Severe chronic pain and Intrathecal pain pump

@laurenseavertson789 Thanks, Lauren. Chronic pain is absolutely exhausting. And to have someone I thought I could trust and count on not willing to help me is devastating. My husband is beyond angry. I’m furious. I live in Florida and both my and my husband’s families live here in Florida, too. We had planned to move back home when my husband retires in two years to be near family and my doctors at Mayo. Now I don’t know what we’ll do. Guess we have to change all of our plans.

@jcoleary I am fused C3 thru my sacrum. Think it was done thru my sacrum, due to severe pain in SI joint. I have had so many treatments etc I can't afford anything, not covered by insurance, anymore. Guess there are a few advantages to all the hardware i have? At this point, i am trying to live with limitations that i have. I had the trial, for my pain pump. While it's helping my spine, it's doing nothing for my severe leg, pain, arm & shoulder pain etc.I tried going off my oral pain pills, and i couldn't get out of bed this am. I am in agony, everywhere else. I am having to resume my oral OXY & i don't really see any benefit to the trial. I am now in much more pain. I have more pain than before. I can take my oral meds, & get the pump, but i can't deal with the horrific constipation, that comes with all these narcotics. I feel better with just the oxycontin. Guess we have to pick our poison. No pain doc, is offering me anything more at this point. I was afraid this might happen I need to be able to move a little. I can always try another doctor, but they don't seem to have much to offer me & frankly. i've wasted way to many years, in pursuit of a cure etc

@laura1970 I have Arachnoiditis & it is far worse than regular back pain, leg pain etc. It is horrendous. I wouldn't recommend anything that might contribute to this disorder. it is hell on earth My trial of the pump, is doing nothing for me. think it's because of the severe Arachnoiditis, that i have (plus severe arthritis everywhere, especially between all my hardware. Sorry, i can't be more positive, but i've lost 25 plus years to all this, & i am old, depressed & broke

@laurenseavertson789 I understand wasted years searching for a cure and the constipation from opiates. I went thru those 15 back surgeries looking for a cure and was on large doses of opiates for years, so I get what you are saying. I never found Oxycontin helpful (I thought they took it off the market). I was on 40mg 2X/day plus a large amount of Dilaudid on top of that. The Dilaudid by itself gave me just as much relief.

It would be really helpful to know whether they fused your SI joint. The SI joint is where the Sacrum connects to the pelvis, so even though your sacrum is fused, your SI joint may not be. Do you have your radiology reports from a post last fusion MRI or CT? Those will mention fused areas if in the view field of that imaging.

No insurance, that is horrible. What about Medicare/Medicaid? I have found that Medicare covers much of my medical needs.

@laurenseavertson789

I understand completely. I wish i had never had the pump placed. Doctors push it too hard, imo

@kaki068 I am truly sorry that you have been treated so poorly. Those of us in severe pain should never be marginalized. Sometimes I wish I could hurl all my pain onto these doctors for a few days. Let's see how they deal with it. Maybe not so cocky and self-serving. I wish you well.

@jcoleary I love Dilaudid, but it's only IV, isn't it? I am on 10 mg of Oxy Qid ( 40 mg a day) But it does litlle for me too. I think the opioid crisis has changed everything (on what they will allow) I was told that i am on the max of OXY, now & nothing else. The docs here are running scared & don't care if you're still in pain. I've found this out the hard way. My trial for the pump, has helped my spine, a little. But it does nothing for my groin, leg, pain, arm pain, shoulder & neck pain. I know i have a torn rotator cuff & bone on bone arthritis on my right shoulder. I am reluctant to get this, in case it doesn't go well. Pus if i were to have this surgery, it involves an extensive & very painful rehab. Plus, i would still be dealing with all the aforementioned areas of pain. I do have Medicare & Medicaid. But still these limitations on pain meds (dosage) have wasted so many years on severe, incapacitating pain. It's pretty much all been a waste. The extensive fusion helped, but this caused a severe case of Arachnoiditis & there is very little things for this. I wish doctors had more knowledge about this...many don't seem too. I don't think i want the permanent spinal cord implant. it causes intractable constipation.

Actually, Dilaudid is available in oral for, in 2mg increments. I would ask your pain doc if you can switch. In case you don't know, doses are based on MME, morphine milligram equivalent, which is why different meds come in different doses. How many milligrams of morphine is equivalent to one milligram of the opiate or one milligram of the opiate equals how many milligrams of morphine. Oxycodone has an MME of 1.5, meaning 1.0mg of oxycodone equals 1.5mg of morphine. So, a 10mg pill of oxycodone is equivalent to 15mg of morphine. Dilaudid has and MME of 4, so 1.0mg of Dilaudid equals 4mg of morphine. I say all that so you know how much to ask for. If you were on 40mg of oxycodone per day, that is equivalent of 60mg of morphine. Since Dilaudid is a 4 MME, 15mg per day of it would be 7.5 tablets per day. Maybe you can get your doc to give you 8 tablets per day.

All that, my pain doc says that taking a bunch or oral opiates will adversely affect the efficacy of the pump, so it will not help as much. Also, I did not believe this until I got off my massive doses of oral opiates (I was on significantly more than you), but the opiates are making your pain worse when they wear off. When I got my pump, my pain doc wanted me to taper down 50% on my oral meds before he would put any med in my pump. I was scared to death about the pain, but it turned out not to be as bad as I thought because the opiates were making it worse, and the more opiate you take, the worse the pain when it wears off.

You have a lot going on, and, as I am sure you know, there is no single fix all of them.; you need a multiprong attack. So, here are my thoughts:

1. Have the surgery to fix your rotator cuff, that will address that arm, shoulder and neck pain. I know it is painful and long rehab but it beats being on opiates.

2. Once that pain is down enough that you are back to pre rotator cuff surgery levels, try tapering down some on orals. If the rotator pain is better you may be able to tolerate less med. My peak pain now is way more tolerable than it was when I was on them. Also, I think the constipation from the opiates puts pressure on the back muscles, which increases back pain, and on the abdominal muscles, which wrap around into the back and again aggravate back pain. I am by no means saying that some people need to be on opiates, just pointing out that many people do ok off them, especially if they have a pain pump. I also have a spinal cord stimulator and between the two am doing better.

3. I have little doubt that your groin and leg pain is SI joint. Given your extensive fusion, the chances of you developing SI joint issues are more to probably side than possibly side. Find out if your SI joint is fused, and if it is not, or even if it is, get a steroid shot in it and see if the local stops the groin and leg pain until it wears off. If so, you know it is an SI joint issue and hope the steroid helps. If the steroid does not help and your are not fused at the SI, consider getting it fused. My pain doc says that it is a simple procedure, of course, they are not the ones going thru it and dealing with the pain of the surgery, which will not be as bad if you are off oral opiates.

I wish you all the best and remain available to help in any way I can.

I am having bad issues with my Pain Pump. First I had a kink/my catheter was shredded. I had my revision in February. After surgery I was in withdrawal all weekend long, called the emergency number multiple times. Heard nothing, by Monday I was waiting down there for them to open. Due to my catheter being kinked I had been in withdrawal on and off for months. I kept complaining of bad nausea, anxiety, etc. They’ve turned the pump up multiple times now. Trying to get me out of withdrawal, now I’m having withdrawal issues on and off. Has anyone experienced this?

A question for all my fellow pain pump users... Did you experience little to no pain relief from your pump? Even after having it turned up quite a bit? And, then having something added to the dilaudid(what I have) and then having actual pain relief? That's the conundrum I find myself in. Three years with my pump and exactly one day of relief. My PM doc wants to add clonedine(?) to the dilaudid at next refill. I would value your input here. I really thought this pain pump would be the answer to some of my pain. Especially after a very successful trial. I am at the point where I am considering having the whole thing removed. Thank you.