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  • #16
    Originally posted by titaniumed View Post
    Susan, This is good news.


    I knew right away after I stood up that things were good. (Like an on off pain switch)


    Did you get to keep your screw? You can use it for jewelry or hang from the Christmas tree....He he


    Ed
    No, but I have enough hardware for a windchime. Thanks for your thoughtfulness in responding. Here's hoping that the benefit is long term.

    I will have a second cervical MBB in about a month. Dr. Hart said to wait a month for any back procedure. Am planning on doing just conservative medical treatments for my collapsing cervical vertebrae.

    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


    • #17
      Glad to hear everything went well for you Susan. 3 hr ride home is not much fun, I know all about it.
      Wishing you a speedy recovery.

      Marianne
      Marianne
      rotoscoliosis, subluxation and spinal stenosis
      Surgery April 15, 2015 at age 67
      T11-L5
      Decompression with multiple discectomies
      Concord cages @ L2-3, L3-4, L4-5
      Osteotomies and local bone grafting
      Revision Feb.22, 2018
      Replaced rods
      Took out L5 disk to free up nerves
      Used BPM to help with fusing
      Fused T10-S1 with screws in pelvis

      Comment


      • #18
        Originally posted by susancook View Post
        Dr. Hart only removed my L5 screw. So far I have not had any discomfort in my R leg. Here's hoping that it lasts. Will be in Swedish Hospital until tomorrow when they will pull the drain and I can dope up before my 3+ hour ride home. Pain is phenomenally better than any of my previous surgeries.
        Susan,
        Hi, Susan.

        I'm so glad that your major pain went away almost immediately. Let's hope that it stays that way for you! I live 5 hours from my surgeon, the rides home can be brutal. We drive a vehicle where we can make me a bed in the back. It was a bit tricky getting in and out though..... being short was an advantage :-)

        Hang in there!

        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


        • #19
          Originally posted by KathyInIowa View Post
          Hi, Susan.

          I'm so glad that your major pain went away almost immediately. Let's hope that it stays that way for you! I live 5 hours from my surgeon, the rides home can be brutal. We drive a vehicle where we can make me a bed in the back. It was a bit tricky getting in and out though..... being short was an advantage :-)

          Hang in there!

          Kathy
          Kathy, after my first surgery at UCSF, we bought a foam mattress for the car. The hospital is 12 hours from our home in Oregon, so I stayed at my son's home 30 minutes away in Oakland for 6 weeks and then took 2 days to drive home. The mattress in the back sounded like a great idea until, like you said, getting into the back to lay down on the mattress was a challenge. The best summary of the experience was...."it wasn't pretty".

          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


          • #20
            Some of my preop burning discomfort has returned, but not to the preop degree. I took Hydrocodone for 3 days in the hospital and 2 days after discharge and have been fine since then. For some reason, the spine fellow closed the incision with staples which are very painful to lay on. Yikes! Not a happy camper!
            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


            • #21
              Originally posted by susancook View Post
              Thanks Linda and Ed for your comments. Revision surgery is a slippery slope. The more surgery that you have, the more adhesions or nerve damage are possibilities. Also, the degeneration in my thoracic and lumbar vertebrae are now affecting my cervical vertebrae. Yikes! I am hoping that I can continue without more surgery. I had numerous cervical injections with Xylocaine and steroid and have a medial branch block scheduled. I have a great physiatrist who can see the relationship of bone, nerves, and muscles and has ideas on what might help. The last 2 physiatrists that I went to basically said, "Live with it, we don't know what is causing your problem".
              I am the poster woman for post-op problems: total ventral/incisional hernia, spinal cord injury, instrumentation infection, and pulmonary embolism. Since I broke 4 rods, my surgeon rigged 5 rods that support each other.
              Despite all that has happened and my subsequent disability ( I use crutches and a wheelchair) I am happy that I have a great spine surgeon who has "put Susan back together again".
              Life is a balancing of risk and benefit. I am in a better place than I was before my first surgery.
              Susan
              Susan,

              i'm so sorry for all that you've been through. it sure is a very, very rocky road that we travel post op. Those who make it through with no residual pain do not know how very lucky they are!
              I wish that i could find a good dr that would actually help me, i've seen countless drs that simply say the very same that you just quoted..."cant find a problem, just live with the pain", I can't help but feel that if they were in my shoes for even one day they would have a completely different outlook.

              Best to you!

              Pam
              Pam, age 49
              Thoracolumbar curves 80 and 40 corrected to 20 degrees
              April 20, 2012 surgery with Dr. Lenke
              T-3 to sacrum

              Comment


              • #22
                Pam, Have you tried any CBD products?

                CV Sciences is the only CBD company with a GRAS certificate. (Generally regarded as a safe) They have a higher or highest quality control program.

                Their products are made from hemp, not weed.

                https://pluscbdoil.com/

                https://pluscbdoil.com/cbd-benefits/

                I personally have not tried but I have had a few people mention that they are very pleased with the results of CBD products for pain.

                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


                • #23
                  Hi Ed,

                  I tried to send you a PM. Maybe it didn’t go thru.

                  I have tried a form of CBD sold from my local pharmacy. Tried that and some balm
                  but my pain mgt had a problem with it since their “ test” picked up a trace of THC,
                  I was told their test couldn’t differentiate between CBD oil and the THC
                  in pot, so I was told not to use it.

                  Sure wish I could find some relief since I’m now bedridden with unbearable pain. Would really like to see my
                  two high school seniors graduate, go on to college, and how their careers, life, etc
                  turn out.

                  Thanks and best to you.

                  Pam
                  Pam, age 49
                  Thoracolumbar curves 80 and 40 corrected to 20 degrees
                  April 20, 2012 surgery with Dr. Lenke
                  T-3 to sacrum

                  Comment


                  • #24
                    Pam

                    I didn't know you were seeing a pain management doctor. If you are not getting relief, what are they saying?

                    Since you have seen quite a few scoliosis surgeons with nothing conclusive, you have to wonder what is happening.

                    Unbearable pain is what Jackie is going through with Arachnoiditis. Its basically scar tissue and inflammation in the spinal cord. It's ok to be aware.
                    https://www.ninds.nih.gov/disorders/...formation-page

                    The PM did not come through. I did clear up some room, so if you want to send one, go ahead.

                    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


                    • #25
                      Originally posted by TwinmomTN View Post

                      I have tried a form of CBD sold from my local pharmacy. Tried that and some balm
                      but my pain mgt had a problem with it since their “ test” picked up a trace of THC,
                      I was told their test couldn’t differentiate between CBD oil and the THC
                      in pot, so I was told not to use it.

                      Sure wish I could find some relief since I’m now bedridden with unbearable pain. Would really like to see my
                      two high school seniors graduate, go on to college, and how their careers, life, etc
                      turn out.
                      Hi Pam, Sorry that your pain is so limiting. Where do you live? Is there another pain management doctor that you can see? You, Linda, Jackie, and I are the poster patients for surviving problematic scoliosis surgical outcomes. Many of the folks in the spinal cord injury groups use CBD for pain management. Sorry that it did not work for you.

                      I am 72, so just found out that I have severe arthritis in my R shoulder. Sucks. Just started PT for my shoulder. Embarrassing to be on a first name basis at PT. I use Canadian-forearm crutches and a wheelchair. I am going back to Pain Management on Monday for R leg pain/weakness and cervical pain. I have a progressing lucency in my T1 screw, but challenging to sort out the back pains and figure out if it is really a problem.

                      I will send you a PM.

                      Gentle Hugs,
                      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


                      • #26
                        CVS selling cannabis based "topical"products in 8 states

                        New news for pain sufferers....

                        https://www.cnbc.com/2019/03/20/cvs-...-8-states.html

                        Alabama
                        California
                        Colorado
                        Illinois
                        Indiana
                        Kentucky
                        Maryland
                        Tennessee

                        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


                        • #27
                          But.....

                          Originally posted by titaniumed View Post
                          New news for pain sufferers....

                          https://www.cnbc.com/2019/03/20/cvs-...-8-states.html

                          Alabama
                          California
                          Colorado
                          Illinois
                          Indiana
                          Kentucky
                          Maryland
                          Tennessee

                          Ed
                          If you are unfortunate enough to be in pain management, they won't allow you to use any CBD products. At least in Tennessee they will not.
                          Pam, age 49
                          Thoracolumbar curves 80 and 40 corrected to 20 degrees
                          April 20, 2012 surgery with Dr. Lenke
                          T-3 to sacrum

                          Comment


                          • #28
                            Originally posted by TwinmomTN View Post
                            If you are unfortunate enough to be in pain management, they won't allow you to use any CBD products. At least in Tennessee they will not.
                            It's such a shame "if" you have something that works, and the stop sign is still in place due to legalities, or lack of scientific proof, or approval.

                            How long do we really have to wait while in pain?

                            I think about my dad when he had ALS. He wanted to try some weed, and I couldn't get it for him to try. Now, its legal in my state. He had a huge bottle of liquid morphine, but it was too strong for him and he hated the Fentanyl patch. Again, too strong. He just wanted to get comfortable, not knocked out. Now, they are using weed these days in the ALS community.

                            CBD is non psychoactive. CBD from hemp is legal on a federal level now....The Farm bill was passed in December.

                            I took Celebrex and Bextra many years ago before it was blacklisted. It worked great for (MAJOR) pain in my case.......Now, things have changed and relaxed with these medications. One day its safe, the next day it isn't, and the day after it is....
                            https://www.npr.org/sections/health-...iller-celebrex

                            I am not pro weed, but I am pro choice. When scoliosis patients have tried everything under the stars, its nice to have that extra option.

                            Pam, Nobody knows if CBD or weed will help you. The only way to find out is to try it in a legal state.

                            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


                            • #29
                              I hope the science is coming along on CBD.

                              But what is really coming along is the weeds stocks. Ahead of Canada legalizing pot, pot companies saw huge gains in their stock prices. We caught some of that wave. But you have to get in and out at the right times and pick your companies well. The big player, Tilray, may have capacity issues so we like the smaller companies at this time. And Tilray will likely buy them out at some point.
                              Sharon, mother of identical twin girls with scoliosis

                              No island of sanity.

                              Question: What do you call alternative medicine that works?
                              Answer: Medicine


                              "We are all African."

                              Comment


                              • #30
                                Recently, in the "hardway" weed bet sector I have been trading CVSI, GTBIF, CURLF These are risky ventures, but the financial "growth" projections are mind boggling....GROWTH....and HYPE, take on a new meaning....There is never any guarantee of profits, and yes, you can lose money. Never gamble with money you cant afford to lose.

                                Right now, the general markets are hairy with bear reports happening frequently and bad or questionable global news. The easy no brainer tech days are over (10 year bull run) so you have to pay attention now. You have to weigh risk, have discipline, and weigh time. Sounds a lot like scoliosis.

                                There is a CBD wave happening right now. Many people are saying they like it, it lowers arthritis pain. Weed also has anti-inflammatory properties which is also interesting.

                                For the mind, weed is good for anxiety. I personally do not know how weed would help with acute pain. Our acute adult degenerative pains can be especially difficult to deal with. NSAID's and rest can work well with slow walking. Hot water soaks and swimming also are good things.

                                If anyone does any of these products, please don't drive, stay at home. From a legal standpoint, you can get charged with impairment laws which covers the whole gamut. If you don't "feel" good enough to drive, you are guilty. Its also more important for us because car accidents can send us into serious surgeries.

                                Walgreens has stated yesterday they will sell CBD products through 1500 stores. Last week it was CVS pharmacy with 800 stores. Topical products only in select states.

                                The fastest growing age group for marijuana products now is the age 65 and older group. 7 fold in 10 years. 62% of the general population in the US is in favor.


                                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

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