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Posted By : Tirzah - 8/7/2017 3:32 PM
Maybe I'm just old-fashioned, but I guess I thought we'd try a few oral meds or lots of PT or something before jumping to surgery. What am I missing? Why is a pain pump so much better than oral gabapentin or pregabalin? My dr at Rush is very keen to get one in me, but after 8 years battling infections from an SCS, I'm not really on board with the idea of yet another implant.

Anyone's knowledge of experience would be greatly appreciated. My neurologist was against more surgery until the doctor at Rush recommended it & now it's all he can talk about too.

Post Edited (Tirzah) : 8/7/2017 3:39:17 PM (GMT-6)


Posted By : straydog - 8/7/2017 5:29 PM
Hi Frances, good to hear from you again. Last time you posted here the PM dr had taken you off of all of your medications & you were really struggling. What has changed since then, are you back on meds?

I do not think pain pumps have become a 1st line of treatment at all. I have only seen a couple of new ones come through here in the past 3 years.

Pumps can be good for some, but they are not for everyone, same as the SCS unit. Risk of infection is always there any time surgery is involved. I have seen a couple of bad infections with pumps & they had to be removed. If you do not want a pump, I certainly would not consider doing it until I am certain that is the road I want to travel.

Pain pumps can be a great tool to get pain down, but the pump is only as good as the dr maintaining it. It takes a dr that is very experienced & has vast knowledge with pumps. He also needs to have the same knowledge with medications & proper dosage to treat a pump patient. My first dr was not experienced enough to handle a pump patient.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Tirzah - 8/7/2017 5:58 PM
That flake doctor never did put me back on anything. The only decent thing about this current doctor (and the one I saw briefly before that almost immediately told me I needed to be seen at a university hospital) was that he ordered an EMG, which came back abnormal (vindication!). The prior doctor said he was pulling me off of everything because my leg pain & weakness, in his incorrect opinion, was due to OIH. Turns out it was due to radiculopathy, so that's why the muscles in my legs are shriveling up in spite of me adding more and more exercise every month. And ... even crazier, my physiatrist did some testing that seems to show that my leg nerves aren't conducting like they should due to something in my neck (sorry, I struggle with medical jargon on a good day -- with pain up at levels 8 & 9, I can barely think at all). So he's sending me to this special kind of PT called the McKenzie Method. The goal is to move the pain back to the source (in my case, that seems to be my neck), so it can be treated there. The PT is simple to do, but really miserable since I haven't had to deal with neck pain in quite a long time.

The physiatrist is wicked smart. He's practically fresh out of med school, but he's at the Shirley Ryan Ability Lab -- which is rated #1 in the country. At least I feel like he listens & is actually trying to help me, rather than just focused on how quickly he can shove some fancy new device inside my back (or is it the belly? -- I don't really get how these things are done). Unfortunately, he says he's not sure how much he'll be able to help me beyond the short term. He started me on diclofenac, which is decidedly a better option than the 24-30 Advil I was taking a day. And he said he's willing to restart the Lyrica for me later this month, at least on a short term basis until I can be seen by one of the neurosurgeons at Northwestern.

But with only 4 more PT visits, unless the neurosurgeon comes up with some brilliant plan, it looks like I may be stuck with this pump-happy doctor at Rush. I wish I had known that was basically all that he does. I would have pushed my neurologist harder to find a better option. I was referred there with the understanding that I would be able to receive IV immunoglobulin treatments, but they had already decided against that before my first appointment and instead switched me to a doctor that does all pumps all the time. It's a LONG drive for me to get down to the hospital, the doctor tends to run an average of 2 hours late & they are constantly rescheduling my appointments less than 24 hours beforehand -- even though I put them on the books 4-6 weeks earlier. It is endless frustrations, but unlike any other specialty out there (except Infectious Disease), I can't just call up a new pain specialist myself to set an appointment. So I'm stuck with whatever my PCP or neurologist can come up with for me.

And on top of the fact that I'm already nervous enough about this, he wants me in-patient in the hospital for 5 days for the trial and I have severe PTSD in hospitals due to a past assault by a doctor in a hospital that, thankfully, is now closed. The pain psychologist said that while I have almost no psychological risk factors that would prevent me from getting a pain pump, he strongly recommends against it. I agree -- the thing absolutely terrifies me -- but I feel like I have no other options. Every day I see another news story about the "opioid epidemic" that will supposedly be solved by denying everyone any medication that will bring the slightest bit of relief. I get that now most doctors in Chicagoland won't write for Lyrica because it could be abused, but I don't understand why even drugs like diclofenac or gabapentin are off the table (not to mention, I have no history of ever misusing my prescriptions).

I am sooooo frustrated & trying to make the best of a really, really bad situation.

Posted By : straydog - 8/7/2017 7:29 PM
Frances, when pain pumps are recommended it is to patients obviously with long standing chronic pain that is not going to get better. But the patients have ran the gambit of various pain meds & are currently on a large dose with no room for an increase & their condition will require the use of constant narcotics.

If I remember correctly, when you were taken off of meds you were on a low dose & had even returned to work & was doing well. For the first time in a long time you were stable on your pain meds. Then suddenly the idiot pulled the rug out from under you. So in essence, you have not exhausted pain meds, yours were taken away from you. If I am correct about the above, no, you do not fit that part of becoming a pump patient.

You would have to pass a psych eval also. If your pain psych says no, listen to him. Oh, I feel certain this pump dr has a psychiatrist that he sends everyone to & they pass the evaluation. Big money involved with pump patients.

The pump is implanted in your stomach sort of on the side or it can be implanted in the buttocks. Most opt for the stomach, can't imagine one in the buttocks. Mine has shifted a little, normal over time. You cannot wear tight clothing around the waist when in the front, lol. A tiny catheter is attached to the pump & they make an incision in the back to place the catheter in the spinal column area, intrathecal sac. Everything is implanted nothing external.

Do not let any dr tell you a pump will cover overall pain, it does not. When mine was implanted I had both neck & back pain. I had to decide which one was the worst of the two & my back won the prize. Pain pumps work for one area only & nothing else. They also no longer allow oral medication with a pump either. For instance a friend of mine has a pump for back problems, had a knee replacement & was put on oral meds for a short time to recuperate from his knee surgery.

By the way, Gabapentin is being looked at hard by the FDA & CDC, they are claiming the addicts are getting high off of it, so we will start seeing it being rx'd less. This has been public for quite some time now.

I just don't think a pump is a good fit for you.
Susie
Moderator in Chronic Pain & Psoriasis Forums

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