I have a Pain pump with Morphine, I'm still in so much Pain

Hey Michael- I just lost my entire written response back to you cause I got a call and it didn’t save. So I’ll(try to) be brief. First off, I only got the pump because all the docs drank the micro dosing kool aid. It’s a total sham. Of course 275 mcg. After 7 weeks dry knocked my pain out of the ballpark. And they know from my history I would acclimate to my dosage very quickly. But I found myself begging for an increase at every monthly refill. It took 18 months and a visit to a colleague to surgically check the integrity of my catheter and then he tripled my dosage and that made the world a better place to live. So much for “micro dosing”. From then on, she trusted me to inform her anytime I needed an increase, I got it. She’s the doc that switched me to fentanyl (without the ordeal you went through) because dilaudid was not yet approved for pumps. When I moved here my doctor informed me at the first refill that he is an interventional pain management specialist that doesn’t prescribe any medication at all. And he had his own practice, but shut it down to work at a big PM clinic. That’s run like a paramilitary organization. I’ve gotten two 15% increases in 2 years. I have no idea what kind of pushback I’ll get with my med change request, but I’m 99 44/100’s % certain I will get resistance. My health has significantly diminished since I moved here. I’m currently in divorce proceedings because I can’t live like this anymore. And she no longer remembers the level of pain and suffering I endure on a daily basis. I can only hope that wherever I eventually land has better doctors and healthcare in general.
My current diagnosis is:
Failed Laminectomy Syndrome
Failed back surgery syndrome in both my lumbar and thoracic spine.
RSD that’s now bundled into CRPS.
Severe left body nerve damage.
Total hip replacement.
Waiting on a date for a total knee replacement.
Anxiety and depression
And lastly, severe insomnia.

I have so much more to tell but I just can’t type anymore on this phone.

I did want to ask what brought to the world of pain management? And how long have you been here? Gotta go, my right wrist is screaming. God bless you brother. This would be so much easier if we could just talk.

I had uncontrollable pain when I had one of my surgeries and they didn’t want to give me more opioid after I called my doctor from my bed and use four letter words to tell him my pain wasn’t being controlled. So the head nurse was called and she prescribed a dose or two a Valium and it entirely brought the pain under control.

@alexandercrps Thank you for including so much helpful information in your post. I’m desperately trying to get a pain pump implanted and I have so many questions. I have an appointment soon with my pain medicine doctor and I really want to be prepared with all of my questions for him. Are there things you would recommend I be sure to ask during this appointment? I feel like my pain has become so severe without medication. I’m terrified of going through a lengthy trial to get adequate pain relief. Seriously… I would rather not exist than go through the pain I experience without pain medication. I recently had a morning that scared my husband so badly because I was convulsing and hyperventilating and couldn’t speak to him. (It was my pain medicine refill day and the pharmacy was backed up so it was taking them longer to refill my medication.) I know I have to try something different if I want to have some semblance of a decent life. Sorry to ramble… any help you can provide would be greatly appreciated.

Ask if he will only do microdosing, which limits Dilaudid in the pump to 1.0mg/day. Other opiates have different max amounts, but the bottom line is that it may not be enough. Ask him about other drugs that can be mixed in like Baclofen, a muscle relaxer which I have found does not help. Also, they can add Bupivacaine, a local anesthetic similar to Lidocaine. Also, be sure to read up on Prialt, a nerve agent kind of like Gabapentin that is made from snail venom. Docs like to use it but it can have very serious side effects like delirium. I cannot take the nerve agents (Gabapentin, Lyrica and Cymbalta) due to their side effects on me so I refused Prialt when my doc wanted to use it. My trial was just and injection into the CSF. It helped, so I was a pain pump candidate within a day. I have the 40ml pump reservoir vs the 20ml. The 40 is nice since I am at 0.9mg Dilaudid/day and my doc is a fan of microdosing. I only have to refill every 4-5 months. If I was on higher doses, it would go faster. The drawback is that I feel it and it sticks out of my stomach some. I am thin, 5'11" 175lbs. Also, there are two ways to set the pump: (1) you can set it so that it automatically ups your dose at certain times of day when your pain usually is at it worst, and drops lower when pain is lower, like when you sleep. The drawback is that you cannot give yourself an extra dose (bolus) when you need it. (2) You get a remote control that allows you to give yourself a bolus when you need it, usually set at 10% of your daily dose. This is the one I have and recommend. At first, my doc only gave me two bolues in a 24 hr period. That was not enough, so they upped it to three. I would push for three boluses. You have to wait at least three hours between boluses. The drawback to this way is that you have to carry the remote around with you, which is a cellphone plus a device you place over the pump that talks to the pump and Bluetooths to the remote, so that is a bit bulky.

I am happy to answer any questions.

@kaki068 I am not sure if I sent my reply to you or just the general post so I am sending it again.

Ask if he will only do microdosing, which limits Dilaudid in the pump to 1.0mg/day. Other opiates have different max amounts, but the bottom line is that it may not be enough. Ask him about other drugs that can be mixed in like Baclofen, a muscle relaxer which I have found does not help. Also, they can add Bupivacaine, a local anesthetic similar to Lidocaine. Also, be sure to read up on Prialt, a nerve agent kind of like Gabapentin that is made from snail venom. Docs like to use it but it can have very serious side effects like delirium. I cannot take the nerve agents (Gabapentin, Lyrica and Cymbalta) due to their side effects on me so I refused Prialt when my doc wanted to use it. My trial was just and injection into the CSF. It helped, so I was a pain pump candidate within a day. I have the 40ml pump reservoir vs the 20ml. The 40 is nice since I am at 0.9mg Dilaudid/day and my doc is a fan of microdosing. I only have to refill every 4-5 months. If I was on higher doses, it would go faster. The drawback is that I feel it and it sticks out of my stomach some. I am thin, 5'11" 175lbs. Also, there are two ways to set the pump: (1) you can set it so that it automatically ups your dose at certain times of day when your pain usually is at it worst, and drops lower when pain is lower, like when you sleep. The drawback is that you cannot give yourself an extra dose (bolus) when you need it. (2) You get a remote control that allows you to give yourself a bolus when you need it, usually set at 10% of your daily dose. This is the one I have and recommend. At first, my doc only gave me two bolues in a 24 hr period. That was not enough, so they upped it to three. I would push for three boluses. You have to wait at least three hours between boluses. The drawback to this way is that you have to carry the remote around with you, which is a cellphone plus a device you place over the pump that talks to the pump and Bluetooths to the remote, so that is a bit bulky.

I am happy to answer any questions.

@jcoleary Thank you so much for your reply! This is very helpful information. I’m making my list of things to discuss with my doctor. Thanks, again!

@kaki068 My pleasure. Anytime.

@kaki068 @ jcoleary There is a lot of very valuable info from the previous poster. It is all accurate and in my case too the doctor introduced the idea of filling my pump with Prialt, ie the snail poison, as an alternative to opioids, but it was a big fat no thank you for me. Maybe it works for some
but I would not risk it myself. However, it is super important to have two medications mixed together in your pump in order for the pump to work effectively. Now, everyone is different, so it is hard to give any general advice on this topic. Some people need their pain to be completely numbed out and for those they typically fill the pump with baclofen, a very strong muscle relaxer. But if you suffer from CRPS/RSD levels of pain, which borders on torture levels of pain, you would likely need a mix of hydromorphone and bupivacaine, or as in my case a mix of clonedine and hydromorphone. I’ve found that clonedine is a great second agent in my pump as it helps my crps nerve pain fairly well. Having said all that, my main piece of advice for everyone who considers getting an intrathecal pain pump: make sure you have access to and can get operated by the most experienced neuro surgeon you can find. You do not want an inexperienced pain management doc or an incompetent neuro surgeon placing that pump and the catheter into your body. I cannot stress enough how invasive and how painful and potentially dangerous this operation can be. I went through a lot of trauma before we got the pump sorted out properly. It took me almost 2 years of trial and error, which included a change of pain management team and a complete redo operation of the catheter placement before I got any relief from it. It took a lot of trial and error to get me to a point where this implant provided me with any real analgesic effects. This technology is finicky and not every surgeon has the “Fingerspitzengefühl” it takes to get done right. So my advice is you really need to make sure you have access to a team of pain management professionals who can work alongside you to optimize the effects of this pump. It is not easy and it takes time to get it right. This pump is not for everyone, and you need to have access to an expert doctors who know what they are doing.
In my case (I suffer from a severe case of crps type 2 in my left foot) I still need oral meds for pain, and I also have an SCS implanted for the said pain, which is relentless. And as the other poster here said, you have to decide if you want the 20 ml or 40 ml size pump. Since I need to see my pain management doc every month for med renewal anyway, so I opted for the 20 ml pump. The 40 ml is a a pretty big chunk of metal to get inside your body, so it is worth considering all these aspects. My two cents is this: this pump is not for everyone, and it certainly is not a miracle cure that will take all your pain away. There are also a wide number of risks to consider before opting for this pump. When it is done right and managed properly this pump can be a wonderful addition to your arsenal again pain. But it can also easily become an additional liability for you, especially if you’re under the care of inexperienced doctors.
This tech will only be effective if it is implanted by the absolute best and most experienced neuro surgeon you can find. In my state most pump and SCS operations are ideally performed by Dr Donald Atkins, who is extremely experienced with placing pumps and SCS stimulators. An inexperienced surgeon could do some serious damage so unless you have access to the best surgeons I would not even consider this pump as an alternative. It is an invasive and painful operation to go through and you want to make sure your surgeon get it right the first time. I wish you all the best and I hope you find the help you need. We are
here for you if you have other questions.

@heisenberg34 I'm so happy for you and I hope mine goes as well as yours did, I've never been on Hydromorphone very long because they changed the laws in the State I live, pharmacies would not fill my Dilaudid because they said that need to have an extended release and they don't make one so I had to go to morphine instant release and extended release and neither one did anything it was like I was eating a piece of candy did nothing, like when I have my appendix out they gave me a gram of morphine and it did nothing and then they gave me a gram of fentanyl and it did nothing so then they gave me a gram of hydromorphone and it knocked the pain out like crazy, I was also on fentanyl patches for a while until they leave and caused big problems where I ended up in the hospital and it was a new set of doctors and I told him my regular doctor said you can't just take them off it could kill you so he took them right off and said we will give you something different and it should work for you and it did but not to the degree I need it so I'm very hopeful that this other more phone is going to knock out my pain like it did yours thank you for sharing I appreciate it so much Michael

@alexandercrps
Hi, when I told my doctor that it wasn't working & I meant it wasn't giving me relief & he thought that the pain pump wasn't working so I had to endure 7 weeks while he checked the implant and a CT scan and everything was working fine, I asked them to please change the medication but they didn't, so I Then was maxed out at 14.6mgs and they said they would have to go back down until I was at 0.1mgs so I started going down 30% a week and now I'm at 0.404 mgs, I have about 6 more treatments to to get to 0.1 mgs, and then said they would remove the morphine and flush out the line with Saline, and I've been thinking all along when they gave me a morphine refill why couldn't they have removed it then and flushed the lines out and gave me the new drug hydromorphone, I believe they could of it just didn't want to, meanwhile I've been suffering feel like I'm crippled but I'm close and I can't wait until I get the new hydromorphone because I'm sure it will work. I'll certainly whether one now how it goes thank you Michael