Pain pump failure

@kaki068 Your story really touched my heart. No one should have to go through what you are. Even when I feel “alone”, my Lord is right there with me, feeling my pain and helping to get me through the tough times. Do you have a church or place of worship you could reach out to for help?
You sound like a good candidate for the pain pump. Make sure you have the trial first. My prayers are with you.

@laurenseavertson789 My doctors, have tried everything ! I am fused from C3 thru my sacrum. I was totally paralyzed from the neck down with MRSA in my spinal cord. Spent over 12 months in the hospitalized ( including rehab & a cervical fusion) I regained my ambulatory status, but i have to use a walker & i have intractable pain. & and a permanent suprapubic catheter, with many drug resistant UTI"s Now my pain has spread, to other areas in my spine. I am losing the ability to walk again. I am very disabled. I just want a level of pain, that i can handle At this point, oral meds don't help. There aren't any more choices for me. I want to remain as ambulatory, as i can. I am currently in so much pain, i cannot handle it. My situation is very complex. I was an RN for 40 years & have a degree in health care Administration. Ican barely get out of bed & need a caregiver, for help. My doctors, don't give me many options... guess i've tried them all Good luck to you

I am so sorry. Please read my post. I have taken very high levels of Dilaudid & other narcotics. it's my understanding, that with the pump, you only need smaller levels of the narcotic, to work. In the beginning, it does feel kind of drastic. But you should develop a tolerance, fairly fast. Maybe you should worry less &try to get your pain under control But you do need a good pain doctor. he can advise you & maybe get rid of your worries about over dose. I can't live with my levels of pain & my disabilities. I work non stop, trying to get some measure of relief & control of some of my disabilities ( which control my life, at this point) Lauren

This is an update to my post back in 2024 regarding my intrathecal pain pump . Since then my pain doc has done very little except to increase my pump output every three or four weeks and refill it every three months or so. I still have not experienced any pain relief after almost three years. I know there are other pain pump users who have a very high daily output of dilaudid(6 or 7+ mg/24 hours). I recently tried going up that high, but I did not feel well afterwards. I had to have it turned back down. Now I am sitting here, with still no pain relief and feeling afraid to use any of the six boluses. Not sure what my next step is. My PM doc seems to be totally out of any answers. So, who knows?

@heisenberg34 Have you tried other meds or adding other meds to your current Dilaudid? I have Dilaudid, Baclofen and Bupivacaine (similar to Lidocaine). There is also Prialt, which is more of a nerve agent made from a snail poison not an opiate. Check the potential side effects on it. If you have issues with gabapentin, you may not want to try it.

@jcoleary Thanks. How was it determined to add those extra meds to your pump? Do you know how much Dilaudid you are receiving?
I am pretty much at wits end. I have a PM doc who seems to have as be little interest in really going the extra mile to help me.
I wish you well in your journey.

My current dosage is 0.8995mg/day of Dilaudid; 89.95mcg/day of Baclofen; and 0.8995 Bupivocaine. I did not want Prialt because I have adverse reactions to gabapentin, Lyrica and Cymbalta, and Prialt sounded similar. It also has scary potential side effects, like psychosis. Dilaudid was always the best pain med for me so I asked for it. My prior and current pain docs are both fans of microdosing, less than 1mg of Dilaudid/day. My doc started me low and bumped it up 10% every week or so until I got relief, which I think was at about 0.79mg/day and I bumped it up once. In Dec, I was going thru a lot of pain, and my upped me to 1mg/day, his max. However, it was making me dizzy, especially if I gave myself a bolus, so I asked to drop back down to where I am now.

As to Bacolfen, I have a lot of back spasms so my doc added it, but I never thought Baclofen oral helped and don't think the small amount of Baclofen I get is doing anything for spasms. The Bupivacaine was added when I started having the pain last Fall. It may help some, hard to say.

I also ended up having a spinal cord stimulator implanted when my pump quit helping as much. I have a congenital defect in my spine, misshapen vertebrae, that cause my disks and facets to degenerate faster than normal. I developed severe stenosis at L2/3, which is adjacent to the top of my fusion, as well as SI joint issues, and I think the two just overwhelmed the pump. The SCS helps some, but what really has seemed to help the SI and L2/3 facet pain has been Placental Tissue Matrix injections. I have probably had 15 epidural and facet steroid injections and one in my SI joint. No help. The PTM injections have been helping.

So, I would ask your PM doc about PTM injections if he is not helping with a pain pump. Good luck to you and please let me know if you have any other questions.

@jcoleary Thanks for your reply. You’ve been through quite a bit. I wish my pump had given me some relief at that level. I was at 4.1 mg last week but it was making me nauseous. I had to have it turned down. I am back at the doctors office today to have it turned down again as I am still feeling borderline nauseous. That should bring me down to about 3.2 mg. I will see about adding something to the mix.

@heisenberg34 Good luck with that. I don't think that the Baclofen is helping my but I am on a very small dose. Since you are on a higher Dilaudid dose, you may get a higher Baclofen dose.

@thecoldcfart this is what I’m going through now, sometimes it seems like I’m reviving medication then sometimes I’m not.