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Gramps--I think I figured it out!

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Posted 4/18/2008 5:52 PM (GMT 0)
Hi Gramps!

 I should call you "DR Gramps" haha! Now that I took my SCRPITED noon dilaudid & my bain is no longer shouting PAIN alert!!! here's what I think my doc has in mind:  Get up in AM & take the Advil.  Then take the dilaudid @ Noon. Then take Advil   b4 supper (about 5:30) Then take the final diluadid at bedtime (around 11:30) In short: Alternate the Advil/dilaudid for 24 hr coverage of MOST of the pain.  (He said nothing would help it all, any of the time &   I can live w/ that.) That would be 2 Advil & 2 dilaudid w/in 24 hrs, something roughly every 6 hrs for my discomfort, 2 over-the-counter & 2 RX.

Would that be "it"?  The "take 2 by mouth every 12 hrs as needed" dilaudid part + the permission now to do a NSAID (Advil) for the in-between pain?

WHY WHY WHY doesn't he just SAY that, then?  Why must we, w/ our pain-fogged dumbed-down brains (what's left of them) strain to figure this out by ourselves?!

Thanks again for the clarification re the dilaudid & its' effectiveness.  Yes, it helps, for that 4-6 hrs.  So then, after that, the "gap" would be filled by the Advil until the next NEW DOSE dilaudid. Right?

Whew!!  Now I REALLY need that nap!  I will call his nurse on Monday just to be sure.  I can get thru the weekend like this for now. 

~Lakeside

Posted 4/18/2008 7:40 PM (GMT 0)
Lakeside,
I thought I'd add my 2 cents worth here. Remember this is your surgeon's office prescribing, not a PM doc. My surgeon is still prescribing my percocet & several other drugs even though I'm over 6 months out, but only because he had an other MRI done (because of my continued complaints of no pain relief from the surgery) and has had to acknowledge the surgery hasn't worked for me. He also knows I was laid off from my pt. time job, and my PCP's office isn't willing to prescribe adequate pain meds, so I'm outta luck until I find someone who will. But that's the only reason they've continued to prescribe. They expected me to be decreasing the amount of drugs I needed by the 3 month mark, and I had to have serious discussions with his nurse, and even e-mail him to finally get them to continue prescribing 6 percocets/day. His nurse was on vacation a couple of weeks ago when I was due to call in for my percocet Rx (they have to mail it to me as I live a couple hours away) and the P.A. who was fiiling in for her, and who assists my surgeon, left me a phone message since I was so far out from surgery that he'd send one more month's script but I should be referred back to my PCP now! Well I called and left him a message about what had been discussed between the surgeon and the nurse and he called back and apologized, but then sent a script for only half the amount of percocet (90 pills instead of 180). So then I had to call him back and say what, I'm supposed to abruptly cut my meds in half now?? And he called and apologized again but I had to wait for a new script, which he post-dated, so it's a good thing I had a few extra percocets saved from those days I only needed 5 or I'd have been out of meds. An entire week of phone calls and anxiety for me, which is just showing me I have to find a PM doc fairly soon. This is a long way of saying to you that your surgeon's office is probably looking to decrease your meds, because they don't like getting involved in long term PM. So prepare yourself that you may need to look for a PM doc.

As far as advil goes, I find it's ok for an occasional achey time, but not really for BT pain from surgery. Of course, your radiating symptoms cleared up after surgery, and mine didn't, so I still have a lot of pain down my butt/leg and in my feet. None of that went away, but I've got added muscle pain from the surgery, and I don't know if advil would really cut it for that. I actually find tylenol does a better job = especially the fast-acting capsules. Anyway, thought I'd weigh in because we're both recently out of surgery.

Great day here, too! Sunny, a little chilly still along the lake but I don't mind the 60's!

PaLady
Posted 4/19/2008 4:02 PM (GMT 0)
Hi PALady! thanks for the info! When I see my neuro in May I'll ask him WHO should be doing my maintenance meds for the continuing CP and post-surgery pain,too. My GP, him or a PM doc? (I have access to all 3) I agree that surgeons don't like to get involved w/ long-term pain med RX's, but if that's what it is, and it IS for me, then I would think he'd continue to RX what I need, so as not to cloud the issue. He is very conpassionate & a great doc & we've had a longer-than-usual relationship b/c of all the complications I;ve had, so it's not a usual case for him. He usually does his surgery, see patients for follow-up awhile & then off they go,back to their healthy lives. But then there are those like me---! And many others of you too.

I can't take Tylenol, so Advil has been helping take the achy-ness down a notch. I'm sure much of the pain is inflamatory, which is good for the fusion, so that's why I questioned the nurse about adding the Advil to the opioids....I tried that yesterday, alternating the Advil w/ the dilaudid & it did give me some acceptable relief. Not as good as the diluadid every 6 hrs, but tolerable when using an ice-pack as an "adjunct". Today we will be out & about running some errands, so by tonight, i'll be in need of more than just an ice pack---and that's what the basic problem is, I think, as Gramps said: I'm more active now, too, so the pain will get higher....yet activity is good, so one must find that balance between laying around like a slug & running a marathon!

Yes, thank God, my radicular symptoms are mostly gone! And the sciatica too. I get an occasional "zinger" and sometimes by day's end, the nerves in my r foot complain (numb/tingling etc) but nothing like before. So the fusion, for my basic problems, helped a lot. Now there's the muscle pain yet + the hip crest graft site pain....but that will, hopefully, abate as I heal. Maybe that's what he's thinking, also. Just bear with it, it's not unusual, it'll improve,etc.

Well, out for a walk b4 it rains later. Sorry, PALady....wind is NE now, getting cloudy & chilly & I will gladly send this gunk EAST for YOU to "enjoy"!

Thanks, everyone, for always listening! We are NOT complainers, right? Right! Just want to heal, & get on w/ our lives. And have some good pain relief in the meantime so we CAN do just that.! Is that too much to ask?!

~Lakeside
Posted 4/19/2008 8:06 PM (GMT 0)
Lakeside,
I would say if you've got a good relationship with your neurosurgeon and like me, you're not one of his complete or easy successes, he may continue prescribing for you and maybe you want to talk with the nurse about needing an increase in your pain meds because you're starting to be more active. I would be careful - if he's prescribing adequately to relieve your pain, which maybe he's not but would be willing to (I hope this makes sense!) - about letting go of him and being referring back to your PCP, unless your PCP is one of those who's wiiling to adequately prescribe for pain and you already know this. In other words, be careful you don't leave yourself in worse shape or out in the cold. Since your pain now is related to the surgery and donor site, I'd try to ask them to help you more with the pain. But they may not in the normal course of action increase pain meds, as they're expecting MOST of their patients to get better and wean off the meds. But as you said we're not in the "most" category (if anyone truly is....sometimes I wonder).

It just seems like you shouldn't have to be in more pain because you're trying to get a little normalcy to your life. And that your surgeon's office ought to understand that in your case you may need more meds, not less or the same. Saying the 'ought to understand' , though, doesn't mean they will. As well all know too well!

Off to enjoy the great weather!

PaLady
Posted 4/21/2008 4:54 PM (GMT 0)

Thank you PALady for the advice & explanation.  I'm sure I AM one of his "longer seen" patients, due to all the complications etc. Many others see their neurodoc, have the surgery, are followed for the proper length of time, heal w/o problems & are considered a "scuccess" & discharged, never to return.

But I keep re-appearing, as he always says!  So sure, it would make sense, that the "normal" pain pills would be titrated DOWN as you get farther out from the procedure, but I always seem to get worse/have a complication/ need another surgery.....!  He probably never thought he'd be RX'ing my meds as long as he has been.  And he's always been very liberal in his doses, etc.  Which is why it really bothered me last week when the nurse said my pain levels should be going down by now....& then re-dosed me to LESS, just when, as you say, I am trying now, as I feel better, to be more active & that's contributing somewhat to my increase in pain,along w/ that graft site really starting to act up (atho he said that's b/c it's healing) and a few weeks ago, that spot wasn't as painful as it is now.

ANYWAY---he did give me JUST enough until May ---but when I see him then, I will respectfully request that 2nd RX, for "1 every 6 hrs as needed" b/c that gave me the latitude to take from 2-4 per day (altho I never took 4, but did have the "option") as my pain levels indicate my need.

Geeze Louise!  Do they think we WANT to feel like this? That we WANT to be on all this stuff?! I also want to ask him about protocol: who IS my doctor right now?  He or my GP, who's known & treated me for over 15 yrs and has never had a "problem" w/ me, medication wise. She originally gave me the RX's for everything, right up to my fusion surgery.  It's only since then that I;ve been on this "low-pain relief" diet!  Maybe I should make an appt w/ her?  I just don't want to step on any toes or, as you say, get myself left "out in the cold".  I just want them to UNDERSTAND all this---more activity (good) = more pain (bad) so give me the freedom to adjust my meds based on how "normal" I am trying to be.  Holy moley!! 

Speaking of which, dear Lady, here comes some lousy NE wind/cooler temps/light rain....we're giving it the boot by tomorrow, but YOU can have it then! :)

Thanks for your input!  Hope you are having a tolerable day...our "stories" are similar & I hope you are doing reasonably well, or at least not WORSE!

~Lakeside, inside, by the woodstove AGAIN!!

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