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

[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

[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

[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]

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

[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.

[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

[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.

[Irina]

Hi Fifa,

May be you can hire a house cleaner, if money allows? I never had one and hired a cleaner before the surgery because I didn't want my husband do it. Plus, I would not be happy with the way he cleans, anyway. I thought I would keep my cleaners for a year after the surgery and then start doing it myself. I still have my cleaners almost two years out. I am perfectly capable of cleaning by myself, but I got spoiled and don't want to do it anymore. These are money well spent, and you'll be helping someone by giving him/her a small job.

[fifa]

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

Hi, Susan -

Yes, I have several great girlfriends who would be more than happy to come over, but I'm embarrassed to ask for help because my husband works from home, so it doesn't seem "fair" to ask for help for something that we should be doing ourselves. In the next day or so, once I get some of this mess picked up by myself, I'm going to hire a Merry Maid or someone that doesn't know us to come over. That's not to throw hubby under the bus - he is here working during the day and I started back to work very part-time from home last Monday. Also, just like other people I know who have housekeeping help, they all pick up and straighten up before the housekeeper comes over. Guess lots of people are embarrassed by the messes they all leave. LOL

Yes, the house right now is my biggest challenge. I know that, come springtime, keeping my fusion and fixed pelvis out of the yard is going to be an even bigger challenge. I need to get one someone's list for help right now. If I wait until closer to spring, all the regular slots will be filled and no one will have time to fit us in, and I won't be able to stand all the perennials trying to come up through a foot of leaves (we live on a pretty heavily wooded lot).

I think what bothers me most right now is just the loss of independence. My whole life, I've never asked for help from anybody for anything. Sure, I've hired a tree company to remove giant trees, hired a guy to pour concrete, a guy to tile our basement, etc., but I would never consider a yard worker or a housecleaner. I even Googled how to do plumbing and can do most of those jobs myself, or I could. For someone like me, having to hire someone to clean my windows feels like failure on my part. Maybe I'll be able to do things myself one day, but right now it just makes me sad and quite angry that I can run the damn vacuum by myself. Maybe everyone goes through this - I don't know.

I have a very hard time right now focusing on the positives and eliminating the negatives, or at least finding solutions for them. My husband is doing so much right now that I hate to ask him to do anything else. I'm still trying to get over the fact that he had to give me enemas and insert suppositories for me. We've been together for 25 years, and we both use the bathroom behind closed doors. We don't pass gas in front of each other. Yes, we are strange.

This has been very hard on me mentally. My biggest motivator in life so far has been someone telling me "you can't." I take that as a challenge and then try to prove them wrong. Now, I'm in no position to do this, and I don't know how to handle it. Again, a lot of what I perceive as my negative attitude, I believe, is all the medicine.

I will say that I started gabapentin a few days ago and it really seems to be helping. I'm to take one on day one, two on day two, etc., until I've reached my max of nine pills on day nine. On Saturday, I slipped off the end of the bed (a fall of just a couple of feet) and landed flat on my butt with my right leg underneath me. My husband was out walking the dog, so I was like a turtle on its back. It took me 45 minutes of maneuvering (yes, there was some bending and also some twisting), but I finally got back up to where I was able to pull myself back into the bed. I took a Percocet, which did nothing, and then I took a baclofen and a tizanidine. Still nothing. My muscles on the left side were spasmed from my left shoulder-blade down to my left heel. So, I took a gabapentin. I started feeling a little better after a couple of hours, but still hurting so bad, so I took my second gabapentin (it was day three - I could have had three of them but up to this point have only been taking one per day). I can't image taking NINE in a day. Anyway, I took the second gabapentin and curled up in bed. Needless to say, I lost the entire day yesterday. I slept for 16 hours straight and woke up about 9:00 p.m. last night (have been up ever since). I woke up feeling great. This is the second time now I've used the gabapentin, and I woke up feeling great both times. I'm going to try to wean from everything but that and only try to use one or maybe two (if I'm desperate) per day. They seem to be working well for me. The fusion pain and surgical pain seems to be pretty tolerable, but the nerve pain is something else.

I finally have some hope, especially now that the Valium is out of my life. I have a hard time with meds - a lot of them don't affect me the way they are "supposed" to and/or like they affect other people. Meds that put other people to sleep will speed me up to where I can't sleep for days. Stuff that makes other people "speedy" will put me out for a day. So, I know it is the same for everyone, but the meds are a difficult balancing act...trial and error.

So, I just took a gabapentin because the nerve pain is starting to get to be more than I can handle. I'm going to take a hot shower and crawl into bed. I have a hard time (stiffness) if I spend more than an hour or so in bed in one position. I'm on my back a LOT when I'm in bed, and then I'm terribly stiff when I try to get up (part of the reason I slid off the bed Saturday). The worst stiffness is first thing in the morning when I've been in bed (in the same position) for several hours. I've heard others complain of morning stiffness, and they ain't lyin'!! (smiley)

Sorry for the long response to your question. I hope to get some help in here soon or just not leave the bedroom anymore, which is the cleanest room in the house.

Talk to you soon - hugs to you!
Fifa

[fifa]

Hi Fifa,

May be you can hire a house cleaner, if money allows? I never had one and hired a cleaner before the surgery because I didn't want my husband do it. Plus, I would not be happy with the way he cleans, anyway. I thought I would keep my cleaners for a year after the surgery and then start doing it myself. I still have my cleaners almost two years out. I am perfectly capable of cleaning by myself, but I got spoiled and don't want to do it anymore. These are money well spent, and you'll be helping someone by giving him/her a small job.

Hi, Irina -

I couldn't agree more (see post below to Susan). I wouldn't be happy with the job my hubby did, either, although I did stop berating him years ago for not doing it "my way." It led to a happier home to just do those things that were unsatisfactory in my eyes myself. There weren't many, but I'm VERY particular about the bathroom and the kitchen in particular. I wash my dishes (or rinse them, at least) in water so hot it burns my hands. Been doing it that way for so long that I barely feel the burn. I just feel like they get sanitized better that way. Hubby washes and rinses in lukewarm water, which makes me squeamish. So I have a tendency to re-wash things before I use them. He also has a tendency not to notice that the toilet bowl needs to be cleaned, and that COMPLETELY grosses me out. So, rather than b*tch at him, I do it myself. In fact, that is the rule in this house that has led to a pretty happy marriage..."if it bothers you, then you clean it up." Unfortunately, that little agreement didn't come with any caveat for what happens when one of us is disabled. I'll add that to to the prenup for husband number two, I guess. LOLOL

Big hugs - hope you are feeling great!
Fifa

[fifa]

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.

Hi, there -

I also think this particular post of yours should be added as a sticky. I, for one, didn't realize that the meds could be trial and error at all. I just did what I was told. We came home with SO many prescriptions, each with 90 or so pills, and I took every one of them as prescribed. Those were just the scripts from the ortho group at Wash U. I had a script here that my primary care physician had written for Nucynta, but after we Googled it and read some of the side effects, we refused to use it (something about "may make you stop breathing" and also "should not be used if you have a paralytic ileus," which I was discharged from Barnes with, so not knowing if it had completely resolved, we just skipped that junk. Anyway, we had all of these prescriptions, "take this every four hours, take this every six hours, etc." My poor husband had an alarm set so he could give me every pill exactly when it was due. I never once thought about "gee - maybe I don't need this oxycodone right now," I just took whatever he handed me. He kept a log of all the meds and combined the ones that could be combined. So, whatever the Valium dose was (one every four to six hours, maybe?) I do know that it was a 10 mg tablet.

Yes, I should not have stopped taking the Valium cold turkey, but I had been skipping doses for probably a week before I just stopped it. No seizures so far and truly, I don't miss it. The uncontrollable angry outbursts and uncontrollable sobbing stopped almost immediately (not that I don't still cry - I just usually now have a reason). LOL Anyway, I had a feeling (after Googling) that it was the culprit. Plus, I just had to let some things go because I had four bowel impactions that took forever to remove manually/digitally myself, an I just could NOT go through that again. If anyone had been in the house with us, they would have sworn I was in labor, and that is pretty much what it felt like. (frowny face).

I'm glad the clonazepam works for you. Valium (to me) is just evil. But, as I said above, my body just reacts differently than other people's bodies, or so it seems. Something that would put you out might keep me up for 24 hours, and vice versa. My husband is the same way, but the opposite of me. He can take a Sudafed and go to sleep for a whole day - I would be up running around like a crazy person. We're strange. LOL

Yes, I think the key to pain management is just trial and error. We should call it "practicing medicating." LOL Letting go of one thing at a time (weaning, of course) or adding one thing at a time, I think, is the way to go. Eventually, I think a person will hit on the right combination.

All I know is that there is no way I could have worked had I continued the regimen I was prescribed when I left Barnes. Also, this is week #9 starting today, and I just started the gabapentin that I came home with. I can't imagine being on everything I was on plus nine of those a day by now. I don't think they did a bad thing prescribing all of this - I think they think most of their patients have already been on some kind of drug management/pain management (whatever you want to call it). The ortho group here in town only gives scripts for really high-dose Motrin and Flexeril. Years ago (when I did transcription for them), I was told by one of my coworkers that if you were a fat smoker, they considered you "addictive" and wouldn't give you a narcotic. I can tell you that they never gave me one until four years ago when the second facet joint broke, so my spine was basically completely broken in that area. They scheduled me for emergency surgery because my spine was unstable. That's the first time since I had surgery in 1987 that they gave me anything other than Motrin and Flexeril for my back. I always found it ironic that they would schedule me for an epidural (or caudal) steroid injection or suggest surgery, and then send me home with 800 mg tabs of Motrin and some Flexeril, as well as six or eight weeks of physical therapy that was an SOB when you're in that much pain. So, I figure the Wash U folks thinks you've already been on every med under the sun, and that's not my case. All I've used in the last four years is a buttload of Motrin and Lidocaine patches (and yoga and meditation). So, all this stuff I came home with, in my opinion, is way more than I'm used to and WAY more than my brain can handle.

So yes, trial and error is the key here, and I couldn't agree with you more. This is a really smart idea and should be a sticky.

Thank you - huge hugs to you!
Fifa

[fifa]

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.

Hi, Gayle -

No, I haven't tried Miralax, which is surprising to me - I have a whole shelf full of laxatives, suppositories, enemas - you name it. LOL Yes, definitely part of the problem is my lack of movement, most of which (I believe) was the Valium. I seriously had no will to even get up to shower. Zero energy, zero motivation - just depression that "this is the way I'm always going to be and I'll never get any better," uncontrollable angry outbursts at my poor dear (very tolerant) husband, and uncontrollable sobbing for hours for no reason. The Milk of Magnesia every third day (two tablespoons) seems to be the right balance. I had my husband buy some pear juice - I read the pear juice thread, so I've been warned. LOL The acid from the prune juice was killing my stomach, but now that I think about it, that was before they prescribed the Zofran, so maybe it wouldn't be so bad anymore. I'll have to try it. I prefer to treat things naturally if I can. Prune juice and All Bran used to take care of any constipation I ever had (oh, and a banana a day). My stomach has been so screwed up, though, I have hardly been able to eat anything.

The worst time of day for me is first thing in the morning. I wake up so stiff I can barely get out of bed. I'm hoping that gets better. I've noticed that if I stay in any position for a couple of hours, I get pretty stiff. I don't remember (or can't) roll over on my side at night. I go to sleep on my back and typically wake up on my back. But, if I spend several hours on my side, I have the same problem, so it doesn't seem to matter. The first thing I do in the morning is go to the bathroom, and I have just a terrible time getting down to the toilet - so painful. I walk around a bit afterward, which seems to help. If anyone has any suggestions, I'd love to hear them.

You're right - I'm at the point where the narcotics don't help very much. Frankly, they never did, really. In my opinion, they just "shut off" the part of your brain that cares that you are in pain - they don't make the pain go away. Hope that makes sense. You're still in the same amount of pain, but you no longer care. The muscle relaxers and nerve medicine is what is helping the most right now. I was three inches shorter on my right side than my left - to the point where my right ribcage was sitting on my pelvis. When I asked our ortho nurse, Megan, how they stretch those muscle three inches in a matter of hours, what she said was, "you're going to wake up and hate us, and you're going to hate us for a realllllllly long time." LOL So, I think things are still stretching and angry about having to do so. My chief complaint was unbearable rib pain on the right side from the sternum to the pelvis, and I'm happy to report that this particular pain went away as soon as I woke up from surgery. So yes, I'm seeing benefit and I know I'm improving. I just wanted to be "better" by now. I'm awfully impatient.

I'm worried about what I'm going to do when they take the meds away. Tylenol REALLY upsets my stomach, but the Zofran that they prescribed has helped me tolerate more foods (I've been eating next to nothing because of nausea) and it also helped me tolerate the one script of Percocet they sent instead of oxycodone by mistake. I guess if I'm eventually to wean to nothing by Tylenol, I'll need to continue with the Zofran.

I've been writing a long time this morning, so it is time to get up and move a bit. (smiley) We had freezing rain here last night, so I guess I'll be doing stairs instead of going out and trying my new cane.

Take care and thanks for the great post!
Fifa

[jrnyc]

hi fifa
i am so sorry things are so very hard right now and i hope
you feel better every day....until you feel good again.

there are A LOT of those husbands out there, apparently...
i had an uncle who died (at age 95) a few years ago....
one of my father's brothers....he explained it to me...
he said i was not using my brain....
he said
"do you think we don't KNOW we don't clean it as well...?"
then he winked at me.
he and my father were like that....the women just cleaned
stuff first, to avoid the annoyance of RE cleaning...

gentle hugs...
jess....& Sparky

[fifa]

Three month mark today - 2/10/2015

Hi, everyone -

It seems like forever since I've posted in my own thread. I've posted in several others, but have neglected my own. It seems like everything in my life right now is neglected in some way or another. I guess that is to be expected, but that doesn't mean that I enjoy it.

My pain is pretty well controlled and I've weaned down on some things and have completely stopped some things. I may have mentioned this before, but when we followed up with our nurse, I told her about the sobbing episodes along with angry outbursts. I had weaned off and stopped the Valium, which she told me to add back in because it was a "mood stabilizer." Oh, it stabilizes my mood, all right - makes me sad all the time. The sobbing stopped, but an incredible sadness took over, so I tapered and quit the Valium again.

The current regimen is pretty much an a.m. p.m. regimen - I take meds in the morning and round two of the same meds at night. The good news is that we tried just plain old regular Tylenol at 325 mg, and I've worked myself up in baby steps to where I can now tolerate two 500 mg caplets twice per day. I'm pretty proud of that - I've never been able to tolerate Tylenol before, and now I'm doing it without the Zofran tablets (after I found out from you all that they caused constipation!). So, I'm taking two 500 mg Tylenol morning and bedtime (four total per day), one 300 mg gabapentin morning and bedtime (total two per day), one 5 mg oxycodone morning and bedtime (total two per day), my nightly progesterone, and one weekly estrogen patch. I take one Soma per day, typically at bedtime, for muscle relaxation (it's an old script which I had removed from it's original bottle, so I don't know the mg). I have little need for the Zofran, but I do find I need it if I eat anything sugary. I can't tolerate sugar or carbonated beverages since surgery - don't know why, but I can't. Those cause instant indigestion and some actually cause vomiting. I'm using Peri-Colace (which is a stimulant laxative plus a stool softener) when I need it and also Milk of Magnesia when I need it, which seems to be at least once per week. I'm trying to remember to take my Vitamin D, calcium, and multivitamin, but those are in the kitchen so are easily forgotten (my routine pills are at the bedside, so they are easier to remember, plus pain kind of reminds you to take those). I think that is about it as far as meds.

So, at the three month mark, pain wise, I'm doing pretty well. Just in the last few weeks, dumb as it may sound, I know that I'm fusing. Maybe it was because I had been doing things that I didn't realize were not allowed (like getting down on all fours - I thought I was bending at the hips but actually was bending at the waist). The nurse scared me to death back in January when I saw her, and since then, I basically took to my bed and am not doing much of anything. I do try to walk, but I really want to do that outside (I'm SO tired of being in the house), so the weather hasn't allowed much of that. I find that I am terribly stiff when I try to get out of bed in the morning. I also have nearly zero tolerance for sitting. My bed is truly the only place in the house where I am comfortable.

Right now, I'm really fighting depression or at least just a lack of "hope." I've been sad the last few weeks because my mobility seems to be so much more impaired than it was. It is hard to explain, but I thought that the way I came home from the hospital was the way it was going to be, and I was excited about that because I had more mobility than I thought, and I was grateful. What actually was happening was that I was doing things that were keeping me from fusing, like bending when I thought I wasn't, twisting when I thought I wasn't (I leaned a lot, which I'm told is twisting), etc. Now that I've stopped doing those things, I find I can't do them anymore. I'm finding it harder to reach through/behind/around for toileting. I think a lot of this (the sadness) has to do with the medications, but that doesn't make it any easier.

My memory now is terrible, which I hope is medication. I can't remember things that happened before, during, and after hospitalization. I feel crazy. I feel like I have early Alzheimer's or something. I don't really want to be around anyone right now because it is maddening to not remember things that I've supposedly said or done (good things all). I can take my meds and then wonder if I've taken my meds. It is really strange. My mental state is just wrong, and again, I think it is probably the drugs, but I can't really wean off right now, so I guess the best I can do is just feel nuts. I sleep with a light on now and the television has to be on, too.

I'm also battling exhaustion. It seems like the smallest things are an ordeal. I know I'm just at the three-month mark, but I have to rest after a shower (I stay in there until all the hot water is gone - probably 45 minutes to an hour).

In a nutshell, I don't feel like myself anymore, and that makes me sad. I feel broken and crazy. I know from my undergrad and grad work that I'm grieving the old me, and I know that it is going to take time. I sneeze differently now. Lots of things are different now - too many things and some too intimate to mention here. For those of you who might suggest I confide in a friend, I have yet to find one that understands what this is like. No one I know has had any surgery of this kind; many of them have yet to lose a first-degree relative. No one I know has needed anything more than a hip or knee replacement. I have a great support system if hearing things like "cheer up" are supportive to you (they aren't to me, even though I know my friends mean well). There is no one who "gets" this. I get messages from my buddies nearly every day asking how I'm doing, and when I say that I'm doing okay but still having a hard time, the follow up is "I thought you would be better by now." So, I have a great support system who I have to re-educate daily, which is exhausting. I think I'm also realizing that my parents are old and infirm, especially since they've moved into their apartment and since my dad fell and had his surgery (he's doing great, by the way, and is off all pain meds including Tylenol - at the one month mark). They have been completely out of my life physically since I can't get to them and they can't get to me, so I'm sort of pre-grieving their ultimate absence.

Anymore, I surprise myself when I laugh. I've noticed that I don't laugh anymore, or at least not as much as I used to. I'm a huge joker and love comedy of all kinds. There isn't much I find funny lately.

I see my doctor on March 3rd and the narcotics will be stopped at that time. I'll be allowed to continue the gabapentin and the muscle relaxants, but will only have Tylenol for pain. I'm hoping that getting rid of the oxycodone will alleviate the depression/hopelessness/sadness - I guess we'll see. If this continues, I plan to seek grief counseling to try to cope. Even though my bosses have been incredible with me and are letting me work from home, from bed, I don't see any way right now of going back to the office next month.

I'm waiting to turn the next corner and hope that it is soon. My brain chemistry has always been a little wonky, but it sure feels right now like this is the new me and the best I can hope for. You all will tell me I'm wrong, but that is how it feels.

Now, I'm off to take my multivitamin, the calcium, and the vitamin D. I'm also a person who needs sunlight, so being low on D is bad for my mental state (I took 4,000 IU daily preop for years). Going to have to bring the vitamins into the bedroom so I can remember them.

I hope you all are doing well. I pray for all of us daily.

In order to leave this on a somewhat positive note, I had my first unaided (not due to a laxative) BM last week. I hope to quit the laxatives soon.

Take care, everyone. Even though I'm not posting much, I think of you all daily and pray for everyone. It occurred to earlier this evening (before midnight and the date changed) that it was a Monday and some poor soul was having scoliosis surgery at Barnes with Dr. Buchowski. He only does those surgeries on Mondays. Anyway, I prayed for that person, too, whomever he/she may be.

Love and hugs to all of you,
Fifa

[Lizardacres]

Fifa,

Good for you for listening to your own body and not the nurse and ditching the Valium. I would definitely not call Valium a mood stabilizer, it is a sedative, and if your mood is low it can cause depression. Also, this class of drugs prevents memories from being formed which is one reason it is so useful for medical procedures.

Have you thought about going to your PCP and asking to try an antidepressant? I started taking Effexor many years ago as an adjunct to pain control. I found it really dialed down the pain and helped me in coping with all the difficulties the scoli was causing in my life. I take 75 mg which is considered a low dose. I was also taking klonopin and Vicodin, which are downer drugs and the Effexor seemed to balance out the downer effects of those drugs. That combo of drugs kept me quite functional. Many here got injections to hold off surgery, but I managed with drugs, probably because I had been seeing a neurologist and that was his approach.

I too am starting to feel the effects of fusion, particularly when walking. It's really odd being forced to move a different way but it's reassuring that things are proceeding as they should.

But seriously, consider an antidepressant, it just might make a world of difference for you and readjust your brain chemistry after all that Valium.