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  • #91
    Well, I'm going to have to break down and call a doc tomorrow. My pain is NOT under control. The Botox hasn't helped the excruciating pain that I get sometimes when I stand. It's in the left scalene (sp?). The docs are all afraid to do anything about it because it's so close to my lung. I'm miserable most of the time and the pain meds are starting to not work. I know it's not an addiction factor because I had a day (woo hoo) the other day where I only required two percocets and had NO withdrawal effects what-so-ever. So I know for a fact that it's pain driven. Argh!

    At least the exercising is going well! I am energized by it, but if I dare lay down I'm done for the day. I credit pain for this fatigue. I try to get all my stuff done when I get home from my workouts. It's working pretty well. I am getting a lot stronger, too. It's amazing what three times a week does for a person. I'm only supposed to be there for an hour, but I'm usually closer to actual hour and a half workouts. I do cardio and then lift weights. It feels really good. =)
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

    Comment


    • #92
      Hope you get some relief
      Melissa

      Fused from C2 - sacrum 7/2011

      April 21, 2020- another broken rod surgery

      Comment


      • #93
        rohr, how are you able to do such long work outs
        when you have such pain....??

        jess

        Comment


        • #94
          Jess,
          I take my painkillers before I go. I had to take two this morning. Once I'm going, the endorphins kick in. When I get back I have extra energy for about a couple of hours then I'm DONE. I've been having that aweful shoulder pain again. The walking on the treadmill actually kicked up my sciatica, but it wasn't intolerable. It quit when I quit walking. I've had to quit one exercise all together because it's so painful. It's the side arm lift. For some reason, that's the only one that really bothers me. I'm really not doing heavy workouts, as far as the average person would think. I walk the treadmill at increasing speeds for up to a half hour. I ride the bike for ten minutes. I do the arm bike for five minutes. I warm up with either the sitting stair machine or the treadmill and cool down with the sitting stair machine. Then I go over and do leg presses, chest presses, rows, a machine for the back (don't remember), and then standing crunches. That's it.

          Some days are better than others and I can work harder. But none of those exercises really affect the neck or upper back in a way that causes me pain. The side arm lifts are just excruciating and, like I said, I quit doing them. I think when the endorphins wear off, that's when I start to feel it. It doesn't seem like muscular pain from a hard workout, so in that sense I can say that it is pain free. It's all the stuff that normally hurts in the upper back, neck, shoulder and arm, all the symptoms of a heart attack, right? How would I ever know? I'm actually surprised that the chest press and rows don't hurt. But, hey, I'm not going to complain. I'll try to gain as much muscle mass as I can and hopefully this pain will eventually subside.

          Thank you, too, Melissa. I didn't get up the nerve to call the doctor today. I keep hoping I won't have to. I'm afraid that I'll take too much medicine and run out, though. I did a pill count and I'm actually doing fine. But if I keep having bad days where I need more, my little cushion will be gone. I only get so many per month and I have to make them last.
          Last edited by rohrer01; 06-11-2012, 12:51 PM.
          Be happy!
          We don't know what tomorrow brings,
          but we are alive today!

          Comment


          • #95
            Hi Rohrer,

            I have been away to my grandson's HS graduation, so have missed a lot on the forum. I am so sorry you are having so much pain and that the botox has caused you even more pain. I hope that the exercising will eventually help you.

            I'm glad for you that you caught the shingles so early like I did. Had you ever had the shingles vaccine? My Doctor said that having the shingles is as good as having the vaccine, like a booster shot.

            Take care, Sally
            Diagnosed with severe lumbar scoliosis at age 65.
            Posterior Fusion L2-S1 on 12/4/2007. age 67
            Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
            Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
            New England Baptist Hospital, Boston, MA
            Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

            "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

            Comment


            • #96
              Originally posted by loves to skate View Post
              Hi Rohrer,

              I have been away to my grandson's HS graduation, so have missed a lot on the forum. I am so sorry you are having so much pain and that the botox has caused you even more pain. I hope that the exercising will eventually help you.

              I'm glad for you that you caught the shingles so early like I did. Had you ever had the shingles vaccine? My Doctor said that having the shingles is as good as having the vaccine, like a booster shot.

              Take care, Sally
              Thanks, Sally. I'm actually hoping the exercise helps, too. In the past, when I've done exercise it took awhile to build the muscle mass where I needed it. But it eventually helped and I was able to get off ALL meds. I have the same high hopes this time. But even if it doesn't help to that degree, it's good for me. Laying around all day does NOTHING for making pain go away and only weakens me which makes pain worse. I'd rather take more meds now, in hopes of feeling better through exercise, than lay around, which is pretty much all I've been able to do. I didn't even have the energy, and it hurt to do all that stooping and bending, to properly tend my garden this year. =(

              As far as Shingles is concerned, it's pretty much my understanding that once infected with Herpes Zoster (Chicken Pox / Shingles virus) you are always infected (most, if not all, Herpes infections work that way). I have worked with people in health care that have chronic bouts of Shingles. I think it's a wives tale that once you get it you can't ever get it again. I'm wondering if the Shingles vaccine isn't the same as the Chicken Pox vaccine for adults that have never had Chicken Pox...??? Hmmmm... I had a very bad case of Chicken Pox as a young child. I still remember how awful it was! It just so happens that my Shingles outbreak started around a very bad Chicken Pox scar on my side that I never knew I had until I saw the Shingles there. The scar remained white and the redness spread around it. Weird.

              Take care and I hope you can keep your sciatica under control.
              Be happy!
              We don't know what tomorrow brings,
              but we are alive today!

              Comment


              • #97
                hey rohr
                i never had chicken pox...or measles, only mumps...
                since i worked in schools, and the kids kept popping
                up with chicken pox every year, my GP insisted i get
                the chicken pox vaccine...
                i do not think i can get chicken pox or shingles, since
                chicken pox was never in my body...but i haven't checked
                it with a doctor...

                jess...& Sparky

                Comment


                • #98
                  I've known people who's kids came down with Chicken Pox after getting the vaccine. The doctors argue that the cases are much less severe than had they not had the vaccine. I've also done research on the Chicken Pox vaccine actually CAUSING Shingles later in life. There's no good medical answer for some things. I hope you NEVER get either.
                  Be happy!
                  We don't know what tomorrow brings,
                  but we are alive today!

                  Comment


                  • #99
                    Thanks Rohrer. I am going to try a nerve ablation as soon as I hear from the hospital for an appointment. I think my overall pain level might be just a little better this year than last year but it is very subjective.
                    Sally
                    Diagnosed with severe lumbar scoliosis at age 65.
                    Posterior Fusion L2-S1 on 12/4/2007. age 67
                    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
                    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
                    New England Baptist Hospital, Boston, MA
                    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

                    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

                    Comment


                    • RE: Shingles after getting the Chicken Pox vaccine...I had never thought about this, so I checked it out a little after reading your thread rohrer. I never had chicken pox as a child, and I work in the hospital so I was vaccinated as an adult.

                      Here is what the Vaccine Action Coalition says:


                      Can the vaccine cause herpes zoster (shingles)?
                      Yes, this is possible. The risk of zoster following vaccination appears to be less than that following infection with the varicella virus. The majority of cases of shingles following vaccine have been mild and have not been associated with serious complications.


                      Rohrer, I am really sorry to hear of your increased pain after the botox, and I hope you will call your doctor if needed. This must be so frustrating for you, I know you were so hoping for pain relief not worsening.

                      Curious, what is a seated stair-climber? I go to a gym, but I'm not sure I've ever noticed or seen one of these. Sounds interesting.

                      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


                      • As far as Shingles from the vaccine goes, I know a guy that worked for the CDC when they were developing that particular vaccine. He was a statistician and the CDC wanted him to not report or alter the negative findings. That's my understanding of it, anyway. I think that's why he quit working for them. I'm not saying that I wouldn't get vaccines or vaccines for my kids, but it's kind of scary to think that the CDC would want to cover up the actual results. I say, tell it like it is and let the public decide. I had my daughter get the series of vaccinations for HPV and I thought the second shot was going to kill her. Since my kids were older, we went out of town (about three hours away) for the night after she got the vaccine thinking nothing of it. I got a frantic call from my oldest son who thought she was dying. Of course I told him to call 911, but she resisted. We immediately came home in record time. She had high fever, neck pain and light sensitivity. I was afraid it was meningitis, but her symptoms improved during the night. By morning she was okay. But it was from the vaccine. I chose NOT to get her the third shot in the series being fearful of a worse reaction. She took herself in to get it later and wasn't affected by it. There certainly are real risks with vaccines, but there are risks without them, too!

                        As far as the question about the seated stair climber; it's just something you sit in, like a recumbant bike, but instead of the pedals rotating, there are foot platforms like on a regular stair climber. There are also arm handles that you hang onto that move back and forth with each step. It's really quite a simple comtraption designed for people that can't handle a harder workout, or have really bad backs, or hearts.

                        I did break down and call my doctor again today about the increased pain. I have an appt next week. I'm so disappointed. =( I was hoping to get OFF all of this garbage medicine.
                        Be happy!
                        We don't know what tomorrow brings,
                        but we are alive today!

                        Comment


                        • Originally posted by rohrer01 View Post
                          There certainly are real risks with vaccines, but there are risks without them, too!
                          I agree with this and have often been torn about getting my kids (and myself) certain vaccines. It's really a crapshoot. And very scary about the CDC although I totally believe it, which makes it more of a confusing issue when you don't know what is true and what isn't.
                          mariaf305@yahoo.com
                          Mom to David, age 17, braced June 2000 to March 2004
                          Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                          https://www.facebook.com/groups/ScoliosisTethering/

                          http://pediatricspinefoundation.org/

                          Comment


                          • Originally posted by rohrer01 View Post
                            Well, I'm going to have to break down and call a doc tomorrow. My pain is NOT under control. The Botox hasn't helped the excruciating pain that I get sometimes when I stand. It's in the left scalene (sp?). The docs are all afraid to do anything about it because it's so close to my lung. I'm miserable most of the time and the pain meds are starting to not work. I know it's not an addiction factor because I had a day (woo hoo) the other day where I only required two percocets and had NO withdrawal effects what-so-ever. So I know for a fact that it's pain driven. Argh!

                            At least the exercising is going well! I am energized by it, but if I dare lay down I'm done for the day. I credit pain for this fatigue. I try to get all my stuff done when I get home from my workouts. It's working pretty well. I am getting a lot stronger, too. It's amazing what three times a week does for a person. I'm only supposed to be there for an hour, but I'm usually closer to actual hour and a half workouts. I do cardio and then lift weights. It feels really good. =)
                            Congratulations on the excercise! That helps physically and mentally.
                            Susan
                            Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                            2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                            2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                            2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                            2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                            2018: Removal L4,5 screw
                            2021: Removal T1 screw & rod

                            Comment


                            • Originally posted by rohrer01 View Post
                              Thanks, Sally. I'm actually hoping the exercise helps, too. In the past, when I've done exercise it took awhile to build the muscle mass where I needed it. But it eventually helped and I was able to get off ALL meds. I have the same high hopes this time. But even if it doesn't help to that degree, it's good for me. Laying around all day does NOTHING for making pain go away and only weakens me which makes pain worse. I'd rather take more meds now, in hopes of feeling better through exercise, than lay around, which is pretty much all I've been able to do. I didn't even have the energy, and it hurt to do all that stooping and bending, to properly tend my garden this year. =(

                              As far as Shingles is concerned, it's pretty much my understanding that once infected with Herpes Zoster (Chicken Pox / Shingles virus) you are always infected (most, if not all, Herpes infections work that way). I have worked with people in health care that have chronic bouts of Shingles. I think it's a wives tale that once you get it you can't ever get it again. I'm wondering if the Shingles vaccine isn't the same as the Chicken Pox vaccine for adults that have never had Chicken Pox...??? Hmmmm... I had a very bad case of Chicken Pox as a young child. I still remember how awful it was! It just so happens that my Shingles outbreak started around a very bad Chicken Pox scar on my side that I never knew I had until I saw the Shingles there. The scar remained white and the redness spread around it. Weird.

                              Take care and I hope you can keep your sciatica under control.
                              You can get shingles many times as you mentioned. It reappaers when you are stressed, immunocompromized, phyically ill with something else....or just randomly. I had chicken pox as a kid and shingles as an adult. I started the zovarax within an hour of the first tingling of trigeminal pain...probably the world's earliest treatment. I was at work in the clinic and the side of my face started to hurt slightly and then tingle, and I realized that it was on the distribution of the trigeminal nerve. I went to the Pharmacy STAT and started zovarax within the hour and made an appointment with the ophthalmologist immediatlely. She said that I had the very beginnings of herpes viral damage on my eye, but that I caught it early.

                              I looked at the CDC recommendations, and then got the Shingles vaccine when I turned 60, even with the shingles outbreak in my history. It is contraversial whether people with shingles should get the vaccine, but I'm all for preventing blindness from shingles.

                              Best of luck! Shingles is not for the weak!
                              Susan
                              Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                              2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                              2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                              2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                              2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                              2018: Removal L4,5 screw
                              2021: Removal T1 screw & rod

                              Comment


                              • I did break down and call my doctor again today about the increased pain. I have an appt next week. I'm so disappointed. =( I was hoping to get OFF all of this garbage medicine.[/QUOTE]

                                Give yourself credit, you're working on it! You may never totally get off ALL medicines, the amounts and names of the drugs will cahnge as your needs change. Great that you called, maybe your doctor will have some new ideas short of more medicine. Good luck! This has been such a journey for you and I think that you are pretty amazing with all that you do to be proactive and take care of yourself.
                                Susan
                                Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                                2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                                2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                                2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                                2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                                2018: Removal L4,5 screw
                                2021: Removal T1 screw & rod

                                Comment

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