@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.

@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.