The suggestions I'd be able to make here all would be under-whelming. You're out of the range of expecting them to make a huge difference. Be that as it may: why not switch the narcotic to Oxycodone IR. It doesn't have to have the tylenol, so there's no cap to how much you can take. The combinations with hydrocodone make it hard to up the dose appropriately.

After surgery, I was giving Oxycodone SR (Oxycontin) and oxycodone IR (Immediate Release) for "rescue". In the end, I never used the long-acting, just the short acting.

There's also dilaudid and methadone.

I don't know a lot about the pump, but I see people on the spinal forum sometimes get spinal stimulators implanted to stop pain signals from travelling upwards.

Here's a video on the stimulator from my back surgeon's website.

http://www.pfol.com/newsroom.html

Bilye,

I am glad to hear that there will be more testing done. I went through the same things. And, yes, too graphic to state here as well as discussing the PT. But, honestly, if Mayo is saying there is issues, I would try this specialized therapy FIRST before resorting to a SCS. I know, I am in pain too with the spinal bit and neuropathy. But as for all this other, the pelvic floor PT was the best thing I ever did. I just don't know much too much about the SCS' other than what people have said about them on the spinal boards. But everyone is different. I would really just do the research first which I am sure you will.

I feel so badly for you, Billye. You have been so brave fighting this pain for so long. I can't even remember how long, but it seems like a very long time...

I don't know a lot about some of the pain medications, but you may recall me mentioning my friend here who is on Methadone. I don't know enough about it to recommend it, other than IF you ever take it, don't do it without a doctor monitoring this...

My friend though at least has a life. Granted, it is not exactly like it was before, but she is able to get around and take care of a teenage son... I want to say she is on a combination of that along with something else-maybe Oxycodone... Can't remember.

Please, don't resist taking something to give you some comfort and pain relief. Your life may not be as it was before, but if this could give you some relief, a little peace and maybe a few smiles, wouldn't that be worth it to you? Taking pain medication so that you can have a life should be considered an acceptable means of obtaining relief. You will not be viewed in the same manner as someone who takes drugs to get high... Not one of us here in this forum would EVER consider you a drug addict, nor would those close to you who love you and have seen the kind of suffering you go through. Trust me on that!!! It really is OK...

What she says about it being hard to find someone to prescribe these-she is dead serious and not exaggerating in the least. I don't know how most of these doctors think patients like this can function... Many are left to suffer, which is outrageous!!! There is one very good pain management doctor close, although I don't know if he prescribes the pump...

Maybe this is primarily a problem with Texas doctors, I don't know...

I have rambled on enough... Billye, please go for whatever you have to take to give yourself a break... And, don't look back...

Cathie

I see the pain doctor today. 100 mile ride. Not my idea of fun. I've read all your posts, researched and researched and frankly this isn't an easy decision to make. I so don't want to take these medications. It just goes against my grain and that's even without having to consider the drying effects. So I'm making the trip but with no firm goal in mind. We'll see.

Billye

I am not a big med person and when my pain gets out of control mom has to encourage me to take a vicodin. She feels bad cause doesn't want to be a drug pusher but also doesn't want me to suffer. I guess when I have chosen to take it I had to work through the why I felt it was bad. Of course these drugs like opiates and narcotics I feel have there own issues and why I fear them but I think weighing the benefits vs the negative at the time to get you through the time. Also to realize there is a HUGE diference between someone in hell pain and needs these meds then the person who just takes them and has more addiction issues. I have mixed feeling on the scs. The doc who wanted to gave me a video and I did my research. If I can help you in any way please let me know. I think it was Dan on this board who talks abouth the fetnyl patch that he has been on and how he is not addicted but it gives him quality of life and the pros out weigh the cons. I saw a doc and he said that he would rather be on those drugs himself and not be in pain rather then be in pain with nothing but his first choice would be not to have the issue of course. I am sorry you have to drive so far and when I go to ucla its far so I understand. You don't have to decide now. I hope you find what works for you.

Well..saw the pain doctor today. He is recommending a spinal cord stimulator. I pursued this idea 2 years ago and decided against it. I'm reconsidering it. I have an appt with my old pain doctor before having to make a decision and also my rheumie. I want their inputs into this idea. At this point I feel like "what do I have to lose?" and it might do some good.

But I'm researching it and it is scaring me again. Just don't know what to do. Today was a bad day. My mouthy little dog kept me up all night last night and I was so exhausted from my son and daughter-in-law's visit yesterday.

I'll think about this later.

Billye

'You will never know unless you try"

I kept that in my wallet for ages and ages until it self-destructed.
I've been very lucky in escaping spinal issues - I should have them. I don't.
I merely have soft tissue and tendon damages which heat/cold therapies and exercises can help [IF I do them].
In starting to learn about PN and all it entails tho...I was surprised at how many also had spinal problems, many of them BAD.
In your case tho, [again from all my reading of other's experiences] I would bet that the steroids are your culprit...I've a friend who has cancer-and has gone thru more chemo and rads than ANY ten other people with cancer...She too is suffering from those pesky fractures everywhere. All this only recently more so, same as you.
I believe that medications to help us NOW can hurt us later. As in both your cases. I suscribe to the following newsletter that keeps me as up to date a a mere 'patient' can be: http://www.medicalnewstoday.com/ I get it weekly. And spend at least an hour going thru all the goodies.
Like Daniella, I'm not really a big meds person. They scare me at times, all the side effects and especially the lesser known or rare ones-as I seem to get those. BUT- Painkillers DO have a time and place in the course of things. AND your pain does sound like a time and a place when they should be tried. As well as the stimulators. You won't know, until you try!
My heart is with you on this one. Only You know what might be best for you. If there is a 50/50 success/failure rate in anything...just HOPE HARD that you are in the success category! I believe many here will be doing the same for you as well. - j

This spinal cord stimulator ....can they let you wear it on the outside for a few days (before it's implanted).

When Alan went to his spine doctor (that's when we thought his PN WAS spine related), we looked into what Jerry Lewis has implanted. Can't remember the name of the thing. But what I DO REMEMBER is that they don't just implant it in your off the bat. They connect it and you wear it (on some kind of holster thing), that way you can determine if it is indeed what you need and if it indeed does the trick.

So if this is the case, give it a go. It's not permanent and you can always say "no, it's not for me" or you just might say "Aha RELIEF AT LAST".

Best of luck, my dear.

Melody

only wishes for a speedy solution to your pain and medical issues. You have been through way too much.

Best of everything Billeye

Marlene