Severe chronic pain and Intrathecal pain pump

The doctor's won't go anywhere near it for fear of being sued. I'm fairly sure the administrators tell the doctor don't worry about them, we're in the business to, make money, not risk a lawsuit with these patients. Doctors have told me, they're keeping their heads low and just doing what their boss says for fear of being fired. The Oxycontin debacle is what us patients in these situations.

Reading these posts. I am so sorry so many have such awful experiences with this pump.
I have had CRPS foe 6 years and I suffer through the most extreme neuropathy you can imagine. Therefore I’ve have had the pain pump from Medronics implanted since 2022. Last year I got an SCS implanted for my pain as well. So I know what ya’ll have gone through. One red thread on here that I see is that some unfortunately get this pump implanted and later managed by inexperienced surgeons and doctors. The scarring and complications I read about here are all mostly due to crappy surgeons who don’t know what they are doing. I am
lucky to have had both my implants operated into me by one of the most experienced neurosurgeons in my state, maybe even the country.
This is why I say the same thing over and over again to anyone who asks me for any type of advice on intrathecal pumps: I always say the same thing: you need to find the most experienced neurosurgeon you can muster, and you must also make sure to have access to the absolute best possible pain management doctor team to manage your pump after it’s implanted. You need an expert doctor to decide which meds that might fit your condition best, and then you have to go through the titration of the chosen med. It can take a long time to find the right medicine and the appropriate dosage. All this takes a long time to get right. It took me 1 1/2 years of trial and error before finding my «sweet spot». and which meds fit
me. And luckily so far I have not had very many complications, apart from one major one; after about 1 1/2 year of having the pump the catheter fell out of my spine and consequently sent the medication right into my flesh in my lower back instead of into my spine. It took 6 months before my doc caught this error. It was far from ideal but I got the placement of the catheter redone properly and due to the fact that my neuro surgeon is amongst the very best in my state, things have been working well since that redo. But as some here say, when not managed well this pump may very kill you. Which is why I never recommend this pump to those living far from experienced neurosurgeons and professional pain management docs. It is important to stress that when done right these pumps can be life savers. Honestly I would not be able to function the way I do today without my pump w/dilaudid and clonedine. I just needed to let people know that these pumps can be highly effective..but again,
you really need to do a lot of research and importantly, you need an experienced care team around you to make this pump work properly. I would never allow a «newbie» surgeon attach this pump to anybody’s spine. The risk of permanent irreversible damage is always a factor when deciding whether to get this pump or not..and very rarely will the pump replace your other oral meds. I still need oral opioids in addition to the SCS stim and the pain pump; but together they work as layers to help the pain. In an ideal world all the different therapies I am on work in symphony with each other, and it’s all designed to keep my extreme and constant nerve pain at bay. If
you have questions or need advice I am happy to answer.

@butchered I’m so sorry this happened to you. So awful! What I don’t understand is how your surgeon and pain management doctor failed to identify that you are allergic to opoiods. Your docs should have found this out during the all important pump trial period. This is why one is required to have a successful trial before one gets the actual implant. One is definitely not supposed to get the actual pain pump implanted unless you have gone through this said trial; where I live getting the final implant would require that you had a very successful trial period. During this trial any such allergies would normally be discovered and any future use would be ruled out. It sounds crazy to me that you went through this very invasive and painful implant surgery without a proper trial. And getting the pump filled with hydromorphone, which is 9
times stronger than morphine, while knowing you have an allergy to it, is even more ludicrous. It sounds like medical malpractice to me..I’m just glad you are ok cause this pump requires you have access to the most experienced surgeons and care team. Without this in place this pump will likely do more harm than good..

@alexandercrps Thank you for your reply. The modern medical system is broken and many doctors are simply stupid. Prior to the pump I had had ablations, injections, patches, plus pills. I think the adverse reaction came as a result of the oh so many attempts to drug me without considering the repercussions. For me it was probably a form of sensory overload. that triggered my severe sensitivities. I am sensitive to almost everything. The city I live in is only hours away from Rochester MN, it has a Big 10 university that has a medical college (research and teaching) that wants to be ranked number one in U.S. News and World Reports list of best in every department known to man. They are arrogant and condescending so I moved on to the #2 rated clinic where people have names not numbers. After drugs etc. didn't work I requested the pump and it was eagerly given to me. No tests or trials prior to the implant which was an OP procedure. When I got home I knew something was wrong ultimately finding myself in ICU (you've read the story). I was a willing participant in this venture so I am partially to blame and in all fairness the surgeon who put the pump in visited me in the ICU twice, reassuring me that it was the drug that caused me to collapse and code. I believe he was truly contrite. Because of his honesty I have more respect for him than I could ever have for those at the #1 place. My stint in rehab was horrific at best and it was during COVID which made matters even more ugly...the local news media regularly aired PSA's saying, essentially, to call 911 if you were in distress. I did, numerous times, but the local EMT's labeled me a "drug seeker" and I was treated accordingly. When the pump finally emptied I was able to start low dose naltrexone (off label for pain but normally used for those addicted to opiates). I ended up going back to the #1 place looking for holistic treatment only to get a PCP who decided I "didn't qualify" for rehab and tried to send me to a nursing home, where you die. Well, I am stubborn, determined, pig-headed, and brilliant, did my own research, said "no" to the **** who tried to kill me, found a great PT, did my own rehab, and now, while I will never run a marathon, am up, thriving and living with tolerable pain. The **** at #1 essentially tried to kill me but I won. Being "retired" and over 50 I am unemployable but determined to return to life on my own terms. I have been through hell and back over and over again but these experiences only make me more determined to carry on for at least 20+ years. I wear a medical bracelet that says "no opiates" and believe that hate, if properly channeled, can be cathartic, that a person's mindset will conquer when the **** want to kill you. Because of my self education I scare the living daylights out of most providers and they actually listen. I have found my own set of champions who have earned my respect because they have learned to listen to me, yet some are still in the learning stage. I am an excellent educator. Again, thank you.

@butchered I’m am very
glad to hear you found your own ways to deal with the pain. Kudos to you! But! After reading your story, this sounds more and more like an actual medical malpractic case. I have NEVER heard of any patient just asking to get the pump and next you’re in surgery. That is absolutely insane and completely opposite of how it is supposed to work. Firstly, have NEVER heard of anyone getting a pump without a trial first. It’s the same with spinal cord stimulators, always a proper trial first. Secondly in most cases the pump is an absolute last resort treatment when every other treatment has failed. I have never heard of any patient just having it implanted and turned on like that right away. Normally you heal for a while before it is even turned on, also it would be on the absolute smallest dose/drip possible..a tenth of a water droplet is all you would get of medicine the first few months..so you must have met some really bad doctors and ifI were you I would sue their arses. Importantly, I am glad you are ok and doing better today. Good on you!

@alexandercrps Sounds like you've been through a lot and have gained a lot of insights. I, like many here, have been on a ten year pain journey. Pain was well managed up to 2021 when my SCS paddle shorted out. All my pain came flooding back, even with the meds I was on. So, in 2023 I had my trials of the pain pump. Both were done by injection. The first was done with morphine...no help, just a lot of vomiting about eight hours later. Two weeks later the second trial was done...hydromorphone dropped my pain from a seven down to about a two.
I have read of trials being done with externally mounted, temporary pumps which are worn for several days. I wish I could have had this type of trial. Instead this massive amount (4 mg) was shot into my spinal fluid. Unfortunately, when I received the permanent implant, they started very low(I haven't been able to find out how much). Here I am, three years later with exactly one day of relief. I just had my output raised to about 3.5 mg/24 hrs. with six boluses. I gave myself everything yesterday... no pain relief. Now, I had noticed that several days ago, the full dosage plus all boluses dropped my pain down to about a four.
Very odd and discouraging. I know that there are some here with pain pumps with a daily output of 6+ and 7+ mg/24 hours and get pain relief. I am afraid that my PM doc won't boost my output anymore. He said that higher concentrations can lead to granulomas on the catheter tip. All I know is that I am willing to go higher if I can get some pain relief and reclaim some quality of life. I will welcome any advice from my fellow pump users.

@heisenberg34 Hey and thanks for your reply and for sharing your experience. May I ask, do you have any secondary medication in your pump? Only having 1 med in there is often less effective than if you blend in a second one: I have a mix of clonedine and hydromorphone in my pump. I used to only have hydromorphone in there but once we added a strong concentrate of clonedine I felt better analgesic effects. Moreover, in my case the pump never managed to replace my need for oral meds. I still need orals in addition to the pump meds. I would never survive this hell with only the pump meds. One reason why your
doctor is weary of increasing the dose in the pump is because it carries with it
much risk. It is a much safer option to add orals on top rather than increasing the pump meds; doctors are dead scared of cranking the pump too high for good reasons; too much pump meds can easily kill you. But ask your doctor for some oral opioids for breakthrough pain. Also I’m sure they can increase the pump some to see if it works better. In comparison, last year my pain was so out of control that I got a spinal cord stimulator to aid with the pain.
In order for me to see a 6 on the pain scale I need all my 6 boluses and pump meds to work in symphony with all my orals and the scs stim. I think of them all as layers to mask the pain, and the more layers I have the better my pain is controlled. It sounds as if you experienced the exact opposite of that, when you lose one or more layer the pain will come back and hit you like a freight train. Crps pain especially will knock you down so hard it is hard to even get out of bed to go to the loo. If you have more questions feel free to dm me, I would be happy to discuss this further and even talk over the phone. Wishing you all the best, I know what you’re going through.

Howard Schubiner (sp?) M.D. has a podcast on pain reprocessing. His theory is that if properly addressed you can turn pain into "your friend" my paraphrase. While living with unbelievable pain, trying more and more modalities than imaginable, being treated like a drug seeker and generally minimized, marginalized and treated like a pariah I got my head together, got mad as hell at the sob's that just didn't want to understand and took matters into my own hands. I found podcasts on YouTube beneficial (Dr. Ramani on narcacsists- those who try to control you and your belief system, Rangan Chatterjee, British GP on every medical issue imaginable, Mel Robbins on living your life with bastards et al, Howard Schubiner, and some cute anesthesiologist on gaslighting -[he is always in surgical scrubs and he will pop up on links when you search the others] you will figure out who the snake oil salesmen are quickly). If you are smart enough to subscribe to this site, you are smart enough to educate yourself on how you either are or are not being treated. Learn, speak up and annoy your providers until they finally give in and help you to help yourself.

An update: Since I have not experienced any pain relief from my pain pump in three years, my PM increased its output yesterday by 20%. Went from 3.5 mg continuous to 4.2 mg continuous with six boluses of .42 mg. Driving home I had no real help with pain, so I gave myself a bolus. No help/ Just before dinner, I administered a second bolus. Then, as I started munching on chicken gravy and rice, I became nauseous and had to vomit like crazy. Went to bed. Woke up feeling better but no real pain relief. Than, as I sat up on the bad, the nauseous feeling returned. I tried to vomit, but I had nothing left. In about ten minutes, my stomach settled down. right foot is tingling like crazy. I was able to eat buttered toast, OJ, and coffee. No nauseous feeling. I was worried that I might have to go to the ER, but everything seems to have settled down. I think I have achieved a bit of pain relief, but still have the crazy tingling in right foot.
Question: Has anyone else experienced such nausea while on a pain pump with hydromorphone? I have had rare, isolated instances before but nothing like I had yesterday into today. I guess I will hold off on any more boluses.

@alexandercrps
Alex- May I ask what your daily dose of morphine was at the time it dislodged from the CSF in the intrathecal space. My doctor has always been honest with me and expressed her concern of a “pocket fill” when the pump port is missed and they warn that it could be fatal! So please let me know you survived.