way I can describe the pain is pulling/pinching and also like when you've done 1,000 situps and your abs are sore. This happens even when I take a deep breath.

Has anyone heard of this? I emailed Medtronic to see if they have any ideas. Yes it is very painful but being that it is Sat. I don't want to page my dr. and have it be nothing. I'm not sure if the immediate clinic and/or ER will even know what to do. I wish there were more forums online so I could find someone who has had this happen because I don't know what to do!

Hi Jos33

I haven't seen any posts in this forum that relate to your current problem but I would like to pass along some thoughts on the issue.

Although my pump position has also changed over the three years I've had it, I haven't experienced any real soreness or swelling as you describe. If you really have a lot of pain and swelling, I do think it's important that you contact your pain management doctor soon. I agree that the ER personnel will probably not be familiar with the pump and will suggest contacting your pain doctor before they attempt any treatment.

I've had this problem myself in the ER. Anything strange going on the seems to relate to the pump is always treated as something they don't have experience with and won't directly treat without first contacting the pain physician. An intrathecal pain management pump is a specialized area that most ER people are unfamiliar with.

If you develop a fever and the swelling and pain becomes worse, I would not hesitate contacting your pain doctor ASAP as something is certainly going in the area where your pump is located. I don't think it has anything to do with the pump itself so long as it continues to control your chronic pain but there may be an infection developing in the area around the pump. It's certainly not a normal condition.

Please keep us informed of what's happening and the diagnosis by your doctor so that others will learn from your experience.

Aloha,
Bob

I forgot to mention that Medtronic will not respond to patient questions and they will always suggest contacting your physician. I can understand their policy on this as they can't really diagnose the cause of any reported problems and they would be out-of-line if they attempted to do so.

Bob

Thanks for your advice Bob and the Medtronic thing does make sense. I think was looking for someone to what was going on but I completely see why they couldn't involve themselves.

So I was in a lot of pain today and my stomach got so swollen around the pump area (you couldn't see the outline of the pump like you usually can). So I decided to go to the ER. You're right that they didn't know a lot about the pump but they were so helpful. She called my pain Dr. and he happened to be in the hospital at the time so that worked out great and he came to see me. By then my skin was red and he said my back looked swollen as well. The hooked me up to an IV with pain med, anti-inflammatory meds, and antibiotics. They also ran bloodwork. It looks like it got infected somehow. I'm now back home and have strong antibiotics to take and I'm going back to my pain Dr. in 2-3 days so he can look at it again and make sure it's working properly. He said I did the right thing coming in because if the infection gets too bad they would have to remove the pump all together. I couldn't imagine that!
So my advice to everyone- if something doesn't feel right don't ignore it. Always play it safe!
Thanks foor listening and for the advice as always! I'll keep you posted!

I APOLOGIZE FOR THIS RATHER LONG STORY, BUT I'VE JUST FOUND THIS THREAD AND AM WILLING TO SHARE MY EXPERIENCE WITH YOU:

I fractured my spine as a young teenager, which ruptured my S1-L5 disk, though several surgeons could not agree on a single corrective action due to my young age. Ultimately, my parents refused to experiment with "hard plastic" disks, which were just coming out then, and elected to leave it alone. At the time, I believe it was the right choice; even now, I must say I still agree, though I am 47 and have simply lived with back pain my entire life (since 13). It wasn't until my early thirties that I began to require some help to manage the pain, as it began to noticeably "interfere" with my life, as I'd always been an active and very physical person. I was still playing tackle football each weekend with some friends who were Navy Seals (and that my friend is NOT recommended :-), I spent time golfing, hiking, skiing, and so on, so I am fortunate to have had so many years of "manageable" pain. I refused to let my pain control my life, though I always paid a price each and every weekend. Unfortunately, I was a little too tough on my back, and ended up with the fracture growing into a full-on spondylolesthesis, with two blown discs that were now almost gone from the constant friction, and one bulging into the interior, impeding nerves in my spinal canal. Ultimately, I elected surgery, theorizing a somewhat younger and healthier man (just then 40) should do better with surgery than an older man. My orthopedic surgeon left the choice to me to either have it now, or have it later; but surgery WAS going to be a necessity I couldn't avoid forever. I had a multi-level fusion with rods and screws, multi-discectomy with cages to hold the ground up bone taken from my pelvis, a multi-laminectomy; the works, from S1-L3. MISTAKE NUMBER ONE: Choose a neurosurgeon for spinal surgery, not an orthopedic surgeon... period (yes, I know I'll catch it from the ortho's after posting this).

My pain management literally began the day of my surgery, as I ended up with what they now call "failed back surgery syndrome", apparently quite common with such agressive surgery. I "flunked" my physical therapy recovery as it was simply too much for me, and my therapist stopped it early reporting back that something was definitely wrong. Now, instead of weekend Lortab, I found myself on daily Oxycontin. After a full year of trying everything possible to stop taking meds and avoid pain management programs (meaning a lifetime of constant pain and medication to "try" to control it). I ended up in a pain management program anyway. Started out small, like most, with daily Percocet, one year later, Duragesic 25mcg plus the Percocet, etc. until I hit my theoretical limits with the oral meds, and my liver and kidneys were showing signs of the strain. Halfway thru my program I did try a spinal stimulator (still have it in), which works wonders for the nueropathic pain (sciatica, leg numbness and weakness, etc.), but it had no effect on my fusion site pain; a dull but constant throbbing ache, deep into my tailbone and creeping ever so slowly up my spine. My daily pain scale was always a four upon waking and a seven-eight by the end of the day, even with all of the meds. I even went thru a second spinal surgery to have the rods and screws removed because they were literally moving a micro-millimeter each time a cold front moved thru, or a low pressure wave, etc. I felt my back being pulled in two (theoretically impossible, but it was real enough for me). Having the hardware out helped, just not enough to eliminate my pain management program. However, my pain was now a three upon waking, and a six by the end of the day, certainly more tolerable. I slept very little, as I'd wake each night three or four times, having to take oral breakthru meds just to get thru the night. By now, I hated the fact I was being controlled by my pain and not the other way around; the monthly doctor visits, the refill scripts, the driving from pharmacy to pharmacy to try and fill my Duragesic script, etc. I even sought alternative treatment to be ABSOLUTELY CERTAIN that this was not "phantom" pain, something I found out your brain CAN do after being on opiates for a few years. I used Suboxone to see if I was somehow now an addict, not just physcially dependent, but mentally-emotionally dependent, something that was always eating at me as I'd seen so many commercials with "...my doctor started me on opiates, now I can't stop...". For me, I needed to be absolutely sure before I could come to terms with the fact I was going to be an honest to goodness chronic pain patient for the rest of my life. After less than a month on Suboxone, the pain was so bad I had to return to my oral meds and my patches to remain working. I was glad, however, to have tried the treatment, as it removed any doubts I may have had; I had no "craving" for medication, I simply was in terrible pain. Once I was certain this was for life, I could consider the intrathecal pump. I just couldn't bare the up's and down's of oral medication any longer (those of you taking oral meds know what I mean; pain until you can't stand it, oral breakthru medication, pain, medication, pain, medication, 24-7). I'd had it... my pain was controlling me, my meds were no longer controlling the pain; therefore, the pump simply M-U-S-T work. Yes, you can change docs to find someone who will keep elevating your opiates to ridiculous levels, but you will absolutely reach a limit some day. You can't avoid the inevitable (depending on your age, of course) if you are a chronic pain patient. After all, I had forty more years to consider.

My Medtronic pump was installed several months ago. I awoke from surgery expecting perfection, given my trial injections ultimately resulted in an absolute ZERO pain level for several hours. I was so anxious to eliminate the oral nightmare, I didn't take the time to learn about the "transition period". Sadly, I found myself still in agony, but this is something EVERYONE will go thru when you have the pump implant; after all, it is surgery. You should seriously prepare yourself for this so you are not blind-sided. I never really gave myself the time to go thru controlled withdrawal. MISTAKE NUMBER 99; don't do what I did; give it time and s-l-o-w-l-y work with your physician to transition from oral meds to the internal pump. Talk with them until you are satisfied you have a game plan; I didn't for whatever reason. Probably just didn't care any more, and was ready regardless of the "plan". Bottom line, I went thru several weeks of self-induced hell, but I just wanted it all to go away and for the pump to begin working. While I did manage to get thru it, it wasn't pretty. Having a pump installed REQUIRES many, many, adjustments to reach your optimal dosage. Gladly, I did finally reach my Nirvana; I actually have a life again and I couldn't be happier. I now awake in ZERO pain, use the companion handheld device to manage any breakthru pain with a little booster, and I return back to ZERO pain in minutes. It literally has changed my life. I'd never recognized how "foggy" my brain had become after what by then had been seven years of patches and oral medications. I am again in control of my own life; I am NOT being controlled by pain any longer. It's almost unbelieveable to me as I think back on the years I'd lost; years I'd have prefered to have spent with my wife and my children instead of simply work and bed, work and bed (and for me, it hasn't ever been a bed, it is a recliner in my den; sound familiar). If you're at the point where you are no longer in control of your pain, you're probably ready to consider the pump.

For those people, you must go thru a trial injection (for me it was two, one week apart). Honestly, the trial injection hurts like hell, but once the meds are in, if it provides you relief, any relief, you may very well be a good candidate. I achieved a 50% reduction on the first trial, and a 100% reduction on the second trial (very important tip; taper yourself off your breakthru pain meds if you can; the intention is to be in enough pain when you have the trial). If you do end up having the pump installed, be prepared to be a patient patient. Talk with your physician. Come up with a game plan. It takes time to wean off your oral medications, and it also takes time to complete the process of fine tuning. Because I forced their hand with my crazy "go cold turkey", just for the purpose of trying to hurry things along, I was able to get to ZERO pain much faster than probably anyone else (within four weeks), but improvement will ultimately come to you if the trial proves you were a good candidate. It may take a lot longer than you think, but again, be patient; it will come.

Now, my brain is crystal clear, my appetite has changed dramatically from sweet tooth to salads. I've lost 15-20% of my body mass (meaning body fat) and am still losing weight. I just feel incredible, other than the sleep deprivation I brought on myself (withdrawal = sleep deprivation). Yes, I still have pain, but I awake in zero pain, slowly reach my threshold 1/2 way thru the day, I use my controller to bolus push a breakthru doseage (something not everyone needs, but you should talk to your doc first before you have the implant), and then I go right back to zero within minutes. I now only wish I would have done this years earlier. Like many of you, every doctor I'd sought out for options each had their own method and opinion; serving only to confuse me. I've come to learn that ONLY YOU truly know your body, your own pain level, and your own tolerance for being a patient patient (I've never really been good at that part).

While I couldn't possibly predict how the pump will work for you, it has absolutely worked for me. I will caution you to CAREFULLY consider your current pain therapy results (are you constantly up and down like I was; are you sick and tired of being sick and tired; does your pain control you or are you controlling your pain). These are the most important things you simply must address and come to terms with, you must think very long and hard and be honest enough to consider that your pain may be "in your head" and not "in your back", not that I'm suggesting you try the Suboxone). Just be honest with yourself; do some soul searching; be absolutely certain you are committed to a life long pain management program. If you are on that path now, you'll probably have to one day decide; external meds (oral) or internal meds (pump). Eventually, most will find that they have become so tolerant to the opiates, that they require more and more potent medication just to try to stay within your base pain control range. I knew the end was coming for me, so I made my choice and I had the trial. Fortunately, my trial was successful, so I had the surgery. As I've said, I only now wish I would have done my soul searching much earlier.

Anyway, I wish all of you the very best as you seek answers to your questions and as you begin or are likely nearing the end of oral pain management (meaning that you're hitting your threshold, and you wonder if there are any more options). I would glady respond to any further questions about my pump or my pain management history, etc. DOING YOUR RESEARCH IS THE FIRST AND BEST THING YOU CAN DO FOR YOURSELF, SO YOUR ALREADY ON THE RIGHT TRACK AS YOU READ THESE THREADS. Just keep it up and work with your physician, maybe get a second opinion, but be aware you may actually get a 2nd opinion. Realize however, only you can decide what is best for you; and you can only do that if you are absolutely honest with yourself.

As someone who now understands that painfully long road of "where I've been and where I'm going", I sincerely wish you success as you seek to do the same.

Regards, Richard

Richard
As I read your post, I could not help but to relate what you said to what I have been through. I was almost in tears as I read your post. God bless and keep being strong. Mark

Thank you for your encouragement Mark; it means a great deal. I've learned it helps to accept the wisdom of those who have gone before me.

As for my tears, I've already shed all one man is alloted for in a lifetime, but I willingly admit my eyes still "get wet" when I hear from those who are only now starting out on what I know may be a long, and very dark road; and I know some times, we all wonder if we'll make it; some don't. I know personally what that moment of doubt can feel like and how close we can come to ending it all. It is for them, I pray.

Again, thank you; and as for me, I'm only just now happily looking forward and no longer wishing I could go back :-) I'm believing God that this is the moment I've longed for; to know that "it's finally over", if you know what I mean.

From you Mark, I will hold on to "...keep being strong...". Your words will always remind me that although the days ahead may not always be bright and sunny, I never again can allow myself to be controlled by "the rain".

Thank you so much for sharing your experience Richard. Although I am only 30 my pain started early like yours and we have very similiar experiences. You talking about the meds controlling your life really hit home. Thank god for the pain pumps. I may actually carry a pregnancy now and have a family of my own.

It's great that we can all come on here and share what we are going through. Family members are great but they don't truly understand what we are going through. Take care!

Hi Jos33,

I'm so glad to hear that you took our advice and followed up on your problem. It looks like it's now under control although that's a rare situation after the pump has been implanted for so long.

Let us know when everything is back to normal.

Bob

Hi Richard,

Please don't apologize for the length of your post. It was the most informative I've seen since I started this thread some time ago.

I just have one question regarding the Medtronic patient controlled bolus device. My pain doctor refuses to prescribe them because he says it takes up to 24 hours for the
"boost" effect to be noticed by the patient. You state that you notice the effect within minutes.

My own take on this issue is that I can see where it might take some hours (probably less than 24) for a small change in the pump dose to be effective as the increase medication must travel through the feeder tube, then to the spinal catheter and then circulated withing the spinal cord.

My doctor says if a patient notices a quick change in pain level after using the bolus device, it would be considered a placebo effect.

Obviously, you have a totally different experience with it and it makes me want to rethink what the doctor told me and what I accepted as a viable explanation.

When you get a chance, can you elaborate on your experience with the Medtronic patient controlled bolus device? (Medtronic has a name for it but I forget what they call it).

Aloha,
Bob