Intrathecal Pain Pump

@heisenberg34 and all... My goodness gracious! This is not good! Is there a pain doctor or pain clinic in your area? I didn't know a PCP was allowed to handle and oversee a pain pump with narcotics, etc... It's so very specialized, isn't it? He should be working with you to find the right combination of medications to use to help give you relief. Have you attempted to discuss a change in the pump medication? Perhaps mention Dilaudid replacing Morphine? Adding Baclofen if a muscle relaxant would help? It truly helped my son to have the combination. He also takes Robaxin orally, that gives additional relief from muscle seizing and cramping, immobilizing him. And, all of that is a special pharmaceutical mix handled by his pain surgeon and pharma nurse practitioner. As he worsens, they adjust the mix, increase the meds ratio, and add additional bolas enabling him to give himself an added boost if he had a serious flare. He's allowed 6 X daily now, I believe. But, it's time to add another. Also, he gets multiple procedures as needed - nerve blocks, trigger shots, botox injections, migraine injections, steroid shots for his severe erosive arthritis in his knees and hips, etc. I stay on top of this, keep things scheduled as needed and as allowed... have to keep the calendar and contact the pain clinic to get them to stay actively involved. So far, I'm able, but soon there will be a time I can't do this coordination or am gone... so we must line up his ongoing care!

I think Dilaudid was the first medication in my son's pump, since his nerve firings are constant and severe, it was decided morphine wasn't the right drug. Then they added Baclofen, which does help. The pain doc is constantly, now that we got his attention and got them to do their jobs!!!! That took my stepping in and clearly stating the problems my son was experiencing - I remember saying at one time a couple years ago, this is a pain clinic, yes? You are supposed to treat pain? To do your best to relieve a patient's agony? Well??? What do you suggest you do now to do that? This man can't wait 3 weeks for an appointment!!! and such. I am a strong advocate for my son, and myself. Leaned years ago I must speak to be heard, with research and what information I can gather as a layman to have reasonable conversations with medical folks. Courteous, but firm at times, assertive if need be. Not aggressive. But, very persistent. I will not stop until I am heard and the issues addressed...

Are you in a rural area with limited medical choices? If so, is there a medical facility nearby that can handle the pain pump well? It sounds like you might want to check out the area for a specialized pain physician to oversee this part of your care.

I hope you can find a good partner to get this pump doing it's job. I don't recall your pain causes but, perhaps a specialist in the area of your injury or illness causing pain is a better choice? I'm trying to think out of the box a bit... helps me find answers. Perhaps there are additional procedures or treatments that can add to the relief?

Wishing you well in this difficult journey... Elizabeth

@heisenberg34 Think you got it wrong. I didn't progress past the trial. I didn't go further, because 90 Percent of me pain is nerve related & nobody can tell me if the pump works primarily on nerves. Since most of my pain is nerve related, i have gotten fed up with it all. I have so much pain & i decided that i probably need a better pain doctor. The attitude around here, is that you need to toughen it up. No one believes that there is such a thing as Arachnoiditis. Or if there is, they don't want to deal with it. I have tried many things, but have gotten such a rotten response, it all very depressing. I have gotten fed up with it all. I am tired of lousy attitudes of doctors. I do not go around and beg for pills. But i would like the option of trying morphine pills or a fentanyl pain patch. They may offer me more , but it's the same thing. I know that Morphine works, but they won't give it to me outside the hospital. If i ask for morphine in the hospital, they call me an addict. I have dealt with the ridiculous and archaic attitudes of the doctors. Morphine & fentynl work, but no one willing to give either drug to me

@laurenseavertson789 Excuse me, i meant Dilaudid. Dilaudid works but have been told that they can't prescribe it. Very bad attitudes about narcotics around here. Ive known what works, but been denied it due to the attitudes here in the Phoenix area

@sbb4512 I have fibromyalgia, sjogrens, RA, OA, Lupus, CMT with 8 surgeries, degenerative spinal disc disease on and on. I’ve had over 25 surgeries with knee surgery coming up.
I’ve been unable to find a doctor willing to address my chronic pain. With the “Opioid Crisis” being center stage, many chronic pain sufferers are left without treatment. Maybe the state of Oregon has tougher laws but no one will discuss any pain meds with me. There is a highly regarded surgical rheumatologist/professor at our large teaching hospital in Portland, Oregon Health Science University or OHSU which is 1 1/2 hours away from where we live. He is willing to do the surgery to implant the pump but wants me to have a provider nearby to refill the pump and take care of any problems. No one will do that. I have been taking Tramadol for 35 years but I don’t think that helps anymore. I’ve tried epidural injections in my low back and it worked for 2 weeks. It would’ve been better had I not felt so great only to have my back pain come back.
I guess I’m asking what you did to have a doctor listen to you. I’m tired of lying down with my joints and muscles feeling like they are on fire.

What medicine is in your pump? Maybe you need to up your dose or change meds. I have a pump with a combination of Dilaudid, Baclofen and Bupivacaine and it helps some, at least to where I can tolerate the pain when it gets bad. Mine is programmed so I can give myself up to four boluses a day spaced at least three hours apart. I prefer to be able to give myself extra rather than have the pump set to up the dose at certain times of day when my pain tends to go up. You cant do both.

As to your doc, maybe you need to "get in his face" and demand he try something new. If you tries to drop you for doing it, tell him you will file a complaint against him with the AMA and state medical licensing authority for leaving you with no doctor to manage your pump, which would be a violation of his oath.

Also, I did a quick Google for whether there is a list of doctors who manage intrathecal pumps and got this:

Doctors who manage intrathecal pumps are typically Interventional Pain Specialists or Neurologists. Because these devices require precise surgical implantation and ongoing medication refills, pump management is almost exclusively handled by specialized centers rather than a single, centralized registry. You can find qualified specialists using these provider directories: Medtronic Physician Finder: Use the ⁠Medtronic Severe Spasticity Specialist Locator or the ⁠Medtronic Pain Pump Locator to search for physicians who implant and manage targeted drug delivery systems. American Board of Pain Medicine: Verify board-certified experts near you using the ⁠American Board of Pain Medicine Directory. Local Hospital Networks: Major university hospitals and comprehensive spine centers (like the Johns Hopkins Blaustein Pain Treatment Center or regional hospital systems) have dedicated teams for this exact therapy.

I can't imagine why any doctor would hesitate putting Morphine or dilaudid in a pain pump. The amount of drug put into the intrathecal space is extremely small, usually measured in milligrams(1/1000 of gram). Not enough to become addicted. Also, the drug does not pass the blood brain barrier, staying with in the space around the spinal cord. Perhaps these doctors are not that well informed about intrathecal pain pumps.

I have a pain pump (Medtronic) that dispenses dilaudid. I hae had it 4 years, no issues. I have severe nocturnal hypoxia where my oxygen goes down in the 80 and even 70s! My sleep doctor thinks it is from the dilaudid, but my pain doctor says no. Any thoughts?? I also hae high C02 at night

@patz How are your O2 and co2 measured while you are asleep?

@heisenberg34 I had a sleep study which measured O2 and then they took arterial blood from my wrist in the morning to measure C02

@laurenseavertson789
I too, have Adhesive Arachnoiditis. After 20 years of continuous treatment with opioids and a Medtronic Pain Pump, in 2016 during the CDC great purge I was given 30 days to manage the withdrawal. Needless to say that was a horrible experience. I spent the past 10 years where you are now. I spent 5 days in the Barrow Institute in Phoenix and was finally get access to effective pain management. While in the hospital my diagnosis’s were confirmed and with no cures available, I had asked for and received a Palliative Care diagnosis. This is close to the quality of care I experienced from 1995-2016 without the arbitrary government imposed limits and where we are now. There is much confusion by each state with regard to the definition of Palliative Care, but most every state has passed legislation establishing the right to care for those of us with incurable conditions that have intractable pain as one of the components. It took me 10 years and numerous attempts in multiple locations and finally I have some stability in my life. It is the only viable option available to us. Take care
Darrell