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  • Cold Weather?? Survival mode!!!!!

    Hi all,
    I havn't posted for a while. I have been having some very disturbing issues. I am one and a half yrs.
    out from my third revision surgery.i'm fused from T4 to sacrum. I live on So. Dak. And it is very cold here!
    The weather has been down in To one digit since the first of Nov. BUT all of a sudden we will warm up to the 60's for a day or so, and it's like a roller coaster. But when it hits those one digit numbers my back feels like I have a corset on it and someone is tightening it as tight as they can get it!?,! It is terrible to wake up that way and go to bed that way. It's uncomfortable and painful. I take hot baths that help for a short time and I do stretch excersises. But nothing really helps.
    I have another issue that is in my lower area where the long screws are. They are giving me bad pain also. I don't think there's anything to do about that except remove them. And that is probably not an option for me.
    Another area is the upper thoracic area is giving more fits. The screw at the very top(T4) of my fusion is painful . It feels like that screw is too deep.and it is scarey. But the last X-ray a couple mo. ago showed everything alright. I am also having neck and shoulder pain. It feels like my neck is hard to hold up. Had anyone had this problem? I am wondering if I am not going to have to have to go higher in my fusion to help this. It is causing shoulder pain real bad. I think this cold weather is some of the problem as far as muscle spasms. But the screws in my hip bones or wherever those long screws are , are a problem. Anyone ever have them removed? Guess I'm just wondering if anyone else have had these issues, and what are some treatments you have done to help? Any help would be greatly appreciated! Thanks to you all for listening to my problems. And hope you are all coping well~~~ Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  • #2
    Oh, Linda, I hate to hear this. If I were you, I would call Dr. Lenke's office and see what they say.
    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


    • #3
      "my back feels like I have a corset on it and someone is tightening it as tight as they can get it!"


      I feel the same way when it gets cold.

      Melissa
      Melissa

      Fused from C2 - sacrum 7/2011

      April 21, 2020- another broken rod surgery

      Comment


      • #4
        Hi Linda, with the upper shoulder pain have the Dr check your cervical. It seems as if these high fusions bother the cervical also. It is funny how neck problems effect the shoulders and arms. I have no solution for the cold except I wear a polar fleece vest. It keeps me warmer and then I feel better. I live near Chicago and understand the cold.
        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


        • #5
          Hi Linda, I can feel your pain. I had my surgery in 2012 and was good recovery the first year then strange pains have come to invade the back. Nobody knows or can explain including the surgeon who never really address it and it nothing shows on the xrays.

          I can imagine that after being crooked for 50 years, the body adjusted slowly. Then, one surgery with metals, screws and maneuverings straighten the spine as much as it can in matters of hours or days MUST produce a great amount of pain for the patients; us.

          I wish there is a science that would explain this to patients before going into surgery to understand what is in store; the consequences of having a supported, corrected curve.

          gardenia
          Gardenia
          Baja California, Mexico & El Centro, Ca
          pre-surgery 75° and 89° - post ?
          Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
          T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

          Comment


          • #6
            Feeling humbled~~~

            I almost talked myself out of not posting this lasted complaints of mine. When I read through all the brave men and woman on this forum have endured, it humbles me. I felt like I shouldn't complain. But I didn't know how else to vent , except to the people that have seen and been through a lot more than anyone can believe that hasn't been through it. I know that weather is a big culprit.
            Mabechoff~~ you would know if anyone, what this is all about. Isn't that corset thing awful! I just want to take it off if I could! Hope your stating strong for what you have to go through yet!
            Jackie412~~ you too have been through ever so much. And yet you just keep marching on. You and
            Melissa and gardenia are strong and amazing people.
            Gardenia~~ hang in there. I feel for you too. It just isn't easy to live day to day with pain like this. I am praying that warm weather will help. But I have to get through the winter first!! I'm sorry to hear you have issues like this to deal with.
            Golf nut~~ I sent an X-ray to Dr. Lenke and he thought it looked alright. But these Xrays that are taken in my home town leave a lot to be desired. I am going to try physical therapy upon their request that I do it. We'll see. So hope you're still doing well. You are an amazing lady! Golfing at 10 mo. out was so great!!
            And I hope you keep swinging those clubs!! Happy Holidays to you all!!
            Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
            Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
            This started adult onset scoliosis
            July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
            Oct.20th 2010, extended rods to T4 / did osteotomy at L3
            Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
            May 30th 2013 revision
            May 8th cervicle surgery 2016
            May 31st Dr. Gupta revision 2017

            Comment


            • #7
              I am also having neck and shoulder pain. It feels like my neck is hard to hold up. Had anyone had this problem? I am wondering if I am not going to have to have to go higher in my fusion to help this. It is causing shoulder pain real bad.


              I did not notice this statement until now. This is what caused Dr Bederman to fuse higher. My head felt as if it weighed 50 lbs and I could not hold it up
              Melissa

              Fused from C2 - sacrum 7/2011

              April 21, 2020- another broken rod surgery

              Comment


              • #8
                Linda, come down to Puerto Vallarta with me! It was a high of mid 80s yesterday, low in the 60s.

                Suggestions......a heating blanket at night? Heating pad on and off during the day?

                Steroid injection at the screws that are painful? My X-rays at the screws was OK....maybe some slight lucency, but they are new screws. Injection was very helpful for me.

                I found people with pelvic screws removed, but cannot remember the names. Enter "pelvic screws" in the search area.

                For some strange reason, the tightness that I had at pelvic screw area went away with my thoracic revision surgery. It doesn't make any sense, but I am happy about that.

                Wishing you some pain relief. I hope that you can find relief without surgery.

                Susan....rolling out to the pool
                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


                • #9
                  Originally posted by susancook View Post
                  Linda, come down to Puerto Vallarta with me! It was a high of mid 80s yesterday, low in the 60s.

                  Suggestions......a heating blanket at night? Heating pad on and off during the day?

                  Steroid injection at the screws that are painful? My X-rays at the screws was OK....maybe some slight lucency, but they are new screws. Injection was very helpful for me.

                  I found people with pelvic screws removed, but cannot remember the names. Enter "pelvic screws" in the search area.

                  For some strange reason, the tightness that I had at pelvic screw area went away with my thoracic revision surgery. It doesn't make any sense, but I am happy about that.

                  Wishing you some pain relief. I hope that you can find relief without surgery.

                  Susan....rolling out to the pool
                  Susan, I would love to join you in Puerto Vallarta!! I can't keep up with where you are at. But I would love to be there.You are, without a doubt, one reason I felt it hard to complain. you have been through a nightmare. I pray all the hard work you are doing will make things turn around for you , so you can get up and out of the wheel chair for good. Thanks for your post. It is so good to hear from you. You seem to be doing , I pray, a little better with the mental aspect of this mess that happened to your body. And I know that I have know idea, so I apolojize if I'm being presumptuous. After five back surgeries, four trying to fix the mess the first one made, I am just at the point I think sometimes we have to say "uncle"! At least I feel that way right now.
                  It is strange about those big screws changing after your thoracic surgery. How are your legs doing, as far as feeling coming back? I need to see if I missed some of you posts. I have a two yr. Check up with lenke , but not till May. The X-ray he looked at, was taken at a small town hospital. So I don't have much faith in it's accuracy.it's thirteen hrs. to get to St. Louis. I'm going to look in to the steroid shots. You stay strong and keep posting. You are in my thoughts and prayers. Linda
                  Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
                  Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
                  This started adult onset scoliosis
                  July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
                  Oct.20th 2010, extended rods to T4 / did osteotomy at L3
                  Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
                  May 30th 2013 revision
                  May 8th cervicle surgery 2016
                  May 31st Dr. Gupta revision 2017

                  Comment


                  • #10
                    Originally posted by mabeckoff View Post
                    I am also having neck and shoulder pain. It feels like my neck is hard to hold up. Had anyone had this problem? I am wondering if I am not going to have to have to go higher in my fusion to help this. It is causing shoulder pain real bad.


                    I did not notice this statement until now. This is what caused Dr Bederman to fuse higher. My head felt as if it weighed 50 lbs and I could not hold it up
                    Thanks for that post Mellissa. Although I'm about ready to give up on surgeries, mainly because I'v had so many any I'm wore out, I did say to my husband the other day that I wondered if Dr.mLenke went high enough. I feel that way too~~ like my head is too heavy. But I will probably try steroid shots for some relief for now. Hope it works. Thinking of you and wishing you the best~~~
                    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
                    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
                    This started adult onset scoliosis
                    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
                    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
                    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
                    May 30th 2013 revision
                    May 8th cervicle surgery 2016
                    May 31st Dr. Gupta revision 2017

                    Comment


                    • #11
                      Hi Linda,

                      Do you have access to a massage therapist that will be willing to give you massages? I know you live in a remote area and don't know if there are any massage options near you. I've been getting massages regularly for the past year and what a difference it makes with relieving tightness. I had to interview a couple therapists before I found one that was willing to work with me and that I felt comfortable trusting. It doesn't make every pain go away, but it sure does help.

                      I hear you loud and clear on the cold weather issue. What I've learned just this season is to invest in merino wool base layers: socks, shirts, leggings and even undies to wear day/night. The best brands are Smartwool and Icebreaker. My uncontrollable shivering has been GREATLY reduced. I also drink hot water all day and night long. My tea kettle is constantly running. Warms me up from the inside out.

                      When are you due to be in STL?

                      Warmly,
                      Doreen
                      44 years old at time of surgery, Atlanta GA

                      Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
                      Post-Surgery curves ~10 degrees, regained 4 inches of height

                      Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
                      2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

                      http://thebionicachronicles.blogspot.com/

                      Comment


                      • #12
                        Originally posted by Doreen1 View Post
                        Hi Linda,

                        Do you have access to a massage therapist that will be willing to give you massages? I know you live in a remote area and don't know if there are any massage options near you. I've been getting massages regularly for the past year and what a difference it makes with relieving tightness. I had to interview a couple therapists before I found one that was willing to work with me and that I felt comfortable trusting. It doesn't make every pain go away, but it sure does help.

                        I hear you loud and clear on the cold weather issue. What I've learned just this season is to invest in merino wool base layers: socks, shirts, leggings and even undies to wear day/night. The best brands are Smartwool and Icebreaker. My uncontrollable shivering has been GREATLY reduced. I also drink hot water all day and night long. My tea kettle is constantly running. Warms me up from the inside out.

                        When are you due to be in STL?

                        Warmly,
                        Doreen
                        . Hi Doreen, just saw your post. Thanks for all the great tips. Very good ideas!!! I need to get to a massage therapist. BUT I had an injection yesterday in my shoulders, as they were very painful. Well, I woke up at 4:30 this morning in excruciating pain. It was my left shoulder. I got up and I couldn't lift my arm the pain was so bad. I got the ice out and iced it. Went back to the Dr. today, that injected it, and she just felt of my shoulder, and said"give it a couple days"? And walked out! I think she hit a tendon. My other shoulder feels good. I am praying it goes away soon. Holidays and all!!
                        I don't go for my two year check-up till sometime in May. Not sure of the date yet. I certainly need Dr. Lenke's opinion on some of these issues I'm having. My neck is a mess too. Ugh!
                        Again! Thanks for all the "stay warm ideas". I will go online and see what I can find in those brands.
                        I hope you are doing well. I must catch up on you. I know even though I am having problems I still feel blessed to be standing up. Seem like so long ago that we talked in the lobby of the Hotel Lobby. Have a great Holidat Season. Linda
                        Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
                        Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
                        This started adult onset scoliosis
                        July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
                        Oct.20th 2010, extended rods to T4 / did osteotomy at L3
                        Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
                        May 30th 2013 revision
                        May 8th cervicle surgery 2016
                        May 31st Dr. Gupta revision 2017

                        Comment


                        • #13
                          Battery powered heated vests: do a google search. I've found mine to be helpful. Battery placed in the vest's pocket provides "juice" for 2-4 hours, depending on heat level setting. The vest that I have is the "Exoglo" (http://www.exo2theheatinside.com), available in men's and women's versions with a US distributer.

                          Comment


                          • #14
                            I had my first surgery in April 2008. I complained of those screws hurting from the git go. In December 2009, the pelvic screws were removed. Boy, was that a painful surgery. Two incisions, one on either side of the spinal incision, about 2" long and about 2" away from the back, and angled. They cut through all the tissue and butt muscles to get to the screws. Sitting and laying were extremely painful, every move I made. Once the muscles were healed up, the pain was gone and all was well. It took about 4 months for the surgical pain to go away. Felt like I got a lot more mobility, too.
                            Les, Biker Babe, age 56 (at time of first surgery)
                            Fused T2 to S2, posterior only, 8 Apr 08
                            T3 fracture repair and revision, Mar 09
                            Broke left lower rod and pelvic screws removal, Dec 09
                            Scheduled to remove all hardware, replaced everything instead due to non-fusion, Nov 10
                            Remove top 2" of rods and screws, Feb 14
                            Pre surgery degrees: L40, T45
                            Post surgery degrees: L8, T10

                            Happy, joyous and pain-free!
                            Surgeon: C Timothy Floyd, MD, Boise Orthopedic Clinic

                            Comment

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