Fifa's Surgery 11/10/14 with Dr. Buchowski

[leahdragonfly]

Hi Fifa (Rhonda),

Have you tried Miralax? It doesn't produce the liquid effect that Milk of Mag produces. I stayed on it for awhile once I was off pain meds and it was just right.

It sounds like you are really doing well, and I can tell from reading your posts you have made a whole lot of progress! As far as the stiffness/soreness you describe…I am really familiar with that and found that there was really no medication that helped with it. Movement was the best thing, even though it hurts at first. At 8 weeks I think I was just taking extra strength Tylenol 3x/day and a very occasional 1/2 Tramadol. I really don't tolerate narcotics well so got off them early. My surgeon's PA told me that you will come to a point in the first few months of recovery where you realize the narcotics don't help, and now I realize what she meant. For me frequent short walks and moving around helped a lot.

Keep up the good work! In another month you will be amazed to look back at your progress.

[susancook]

Fifa, Re: your husband not being great at cleaning and it is bugging you......do you have a good girlfriend that will come over and help? Don't be afraid to reach out for help. You would help your friends, right?

Re: poo. We all took it for granted before surgery, and for many of us, it was one of our biggest challenges!

You are a survivor!

Susan

[Lizardacres]

Fifa,

Your poop thread should be a sticky for the Surgical First Time forum, it was absolutely brilliant. But what a nightmare for you! You are sounding so much stronger, like you have taken charge of your recovery and no longer a victim of the side effects of the medications you have been taking. I agree with you about the valium. I have been on klonazepam for many years for muscle spasms and it is very similar to valium; same class of drugs and duration of action. It is definitely a doggy downer. A neurologist once tried me on a different drug in this class (can't remember any more which one), it was stronger but shorter acting. After taking it for only 24 hours, I became profoundly depressed. Even though I stopped it right away, I ended up on antidepressants to fix it. I only take 0.5 mg of the Klonopin daily now (it's about 10x the dose of valium so equivalent to about 5 mg Valium), which is a small dose. If I get into a round of terrible spasms, I can double the dose for a while and get away with it but I can't do more than that. I find this class of drugs to be very depressing. I think all post op patients should be told this and warned of the potential for depression from this class of drugs at high or even moderate doses.

But I think your plan to take a little of this and a little of that is a good one. The different methods of action of the different classes of drugs work synergistically to help. Unfortunately, you have to be brave and experiment as we all react differently to drugs. Only you can find the best combination. It's good you have a lot to choose from. Sounds like the gabapentin has been a plus. The key is to make one change at a time and increase and decrease dosages slowly to avoid withdrawal. If you come off a high dose of valium cold turkey, you can have seizures.

[fifa]

Oh my goodness, Fifa! You have been through the wringer! Thank you for writing the detailed descriptions of the poop issues. I'm so sorry you had to go through that, but it puts my constipation into perspective. I was getting worried about all the crazy positions I was putting myself in, just to get relief. I'm on a regiment of Lactulose & Miralax.

I'm so happy for your dad and for the peace of mind it gives you to have him home with your mom. I helped my mom (85) move in August. I worked hard to get her unpacked & to organize her garage. She kept telling me to stop, but I kept thinking it'll be at least a year before I can attempt any heavy duty stuff.

As for chairs, I put a 2" thick foam pad on the seat of my upholstered chair & one up & down for my back. It makes me sit more forward so that when I want to lean back, I'm not leaning as far. Tonight is my first outing other than church, so it'll be interesting to see what type of chairs are available at the home of our book club hostess!

I didn't want to take gabapentin & I can't remember why. The rehab dr talked me into a very low dose of 10 mg. I was on it for about 4 weeks. I didn't notice a difference before or after.

It does sound like a pain management dr will be the next best step for you. Those meds & their side effects need to be evaluated & coordinated to fit your specific needs! Being allergic to Tylenol knocks out a lot of options for you.

Take care. You've been through a lot, try not to measure yourself against where you 'think' you should be at this point in your recovery. You need to factor in all the bowel/tummy/medication problems that kept you from progressing. You'll get to where you want to be. We're all different & that's why this forum is so valuable!

Hugs & prayers, Peggy

Hi, Peggy -

You are absolutely the best and thank you for saying what you said about measuring myself against where I "think" I should be. That truly is a big problem for me. I know this was a totally different, MAJOR back surgery, but I keep thinking back to 1987 and where I was at eight weeks out, and it is depressing. Plus, and I really hate to say this in public, but my husband is taking great care of me but the house is absolutely filthy, and it is driving me crazy. I can't drive anywhere - can't really use my walker out of doors - and basically am just having a private pity party that I'm not enjoying at all. I'm finding I'm more able to be positive just having cut out the Valium, but honestly, trying to stay positive when I'm not feeling positive (for me) is like trying to smile through the pain and keep a stiff upper lip like I had to do preoperatively. It's exhausting.

It's nerve wracking and insanity-inducing to not be able to have a BM when you want, to not be able to sleep, to sit, to work, to walk.....sometimes I think I was crazy to have had this surgery, but I've read a lot of other people on this forum say the same thing (that they questioned their decision). I'm just impatient and nothing is happening fast enough for me.

I remember Ed saying something in a post about being in the hospital and getting really angry, and that a nurse calmed him down. I have to say that I'm having quite a few angry moments, too, probably not all medication related (although I do believe the Valium is to blame for most of the anger and most of the uncontrollable sobbing - I feel better since I stopped it). I know my "normal" self will come back to me someday, but I'm just tired of seeing the dog water dish empty and knowing I can't pick it to scrub it before I refill it. Honestly, mostly what it is is that I'm tired of asking for help....help that I know I need. I have to ask my poor husband for something several times and hour, and frankly, I'm sick of asking him and feel like he's probably sick of being asked. He's been very sweet and has gone above and beyond helping me. I just don't want to have to ask anymore. Hope that makes sense.

I didn't want the gabapentin, either, or the baclofen, and certainly not the Nucynta (the one that may make you cease breathing without warning and shouldn't be used if you have a paralytic ileus). LOL I probably sound like a paranoid freak, but I just can't believe the amount of medications I came home on, and every time I called with a problem (like constipation or nausea), then I got two or three more scripts. I have a VERY large shoe box (it's actually a box that a pair of boots came in) and it is FULL of medicine. I shouldn't be complaining, but I figured I'd come home on a pain, muscle relaxer, and a laxative. But four muscle relaxers? Three different pain pills? Now, I'll take responsibility for the laxatives. LOL I was only prescribed one stool softener, but after that first 5 1/2 hour of impaction after the ileus, I sent hubby to the store with a list after having done a whole lot of internet research. So, those 12 laxatives are all my fault (as is the prune juice).

I just said in a previous post that I hadn't had a BM since Sunday per my records, which may be wrong, but I took a dose of MOM last night and took another a couple of hours ago, and just a fairly liquid BM. The MOM is all I'm going to use from here on out. I think if I stay on an every-third-day regimen, I'll be fine. I've found that it is easy for me to get too much of it. I've had two liquid BMs this morning and feel like I could go again pretty soon. Life is all about finding that balance, isn't it??? LOL

Hubby just got back from the grocery store. I had him buy some pear juice. I would like to try it after reading several posts here. I love prune juice and think I could easily manage my bowels with just a small glass per day, but the acid is just killing my stomach. The pear juice may do the same thing, but I did want to try it. I'll take it easy. LOL

I'm hopeful to get off the pain meds entirely and just use muscle relaxers when needed, but we'll see. I'm doing pretty well right now, but back to moving really slowly. With the drugs, I was getting out of bed easily and going up and down the stairs pretty easily, but I've noticed now I'm moving slower. Honestly, I don't care about that. I just want my sanity back. If I can get my brain unloaded from all the chemicals, I feel like I can yoga/meditate again and push through it. The really rough postop pain has let up quite a bit. What I have now is best described as soreness/aching/stiffness. Oh, I have searing pain if I move the wrong way, but what I have right now seems manageable. I may be deluding myself - the Percocet and oxycodone and everything else is probably still in my system. We'll see.

I hope you have a wonderful time tonight and can get comfortable. I pulled a foam cushion out of an old wooden chair and put it in the back of my recliner, and that seems to have done the trick. It will be nice to be able to leave this room after eight weeks and go look at some other part of my filthy house, as opposed to staring up at my lovely 1970's popcorn ceiling. Swear to Pete, when I get better, I'm stripping the popcorn off all the ceilings in this house. Geez.

Talked to my mom and things are going well with my dad, so that makes me very happy. There are still a lot of things at the old house that need to be moved, and the house desperately needs to be cleaned, but she doesn't want anyone except one of the four of us to vacuum it because of the state it is in. I'm fairly certain my old bedroom hasn't been vacuumed in probably 15 years (seriously) - it was just used for storage when I moved out. Anyway, she's so embarrassed that she won't hire anyone to come clean it. If she's looking at me, it will be April before I try any of that stuff, and believe me, I'll be vacuuming my own hideous house before I take on someone else's. Selfish, I know, but necessary. (smiley)

Lots of love and hugs to you. Again, I so appreciate what you said about measuring myself against where I "think" I should be. Honestly, I'm just upset because I don't feel like picking up a vacuum yet or doing anything other than resting and doing a little bit of work (from home in bed) so I can get a paycheck. That BMP money isn't going to come easy. LOL I still haven't gotten a bill for it, but I'm sure I will....as the worst possible time. LOL

You take good care of yourself. I can't believe how well YOU are doing after what you've been through. You had twice the fusion and instrumentation and hospitalization that I had two weeks before me. Do yourself a favor and have someone else do the driving, okay? Don't run over any trees on your way out of the driveway!!!! LOL

Talk to you soon. Thanks again for your support!
Fifa

[fifa]

Hi Fifa,

Speaking of chairs... Do you have patio furniture? My favorite chair immediately post op was an old and ugly patio chair. It had arm rests, tall and straight back. With an addition of a cushion, it was the most comfortable chair for me back then. If you don't have something like that, may be you can borrow it from family or friends? Basic kitchen chairs were fine too.

Hi, Irina -

It's funny that you mention this at this moment in time. I got up a couple of hours ago (I'm having some trouble with insomnia) and decided to do a couple of small things around the house. I have this beautiful nearly new fabric recliner that I bought just for this purpose, which then my doctor's nurse told me I couldn't use because it was too "slopey," for lack of a better word. The best way to describe what they want me sitting in is to keep my body in a perfect "L" shape. Back straight up against a straight back of a chair, bent just at the hips with the feet either on the floor or on an ottoman. Just keeping the body in an L shape. So anyway, I made some coffee and I noticed an antique Ethan Allen chair with two hard cushions i it (one for the bottom and one for the back) - it's a wooden chair with arms and two cushions. I had tried every combination to make that chair work for me because it is an L shape and I thought it would work, but I could never get comfortable in it. Anyway, I took the back cushion out of it, which is just an "old school" piece of fabric-covered foam about 2-3 inches thick, and I put it in the back of the recliner. It is PERFECT! I just need to get the hubby to drag the ottoman over in front of it and I think it will be great. I'm not doing so well with my legs "dangling." Even sitting on the toilet for a few minutes makes my legs feel like they are going numb, and then after I lie down to try to "un-numb" them (sorry - that's not a word LOL), then they begin to ache and ache for literally hours. It is the strangest thing.

Unfortunately, we have kind of a modern house, and our kitchen chairs are actually padded leather stools that go with a bar-height round table. Hope that makes sense. The chairs are comfortable, but they have no back on them at all. I sat on one the night my hairdresser came to shave my head (since they shaved only parts of it to attach the halo for the fusion), and I had to take multiple breaks.

Thanks for thinking of me! All of our patio furniture is sloped, too (as in adirondack chairs). What's with my family? Must every darn thing be SLOPED????? LOL

Thanks for the post - hope you are well.

Hugs,
Fifa

[fifa]

Fifa,

Gabapentin on top of helping with nerve pain is also helpful for mood. Only problem with it -- I tried it briefly for nerve pain unrelated to the scoli is that it made me feel very sleepy. Not everyone experiences this though.

Maybe try it at night? I don't think there's extended release gabapentin, so you could try at half dose initially and see how that works. It might help keeping the ups and down of emotional wave you are experiencing a bit smoother.

In terms of zofran, it's works so well for nausea and when I was taking it regularly I had to -- because of a chemo drug making me nauseous quite frequently. The chemo drug dehydrated me and zofran gave me constipation on top of that. I'll avoid zofran now if there are other choices. I figured at the hospital I wasn't going to risk it since I was already experiencing sluggish bowels and haven't had a bowel movement when the nausea hit.

Good morning!

As of last night, I ditched the Valium. Yes, I'm well aware that I'm supposed to wean myself off of it (they had me on 10 mg tabs four times a day). I wasn't taking it that often, plus 10 mg tabs to me is quite a lot. All I've ever had is 5 mg tabs. Anyway, I was also prescribed Baclofen and gabapentin (I don't remember the milligrams on either med). The dose on the gabapentin/Neurontin, though, was to take one capsule on the first day, two on the second day, three on the third, etc., until I had worked my way up to nine capsules daily (that was my upper limit). Since I was prescribed four different muscle relaxers (baclofen, gabapentin, tizanidine, and Valium), I decided to try a gabapentin yesterday since I had ditched the Valium. I slept for 12 hours straight after I took it, but I have to tell you, I felt pretty great. I'm also backing way off on the Percocet. Frankly, I'm backing off everything except the Milk of Magnesia. Unless my records are wrong (I may not have written down my last BM), it appears the last one was Sunday. So, once again, I've probably let that go too long. Took a dose of MOM yesterday morning and just took another one about 15 minutes ago. I hadn't really taken one before yesterday because (a) I was finding that every time I had to urinate, I also was pooping a tiny bit. I realized yesterday that the tiny poops had stopped, so it is time to get back on the MOM and get things going again. I had hoped that a daily or every-other-day dose of MOM would keep me regular, but according to my records, that hasn't happened. I do feel right this second that I could go soon. I just made a pot of coffee - that is my usual laxative (LOL). Oh, but it worked best with a couple of cigarettes, which I obviously can't have anymore either.

Anyway, I'm anxious to try the gabapentin today without the Percocet in my system and see what happens. I can tell you that I feel very very tired yesterday and today, and my back is sore, but in a manageable way (much like I managed it preoperatively). The gabapentin almost immediately took away the horrible leg pain/muscle spasms that I was having - much better than the Valium did.

I also ordered up a cane from Amazon just to sort of help me outdoors with stability. My neighborhood is 50+ years old, and the sidewalks are all cracked up and "heaped up" in places, and trying to walk out there with the walker is just too much. I end up carrying the walker across the potholes and can't push it over big cracks in the sidewalk, so it really is more of a burden outside than a help. I'm not terribly unstable - I just feel like I want something to hold onto when I walk. The cane should be here today, so I'm anxious to try it. The weather is supposed to warm up here in the next couple of days. I think getting outside and getting some exercise will help a lot.

The last thing I can say is that nearly as soon as I quit taking the Valium (probably 12 hours had passed since my last dose when I decided to put it away), the depression eased up a little and I haven't have a crying spell since. Also, the weird urinary slow stream/intermittent stream is much better, too.

I think the Valium was evil and did me more harm than good. Will keep you all posted. And, if it seems like I'm having the withdrawal symptoms mentioned on Google, I'll take a half a tablet and keep trying to wean away from it. I printed out the withdrawal symptoms.

I'm with you on the gabapentin...maybe that is what improved my mood, but I tell ya, I got pretty dizzy with it and immediately sleepy. I think if I could get used to having it in my system, it would be very helpful. I doubt I'll go to two tablets tonight as directed, but just take one until it seems like it isn't bothering me so much, and increased from there. I just can't been sick, sad, moody, and sleepy all the time right now. I started back to work on Monday (only up to 20 hours per week at my discretion with seven days a week to get the hours in) and I really can't sleep for 12 hours a day and get my work done, too.

Hang in there - hope you are doing well. You've had some great advice, and I thank you!

Hugs,
Fifa

[PeggyS]

Oh my goodness, Fifa! You have been through the wringer! Thank you for writing the detailed descriptions of the poop issues. I'm so sorry you had to go through that, but it puts my constipation into perspective. I was getting worried about all the crazy positions I was putting myself in, just to get relief. I'm on a regiment of Lactulose & Miralax.

I'm so happy for your dad and for the peace of mind it gives you to have him home with your mom. I helped my mom (85) move in August. I worked hard to get her unpacked & to organize her garage. She kept telling me to stop, but I kept thinking it'll be at least a year before I can attempt any heavy duty stuff.

As for chairs, I put a 2" thick foam pad on the seat of my upholstered chair & one up & down for my back. It makes me sit more forward so that when I want to lean back, I'm not leaning as far. Tonight is my first outing other than church, so it'll be interesting to see what type of chairs are available at the home of our book club hostess!

I didn't want to take gabapentin & I can't remember why. The rehab dr talked me into a very low dose of 10 mg. I was on it for about 4 weeks. I didn't notice a difference before or after.

It does sound like a pain management dr will be the next best step for you. Those meds & their side effects need to be evaluated & coordinated to fit your specific needs! Being allergic to Tylenol knocks out a lot of options for you.

Take care. You've been through a lot, try not to measure yourself against where you 'think' you should be at this point in your recovery. You need to factor in all the bowel/tummy/medication problems that kept you from progressing. You'll get to where you want to be. We're all different & that's why this forum is so valuable!

Hugs & prayers, Peggy

[Irina]

Hi Fifa,

Speaking of chairs... Do you have patio furniture? My favorite chair immediately post op was an old and ugly patio chair. It had arm rests, tall and straight back. With an addition of a cushion, it was the most comfortable chair for me back then. If you don't have something like that, may be you can borrow it from family or friends? Basic kitchen chairs were fine too.

[fifa]

Fifa,

Gabapentin on top of helping with nerve pain is also helpful for mood. Only problem with it -- I tried it briefly for nerve pain unrelated to the scoli is that it made me feel very sleepy. Not everyone experiences this though.

Maybe try it at night? I don't think there's extended release gabapentin, so you could try at half dose initially and see how that works. It might help keeping the ups and down of emotional wave you are experiencing a bit smoother.

In terms of zofran, it's works so well for nausea and when I was taking it regularly I had to -- because of a chemo drug making me nauseous quite frequently. The chemo drug dehydrated me and zofran gave me constipation on top of that. I'll avoid zofran now if there are other choices. I figured at the hospital I wasn't going to risk it since I was already experiencing sluggish bowels and haven't had a bowel movement when the nausea hit.

Hi, there -

I think I'm going to try it tonight - cut the doses of everything else in half. I'll do a bunch of research before that happens, but I'm pretty sure i was told i could add the gabapentin to all the other prescriptions the ortho group had prescribed (Percocet, Valium, Tizanidine, Zofran, and a couple of others I didn't even fill). Maybe that's the answer. I have to do something. I feel like I'm losing my mind here. Seriously. I know tons of people who would pay good money to feel this out of it, but I'm not somebody who likes to be out of control, so I'm just no longer "enjoying" being pain free if it also means I'm psychotic/neurotic at the same time.

I'm only taking the Zofran as needed (which is how it was prescribed), so maybe if i stay away from the acid food and the Percocet with Tylenol, I won't need it.

Will keep you posted. Thanks! You had me at "helpful for mood." LOL

Fifa

[fifa]

Sorry i forgot to add this. I found out not to force food. Basically not to eat unless I was hungry. It avoids nausea . I use to just throw up the food that would just sit in the stomach. Then eat when I was hungry and I would be alright. Also, I just read on my paperwork, that fentanyl can cause urination problems. Maybe other pain meds can too.

Hi,

Thanks, Jackie. I'm with you on not forcing the food. Everyone on here will probably tell me I'm wrong, but I'm barely eating. I just can't. I'm drinking a couple of large glasses of soy milk, which has lots of calcium and protein and other good stuff. I'm eating those little individual servings of fruit (Dole sliced peaches, pears, and something "cherry," I don't remember the name). I've had some frozen vegetables called "steamfresh" maybe by green giant - I nuke a package of peas or broccoli and can get through about half of one of those packs. I haven't found any kind of meat that sounds good to me at all. Hubby got me some ham salad and some chicken salad, but both caused instant stomach acid. I've been eating small salads. Tried one with vinegar and olive oil (my favorite), but again, the vinegar was instant stomach acid. I used ranch dressing on the other one and did much better. What the hell??? Oh, and I know I've mentioned it before, but Bob Evans makes these heat and eat real mashed potatoes, and I've been living off those. They are warm and comforting and don't mess with my stomach. I have a pack of sweet potatoes in there that I might go heat up right now.

I'm not on Fentanyl. I was hoping they would send me home on a patch, but they didn't. Probably a good thing.

You know, I just want one good pain pill and one good nerve pain pill and that's it. I can handle the rest. This being so drugged is just ruining me. I just yelled at my wonderful husband again - that tends to happen when it has been eight hours without one of the three I'm taking (don't know which one) - Percocet, Tizanidine, or Valium 10 mg. I take these supposedly every six hours. I was trying to lengthen the time between doses, but I get either completely irrationally angry or cry like a baby.

How do/did you all wean off this crap????

Fifa

[fifa]

Hi Fifa, I hope each day brings improvement. Pain management is great. It seems that these doctors understand medications and the side effects so well. They also can offer other suggestions for pain. I found increased walking was part of the key to getting some of this under control. It increases good feelings and helps to relax the muscles. I too lost a lot of weight and only part of the weight came back through time. I mean years. Also even forcing yourself to get out each day, helps with mood and that helps everything else.
I am glad your father is doing well, but cervical fusion is easier than these long fusions of the spine. The cervical spine only holds up the head as compared to holding up the whole body. In the cervical they put these little plates and screws. The incision is smaller also. I had my cervical done after the spine . 6 weeks ago , I had the cervical increased one level. So I am still adding on to the fusion basically it is c3 to pelvis. I hope everything continues to improve for both of you.

Thanks, Jackie - you're very kind. (smiley) You are right about the cervical fusion being easier, but I can't help be jealous of his nearly pain-free status. LOL I'm just grateful he's still with us and not paralyzed. He really took a heck of a fall - right through the glass shower door, and wedged himself between the tub and the toilet. Could have been so much worse.

I'm hoping the easing of that stress will benefit me, too. I can't tell you what it felt like to leave my two 80-year-old parents alone in that hospital room while I headed off to St. Louis for my own surgery, knowing full well it will be a year before I can help them finish their move or do anything strenuous for them to help them. It was awful. And, since my mom doesn't drive, rather than stay here at my house (a mile from the hospital where dad was), she had relatives driving her back and forth daily from their home town, an hour away. It just wasn't easy to leave them, and I wanted to cancel my surgery so badly, but we took a family vote and I lost three to one. LOL

It's two below zero right now, but I'm heading outside for a bit to see if I can see the comet that is supposed to be out there somewhere. It has been way too cold for me to walk outside much, but I really have to get going on that.

Thanks again - big hugs to you!
Fifa

[fifa]

Hi Fifa!

Unfortunately you are probably in some terrible feedback loops. Like, the Zofran causes terrible constipation, constipation causes nausea, and then going on new narcotics for the first time also causes nausea, which makes you need more Zofran. ANd straining to go the bathroom flares up the back pain, etc.

So I can just speak anecdotally, but I'll tell you what I experienced.

At the start, I was on Oxycotin (this is the extended release) twice a day 20 mg each time. And I was on Dilaudid 4 mg every 4 hours for the break out pain and Flexeril (a muscle relaxer). I was spaced out beyond belief! I looked at my pain journal and at 8 weeks I was still on Dilaudid and Oxy, but off the Flexeril. And I was weaning off of everything, but very slowly. I spaced the Flexerils out so that instead of every 4 hours, it went to every 6 hours, etc. I starting cutting down the Oxy from 20mg, to 10 (can't cut these extended release in half though). And so on. It went this way for me for a while. I went off the Oxy first. And then I was still on Dilaudid for months, but at tiny doses. I had replaced most meds with Tylenol.

So Tylenol causes you nausea? I've never heard of Tylenol by itself (without codeine or in Percocet) causing upset stomachs... I know it affects the liver. Is it possible you are allergic? Might be worth exploring. Maybe someone else could weigh in on this. I just wouldn't want you to go on it if you were having some strange reaction. Percocet makes me very nauseous, however. All the narcotics did when I first went on them. And after months of being off them, I took Oxy and Dilaudid (separately) for bad pain days and both made me nauseous.

Ok, sorry to babble. I just empathize with the nausea because I have a very sensitive stomach. I will say that once I was on the narcotics for a while, my stomach problems went away, but they would flare up every time I had to cut the dose. It sucks, but tapering up and down helps. This was only temporary, too, however.


I had persistent pain after the surgery for months. I still do. I have trouble sitting. It's some sort of nerve problem. So that's why I went on the gabapentin. I would say first find the pain killers (narcotics) that work for you, becuase you still have surgical pain. And if you need to supplement the narcotics, try to decide if your pain is muscle related or nerve related. If its spasms, the muscle relaxers would help more. If it's numbness, tingling, sharp pains, burning, then maybe gabapentin is worth a try. If you do go on gaba, start low, and build up a tolerance. It can cause slight stomach problems and dizziness, but it you increase slowly you will be ok. And the side effects go away with time. It is much easier tolerated then narcotics.

I hope that helps. Please feel free to throw any more questions my way. I'm sure everyone finds unique combos for them.

Oh, and thanks for the good wishes! My xrays look great, mri looks fine. It's one of those catch-22's. I'm happy not to have obvious problems showing up, but frustrated that my pain source is indeterminable at the moment! I think the problem is my SI Joint, and I'm getting an injection there soon.

_springchicken

Hi,

Thanks for your reply. (smiley) I'm SO happy to hear that your follow-up went well. I think you're right - it sounds to me like it is the SI joint and the injection should help big time!

The trouble with Tylenol, as well as a lot of medications and a lot of food, too, is that I get what I call "acid stomach." Shortly after taking a Tylenol, it feels as if the lining of my stomach is being eaten away. I have a lot of problems with acid reflux and my go-to drug used to be an over-the-counter called Pepcid Complete. It has the Pepcid component in it (the longer-acting stuff that people with reflux take every day for weeks) plus it has either calcium or magnesium (or both) which is basically what Tums or Rolaids has in it. So, with Pepcid Complete, you get the quick anti-acid action of a Tums plus the long-acting benefit of Pepcid. I've lived on the stuff for several years. I've tried several two-week (I think that's right) courses of Zantac, Pepcid, and all of that type of over-the-counter stuff. It does help me and I can eat what I want while doing that. But, you're only supposed to take it for a couple of weeks at a time. After I stop taking it, in a few days, I'm right back to "acid stomach" again, so I turn back to the Pepcid Complete.

So, that's my trouble with Tylenol. It just causes increased stomach acid, which ends up eventually in my throat. I've elevated the head of my bed (can't believe this would help, but helped a LOT) and am trying to eat low-acid foods. Truly, I've probably just wrecked my gut taking Motrin for 20 years. l had a colonoscopy and upper endoscopy in April, and I have gastroesophageal reflux disease and a hiatal hernia, so lots of stuff bothers my stomach. Since surgery, I haven't been able to tolerate the acid from the prune juice, and I LOVE prune juice. My stomach was already problematic, and I think all this medicine in the last two months has wrecked it even further. About a month ago, I vomited after eating a slice of whole wheat bread with olive-oil margarine. I'm probably going to have to get back on a 14-day course of Pepcid to try to fix this (yay.....more pills!). LOL

Oh, and by the way, my mother is allergic to Tylenol. We also found out the hard way a year ago in July that she is also allergic to NSAIDS (Aleve). I gave her an Aleve in a restaurant and within five minute she went anaphylactic with complete circulatory and respiratory collapse. I broke all of her ribs giving her CPR. And, just to mention my faith in the medical community here again....the pain medicine they discharged her on for the rib pain? Tylenol with Codeine. Not so LOL - at least I was there when they were going over her discharge instructions. Her admitting physician actually got mad because he had to walk back across the street and write another script for a different narcotic....like he didn't remember her reason for admission? I swear to Pete.

Anyway, I plan to taper off everything and I guess stick with the Percocet and Zofran (and start a 14-day course of one of the acid reducers) since soon enough, Tylenol will be my only option for pain. What I wouldn't give for a couple of Motrin right about now. And, you are right - I am stuck in a feedback loop that I'm not sure how to get out of. Everyone seems to be having good luck with the Neurontin. I'd like to try it but I'm not going to add it in to everything else I'm taking until I drop one or two other things.

I feel lucky because honestly, the postop pain is less than the preop pain, so I'm grateful. There are just a whole lot of things I have to relearn now, like how to sit for more than a couple of minutes. That's been another big problem - there is nowhere comfortable to sit in my house. The furniture is all too low and squishy, the backs of all my chairs are sloped...my most comfortable spot is in bed, and I'm spending way too much time back here. (smiley)

Thanks again for your helpful reply! Big hugs!
Fifa

[green m&m]

Fifa,

Gabapentin on top of helping with nerve pain is also helpful for mood. Only problem with it -- I tried it briefly for nerve pain unrelated to the scoli is that it made me feel very sleepy. Not everyone experiences this though.

Maybe try it at night? I don't think there's extended release gabapentin, so you could try at half dose initially and see how that works. It might help keeping the ups and down of emotional wave you are experiencing a bit smoother.

In terms of zofran, it's works so well for nausea and when I was taking it regularly I had to -- because of a chemo drug making me nauseous quite frequently. The chemo drug dehydrated me and zofran gave me constipation on top of that. I'll avoid zofran now if there are other choices. I figured at the hospital I wasn't going to risk it since I was already experiencing sluggish bowels and haven't had a bowel movement when the nausea hit.

[jackieg412]

Sorry i forgot to add this. I found out not to force food. Basically not to eat unless I was hungry. It avoids nausea . I use to just throw up the food that would just sit in the stomach. Then eat when I was hungry and I would be alright. Also, I just read on my paperwork, that fentanyl can cause urination problems. Maybe other pain meds can too.

[jackieg412]

Hi Fifa, I hope each day brings improvement. Pain management is great. It seems that these doctors understand medications and the side effects so well. They also can offer other suggestions for pain. I found increased walking was part of the key to getting some of this under control. It increases good feelings and helps to relax the muscles. I too lost a lot of weight and only part of the weight came back through time. I mean years. Also even forcing yourself to get out each day, helps with mood and that helps everything else.
I am glad your father is doing well, but cervical fusion is easier than these long fusions of the spine. The cervical spine only holds up the head as compared to holding up the whole body. In the cervical they put these little plates and screws. The incision is smaller also. I had my cervical done after the spine . 6 weeks ago , I had the cervical increased one level. So I am still adding on to the fusion basically it is c3 to pelvis. I hope everything continues to improve for both of you.