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

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  • That was the best message I have ever seen about poop! You should be a writer, because your descriptions were brilliant!

    I am SO sorry you have had to go through all of this. Of course you feel down, you have been dealing with 2 major medical issues at the same time. Have you thought of contacting a GI doctor or pain management doctor? I know you are getting off the pain meds, but seems to me you still have a lot of pain. There are many options out there for pain and you should not have to suffer or choose between your back or your bowels. No pun intended (initially), but you have to make a big stink with the doctors about this!

    As someone who's surgery is coming up, I really appreciate your honesty and advice. Unfortunately you have had to go through this horrible thing, but hopefully your sharing it will prevent others from experiencing it.

    Big gentle hug!
    T4-Sacrum fusion, with pelvic fixation in January 2015, Dr. Lonner in NYC
    10 osteotomies, rotation from 25 to 2
    Diagnosed at age 11 with double curve, 36 and 45 degrees, Braced for 2.5 years
    At time of surgery, curves were 45 and 65 degrees
    Chronic back pain, worsening, since age 11
    Tried every pain management procedure, acupuncture, chiropractor, physical therapy ever created
    Mom of 2 cuties!

    Comment


    • Hi, there! (for spring chicken and green M&M)

      I think the bowel troubles are so common with all of us, truly. I just wasn't at all prepared for that. My lord, the pain/cramping I had when it started...it was like my body said - "okay, this is coming out out NOW," but it was too big to pass. I think half the neighborhood heard me screaming, plus then the bending and just a tiny bit of twisting to try to remove it - my back was just killing me. I'm glad it is over - at least, I pray it is over.

      This whole time, eight weeks, I've been having medication trouble. I was originally sent home with oxycodone 5 mg take one or two every four to six hours (if I remember right). I was doing fine with it, sleeping a lot, doing some crying, but doing okay. I keep saying oxycontin, but it was oxycodone. We had a script that was to last a month, so we called ahead and had the next script mailed to us. When it came, it was for Percocet, which is actually the same 5 mg of oxycodone plus 325 (if I remember right) of Tylenol.

      Maybe a month before surgery, the ortho folks told me to stop taking Motrin because it would inhibit the fusion. I started taking Motrin over 20 years ago because that is what the ortho group here always prescribed for back pain. It helped my pain SO much better than Tylenol, so that is basically the only pain med I've ever taken on a regular basis. There have been several times over the years that I've taken Tylenol or another product with Tylenol in it, and came to find out that Tylenol really upsets my stomach.

      So, when we received the script for Percocet and filled it without knowing it had Tylenol, it wasn't long before the nausea set in. I couldn't figure it out. I had already been having bowel trouble and truly wasn't eating much at all. I had my typical acid reflux, which I get a lot when my stomach is empty, but this was full-on "sleep with the trash can next to the bed" nausea. When we figured out it had to be the Tylenol in the Percocet, we called the ortho folks and they called in a prescription for odansetron (Zofran). I've been taking it twice a day ever since because it really does help with the nausea I've had from the Percocet.

      Yes, I've truly had more trouble with stomach/bowel issues than pain, which is not to say I haven't had significant pain issues. I guess the stomach stuff was unexpected, so somehow in my mind, it was worse and I just wasn't prepared. Plus, it is completely embarrassing for me to have to ask my husband to insert a suppository or give me an enema.

      I would very much like to ask you a question, please. I literally have about 15 scripts on the kitchen counter...three pain pills (I'm only using the oxycodone), two muscle relaxants (Valium and Tizanidine), a script for Nucynta (a newish pain med that I'm afraid to take due to contraindications - it says not to take it if you have an ileus, so after having an ileus plus four impactions, I don't want to even try it), and a script for baclofen which I'm not taking and a whole bunch of gabapentin (Neurontin) which I'm not taking. It just all seems like too much for me...for someone who hasn't had anything but Motrin for 20 years, having 15 prescription bottles on the kitchen counter is a little daunting, and as crappy as I've been, I've been trying to do research and try different combinations of things. For instance, the Tizanidine (Zanaflex) which is for muscle spasms...in the side effects for this med, it says, "may cause back pain and increased muscle spasms" (constipation and stomach trouble, too.) What the ever-lovin F? Valium, also for muscle spasms, may cause muscle spasms (under side effects) and may cause trouble urinating (there's my decreased urinary stream, by the way, plus probably the horrible bed spins I had more than a month ago (basically when I started taking it. Also, Valium causes depression, and it seems like a side effect for absolutely everything I'e been prescribed causes constipation. I have baclofen, another muscle relaxant, which says it probably shouldn't be taken with other muscle relaxants. Then, I have the Neurontin (gabapentin) - which may have interactions with antacids (aluminum and magnesium), and with hydrocodone.

      Serious question, everyone - what do you all take and how do you manage the side effects?
      And, to Spring Chicken in particular (and anyone else who has tried the gabapentin) - did it work for you?

      I'm finding that the opioids just screw with the part of my brain that cares that I'm having pain. Nothing I'm taking is reducing the muscle spasms. My back pain is seriously manageable (I'm at about the same pain level as I was preop except there are a whole lot of things that hurt when I do them now (so I'm not doing them) and there are several things that used to kill me that aren't bothering me at all. It's a fair trade so far. I think I could manage the back pain if I could just get rid of the "spasm" part.

      Do you all have any suggestions of any combinations of meds that worked for you? I'd like to find something that lets me have a little bit of a clear brain so I can work, something that doesn't make me immediately want to fall asleep, something that doesn't make me sob, confused, or wake up not knowing where I am). I would just like to know what worked for some of you.

      I really can't take Tylenol, but believe if I continue the Zofran twice a day like was prescribed, I could probably tolerate it.

      Thanks, everyone, for bearing with me. I hate drugs and really don't want to take anything, but obviously have to take something for the pain/spasm.

      Big hugs,
      Fifa
      Last edited by fifa; 01-07-2015, 05:36 AM. Reason: I'm tired and can't spell

      Comment


      • Originally posted by springchicken View Post
        Hi Fifa,
        I'm so sorry you're having such a terrible time. I can definitely relate to the bowel troubles. I noticed on another thread that you were on anti- nausea drugs at one point? Not sure if you still are but they are incredibly constipating. Muscle relaxers can be too. I know its so awful having to choose between pain or all the side effects from the meds. But I found as I tapered off even just a little it helped so much. Mirolax was my godsend. Took it twice a day. It's gentle but really works.

        Anyways I'm actually typing this as I head to my one year follow up with my surgeon. Wish I could say all is well but Im still dealing with significant pain. I'm on gabapentin which has also been so helpful.

        Good luck! Hang in there. You will not be this way forever.
        Sorry - before I hit submit on that last post, I meant to wish you good luck with your one-year follow up. Hooray for you!!! Hope all is well - will be praying for you!

        Hugs and big smileys,
        Fifa

        Comment


        • Originally posted by green m&m View Post
          OH yes I agree with springchicken.

          Zofran for me works but with bad side effect -- gave me the worst constipations ever. This was in pill form... I can't even imagine how bad it'd be if I was given through IV.

          I had my nurses informed well on which anti-nausea to give me, except the lazy one who ended up wasting a syringe full of zofran because she just didn't listen (or would leave before i had a chance to tell her which would only take extra few seconds)

          I think I got reglan in my IV I don't think it caused constipation -- it comes in both IV and pill form.
          Thanks for this, M&M. I honestly had no idea about the Zofran causing constipation. Yes, I'm still on it because I'm alternating the Percoset right now with the oxycodone, sort of trying to figure out not only which one works better but which one makes me less crazy. I took my first oxycodone tonight after having been on Percocet for a week (we ran out of oxycodone over the holidays and had to have my local primarily care physician graciously write us a small script for Percocet to get us through until the script for oxycodone arrived in the mail). I just can't take the Percocet without taking something for my stomach. Anyway, less than an hour after taking my first 5 mg oxycodone in a week, I was confused, wobbly, wandering around, and sobbing. I had quite a bit of pain (hubby woke me up in order to give me the oxy as we are following a very tight around-the-clock schedule so I don't get behind on any of my meds. You all know what happens when the pain gets ahead of you).

          I'm measuring my intake and have been since the second or third bout of fecal impaction. I have a giant University Hospital cup and straw combination that holds 32 ounces. I'm drinking about six of these a day now. It seems like we're making iced tea just about hourly. I'm still not eating much, but I'm drinking everything I can find. I especially am fond of chocolate soy milk, and usually have at least one glass of that in a day (it is packed full of protein and I just love it). I've stopped drinking coffee for the most part just because my stomach has been a mess since I left Barnes, so I typically am now starting my morning with a cup of hot tea with plain soy milk and just a touch of sugar.

          Something happened while I was in Barnes and had the ileus. I can't tolerate sugar really much anymore, or at least not in great amounts. I tried a piece of fudge over Christmas and had to take Zofran shortly after. One Christmas cookie caused the same problem. If any of you are familiar with the Missouri Baking Company in St. Louis on "the hill," we go every year to buy cookies for Christmas gifts for family and friends (and ourselves, of course). They are tiny shortbread cookies of every flavor, biscotti, etc. They are tiny and packed full of butter and sugar, and are the best things ever. One cookie made me sick enough to take a Zofran. Lastly, I've mentioned this before, I can't drink anything carbonated since I left Barnes.

          I'm blaming all the meds for all of my troubles at this point, and just want to get off everything and see what the new normal is. There doesn't seem to be much point in seeing a whole bunch of specialists now while I'm taking all of this.

          I'm only taking the Zofran as needed, which is twice daily while I'm on the Percocet. So, I'm happy to know it causes constipation and I will be careful using it. Thank you so much for this important information - I had no idea. I haven't been well enough until lately to use the laptop and look up all of this for myself.

          Hope you and yours are well - thanks again!

          Big hugs,
          Fifa

          Comment


          • My Daddy Went Home Today!!!!!

            Hi, everyone -

            For all of you who were praying for us, I just thought I would let you all know that my dad called me from his brand new recliner in their brand new apartment today. He was discharged this afternoon!! The discharge planner/care coordinator took my folks over to their apartment just to make sure that everything was accessible to my father so he could safely be discharged home rather than having to go to a nursing home or assisted living situation. But for a couple of throw rugs (bath mats - one in front of each shower), the apartment passed muster and dad is free to return home, of course with all kinds of restrictions. He'll never walk again without the walker, but that sure beats a lot of the alternatives. Since it was so cold here today, snowy/rainy, etc., the care coordinator told him to stay in his recliner...she would go back to the hospital and fill out all the necessary paperwork, and they would pack up his belongings and let mom come over later to sign him out and pick up his things.

            I couldn't stop crying when he called, but you all know I cry quite a bit anyway these days (LOL). Anyway, I thought you all might want to know that at least one problem is solved for now.

            Thank you all who kept us in your thoughts and prayers. I have no doubt he got to go back home because of all the prayers and good wishes being sent his way. Thank you.

            The big dummy had a five-level cervical fusion (with rods and screws) and is taking one Percocet at bedtime to help him sleep. No pain whatsoever. I told him how very jealous I was. (smiley)

            Anyway, thank you all for your concern. Hopefully, my own mood will improve now and I can worry a little less. It is nice to finally have some good news.

            Hugs and love to all of you,
            Fifa

            Comment


            • Originally posted by ksmom0611 View Post
              That was the best message I have ever seen about poop! You should be a writer, because your descriptions were brilliant!

              I am SO sorry you have had to go through all of this. Of course you feel down, you have been dealing with 2 major medical issues at the same time. Have you thought of contacting a GI doctor or pain management doctor? I know you are getting off the pain meds, but seems to me you still have a lot of pain. There are many options out there for pain and you should not have to suffer or choose between your back or your bowels. No pun intended (initially), but you have to make a big stink with the doctors about this!

              As someone who's surgery is coming up, I really appreciate your honesty and advice. Unfortunately you have had to go through this horrible thing, but hopefully your sharing it will prevent others from experiencing it.

              Big gentle hug!
              Hi, there -

              Yes, my next stop is with the pain management doctor here in town, who is supposed to be wonderful. I just had colonoscopy/upper endoscopy in April. I have them every two years because I have a four-generation colon cancer history on my mom's side of the family. I'm confident the GI will tell me it's all the meds I'm taking, and I think the person to straighten out the meds would be the pain management doc.

              I know it has only been eight weeks, but I just want to start weaning down off some of this stuff and trying to get a life back. I don't feel like doing the walking I'm supposed to be doing. I'm dizzy and confused quite a bit. My stomach will only tolerate a few things, so I've lost 40 pounds and have zero energy. So, I think the pain doc is the way to go. I'd like to get straightened out before I see the ortho surgeon in April or May. For no reason other than just not feeling/doing as well as I thought i would be at this point, I'm afraid to see the ortho surgeon for anything right now because I'm afraid he's going to tell me something is screwed up. My legs go numb after sitting just a few minutes. I have a pain in my left thigh in exactly the same place every time that doesn't happen very often, but feels like someone is poking an ice pick into my thigh. I have some occasional non-painful "crunchy" going on in the tailbone and hear an occasional tiny pop in the spine - I have no idea if this is normal or not but I'm too scared to call and ask.

              So yes, pain doctor is the next stop as soon as hubby can drive me down there. I can't drive yet while still on all this medicine.

              Thanks for your nice reply. I laughed out loud at you "big stink" comment. (big smiley) At one point in my long poop post, I wanted to say that I was in so much pain with that that I didn't really give a crap or a sh** if I messed up the fusion....that's how much pain I was in. However, I already couldn't give a crap, but I thought that was too easy of a joke. LOL Yours is much better.

              Thanks again - take care of yourself and stock up on every kind of laxative preop. No one wants to go to Walmart for mag citrate at 3:00 a.m. It's not like it will hit you during normal business hours..... LOL

              Big hugs,
              Fifa

              Comment


              • 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
                Surgery Jan 6, 2014 at 38 yrs
                Posterior Fusion T10-L4, osteotomy 1 lev.
                Pre op-Thoracolumbar Curve-50 degrees

                Comment


                • 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.
                  T10-pelvis fusion 12/08
                  C5,6,7 fusion 9/10
                  T2--T10 fusion 2/11
                  C 4-5 fusion 11/14
                  Right scapulectomy 6/15
                  Right pectoralis major muscle transfer to scapula
                  To replace the action of Serratus Anterior muscle 3/16
                  Broken neck 9/28/2018
                  Emergency surgery posterior fusion C4- T3
                  Repeated 11/2018 because rods pulled apart added T2 fusion
                  Removal of partial right thoracic hardware 1/2020
                  Removal and replacement of C4-T10 hardware with C7 and T 1
                  Osteotomy

                  Comment


                  • 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.
                    T10-pelvis fusion 12/08
                    C5,6,7 fusion 9/10
                    T2--T10 fusion 2/11
                    C 4-5 fusion 11/14
                    Right scapulectomy 6/15
                    Right pectoralis major muscle transfer to scapula
                    To replace the action of Serratus Anterior muscle 3/16
                    Broken neck 9/28/2018
                    Emergency surgery posterior fusion C4- T3
                    Repeated 11/2018 because rods pulled apart added T2 fusion
                    Removal of partial right thoracic hardware 1/2020
                    Removal and replacement of C4-T10 hardware with C7 and T 1
                    Osteotomy

                    Comment


                    • 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.
                      Last edited by green m&m; 01-07-2015, 01:36 PM.
                      30 something y.o.

                      2003 - T45, L???
                      2005 - T50, L31
                      bunch of measurements between...

                      2011 - T60, L32
                      2013 - T68, L?

                      Posterior Fusion Sept 2014 -- T3 - L3
                      Post - op curve ~35


                      Comment


                      • Originally posted by springchicken View Post
                        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

                        Comment


                        • Originally posted by jackieg412 View Post
                          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
                          Last edited by fifa; 01-08-2015, 01:21 AM. Reason: typo

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                          • Originally posted by jackieg412 View Post
                            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

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                            • Originally posted by green m&m View Post
                              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

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                              • 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.
                                I am stronger than scoliosis, and won't let it rule my life!
                                45 years old - diagnosed at age 7
                                A/P surgery on March 5/7, 2013 - UCSF

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