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Severe chronic pain and Intrathecal pain pump
I’m 57 and I’ve been dealing with severe chronic thoracic and lumbar spinal pain for the past eight years. I’ve recently developed myelopathy and radiculopathy in both areas that is excruciating most of the time. I’ve been taking oxycodone-acetaminophen 10-325 for quite awhile. It’s been helpful but with my recent changes, I’m getting a lot of breakthrough pain. I want to talk to my doctor about an Intrathecal pain pump with Dilaudid to help be recover some semblance of my life. I can no longer stand but for only a few minutes, can’t walk across my house, I’m no longer able to drive or even leave my house. Because of my chronic, worsening spinal pain, I’ve become so depressed. Can anyone recommend a Mayo neurosurgeon who could help me? I think a pain pump might be the best option for me. All my doctors are in Jacksonville Mayo Clinic but I’m willing to try and go to Minneapolis if I need to.
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Hi and thanks for your question. First of all what happened to me is not considered a pocket fill. A
pocket fill is when the entire amount of medicine (2 ml or 4 ml depending on the size of pump) get injected right into your tissue and not into the tiny hole of the pump. I know I keep yapping about the same thing over and over again on here, which is you need a higly specialised and extremely experienced doctor to deal with these pumps. If not this pump can kill you. A pocket fill, which can be deadly, is probably the most know problem with these pumps. but it is not common at all. Moreover my incidence is not considered a pocket fill since I only got tiny amounts of medicine slowly pumped into my flesh, as opposed to getting the entire 20 ml injection all at once. This is not a common occurrence and it only happens when the physician misses the port and injects all the medication straight into your soft tissue. A pocket fill can be deadly, so always make sure that you have the most experienced docs filling, emptying, and programming your pump. What happened to me was that the pump sent my small 24 hour dose right into my flesh in my lower back. What I experience was the most extreme itch you can imagine in my lower back. And it was driving me crazy. I know now that both hydromorphone and morphine have side effects that can make you extremely itchy. And it is an itch coming from inside deep of your tissue and bone, it is not the skin that itches but rather the bone and the surrounding muscles was itching like crazy. I had this itch for 6 months and I kept complaining about it. But nobody made that
connection and I can tell you it was awful! And we finally identified the
issue when I was under the
fluoroscope for a lumbar steroid shot. He couldn’t see the catheter tip which meant that the catheter had fallen out. What my doc was more worried about in my case was how I didn’t go into withdrawals. But I also use oral opioids which prevented such withdrawals. I cannot remember what my dose
was at that time, it wasn’t very high but definitely high enough to be a deadly dose had there been a pocket fill. Again my case was not considered that since it was a catheter issue, I simply didn’t get the tiny amounts of meds into the right spot inside my spine. It wasn’t fun during those 6 months, I remember not feeling great but I am so used to always feeling crappy so I just went on with my life. The incessant itching though is a sure sign that something is wrong. I actually sometimes get the same extreme itch in my ankle and foot sometimes, and I believe this is a side effect of the dilaudid. The itching is a known side effect of intrathecally injected narcotics such as morphine and dilaudid.
My physician never uses morphine on his patients exactly because of
the extreme itching most people experience. So to sum up, a pocket fill is when all the meds are injected into your flesh because they miss the pump port. An experienced pump would never inject anything unless they are 100% sure that the syringe tube with your meds is safely connected to the pump’s tiny port. If you have an experienced doctor dealing with your pump you shouldn’t have to worry about pocket fills. Your main concern should be an optimal catheter placement, and that the said catheter is properly connected to the part of your spine where your pain stems from. Lastly there so many various aspects to these pumps. I wish we could start a zoom support group for people like us who wear implants such as pain pumps and spinal cord stims. I hope I managed to answer your question. Wishing you all the best.
@alexandercrps Quick corrections. I wrote earlier:
“ A pocket fill is when the entire amount of medicine (2 ml or 4 ml depending on the size of pump) get injected right into your tissue and not into the tiny hole of the pump.
I meant to say 20 or 40 ml pump, not 2 and 4 ml.
Sorry about the confusion
@alexandercrps Getting your pain down to a six seems like not much relief, unless you pain is between an 8-10 without all the boluses. I had to go back to my PM doc to get the pump reduced to about a 3.5. Getting nauseous last night was really upsetting. I only had some wonton soup and a couple of crackers. Better this morning, but have this very uncomfortable buzzing/tingling in my feet which I have not had before. Looks like I might have to get this pump removed. It hasn't done anything in three years. Boo-Hiss!
@bilt4pain I found these stata on internet on pocket fills:
“Pocket fills—where medication is mistakenly injected into surrounding tissue instead of the pump reservoir—occur in approximately 1 in 10,000 procedures. While rare, they are serious complications, with over 351 cases reported to Medtronic Inc. between 1996 and 2010. “
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1 Reaction@heisenberg34 I deal with pretty extreme pain, I have CRPS type 2 and it is relentless. It has taken everything I had and loved away from me. 6 years into this nightmare and for me a 6 is a lot better than a 9 which is would be without all
my implants and orals. The tingling you’re talking about sounds like nerve pain, I have that constantly in my left
leg. But I agree with you, a 6 is not very low. I even have an SCS and that together with pump and orals reduces my pain enough so I can at least walk on my foot now (I almost amputated my fot it in 2022) However when you deal with this extreme constant hellish levels of pain as do, every point down on that scale really matters. Also it is weird but when you deal with this level of pain you somehow get used to it. I am pretty much. never present for big events and celebrations etc as my central nervous system go into mayhem mode when life happens. Consequently I don’t have much of a life anymore, I am bedridden often and I rarely travel, not able to sit with my foot down strapped to a chair for veey long so flying is a no go. Lastly I am sorry the pump has been such a disappointment for you. I hope your doc can find ways to improve your quality of life. Wishing you well my friend. Stay strong albeit that is not easy these days with the current administration, it makes everything harder and my pain higher with so much stressful events and terrible news we are served at every hour..it sucks to be in the US right now. It sucks that I cannot leave my city for max 3-4 weeks at the time due to med and pump refills. So I am stuck here and it is not a good feeling. It is hard to feel good about anything these days..sorry for the rant. I hope this message finds you somewhat “well”.
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2 Reactions@alexandercrps If you have any meds left in your pump(which is typically the case), the doctor will place a catheter into the port. Then he will attach a syringe onto the tubing which is connected to the syringe. He will withdraw the remaining meds via the syringe. He will know immediately if he has missed the port if no medicine can be removed. His scanner tells him how much medicine is left in the pump's reservoir. So, a "pocket fill" is virtually impossible unless the person doing the procedure is not properly trained in the proper method.
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2 Reactions@alexandercrps
I was wondering what your daily dose is that went to soft tissue for 6 months? And how is that different from a pocket fill ?
@heisenberg34 Yes they use a syringe with a tiny tube that empties the pump for old meds. Typically they use ultrasound to locate the access port before they inject the meds. So I agree it is a rare event, but it does happen. The methods vary from doc to doc too which is why you need an expert doc to deal with your pump. Pocket fillls are rare but as stated below they do happen from time to time
@bilt4pain @bilt4pain Let me try to explain: a pocket fill is when ALL the medicine goes straight into your tissue - all at once. 20 ml worth of highly concentrated designed only for intrathecal use will likely OD you very quickly.
Mine was not a pocket fill (which is a human error btw). My pump dripps tiny amounts of medicine through the catheter with 6 preprogrammed boluses pr 24 hours. I don’t have the dosage in my head but is singel digit milliliters of medicine, a piece of a drop of water.
In my case the catheter tip fell out of my spine. My pump still kept on dripping, but now. it sent very tiny amounts of meds into my soft tissue (as opposed to a pocket fill, which will dum all the meds, i.e the full 20ml all at once into my muscles in my lower back. I only got the tiny drip that was programmed into my back, not the whole flask all at once. Did that clarify things? The way I noticed smth was off was the most awful itch I ever had (called the morphine itch) but I had no explanation for why this kept on happening. Without putting the pieces together I remember having terrible itching when I got a bolus. Back then I just put benadryl cream on the itcy area and just learned to lived with it, just as I have adjusted my life to living on painscale 6-7. I hope this clarifies things, also I don’t remember the exact dose I have or had but again, it is a tiny amount that gets in there. I have a 20 ml pump so I have 20 ml of meds. I refill my pump every 7-8 weeks which gives you an idea of the daily dose. I reckon I get somewhere in the range of 3,3 ml of pump meds distributed over a 24 period. I believe I was at a slightly lower dose back then as we were still titating up the clonedine. My best guess is that I got ca 3ml pump meds distributed over 24 hours via the catheter. It wasn’t fun and I basically had to redo the whole thing which is a new operation and all the pain and discomfort connected to that. So this pump can be very challenging in a number of ways and it is important that people do their research when considering this pump. I think the patient based info is much more reliable than the glossy doctor version. Those medical reps from Medtronics and other companies like them are pieces of work. I would not trust them as much as I would trust someone who has experienced having this pump themselves. However people with pumps are difficult to find, especially one that is willing to share. I am one of those so ask any question and I will do my best to answer.
@bilt4pain
A correction from previous post: When I talk about my dosage, I meant ca 0,3 ml pr 24 hour. Not 3 ml.
Sorry my brain is a bit fried and I am not having the best day. My apologies!
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