PM appointment

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ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 8/6/2008 7:22 PM (GMT -7)   
Well, I finally had my PM follow up after this latest "flare" and just as I predicted the doc was quick to express displeasure that my PCP had put me back on oxycontin. I was told that it is "my job" to get off that right away again. Of course. I didn't have any problems stopping it the last time, so I'm not worried about that. My concern is that I will be right back in flare-ville once the med is completely out of my system. It seems like when I am taking it along with the percocet for BT it keeps my back moderately controlled. (Which might have something to do with why my PCP and the hospitalists keep trying to get the PM to put me on it...devil) Of course there is more pain with less medication, so the longer I go without the extra medication the more my back is strained - leading to the inevitable big event where I suddenly find myself on the floor unable to sit up much less stand or walk.

This time the PM has referred me to a new neurosurgeon. This guy is at the university research hospital, so maybe he will finally figure out what the root of the issue is. I have to admit, though, that the thought of surgery is terrifying to me. It will be interesting to see what he says, though. And who knows... maybe he will be the one who has the miracle cure and also happens to be my prince charming, right? (OK, so that's more than a long shot. eyes Well, I've got to have something to dream about right? LOL!)

Ry

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/6/2008 8:02 PM (GMT -7)   
Hi, Ry,
I wanted to scream as I read your post. You know, if doctors would just "get it' (I guess this is my "dream"!) that we as pain patients are likely the best ones to keep track of what is going on with us, and what helps us get our life back - a piece of it, at least - maybe they could work with us instead of against us! What's the harm in letting you stay on the oxycontin & percs until after the neurosurgeon's visit? (yea, like we have the answer to that!)

Well, the neurosurgeon....remember, he's a surgeon so that's what he's going to lean toward, but maybe there will be some miracle procedure for you. i'm going to keep my fingers and toes crossed. But hey, wait until you're better and then look for your prince charming! You don't want a neurosurgeon who practically lives at the hospital!! (well, maybe better than nothing...LOL)

Keep on dreamin'

PaLady

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 8/6/2008 9:12 PM (GMT -7)   
LOL, PaLady! I hadn't thought about the hours! Just the fringe benefits! tongue I think you're right. Best to wait til after the miracle happens. (yeah...we're both going to have a miracle. I've decided it. no arguments. yeah)

It is pretty crazy, isn't it? You would be just livid if I told you the rest of what happened at this appointment. Some crazy weird yo-yo-ing about what to do with me next since my stupid old body just won't cooperate and stop this stuff. It is getting harder and harder for the PM to ignore the immutable fact that there is a PHYSICAL issue. Something MECHANICAL in my back that is messed up. I think they don't know what to do with themselves now that they can't justify brushing this off as psychological pain any longer, you know?

You are right on about the surgeon. That's what scares me about seeing him. I SO don't want to have surgery. I have seen several surgeons actually and most of them have said surgery won't work for me b/c of the JDD. They say that my DDD is so bad in so many discs that if they go in and try to surgically fix the ruptured and torn ones that the pressure on the adjacent discs would blow them out in no time at all since they are nearly there already as it is.

I've decided that I'm going to step down on the oxy instead of stopping it cold. I COULD stop it cold. That's what I did last time and it was fine. But I know if I call my PCP and explain that he'll give me a re-fill when this script runs out for 10mg pills (right now I'm taking 20s 2x/day). Then I can take 10mg 2x/day for a couple weeks and then 1x/day for a couple weeks and that will take me right up to when my neuro appointment is. That way I'll be stopped when I see him, which will meet my PMs request, but still maybe not end up back in the hospital before I get to see this guy. I hope that isn't too sneaky. It seems pretty fair to me. I'm still getting off it - just not super quickly.

Ry

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/6/2008 10:03 PM (GMT -7)   
And your PM wants you off the oxy before your neuro consult because___? Is it to be clear of long term pain meds before the surgeon does an eval.?

I don't know. This all boggles my mind right now. There isn't even an icon that fits! LOL

PaLady

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 8/6/2008 10:35 PM (GMT -7)   
Hi Ry: I/m fresh out of advice about surgery as I'm a example of one after another and another failed surgery. Going to a Neuro-surgeon at a University Hospital has to be Your best bet as ( to me ) the best surgeons are at teaching hospitals.
Reading about gradually reducing Your pain meds before going to the Neuro. ? Why ? Will the lack of pain meds effect Your MRI, Ct Scan, Mylegram
films? I realize that pain meds may indeed mask some of Your symptoms such as the range of motion and ........? Will not taking Your pain medicine effect your reflexes ? No. Will Your memory improve off the meds so you may better represent Your pain, lack of motion, discomforts ? Or will going off the pain medicine increase Your pain so You cannot think? I know I'm not the sharpest knife in the drawer but I do not understand going into pain for a Neuro-surgeon appointment.
Okay, I do have one thought to share with you. That is the doctor You are seeing is a Surgeon ! Surgeon's make the income with a knife and messin with Your spinal cord surrounding area's. Fresh advice--------- be careful do not agree to anything without a lot of research and great feeling about this Neuro-surgeons bedside manner and most importantly how will he or she handle You should the surgery fail ?? I feel asking a Surgeon what happens if they fail with the surgery before hand and how they react to Your question will give You a idea whether or not they think they are God or if the Surgeon reallizes they are human and will treat You like a human not a test subject. Your failed surgery, pain friend with-- Best wishes for You, tom
Tom Lasko


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 8/7/2008 3:10 PM (GMT -7)   
PaLady: It's not that the PM wants me off the oxy before the consult. She just wants me off the oxy period. Always. Yesterday. This is the doc who thinks oxy should only be given to end of life cancer pain patients. Seriously. I agree with you - it's just stupid! I don't understand her prejudice about these meds. It's funny actually - she started me on a new nerve pain med (anti-seizure med used off-label) and it has really seemed to help, so I told her during this appointment that I was "loving" this new med because the burning in my leg was reduced until the flare up happened. I only thought about it later on the way home, but I realized that she was all smiles about that and totally amenable to having me stay on this med (which has potential side effects that I personally think are scarier than the oxy). I thought about it and just laughed because I realized if I had said exactly the same thing about the oxy because it also really helps the pain, well then it would have been a whole different story!! Just silly, isn't it? tongue

I hadn't actually thought about what impact it would have on the neuro appointment. That is something to consider, though. I know my pain better than I know myself (I know you can all relate) but I suppose it would help to make my case if I'm feeling worse when I see him. It's just my self preservation instinct kicks in and doesn't want to feel that way if I can avoid it somehow. Who knows... eyes I sometimes don't think these doctors even know I'm in the room when they are treating me anyways!

Marmite: Welcome to the forum! JDD is Juvenile Discogenic Disorder. It is a mild version of Shaumann (sp?) Kyphosis and causes speedier and more widespread degeneration of my discs. DDD is Degenerative Disc Disease. PM is Pain Management Doc. Hope that helps. tongue

I think what you are saying about surgeons is very true, Marmite. My father had a pancreatic surgeon who saved his life several times over through the course of a long and scary life-threatening illness. I think he practically walks on water. Certainly all surgeons are not to be cast into the same lot. I think my fear with the neuro is that I have heard of very few successful spinal surgeries. That combined with the fact that I've been told many times that surgery on my back would be as likely to cause greater damage and pain as not causes me to tread lightly in this regard.

Thanks again for all of your support everyone! I'll have to do some more thinking about this taper issue. For now, I'm still taking what I've been prescribed as the consult is several weeks out. I will probably have to make a decision in the next week or so.

Ry

Post Edited (ryand) : 8/7/2008 5:30:19 PM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/7/2008 6:28 PM (GMT -7)   
Hi, Ry,
I'm a little foggy tonight, but did want to respond. I keep forgetting about your doc with the pain med bias re: cancer pain. Thing is it's not really silly; it's your life! I think after this neuro consult you need to stay with your PCP (did we talk about this before?? - probably! LOL). But I was remembering my neurosurgery eval. at a teaching hospital and they did do a lot of pricks and moving and things that check for pain in various areas of the body. That's what I was wondering about the ER meds at that time. But no one warned me about it. I was just told about what I couldn't take prior to the surgery and for 3 months after the fusion (no NSAIDS at all). However, my PCP was "gracious" enough to think 2 vicodin/day should have been covering my pain - and one was to use at bedtime! So I didn't have much to withdraw from!

Are you on neurontin (gabapentin)? Or lyrica? I'm on the former for the leg and foot symptoms. I am so tired of having my life ruled by pills, but then isn't everyone here?

We'll all be here once you get the surgery consult - and I think you're already very knowledgeable and wise and acting with caution. Good for you!

Hugs,
PaLady

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 8/8/2008 9:56 AM (GMT -7)   
Hey, PaLady, thanks so much for taking the time to respond. I know you are not feeling great right now, but I hope you know what an encouragement you are to me (and I know to many others here!).

Yeah, we did talk about switching back to just the PCP. (glad I'm not the only one whose memory is a little spotty! LOL!) I think that may be what I end up doing if I can get my PCP to be okay with the idea. He is really really great, but he (understandably) wants me to be seeing a specialist in hopes of diagnosing and treating this issue once and for all. As this drags on and on, I think I need to resign myself to the idea that this might just be the way my life is and give up on finding a solution other than management with medications. Like you said, though, it is tiresome to live in subjection to these medications!

The nerve pain med I'm taking now is Zonegran. I did try Neurontin and Lyrica, but neither one worked at all for me and the Neurontin gave me horrible memory problems. I could barely complete a sentence while I was taking that stuff! This Zonegran really did help with the nerve pain, but the oxy/perc combo is the only thing that seems to work for the majority of my pain. This last flare happened while I was on the Zonegran, and even that stopped working during the flare.

Thanks again for your support and encouragement. Hope you are having a better day today!
Ry

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/8/2008 11:28 AM (GMT -7)   
Thank, Ry, for the supportive words. They are much appreciated and needed right now!

Since I'm on neurontin, you can cut me some slack on my memory! LOL

Maybe after this neurosurgical consult - and especially if they tell you something similar to what the others have - your PCP will be willing to take you on, and maybe especially if you continue to be active in researching and learning new things that come up. And you and he can work together to pursue those when they do. And I say "when" because there's always a new technique, new med., etc. coming out. My neurosurgeon told me last year what I was getting was "state of the art" re: fusion surgery for 2007. However he said it obviously wouldn't be state of the art in 2027. I'm going to keep hoping that maybe over time they develop better agents to inject into our spines other than the steoids that only seem to work for brief periods, if at all. Or medications which only target certain areas of the brain for pain and don't dull the rest of us! And some of those things are in the works so the fact you're younger gives you some hope for future technologies. In the meantime, yes, you'll probably have to do what most of us have to and that's manage the pain, and you're lucky you have that PCP (who sounds great) to work with. Maybe he'd be happy if you just consulted a pm doc once a year to review your meds - and even if it's the same pain doc you're seeing (if you've got no other choice) you and your PCP would know what's worth changing and what to not fix if it's not broken!

PaLady

~Cloe~
Regular Member


Date Joined Jul 2008
Total Posts : 125
   Posted 8/8/2008 12:37 PM (GMT -7)   
Hey ry I hear ya I hear ya!
I am being managed by my GP until I can into PM. I just got the letter today my appointment is not until Feb 5th 2009!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
'there i feel better now, sorry gang'
Anyways great posts and as for your dream PaLady about doctors getting it?, I say you rename it to your nightmare.
Lots of love to all,
Cloe
IN BED AGAIN TODAY, MEDS NOT CUTTING IT!
Sorry went off again. redface

Post Edited (~Cloe~) : 8/8/2008 1:40:13 PM (GMT-6)

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