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4 months, still need pain meds. Getting a little old!

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  • 4 months, still need pain meds. Getting a little old!

    Hi all,

    Thought I would post a little disgruntled update. A grumpdate?!

    Anyway, I'm starting to get frustrated here. I am four months post-op, but I still have pain every day that requires prescription meds. In the morning it's back-of-the-shoulder pain, on the right side only. It's right beside the angel wing, and more towards the spine. I get some relief from moving my arm around, but within an hour of getting up I am taking a Tylenol + 1/2 Norco.

    Then, when that wears off, by midafternoon, I have the "bear claw" tightness feeling in the mid-upper back. So, another Tylenol & 1/2 Norco.

    Then by evening, if I've had an active day (walking and sitting, etc), my left back hip/butt area is very sore, and that's like a nerve pain that can go into my leg. Sometimes I take another Tylenol & 1/2 Norco. Other times I just lay flat for the whole evening.

    So, I have called Dr. Lenke's office about the various issues four times. The first time I spoke with Karen, the new nurse. She wanted to talk to Kelly, the old nurse, and get back to me. It has been I would guess over a month now, and NO ONE has called me back, despite me leaving three additional followup messages (one per week, roughly)! I am getting ready to call Naomi, the medical assistant, and lodge a complaint. I don't know. Maybe they want me to see my local doctor, but it seems like they should at least TELL me that! My post-op appointment was at five weeks. Everything looked good then, but of course I was still on oxicontin, lots of Norco, Valium, etc., so I think any problems would have been pretty well masked. Lenke did not want me to have a 3-month appointment, and I believe my 6-month will be with a resident. So--not sure when, if ever, I'm going to get advice on these pains.

    When I called Naomi to get a med refill, she said to keep calling Karen so "nothing slips through the cracks." She thought maybe some physical therapy would help, but I need a prescription for that. (Which would require a phone call!!) In the meantime, she has cut me off the muscle relaxants and basically told me she won't be refilling Norco again. So, I'm trying (trying!!) to use as little as I can to get through the day.

    Does anyone know when Advil is permissable? I'm thinking six months. Tylenol essentially does nothing for me.

    Okay, I think my rant is over. I'm sorry to be negative. I still do feel really greatful for the lack of life-threatening complications and the great correction. But, to all the Lenke lovers out there, the team is not perfect! I would still go back to him again, but I think this forum tends to overly inflate him sometimes. It is still a massive, difficult surgery that has a high potential for complications and a long recovery, no matter who your surgeon is.

    Best,
    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

  • #2
    Hi Evelyn,

    I hear you completely, and definitely can relate. I recall being around 4-4.5 months post-op my original fusion (T8-pelvis) and I still had daily pain and a lot of very significant "aches and pains". I remember being very discouraged and thinking that if that was the final result, it would really, really suck. A wise friend of mine told me that in another 4-6 months I would feel much better, and actually, he was right. I think at 4 months I was so tired of recovering and being restricted by pain, and I started doing more activities and pushing my body more. The body protests but it is completely normal at this point! You can find many other posts from people at the 4-5 month mark who still have similar complaints, and many people answered to say it would get better. Susie*Bee is one who comes to mind, who felt she had a very slow recovery the first year but now several years later reports feeling great.

    My doctor allowed me to start taking ibuprofen at 6 months post-op after the original fusion, and it was Wonderful!! I also had a significant improvement at the 6.5 month mark and had many of the aches and pains disappear. It was great, and that day is coming for you, too. By a year I really felt good.

    I am currently 5 months post a major A/P revision from L1-sacrum (for broken rods), another 8-hr surgery. I am doing well overall, but like you, I still have significant daily aches and pains. I take tylenol twice a day, and about 3-4 days per week I take one tramadol. It is easy for me to overdo things and get sore the next day, what with working, kids, caring for lots of pets, etc. I have to keep reminding myself that I will feel better, it just takes time. As I recall you have young kids too, so I am sure there are times you have to push your body doing things with them.

    I would also be very frustrated by the lack of communication from the dr.'s office. Not ok. I guess all you can do is keep bugging them. I am sure your GP can refill your pain meds in the meanwhile. It is barbaric to think someone can have this magnitude of surgery and be completely done with pain meds a few short months later.

    Hang in there and try to remember that things will definitely get better. Take care,
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

    Comment


    • #3
      I'd be furious!

      Evelyn,
      You should rant and rave. You should expect and also deserve a prompt reply. How can one know what course of action to take to aide in relieving one's pain if Dr. Lenke's office doesn't respond? I just don't understand that Karen is not returning your calls. I never had a problem with Kelly. She always answered my questions and in a timely manner (usually less than 24 hours). I still have to sing praises for Dr. Lenke, but it is based entirely on my own experience. If I was experiencing the pain and lack of communication with Dr. Lenke's office staff that you are, I'd be furious to say the least. I'd call and call until you get some answers.
      Karen

      Surgery-Jan. 5, 2011-Dr. Lenke
      Fusion T-4-sacrum-2 cages/5 osteotomies
      70 degree thoracolumbar corrected to 25
      Rib Hump-GONE!
      Age-60 at the time of surgery
      Now 66
      Avid Golfer & Tap Dancer
      Retired Kdgn. Teacher

      See photobucket link for:
      Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
      Before and After Picture of back 1/7/11
      tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
      http://s1119.photobucket.com/albums/k630/pottoff2/

      Comment


      • #4
        I’ve had “grumpdates” before....but not here. he he

        Anyway, you know pain can continue on. Hopefully, it tapers down in time. I think that since I hate meds so much, quitting was probably a good thing. I saved my liver anyway. Oh, I had pain, but when you go from 10 to 4, your in heaven.

        The bear traps were strong when I was at 4 months and I would lay down for awhile and give those muscles a break.
        Sleeping is a necessary thing. If you are tired, or in some pain, lay down.

        If you can get into a physical therapy program of some sort, that should help. I didn’t start my PT till 8 months, up until that point it was just walking......and sleeping and the occasional grumpdate. (smiley face)

        If you look at my Redwoods thread, I was doing short hikes at 9 months, and in the photo you can see the pain in my face.....I was pushing, pushing past the pain. I knew it was part of the healing process, because serious surgery takes a long long time to recover from. I had pain, but kept smiling.

        Keep moving, that’s all we can do.
        Ed
        49 yr old male, now 63, the new 64...
        Pre surgery curves T70,L70
        ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
        Dr Brett Menmuir St Marys Hospital Reno,Nevada

        Bending and twisting pics after full fusion
        http://www.scoliosis.org/forum/showt...on.&highlight=

        My x-rays
        http://www.scoliosis.org/forum/attac...2&d=1228779214

        http://www.scoliosis.org/forum/attac...3&d=1228779258

        Comment


        • #5
          So sorry that you are dealing with the doctor's office not returning messages as well as trying to recuperate after such a huge surgery. Everyone gets off of drugs at different times. I do not understand why they would not give you muscle relaxants.

          About Advil, I would wait until you get the OK from Dr Doctor. Every doctor has their own time line when it is OK to take advil.

          Hope things improve and you can come on this board anytime to rant
          Melissa

          Fused from C2 - sacrum 7/2011

          April 21, 2020- another broken rod surgery

          Comment


          • #6
            Hi Evelyn,

            I can understand your frustration because at four months post-op, I was beyond the initial onset of post-op pain, and everyone around me was saying that I looked really great. But I was still no where near saying that I was feeling great. At my 7 mos. post-op appt. I was then given the ok to switch to Aleve.

            With you being in Indy, I would suggest contacting your family doctor regarding your ongoing pain. Plus your local family doctor could write your pt script. I didn't start pt until 8 mos post-op and it was slow going with the pt at first. I also started myofascial massage at that time too. Working with a local pt is much more practical than trying to work with the pt in st. Louis. I also used voltaren gel and gabapentin compound cream. Perhaps your family doctor could write scrips for you for that too. I really didn't start feeling better until I was closer to my one year post-op appt.

            As hard as it is, keep trying to maintain your walking routine. You might try using hot moist towels and hot showers to help instead of using muscle relaxants. As for me, I felt as if I was trying many different alternatives to help with the ongoing spasms. It was probably a combination of everything along with the passage of time before feeling better.

            Hopefully you can find some winning combination of things that can work for you too. Hang in there!
            Donna
            Female - 49 yrs old at surgery
            Surgery 5/5/11 - Dr. Bridwell, St. Louis
            Fused T3-L3
            60 degree thoracic curve corrected to 30 degrees
            Tennis player & returning to the courts!
            http://s1050.photobucket.com/profile/walkingmom1/index

            Comment


            • #7
              Hi Evelyn,

              I just want to second what everyone else said. I would be frustrated too if dr's office kept ignoring me. Hopefully your GP can help with pain management. On the topic of physical therapy - if you go somewhere locally, I would try to find somebody who knows at least something about scoliosis. I went to one physical therapist last month three times and dropped it. It was waste of my time and money (deductible). The guy didn't know a thing about scoliosis and I was an interesting case study animal for him. I felt way worse after he tried to massage my spine and after three times run away because the guy didn't know what he was doing.
              Last edited by Irina; 07-15-2012, 05:03 PM.
              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

              Comment


              • #8
                hi Ev
                just a thought...
                it might be helpful to find a pain management doctor NOW...
                so you will not be left in the lurch when there are no more prescriptions
                coming from the surgeon's office...
                also, possible that if you go to a pain doc, he or she could get thru
                to Lenke's office easier...
                personally, i would be really upset if i were 4 months out and not
                getting return calls....
                it is a really big surgery and 4 months doesn't sound that far out...

                hope you feel better everyday....

                jess...& Sparky

                Comment


                • #9
                  Evelyn--
                  I'm sure it isn't too heartening to hear that the pain can go on a while to say the least. I think Lenke's office cut me off at 6 months from pain meds. I went to the my local doctor for it from then on. I think I was doing aqua pt at about 4-6 months which did help--at a hospital where the temp of the water was about 92 degrees and it felt really nice. Also, a bit more land pt followed at 6 months. I now do microfascial massage which I really like. Whoever you see--doctor, pt people etc. bring a copy of your x-rays. I know my pt guy at 6 months was totally in awe. He'd never seen anything like it in his life and was very careful with the kinds of exercise he had me do.
                  Is Kelly gone from his office? That's a shame. If there's a new one I'm sure she has a pretty big learning curve. Janet
                  Janet

                  61 years old--57 for surgery

                  Diagnosed in 1965 at age of 13--no brace
                  Thoracic Curve: 96 degrees to 35 degrees
                  Lumbar Curve: 63 degrees to 5 degrees
                  Surgery with Dr. Lenke in St. Louis--March 30, 2009
                  T-2 to Pelvis, and hopefully all posterior procedure.

                  All was posterior along with 2 cages and 6 osteotomies.

                  Comment


                  • #10
                    Leahdragonfly has a very good memory! First, I can feel your frustration about not getting your concerns addressed. I'm so sorry! Hopefully you'll hear from them soon. Yes, I was one of the "tortoises" who took longer to heal, but that's ok. I stayed on the fairly heavy pain meds and they slowly weaned me off of them around 5+ months. I was taking Norco/hydrocodone, gabapentin, and valium. After I weaned down on those, I was switched from my surgeon to my family doctor for pain control and he had me take tramadol as needed. I am back on valium/diazapam all the time for severe leg cramps which have at times caused ALL my leg muscles in both legs to cramp at the same time. I just got home from a trip 2/3s of the way across the country, and even with taking diazapam prophyllactly (which usually keeps the cramps in check) I had 15 leg cramps during the night one night (and I get out of bed to straighten up) and fainted from one severe one, causing quite a bump on the head, 2 or 3 broken toes, a bumped/scraped elbow, and a very sore back. (Plus my husband was saying "why did you do that?? How can I get you up??" and I was answering "I can't get up, just throw me my pillow, leave me alone, I just need to rest..." You can maybe visualize the scenario. Aughhhh!

                    Anyway, sometime after a few or so months after surgery I think it might be time to have the medication baton passed on as needed to either your own doctor or a pain management doctor, especially if you're having problems getting through. My surgeon's nurse had worked on the weaning with me first, so that was good. It was my family doctor that suggested the switch. He was very concerned with how I was doing and wanted me as comfortable as possible without getting addicted to anything, and he was readily available and easy to see or call--15 minutes away. My surgeon was 2 hours away. Best wishes. Remember too that this is a journey and we're in it for the long haul. And it makes us all a lot stronger in so many ways! You're doing great. Right now you're using coping mechanisms-- sharing with us.
                    71 and plugging along... but having some problems
                    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                    5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                    Corrected to 15°
                    CMT (type 2) DX in 2014, progressing
                    10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                    Comment


                    • #11
                      Don't get discouraged! I experienced pain to various degrees and in various locations for at least the first year or longer after each of my surgeries. It really is a long recovery, but you have gone through the worst part and survived. You will feel better as each month goes by.
                      I don't understand why Dr L's office is not responding to you though...how frustrating for you.

                      My only advice for you is to remember that time is your friend. I hope you feel better soon ;-)
                      May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

                      March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

                      January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

                      Comment


                      • #12
                        Evelyn,
                        I looked back at my journal that I kept after surgery and at 4 months I still had various aches. I doubt that it is unusual and I'm certain it will get better, however, Karen should still return your calls. I would be persistent if I were you. I didn't start any formal physical therapy until I was a year post-op, but Janet gave me some exercises that I did on my own at home. I also did a lot of movements in the pool at the Y which felt wonderful in the early months of recovery (3 months & currently)
                        Karen

                        Surgery-Jan. 5, 2011-Dr. Lenke
                        Fusion T-4-sacrum-2 cages/5 osteotomies
                        70 degree thoracolumbar corrected to 25
                        Rib Hump-GONE!
                        Age-60 at the time of surgery
                        Now 66
                        Avid Golfer & Tap Dancer
                        Retired Kdgn. Teacher

                        See photobucket link for:
                        Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
                        Before and After Picture of back 1/7/11
                        tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
                        http://s1119.photobucket.com/albums/k630/pottoff2/

                        Comment


                        • #13
                          no return call

                          Hi, Evelyn. I was having the same issue and then called Naomi and my phone call was returned within a couple of hours. I think the transition from Kelly to Karen has not gone as smooth as they would have liked. It is frustrating. Hang in there. I will definately be praying for you. At my consult, Dr. Lenke told me that around 4 months post op I would be wondering why I had the surgery. He said most patients hit that wall and start to rethink/regret surgery but to remember that it will get better! Do you have a local doctor following you? Maybe even your GP can help with a pain med if you still need it... I would be setting up an appointment now though before you run out. How are the kids?
                          Best,
                          Heidi
                          Scheduled for surgery with Dr. Lenke Oct. 2012
                          53*T 71*L
                          Surgery 10/05/2012 T4-pelvis
                          Correction: looks perfect! Will find out how perfect at future appointments

                          Comment


                          • #14
                            I don't know how you mothers cope with kids after this huge surgery. I know when I have my three granddaughters, I am lifting, bending, reaching and running after them all day long. Does it help to lie down during the day? I was still getting a 1-3 hour sleep every day right up to about 3 months. I see you're walking daily and I think that's helpful. Four months is still early but I totally understand the need to be free of pain and feel normal again. It will happen!

                            I hope you determindly seek answers to your questions from Dr. Lenke's office.
                            Surgery March 3, 2009 at almost 58, now 63.
                            Dr. Askin, Brisbane, Australia
                            T4-Pelvis, Posterior only
                            Osteotomies and Laminectomies
                            Was 68 degrees, now 22 and pain free

                            Comment


                            • #15
                              Hi Everyone,

                              You are all the BEST! Really. I want to thank each one of you individually because I got something out of each and every one of these responses.

                              So, update: When I called for the fourth time late last week, I did say on my message that it was my fourth call and I would, umm, appreciate a response. So, today Kelly called!! I do not want to slam Karen, as the times I've talked to her in the past she has been very helpful. However, I do think they're having some transition pains over there. Kelly said as much.

                              So...she says my ongoing left side hip/butt pain could be the iliac screw. If it gets worse, they will do trigger point injections. Ultimately, it could be removed at two years post-op, but it's way too early to tell if that will be necessary. She said she would forward my issues to Dr. Lenke and see if there is anything specific he wants me to do. But, she said most likely it is just a matter of being patient, continuing to walk, take pain meds as needed (she didn't think I'm taking too much), and after six months we can think about anti-inflammatories. She thought it was too early for PT. Also, she gave me her new phone number. PM me if any Lenke patients want it.

                              Also, last night I put my foam topper, which had been on the sofa, on top of my memory foam bed. That seemed to help the shoulder somewhat.

                              So, thanks to you all, Kelly, and foam (nod to Ed), I am feeling better (well, mentally anyway). So, thank you, thank you, thank you!!

                              And SusieBee, those leg cramps sound worrisome! Have you had your potassium levels, etc., checked to make sure it's "just" your back. I'm sorry for your fall!! Kudos to you for keeping a sense of humor about everything.

                              Best,
                              Evelyn

                              P.S. I will take all of your advice and work on a local doc for pain mgmt.
                              age 48
                              80* thoracolumbar; 40* thoracic
                              Reduced to ~16* thoracolumbar; ~0* thoracic
                              Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
                              Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
                              Not "confused" anymore, but don't know how to change my username.

                              Comment

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