Intrathecal Pain Pump

Hi Lynn. You can see my arachnoiditis on MRI. It causes nerves to get
bunched together and then those nerves cannot conduct and do what they need
to do. I take Indomethacin for the arachnoiditis pain and it helps some. I
weaned my pump slowly and just had to deal with the pain. Unfortunately
arachnoiditis cannot be healed. My goal was to control the arachnoiditis
and for it to not keep advancing. Arachnoiditis can get to the point where
someone can require a wheelchair. I hope you don't have it, cause it is
very painful.
Best wishes to you.
Carolyn

Thanks Carolyn. I'm researching for my Mom. She has had a pain pump for 2-3 years now and is still in 7/8 pain. I'm just trying to figure out what may be going on so wanted to know more about this condition since I've seen a few comments of patients having it. So sorry you have this complication and thanks so much for sharing your experience.

@lynnsaunders Not sure is this is relevant to your mom's pain, but I had a pain pump implanted almost three years ago. So far I have not gotten any pain relief, except for one day about three months ago. I must have been started on a very low dosage of dilaudid because I was having the pump output increased for almost a year and a half. Since I was not getting any relief, I started having the output decreased with the thought of having it removed. Then I checked in with the doctor who did my trial. Apparently, He gave me quite a high dose in the trial by injection. It wasn't until I discovered how to check my pump stats using the pump remote that I saw that I was still at a relatively low output. So, I have been having the dosage increased for the last year. At just a ten percent increase every three or four weeks, it takes quite a while to get to a therapeutic dosage. See if you can find out your mom's current dosage. My trial shot 4 mg of dilaudid into the intrathecal space. I am currently sitting at about 2.8 mg/24 hours. BTW, My pump is a Medtronic unit. Good luck.

I'm throwing this out there for your consideration because I am becoming desparate. I thought that a pain pump would be the answer to my lower back/buttock pain. The trial went great, dropping my pain from a 7 to a 2. It was an injection of hydromorphone. I had the permanent implant in 2023. Since then I have had the pump increased to the point where I am currently at 3.1 mg?24hrs with six boluses. I has just one day about three months ago when all my pain disappeared. It returned the next day. It would seem that a few things should be evident. With an excellent trial, the hydromorphone is the right drug. The fact that I had one day of complete pain relief indicates that the drug is, at least that one time, reaching the intrathecal space. I had the pump checked about two months ago. Supposedly, everything is okay. Not sure if the doc was able to check the catheter tip for granuloma. Am I missing something here? I am expressing my frustration here because my pain doc who manages my pump isn't interested in looking deeper for possible answers. I am left to my own devices to search out some possible answers. Please forgive me if I am rambling on, but I feel so discouraged. I know that some of you are at a higher dosage than I am. I am hoping that my doc will be willing to "pump me up" to a higher level. If not, I may have to look elsewhere although it's slim pickings here.
Thank you for listening to my rants.

Hi there,

My husband has a compression fracture in his T12 from metastasized prostate cancer. He had a vertebroplasty in October. It failed. He then had a CT injection in November. It failed. He just had a thoracolumbar medial branch nerve block -- failed. We're really depressed.

Now we're looking to get the intrathecal pump. Taking huge doses of oxy simply sucks.

He has a spinal cord stimulator and a sacral nerve implant. There are a lot of risks involved with this implant, but at this point, I feel that we have nothing to lose. Your comments have been great. If there's anything else you'd like to add, we're game.

p.s. My husband's weight has sharply dropped. He was at 240 and now he's under 180. He feels 100% better without the extra weight.

@billcarlsonfilms Has the SCS helped at all? Mine worked well for about two and a half years. What would you say your husband's average pain level on a score of 1-10? I had a pain pump implanted three years ago after a successful trial. It's been a frustrating journey. So far I have had exactly ONE DAY of good relief since then. The pump's output has been increased to a high level, but still no help. Crazy, right? Nothing seems to make sense. If there are no other options left, then I would definitely get a trial set up. That will give you a good idea if the pump will help. I wish you well.

Hi there,

Thank you for your kindness and honesty. Bill's Spinal Cord Stimulator has helped for his stenosis. He had the Medtronic stim put in around 2014 -- this was after the anterior/posterior fusion at the L4/L5 he had in 2011. It's been very helpful.

This new pain at the T11/T12 is caused by a compression fracture. His cancer likely ate away the vertebrae.
The prostate cancer was diagnosed in 2019, but we know that it could have been avoided and detected early. All the red flags were there, but we didn't know what the red flags even were. All of Bill's doctors failed in their prostate exams. In many cases, they didn't even do a prostate exam.

@billcarlsonfilms I was told by a reputable neurosurgeon to get a pain pump because my pain specialist has tried 10 minimally evasive procedures, last being the spinal stimulator and that did not work. I had my hopes up. I asked him about the pain pump and he is against doing them. He said he use to do them but they cause more problems than giving me a pain killer orally. I trust his judgement. He has a 4.9 rating at the University Pain Center at Rush in Chicago.
I has a spinal fusion on L5-S1 that was a nightmare and a laminectomy at L3 that caused me to go to inpatient rehab to be able to walk again. Now the pain meds are not helping as much. I live alone and this will be a problem. I am pretty independent. I was planning on downsizing my home to a condo, but have 3 floors of furniture and not many people to help me. I take antidepressants because this has caused depression which I am told is not unusual. If I could lose weight, my GP said it would probably help my back. I cannot walk far or exercise too much. He put me on Wegovy which made me so sick that I stopped it. Back pain sucks. Reading these stories shows me that we are all in the same boat.

For all those considering a pain pump... at this point in time I don't know what to tell you. After almost three years, mine has given me exactly ONE DAY of total pain relief. Other than that, I believe that I may have had SOME relief after giving myself five or six boluses during the past two or three weeks. Would I have the surgery again. I'm just not sure. My trial went great, dropping my pain down to about a two. But, not much since. I have heard others mentioning good pain relief, and others not getting any relief and deciding to get their pump removed. It is, indeed, a very difficult decision. I pray that you all have wisdom in making yours.

@heisenberg34 I have a trial set up for the pain pump. I have severe Degenerative disc disease & I'm fused from C3 thru my sacrum. I was in a wheelchair, for 6 years. I had this fusion, to get me ambulatory. I also now have severe adhesive Arachnoiditis. I have plenty of Oxy 10 mg, but it's not that affective. With all my hardware, it's very difficult to do much of anything. I also need a new shoulder & have torn rotator cuff. I have worked out a great deal, since my 20's I have read so many reviews of success of pain pumps. I'm out of options. I am a young senior, with minimal help. I cannot even get my shoes on. My Back, has ruined my life... I was completely paralyzed from MRSA in my spinal cord. Trying not to get too anxious about the success of the pump. I will be using oral Oxy, even with my pump. It's been a very difficult journey. Very little support from the outside world I also have a supra pubic catheter, from the paralysis. It's a a depressing journey. I am glad you're there, for support. it's very lonely, when i can't go out, or function normally. getting a good pain specialist is difficult Wish you well Support is so helpful. I get many drug resistant UTI's & need IV's There is constant anxiety & constant problems. It's very easy to get discouraged. Wish you well and try not to get discouraged Lauren