Post-Op Med Survey

[Nancy Joy]

I was on Dilaudid PCP after my first surgery and a PCP with something that started with a P but can't remember after my second. I was sent home with Oxycodone from both of these 20 mg. Extended Release and 15 mg. every 3 hours. I had little candy making cups (papers) that I put my time on and the pills in to take thru the night when I awoke (and I did- every 3 hours). I also wrote them everything I took down so I would know what I was doing. Then, due to distance and signatures on scrips I was switched to Hydrocodone. I then took 2 Hydrocodone every 6 hours. My pain level is much less now so I am taking 1 Hydrocodone every 3 or as long as up to every 7 hours. Take it when I need it. Got thru the night last night without one at 4:00 (woke up every night about that time in pain). Every day now is different. I did a lot when I got home also (none fast!) but as I could - some laundry and tried to fix supper each night but most nights to begin with was soup or frozen pizza! They kept wanting me to move in the hospital so that helped give me more movement at home. I do most all housework now except vacuuming. It may be awhile yet before I am able to let the Hydrocodone go but so what? I understand that "tight" feeling and yes, left neglected for very long it becomes pain (I tried). My anterior surgery added the pain of the abdomen (plus 2 more surgeries thru it) and that pain (abdominal) just left about 5 days ago- I didn't think it was ever going to.

We are all so individual. Initially my Dr. said I would be off work 6 months and might be on narcotics for 5 months. Thankfully, I am recovering much faster than that but I wanted to be prewarned. Bless this forum!!

[Nancy Joy]

ok all- forget my input- I just saw the date on the original question- DUH!!

[Susie*Bee]

No apology needed, Nancy Joy, as that will be helpful to any looking for information, regardless of whether it's timely with the original post. You sure are doing great! As you said, we are all different and my recovery was MUCH slower. That is great that you are able to do so much!

[StevieRayFan]

Hey everyone,

I was going to start by saying, “as we all know”, but I’m going to change that to, “I have no freaking idea”!

For me, the most “powerful” pain med I’ve taken, is Norco. On my first surgery, the cervical, it was 5/325 every 6-hours/as needed. The night I left the hospital, I had NONE. All they gave me was a valium, and the nurse sort of “slipped” it to me. That night was bad, and if I recall, it was by the end of the following day that I got my first prescription filled. From then onward that’s all I took, and for the first 3-months I was in a fair amount of pain. My surgeon left that sort of stuff up to my PM doc. (Doc-A)

Doc-A was also “handling” my lumbar issues and had stated very early on that I would not require surgery for the lumbar area. He was handling the epidural injections throughout the spring, summer and fall, and only till the end of Aug did he prescribe more Norco 5/325, because by this time it was looking very likely that I would need surgery after all.

About 6-weeks prior to surgery, (Doc-A) stated that I could take TWO Norco 5’s in the mornings, and I was surprised! (I had no idea that Norco came in 10/325) Very long and grueling 6 – 7 weeks there, because I had never had any significant pain relief. The lumbar region was deteriorating more than ever, and a distinct instability and wobbly connection somewhere down there had been present for over a year. (Not blaming anyone… Myelopathy causes “wobbling”)… but in my case I had explained many times that there was a feeling of instability as if the spine itself had a weak spot, and that it came and went relative to pain-levels.

Long story short – I had a fusion Oct 22, 2008. I’ve not been out of pain since, though compared to when I got out of the hospital, the levels are way down. My stay in the hospital sucked too, but the one bright spot (after 3-straight days of no sleep or food) an Angel Nurse on the last day came in and started giving me 2 Norco 10/325’s every 4 hours. For the first time I was able to get some sleep, though the pain levels were still intense.

I couldn’t help making a comparison to Angel-Nurse and Doc-A. But Doc-A was there when we needed him the most (he's a friend) and he caught my Myelopathy and found my surgeon for me, the wonderfully talented Dr. Frank Phillips out of Rush, Chicago.

For a few weeks at least, I was on the Norco’s every 4-hours. The wife was waking me during the night for the medication. The whole point was to try and keep it under control, and for the most part it worked.

On my own, I stopped taking the Norco during the night. (I take Ambien generic at night… did and still do and plan on taking them for as long as I want to.) Doc-A didn’t like my taking Ambien at all, and even told me the last time I got it from him, “we have to have a talk about that”.

Soon after I started taking single 10/325’s in the hopes that I’d soon be down to taking 5/325’s.

About 4-weeks out from the surgery, Doc-A mentioned to the wife that I should have been OFF the Norco by now. (Doc-A and my wife know each other professionally, though neither she nor I work in the medical field). At this point now… I was VERY upset with the comment. At 6-weeks out, I mentioned this comment to my surgeon’s RN, and flat-out asked her, “Was it abnormal for a person 6-weeks out to still need Norco”. She said NO. told her about Doc-A’s comment. The RN’s response to me was, “Is he a surgeon?”

I just called her again at 11-weeks out. “Is there something wrong with me that I still have pain enough to need Norco?” She said NO. She also corrected me in HOW I was taking the Norco… which was in early evenings when things pain-wise got the worst. She told me to take it during the day if I was still in pain during the day. Simple.

First of all, no-one will tell me how long I will continue to be in pain AS I HEAL. That’s the key here. I AM HEALING. I am stronger, walk more, and am more limber and somewhat flexible. The spine is stronger, and much less wobbly. Physically, I am making progress and though I know it takes 4 – 6 months to grown the bones together enough to show on x-rays, I am certain I am fusing. Each day there is something positive to report… but pain-levels still exist. I’ve even had some sciatica return. I am hopeful that because things “turn on and off” this too will pass.

I was playing that game someone mentioned above. The first one to get off pain med’s wins! I am beginning to see the whole picture now. My disks have been replaced, and my spine is held together with screws. The bones need to FUSE, and that means they have to grow, and until they grow and lock together, it is very likely I will be in PAIN. There's going to be stress on those screws till like everything's like a rod of steel.

The Norco never took the pain away. Just took the edge off… even with higher dosages. So I have reversed my approach completely (due to this thread). I’m taking 15 – 20 milligrams of Norco every 4 hour while awake. I STILL hurt, but I am more functional. No one likes the constipation, but it is a side effect I can live with. I’m focusing on getting my pain under control over all else.

I do not see Doc-A anymore, but exclusively go through my surgeon’s office. My RN is there for me, and she answers my questions. I do NOT bother her needlessly. I am OK, I am just still in PAIN. She knows that and she knows I do not abuse the drugs.

As a matter of fact, if within a few weeks I do not start to level-off with the pain, I’m considering asking if there may be something else which may work better for me. I'm not concerned about addiction, because I will be weaning off anything I take anyway.

Do the effects of Norco wear off after a while?

I've never had this question answered... since I am at it... Does ANYONE know… WHY does Ambien or its generic, make almost all pain go away? As long as I have had my lower back pain, Ambien at night has always significantly lowered my pain levels to the point where I can sleep relatively pain-free. (Not including the deep, deep surgical pain) But everything else just “melts” away with this stuff, and at this point THAT is why I am taking it. It works! (I’d take it during the day if I could <smile>) (plus I can't type very well, I have noticed)

The difference between dependence and addiction, I think in my case applies. No one would rather be off pain-meds faster than me, because in my mind being off the meds means less pain and eventually no pain and that means back to normal. I think I’ve been abusing MYSELF, because of a fear implanted in me from Doc-A.

Any and all advice/conversation much appreciated!

Paul

PS - My best!

[StevieRayFan]

I wanted to apologize for such a long post ^^^^. I needed to get that off my chest. I don't normally do that.

Paul

[StevieRayFan]

Ouch. The silence hurts. Did I say something wrong?

If I did, I wouldn't mind a thrashing! Honestly, I'd rather be straightened out either in public or PM than lose the support and good wishes of people who thus far seem very kind and good-hearted.

Since I changed entire attitude toward my recovery time regarding my pain medication, I've had a few of the best days yet since being screwed back together.

If, on the other hand it's just a slow board, or, you feel I'm too wordy and/or lengthy... I don't or didn't mean to offend. My mother always told me to ask questions, no matter how silly they may be. The answers and knowledge gained is more important that whether or not one appears "stupid".

I'm very willing to be corrected if I have done something wrong. This is my philosophy, and so I take my lumps "as needed" <smile>

I send everyone my very best wishes!

Paul

[JenniferG]

I can't see you doing anything wrong Paul.

I have not yet had surgery so can't offer anything to this thread as yet. Just wanted to wish you well, though!

[discombobulated]

Hey Paul,

Sorry I haven't seen you around much before, but I see you're fairly new here - welcome aboard

Don't you worry at all about a long post - sometimes there's just no shorter way of telling your journey, & I really appreciate the level of detail you've felt comfortable with sharing with us. BTW - Just wait till you poke around a bit here & see the length of some of my ramblings - some (most!) are quite mammoth, if I do say so myself!

NSF here is one of the smaller scoli/kypho support forums around as far as I can tell, & we're from all over the world in different time zones, so it can take a little while to get a response on a post sometimes. Nothing personal at all (uhh....except for flamers. Then, the ignorance is bliss ). Also, there are a fair number of members right now who aren't long through surgery (like me), who sometimes even though we read & try to keep up with the forum, we just don't always have the energy or clarity of mind to write a coherent response....perhaps you're getting a sample of my Valium-induced incoherence? lol!


I'm so sorry that your Doc A is (I'm sorry, IMHO) a Class-A Moron, and also that you had such a hard time with (lack of) pain relief for a while in hospital (especially the first time around - I know what it's like to be discharged without the proper pain meds!).

Please, listen to your surgeon, your nurse friend, the folks here, & importantly, your own body. Many folks are on strong painkillers for a number of months post-op, slowly reducing dosages, or transitioning on to less potent ones. You're absolutely right - You Are Healing. And what an awesome, long, and intense job that your body's working on right now. Muscles, ligaments, bone, & probably more was cut through, rearranged, had metal screwed through them like in a metal-workshop! Your body will tell you when it's healed far enough that you can start to lessen the painkillers. You do need to go easy on the activity, but you need to be functional! Please don't go hard on yourself for taking the painkillers when you need to, and your friend is right - definitely take them before the pain gets to the Extreme level - there's no need for that!

As for your question about Ambien....my understanding is that it is in a class of drugs known as non-benzodiazepines - chemically different, but with similar actions. I might be completely off the mark, but many benzodiazepines (including the one I'm on at the moment, diazepam aka. Valium) are very effective muscle relaxants. You might want to ask your nurse friend or surgeon about it, but maybe the pain relief you're getting from your Ambien is due to a similar effect, relaxing the deep muscles in your back. Muscles often become very tight & spasm after trauma, & this might be a source of some of your pain. Again, though, I'm no expert, so this might not be why Ambien helps your pain at all, lol. But, IF your surgeon decides a muscle relaxant might help your pain, it might be worth the possible drowsy side-effects during the day to see if a low dose of a muscle relaxant for use during the day to hopefully relieve some of that pain.

Paul, I do apologise - I feel this message getting somewhat (more) incoherent & I've had a few goes between naps at writing this, so I hope you've been able to follow ok, lol! I hope you'll feel welcome here - post often as you like/can - it's always great for people going into surgery to read about the ups & downs of the surgery journey so please never feel as though your posts go unappreciated Most of all, I sure hope you can get this pain under control more effectively - you're right, getting off meds is definitely no competition!

You take good care of that healing body of yours, and keep getting that restful sleep. Best wishes.


P.S. - as you can see, I've may well already exceeded your post's length Succinctness has never been a talent of mine, lol! Hope all makes enough sense though....

[StevieRayFan]

Thank you, thank you!

Dis,

I can’t tell by your Profile if you are male or female. I just wanted to say that you are one very bright young person! I’ve been posting on the ‘net for about as long as you have been alive, and I’ve read a lot of rambling repetitive junk. If you ever get a chance, look up “Bob Newhart”. He is a Minimalist! Very interesting philosophy and manner. I wouldn’t say he is underrated, but I don’t think many understand exactly what it is about him that they like when they see him. I only learned that his entire bit is based on saying/doing the absolute minimum, recently. Therefore he is not rushed, and his sense of timing is unlike any other’s. If it were easy to do, everyone would be doing it! <smile>

Thanks for being there when I most needed it. Both of you, but particularly you, Dis.

I too can require a few sitting-sessions before I can spit out one post!

I thought, OMG… I’ve gone and messed it up! Such a wonderful concentration of wonderful folks, and I’ve gone and messed it up.

Here’s the deal. We are all in one way or another sick and in need. This is our health and “quality” of life. I came from another board (won’t say where) where the Mod over there was a sadist or a psycho or both. I have NEVER been so initially shocked, and literally brought to my knees, with such harsh and nonsensical “Moderation”. Threads were being locked, period. No warnings, no PM’s, just LOCKED. IMPORTANT information was being exchanged… people’s lives were being discussed, etc. I’ve never been banned or suspended from a board in my life. This Mod was yanking my chain for some reason. I read and reread the Rules. I tried my BEST to just fit in so I could get some help. It was like a bad dream. Someone from nowhere would drop in a post which in some small way would “break the Rules”, and BAM… thread locked. No PM’s, no way to keep in contact with others. So I left in search of another place… and thank GOD I found this board. So, PLEASE understand. I am not only “sick” and in need of help and guidance, and am also extremely gun shy and in a way I think I was traumatized by my experience at this other board (very large board).

-=-=-=-

So yes, it has taken me a few days, but I am beginning to learn and I think I am getting this under control (at least with the med’s I have (Norco 10/325, Norco 5/325, some Valium, and my Ambien)).

Yesterday and evening were the best days I’ve had since getting out of the hospital.

Also, I sleep as long as possible and have zero-guilt about this.

When I get up (whenever that is) I take 2, 10-mill Norco. “Mornings” are tough, and this helps. An hour later, I start my first walking session.

4-hours later, I take either 20-mill, or 15-mill, Norco (depending on how I feel).

Between this, and the next dose of Norco, I slip in a half-tab of Valium. This really helps, and because it DOES help, it tells me my pain is musculature in nature… which is also a relief in-and-of-itself… because I was severely nerve-damaged from the cervical issue. Because my Lumbar went so long without correction, I was worried there may have been nerve damage down there as well. Because Valium and Ambien HELP, this is a big relief.

4-hours later (usually sometime in the early to mid evening) I repeat (15, or 20-mill, depending on how I feel).

In the late evenings I have a choice (depending on actual time). Ambien (half-tab) or more Norco. The last two nights, I have chosen the Ambien. I take half a tab (say at Midnight). I get “immediate” relief just from the half-tab. An hour later, I take the other half-tab. SOMETIMES, I will take another half tab, and then I am ready to sleep. I sleep as long as I can… the longer the better, and start the next day.

During the “day” and through the evenings, I walk and stair-step. Every other day I do light leg exercises.

All totaled, I’m walking about 2 miles a day now. My stair-stepping sessions are now 5, up-and-down-non-stop, at least 3 (sometimes 4) per day.

Am I dependent on these med’s? You betcha I am. ONLY in the past several days has my quality of life come UP. I’m calling friends for the first time in many, many months (blue-tooth headset ONLY). I’m walking more, and doing constructive things around the house for the first time since Sept of last year. I’m vacuuming, cooking, cleaning, organizing. As I walk, I can SEE the future, FEEL the future. I can sense I am healing and getting better… for the first time. I think I had really BAD luck with Doc-A, and the psychological effects are just now coming to light and at this point I consider myself lucky to be away from him/her. I severed that tie and do not depend on anything whatsoever from this person. It may have been a clash of philosophies, I don’t know. I don’t want to think or send anything negative AT ALL. I just needed to get the story out, off my chest, and MOVE ON.

So that’s the deal. Thanks for listening.

Thanks, Dis. Your response was very helpful, and I TOO know how hard it is to sit and write this stuff, so I DO appreciate and value that you took the time to carefully respond to me. As I get better, I will do my best to return the flow, and try my best to help others as well!

Peace,

Paul


PS: We've been to Australia. The wife and I walked ALL of Sidney and at one time knew just about every block downtown in and around the wharf area. The most beautiful city on earth from land or air. I hope you like Americans! <smile>

[Pooka1]

Ouch. The silence hurts. Did I say something wrong?

No.

If, on the other hand it's just a slow board

Yes.

, or, you feel I'm too wordy and/or lengthy...

No.

I'm guessing based on your comments that you frequent much busier fora and newsgroups as do I.

I don't know about other folks but this forum is slower than the next one I read by at least an order of magnitude. It is slower by at least two orders of magnitude than certain newsgroups I read.

When I first found it, I thought that there must be some other site that has the "real" traffic on scoliosis. If there is, I can't find it.

What I have come to realize is there are just not that many people affected or how care to participate in a forum on the subject.

In re moderation, I don't believe in it. While this forum is technically a moderated one, it's hard to find evidence of it. It's functionally unmoderated.

Folks should be responsible not only for what they write but for what they read. It's a surprisingly tough lessons for some.

You are making good contributions to this place in my opinion and we are lucky to have you.

[Nancy Joy]

Hi Paul~~

I have been gone for a few days so just saw your post. The others said it well- you have done nothing wrong. I am really glad to hear you are getting relief now and feeling like you are gaining ground. That is the name of the game- 3 steps forward and 2 steps back!!

[Nancy Joy]

Susie~

Thanks for the encouraging comment. I felt rather silly!!

[LynnMarie74]

I am so tired of people saying "Oh, you're STILL on pain meds?" Seriously????So, just to ease my own mind, I'm conducting an informal survey. For those willing to participate, would you respond with the meds you were taking, how long you were on them, and if there was a 'weaning' process, how did that work?

I know it's too early to try to stop taking pain meds, but I'm beginning to get a little paranoid thinking maybe I'm wrong.

Oh, the other annoying question is get is "Oh, you're not back at work yet?" Grrrrrrrrrrrrr! I keep reminding myself they don't know anything about this surgery and recovery so just let it go.

Anything you would be willing to share would be great. Thanks!

I hear ya sistah! Back surgery is back surgery...its all the same! I explained to someone last week that its like have heart surgery. One you need your heart to live & you only want the best of thebest working on it , 2 there are several types of heart surgeries/procedures that can be done, from a minor ablation for SVT(which I have too) the close of the xtra electric pathways to help your heart beat more normal(slower) I didnt have this procedure done but just making a point. 3-there is open heart surgery, etc, etc.Unless you have Scoli & have had the muliti level fusion, most dont get it.


As fas as meds...I guess its too soon for me to put my 2 cents in as Im only 10 days post op. Im on 15 mg of oxicodone quick acting every 4 hrs, 10 mg of oxycone long release 2 x a day, Tylonol...I laughed too....hard actaully & made a smart arss remark but eh...its supposed to help the effects of the oxy. Im also on Valium 5 mg every 6 hrs, Gabatine for nerve pain 3 x a day, stool softner & finally....shhhewwww...iron to keep my blood count high. I have no clue how long I will be on all this crap but I just want to be comfortable, thats all really. Im sure my hubby will let me knw when he thinks I need to go on the show called "Invervention"!!! LOL hahahahahaha Kidding...but really tho, he keeps traack of everything for me.

Hope all is well,and dnt wrry about your meds. You will know when youre ready to come off of them!

Lynn

[debbei]

Lynn,

The iron could be another reason for your bloating. Are things a little better now in that area?

[LynnMarie74]

Debbe

Lynn,

The iron could be another reason for your bloating. Are things a little better now in that area?

A little yes...still cant wear my own pants,,,ughhh...BUT not as bad as it was before!! Thanks for asking!