Announcement

Collapse
No announcement yet.

WOOOO HOOOO, Finally....I've got a surgery date- It's going to be March 13, 2019

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #31
    Originally posted by jborden View Post
    Ed, how many inches did you get back?
    On my waist? You don't want to know. I am getting so heavy these days, I am going to change my user name to Ed Zeppelin....

    On my height, 4 inches. I had (5) PEEK spacers installed from the front, they are 13mm thick, so that alone is 2.559 or a tad over 2-1/2" of plastic in my lumbar spine. My lumbar was in really bad shape. I never expected it to come out the way it did, and I have zero problems in my lumbar spine. It took me years to even believe it, and my surgeon just shakes his head.

    I remember when Kathy called me from the hotel room a few days after her surgeries at Twin, but I don"t think she remembers.(smiley face)

    Leanne set the record.... She called me 3 hours after getting off the table (Full Fusion) and sounded pretty good. I couldn't believe it. John JDM555 also posted here just a few hours after his surgery many years ago....

    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


    • #32
      Originally posted by jborden View Post
      Hi Y'all,

      Thank you for all the kind words and advise. I agree, I have gotten a lot of information and confidence from your messages.

      Looking at my latest x-rays blows my mind. How can I still be standing, breathing.... T4-11 57.5 degrees, T11-L3 is 84.6 degrees. Kyphosis is 67.3 degrees and Lordosis is 43.7 degrees. I don't recognize my body when I see these films. I'm only 5' 3/4" now and I used to be 5' 4 1/2". so my organs/ stomach are all crammed together. Looking forward to taking in a deep breath.

      Ed, how many inches did you get back?

      I will update you all as soon as possible.

      Again, I can't tell you what a lifeline you have been. Only we truly understand all that this does to us....physically, mentally and emotionally.

      Much Love,

      Jenson
      I gained two inches after my surgery
      Melissa

      Fused from C2 - sacrum 7/2011

      April 21, 2020- another broken rod surgery

      Comment


      • #33
        I was 5 feet 5 inches before my surgery. I’m now 5 foot 6.5 inches taller. I Gained 1.5 inches from my surgery
        Kara
        29
        Boston Brace 4.15.05 to 5.25.06
        Posterior Spinal Fusion 3.10.10
        T4-L2

        Comment


        • #34
          Originally posted by titaniumed View Post
          On my waist? You don't want to know. I am getting so heavy these days, I am going to change my user name to Ed Zeppelin....


          I remember when Kathy called me from the hotel room a few days after her surgeries at Twin, but I don"t think she remembers.(smiley face)


          Ed
          LOL! You are right Ed, I don't remember talking to you!!

          Jenson - I gained 2 inches after my surgery. I also have 5 Spacers in my lumbar region.

          Kathy
          Decompression surgery L4/L5
          April 3, 2015
          Twin Cities Spine Center - Dr. Joseph Perra
          Fused from T11 - Sacrum anterior/posterior
          June 24, 2016 - 55 years old at surgery
          Twin Cities Spine Center - Dr. Joseph Perra
          Before Surgery: 42 degrees lumbar, 28 degrees thoracic
          After Surgery: 10 degrees lumbar, ?? Thoracic
          2 inches taller

          Comment


          • #35
            Its hard to remember things or talking with people after our surgeries. I don't remember my visitors for the first week....

            Dr Hey should be operating on Jenson right now.

            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


            • #36
              I was 4' 10" before surgery and thought that I might qualify for Little People of America club. I gained about 3" with surgery.
              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


              • #37
                Originally posted by KathyInIowa View Post
                LOL! You are right Ed, I don't remember talking to you!!
                Yeah, its funny, we can talk away and we don't remember....

                This reminds me of Rod Serling and the Twilight Zone. Deep anesthesia is like a dimension of imagination.....

                (this will bring back some old memories)
                https://www.youtube.com/watch?v=NzlG28B-R8Y

                The thing is, all of us that have done scoliosis surgery have been there....and some of us, many times.

                Anesthesia is not something to be afraid of....Most of our fears are not necessary.

                There have been studies on this matter for initial patients, but I have not seen this for revision patients. It almost deserves its own thread. It seems that many revision patients have little or no anesthesia related anxiety walking back in because they know what to expect.

                I wasn't too afraid for my scoliosis surgeries because I was under for a previous surgery. I don't know how or if this affected my outcome. I am thinking it was positive.

                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


                • #38
                  LAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA, singing from the rooftop!

                  Hi Y'all,
                  I had some complications that have made it pretty rough but I'm improving now.
                  Surgery went good except for the lower lumbar curve had self fused because I waited so long to have surgery. (thanks to all the specialists locally that told me no one would touch my spine) So Dr. Hey was able to correct my major curve, correct the rotation and get rid of the large hump. I am now fully supported and don't have to worry about my spine continuing to collapse.
                  I was elated after surgery when I could wiggle my toes. The next morning I got up and decided I wanted to walk. I did it! but as the day wore on I started feeling worse and worse. I was very anemic but my blood count was coming back up so we decided to wait on more blood. I got released on Saturday night and I just wanted to go home. My nurse wasn't giving my pain meds as directed by the Dr. and I just wanted to be in control of my pain myself at that point. We came home and I continued to feel worse and worse. I couldn't stop coughing and I swelled with fluid and my thigh was painful to touch. They wanted me to go to the ER to get checked out on Sunday. They checked my legs for blood clots and my lungs also. They tested me for the flu and low and behold I had gotten" Influenza A" 2 days out of surgery. Unbelievable!!! I was so sick and it made the pain so much worse. Plus I coughed nonstop which killed my back, ribs, lungs, etc. I guess some people swell up with fluid in response to major surgery. So the next 2 weeks were pretty brutal but I am finally feeling better.
                  I tried to reduce my pain meds but I think I was being too aggressive with it. It's not worth suffering and not sleeping. I went back up on them for a little bit longer, and then I'll try reducing them again.
                  I've been walking a lot and listening to my body. I don't know what I would have done without my daughters and husband though. I've never been so completely needy. Little by little I will get myself back...….

                  Talk soon,

                  Jenson
                  Jenson

                  56 Years old and awaiting spinal correction surgery-

                  I have a double curve that is buckling in the middle and getting worse due to degenerative disc disease, facet arthritis and osteoarthritis.
                  T4-11 is 50 degrees, T11-L3 is 78 degrees. L4-5 laterolisthesis 8mm, trunk buckling 2.4 cm.

                  Comment


                  • #39
                    Jenson

                    Influenza during immediate recovery sounds horrible! What a way to find out about the coughing pains we go through after our surgeries....Its horrible without surgery!

                    Your only 19 days out now, I don't think we have ever had any adults (age 50) wean off meds that fast before. It usually runs in the neighborhood of 6-12 weeks depending on pain. Constipation can be a problem if one takes meds, it is almost guaranteed. Drink water, sip water all the time. Water keeps things working properly.

                    Keep notes on everything. Meds, food, bowel, walks. If you have any questions, ask.

                    Congratulations! You made it.

                    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


                    • #40
                      Jeez the flu after surgery that sticks. I’m glad your doing better jenson
                      Kara
                      29
                      Boston Brace 4.15.05 to 5.25.06
                      Posterior Spinal Fusion 3.10.10
                      T4-L2

                      Comment


                      • #41
                        Ya, It's been tough. I felt better and then started coughing again... It's not nearly as bad as right after but it still hurts.
                        The pain is changing daily. It's weird. It's been pretty numb along the incision, which is from the top of my back to my behind crack. I read somewhere how the nerves go through all kinds of injury and healing. That sounds like a lot of what's going on. There's been pain that shifts from between the shoulder blades and then down lower, etc. I can't seem to be comfortable anywhere for over an hour. All night long, all day long, it's musical chairs and walking. Heat pad on my chest, ice on my back...... I also have had a lot of pain in my left thigh from the inflammation. It stings to touch and aches at times. The fluid was not something I had heard about before but the PA assured me that it happens to some people after major surgery. I've lost about 10 pounds of fluid but still have quite a bit in my thighs and stomach. At least it's staying out of my feet now.
                        I'm thinking I may need to try the egg crate because it's just not improving. I seriously wake up every hour and need to stand up and walk a little.
                        Ed, I guess I was far too aggressive with the pain meds. It was not working for me. I will try again in a few weeks but for now it's important to be able to do what I need to do to get better. ( and pain meds are necessary for that!!)

                        Let me know any suggestions that may make it easier. I can't wait to feel ok again.

                        Thanks,

                        Jenson
                        Jenson

                        56 Years old and awaiting spinal correction surgery-

                        I have a double curve that is buckling in the middle and getting worse due to degenerative disc disease, facet arthritis and osteoarthritis.
                        T4-11 is 50 degrees, T11-L3 is 78 degrees. L4-5 laterolisthesis 8mm, trunk buckling 2.4 cm.

                        Comment


                        • #42
                          Jenson, We know. We know you are struggling.....please understand that these "full" scoliosis surgeries we do as adults, are serious.

                          I have called it "survival mode", (first 6 weeks) where every minute of the day is spent trying to get comfortable. Sleep becomes our most important thing. There is no REM sleep and it takes many hours (4-5?) to get there.....It took me a year to sleep 8 hours. Surgical patients need to be left alone without disturbances so they can sleep. Sleep deprivation is so exhausting.....
                          https://en.wikipedia.org/wiki/Rapid_eye_movement_sleep

                          A latex foam topper 2-4 inches thick will help with your sleep and it doubled my sleep time. I used mine for 1 year. This reduces the hard pressure points laying on a mattress. Its a HUGE help. You can find these locally, and cut with a knife if need be. I had mine cut off because my shoulder and arm were broken.
                          https://www.homedepot.com/p/Lucid-3-...-304737027-_-N


                          The meds (opioids) are a careful balance of pain.....we have seen quite a few members (I always talk about adult over 50) that ask "how do I get off this stuff?" around the 5 week mark...... This means that they are thinking about it..... Immunity has built up, pain is hard to control, and the oral opioid's, they just don't seem worth it anymore.

                          The eventual termination of pain killers is the hardest part. For me, I was 5-6 weeks and just couldn't handle it much longer (Percoset 7.5, Oxycodone) The easiest way to reduce is to space your dose times out. (Keep notes) Or, you can cut your pills. Get permission from Dr Hey first and let him know what is going on. Use a pill cutter, (sold at pharmacies) do not pre-cut your pills. Do not cut pills without doctor permission. Always inform your surgeon of any pains or changes in pains. Good or bad.
                          https://www.amazon.com/s?k=pill+cutt...b_sb_ss_i_5_11

                          One pain doctor at one of the Linda Racine's UCSF scoliosis meetings years ago mentioned that any medication can be weaned without a Hollywood style withdrawal, in 5 weeks. Reduction of 20% per week. I will never forget that since I went through all of that, it was the hardest part. Of course, I wasn't on Paxil which I have read is the absolute worst to wean from. I have seen this as my neighbor could not wean and I saw the meltdowns when the dose times were missed. It takes a strong mind to battle depression, I refuse to let this happen. Changing frame of mind through setting is a good way. (Leave the house, visit with friends) Escaping reality through comedy works quite well. This is why I used to post Benny Hill videos years ago. It was an escape through laughter. Pain disappear's when you laugh and its amazing how this works. Here are some of the old school Benny Hill videos. Silly stuff. Remember to laugh often.
                          https://www.youtube.com/watch?v=Zat9CRfUr-E
                          Rainy and Sunny Originates from the Swiss Cuckoo clocks
                          https://www.dailymotion.com/video/xy8e90

                          When you get to that point, and you quit, the pain will rise. This is where hot baths and showers help out. Boil that pain away, and go to bed and try to get some sleep. After about 48 hours of this hell, (freezing, sweating, vomiting) the pain will reduce, and it does happen quickly. I replaced meds with nutrients which helped quite a bit. Yogurt and blueberries are one of my favorites. No dairy.

                          Water dilutes, and it dilutes the chemicals in your system. I am not sure how long this actually takes, but the body is going through biochemical havoc trying to re-adjust back to normal. You will feel all sorts of changes through the medication-weaning cycle. Hot flashes, vomiting, freezing, sweating, and all the typical scoliosis nerve related stabs, jolts, twitches that we feel. As nerves heal, they seem to do this in steps. Groups heal and all of a sudden there is improvement. Its so strange because it is not a progressive thing. You wake up and realize that a certain area is so much better. Nerve pain is either on or off like a light switch and there is no in-between pain setting.

                          I had incredible edema in my legs and feet. My ankles were the size of footballs. The best way is to walk it out. The post surgical edema or fluids come from changes in hydrostatic pressure during surgery. Its an involved subject matter. In time, this will reduce....Walk in an erect position, not leaning over a walker. Erect like a model on a catwalk.
                          https://en.wikipedia.org/wiki/Edema

                          I took 5 one hour hot soaks in my oversized master bath tub for 3 months. 106F degrees is great at pain control and it is easy. You need a deep tub so you can float. Drink a lot of water with you when you do hot water therapy. You lose water quickly sitting in hot water. 4# in 20 minutes. Becoming dehydrated creates serious problems.

                          Your mind is the most powerful tool in all of this. Your goal setting should be flexible and adjustable, in other words set no time frame and take things one day at a time. All my assumptions after my surgeries were wrong. All the things I thought I couldn't do, I can do now. Adapt with a smile, and know that many of us have made it through scoliosis surgery. There is light at the end of the tunnel....it will come slow and easy.

                          Hang in there

                          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


                          • #43
                            Jenson...

                            The sleeping issue and not being able to stay in one position for more than an hour is so familiar to me. Just reading about it gave me anxiety. After my revision surgeries in 2011, I actually ended up in the ER. I realized shortly thereafter, that I was simply unable to deal with the issues, as I had gotten almost no sleep for a week. Hang in there. It will improve before too long. And, not that it's the same thing, but I had thigh pain then as well. It wasn't until I had injections in my trochantera bursas that the pain completely resolved. If the thigh pain continues for more than a few months, have your surgeons' office check you for tronchanteric bursitis. It's not an uncommon problem.

                            --Linda
                            Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                            ---------------------------------------------------------------------------------------------------------------------------------------------------
                            Surgery 2/10/93 A/P fusion T4-L3
                            Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                            Comment

                            Working...
                            X