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  • #16
    Originally posted by PeggyS View Post
    Dawn, you've expressed what I've been feeling. My pain is manageable. I'm not 'wishing' for pain, but it sure seems like it would make the decision easier! If I knew my curve wouldn't progress, I'd opt out of surgery. (I had a 10* increase in the past year). But, like you & Ed, I wonder how much the maintenance I'm doing really affects my life.
    I live in Columbus, OH - grew up west of Cleveland, in Avon. I'm really interested in knowing who your surgeon will be and also who other one is, that you considered. Please send me a pm if you don't want to give that info. on the forum. I'll probably go to St. Louis for my surgery, but I haven't given up the search for a closer option.

    Welcome to the forum. I really appreciate reading about your insight into making your decision & then accepting it. It helps to hear from all of you 'experienced folks', too! Thanks, everyone!
    Hi Peggy...

    Not to freak you out, but a 10 degree increase in a 60 year old is a little concerning. If you have any other unexplained new symptoms, you might want to get checked for something neuromuscular (e.g., Parkinson's).

    --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


    • #17
      perfect timing

      So the rain finally stopped here so I went for a "short" walk. It's my old short run route, just two miles. I haven't walked that much with no stopping in a long time, it was a looong winter. And I will not be doing that again. I was in soooo much pain. And then the next day was a physically hard day at work. My method to maintain just failed and failed big! And I feel like my curve has changed in the past week (is that possible?). My shoulders no longer feel like they're over my hips, I'm off to the left now, like my left shoulder is left of my left hip. How can that happen in just 7-10 days????? My husband says I look the same but I don't think so. My waist wasn't equal before but now it seems to be more unequal. And I have a new ache in my upper back. It feels like my lumbar hump ache. Just that 'normal' constant hump ache but now it's also in my upper back opposite side of my lumbar hump.

      So this is perfect timing since I see my Neuro doc on Thursday. My method to maintain has failed and my commitment is now 100%! My back will never be normal, no PT will hold me together, no injections will solve this and I'm tired of giving up living to avoid pain. My only 'solution' is to have surgery, do the recovery and get back to living. I have done my research, read the stories, weighed the pros and cons; just like all of us scolis, I need to do the surgery and I am ready and now is my time. I know I have the right surgeons, I have the right OR team and have the right ICU team and have my home support. Give me a date for OR and let's get this done! I can not wait to be scared shitless the night before surgery, can't wait for constipation from the pain meds and the mini withdrawal from pain meds. Can't wait for PT to kick my butt to walk 10 feet after surgery. I want the crazy weird healing pains. I want to leave the dropped stuff on the floor (give the cats New stuff to play with). I want to figure out how to wipe my butt without bending or twisting. BRING IT ON! I WANT MY LIFE BACK!

      So.....do you think I'm ready!!!!?? Hell yes! My Neuro doc is Dr Tiffany Perry and the Ortho doc is Dr Orr. Both are Cleveland Clinic docs, makes sense since that's who I work for. They did a great job taking care of my mom and dad so I know CCF as both an employer and as a health care provider. I have great respect and trust in both the system and the people within CCF. (Did that just sound like a programmed response? But it is the truth). I'm ready for this. So in two days I'm ready to meet with my surgeons and get this going! I hope my next post will be an OR date.

      PEG----have you been to Avon lately? Big changes! I grew up in west park and move to Lakewood in 1982 (Cleveland bussing) and graduated in '85. Raised my kids in LKDW and work at Lakewood Hospital. If you still have family in the area, check out Dr Perry as a second opinion or Dr Orr. She is 'just' a neurosurgeon but Dr Orr is a scoli specialist. I see Dr Perry since I have a Neuro background in my job. PM if you need more info since I've been so long winded already, sorry!

      I've read years of post and got to see lots of people travel the same journey I have just started. Some day someone will read my story and gain the confidence to have surgery (I hope) because of me. Just like I gain the confidence from past people and their post. Thank you, thank you, thank you.....your journey has helped me in my journey. Each person has their own twist that they add to this complicated journey. I am grateful.

      To end my long post, a little humor. I love love love my hammock! Since I know our time this summer is limited, I want to be in my hammock as much as possible. But if you have had a glass of wine or more, it is NOT a good idea......can you picture it? Yes, I did flip out of it!!!! LOL! Once my husband knew I was ok, he laughed his ass off and wished he had it on video.

      Good night all and so happy to have you all here......
      Dawn Anne

      Comment


      • #18
        Dawn, you are ready. Hope you'd have the date soon. Good luck!
        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


        • #19
          Dawn,
          I love your sense of humor. What helped me during recovery was keeping in mind that everything I needed for basics, such as, a long handled razor, special tongs for wiping, a sock aide, and grabbers all over the house, would be temporary aides because my condition was eventually going to improve. I have a best friend who is paralyzed and will never be able to walk which kept me from having any pity for myself during recovery. I read that you will have anterior and posterior approach. Dr. Lenke does a reach around to insert BMP to the anterior spine from the posterior side so that only one incision is needed. You could ask if your surgeon is familiar with this.
          You have a good attitude and that is so important!
          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


          • #20
            LOL, Dawn - video of your hammock ordeal would've been priceless! I fell off the back of the golf cart, yesterday! Took a minute on the ground to assess the damage, fortunately I'm ok.

            Linda, thanks for your 'heads up' about other symptoms. I don't have any - I don't think. I was in an accident last summer, that may have contributed to the 10* curve increase.? A few degrees might be due to measurement variables. To me, this confirms that I do need to have the surgery - probably this fall. I'm waiting for my husband to heal from his surgeries so he can take good care of me!
            Peg
            61 yrs old
            75 degree lumbar curve with thoracic kyphosis
            T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
            Working on healing in Columbus, Ohio!

            Comment


            • #21
              Originally posted by golfnut View Post
              I read that you will have anterior and posterior approach. Dr. Lenke does a reach around to insert BMP to the anterior spine from the posterior side so that only one incision is needed. You could ask if your surgeon is familiar with this.
              You have a good attitude and that is so important!
              This is a valid question from Karen.....Of course any usage of BMP other than done with an ALIF would be considered “Off Label” and not recommended by the FDA. Dr Lenke does TLIF with BMP, but then again he is Dr Lenke.....(smiley face)

              When Karen Ocker had her bowel obstruction last year, and more than likely due to “Adhesions” or “scar tissue”, we learned an important lesson from her....After you have had an ALIF, this kinda sinks in. If you are reading Karen, we miss your posts. I hope you recovered ok from the last surgery.

              I wasn’t about to dictate procedure with my surgeon....He explained that fusing from the front and the back solidifies and increases the integrity of the construct. I don’t think he wanted to chance a PLIF on me while using BMP. I am kinda wondering if ALIF is only used on the worst lumbar scenarios???? What exactly ARE the parameters for ALIF???

              I do know that after my surgeries, ALL, and I repeat ALL pain in my lumbar is completely gone. I never expected this much success. My L5 was a triangle shape at the base of a 70 degree curve. The surgeons can also trim more bone spurs and have better access to the front of the spine with this method....Removal of the disc in the spinal cord area is another thing that probably supports ALIF, I have read that sometimes they cant get all the disc material out and this can present problems.

              I had a vascular surgeon dig the hole.....It nice to have these guys hanging around. Bring em all in I say! The more the merrier!

              Pros and cons.....valid questions.....

              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


              • #22
                Ed,
                I may not have it correct. . . I don't think he does an anterior approach, but I could be wrong.
                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


                • #23
                  Originally posted by ZDawn View Post
                  I have done my research, read the stories, weighed the pros and cons; just like all of us scolis, I need to do the surgery and I am ready and now is my time. I know I have the right surgeons, I have the right OR team and have the right ICU team and have my home support. Give me a date for OR and let's get this done! I can not wait to be scared shitless the night before surgery, can't wait for constipation from the pain meds and the mini withdrawal from pain meds. Can't wait for PT to kick my butt to walk 10 feet after surgery. I want the crazy weird healing pains. I want to leave the dropped stuff on the floor (give the cats New stuff to play with). I want to figure out how to wipe my butt without bending or twisting. BRING IT ON! I WANT MY LIFE BACK!
                  You go, girl! You're going to do great! Just keep that fire going and let it carry you through!
                  Surgery June 18 by Dr. Errico at NYU Hospital for Joint Diseases at age 41.
                  Fused T10-Pelvis.
                  "Ask me about my brand new lordosis!"

                  Comment


                  • #24
                    another appointment

                    So neurosurgeon doesn't think I'm ready for this. My "expectations for surgery results are not in line with what surgery can offer." She unsure if my pain complaints will be fixed by fusion and unsure if it will correct my numbness in my leg. WTF! She wants me to see the ortho doc to see if I need my hip fixed first. And not do a fusion at this point. "I don't want you upset with the results of the fusion and be unsatisfied. It's some thing that can't be undone." I explained that I've done my research and understand the recovery and the end results.

                    So off to the ortho doc (who is a scoli specialist) to see how fixing my hip and not my back will help me. I have psoas (sp?) Pain that injection helped for only 4 days. Also bursitis and sciatic pain, all of this is my left hip. My sciatic pain does not effect my whole leg just from around S1 (upper butt) to my upper back of my thigh. Of course I have lower back pain that is great on the right than left and it is not constant. It flares up when I do too much and laying down is the only thing that helps. My constant hump pain is mostly gone after my facet injection.

                    My whole right leg and foot is numb. And some days there are left leg and foot numb issues. My skin is numb across my lower back and my skin across my groin area. It seems like it has gotten worse in the past two weeks. I told her I was concerned about permanent nerve damage. She said an acute issue will not cause perm damage. I also had told her, earlier in the appointment, that I feel my curve had slide off to the left. She said it still looked balanced.

                    I guess it's off to the other half of this team, ortho doc. I guess I'm just really confused that my first appointment with the Nero doc, she's the one that said fusion was the only solution, that soon was better and that after recovery I could go back to work and running. And now she doesn't think this is the right thing for me and I'm not ready.

                    I'm just so confused and frustrated. Because I'm approaching this with logic, protect my back from further changes, avoid nerve damage and be able to go back to living because my pain will be gone. I ended up in tears of frustration that a couple months later and nothing has changed. I can live with pain, it's not going to kill me. But I want to stop any progression and protect my nerves. It just seems like a no-brainer to me. UgH! So off for another appointment.....

                    Comment


                    • #25
                      Oh, Dawn . . . that's a whole lot of frustration! Your appt certainly did not go the way you expected. I hope your ortho has some answers for you. Please keep us posted. Take care.
                      Peg
                      61 yrs old
                      75 degree lumbar curve with thoracic kyphosis
                      T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
                      Working on healing in Columbus, Ohio!

                      Comment


                      • #26
                        Originally posted by ZDawn View Post
                        I'm just so confused and frustrated. Because I'm approaching this with logic, protect my back from further changes, avoid nerve damage and be able to go back to living because my pain will be gone. I ended up in tears of frustration that a couple months later and nothing has changed. I can live with pain, it's not going to kill me. But I want to stop any progression and protect my nerves. It just seems like a no-brainer to me. UgH! So off for another appointment.....
                        Hi Dawn...

                        This is probably not going to be a very popular answer, but I think I can understand why your surgeon might think you have unrealistic expectations. I don't know you, and know very little about your history. While you're saying that you know that you might still have pain, you're also saying "my pain will be gone". I suspect that's what your surgeon is picking up. Conservative surgeons want to do surgeries on patients who stand the best chance of having good outcomes. When a conservative surgeon sees a red flag, they react the way your surgeon did. I think a patient who says "I'll be out of pain" stands a reasonable chance of being very disappointed with their outcome. Unfortunately, scoliosis surgery is not a magic bullet. While a relatively small percentage of us truly have no back pain after surgery, the vast majority of adults who have scoliosis surgery end up with some permanent back pain. Did you know that somewhere around 80-85% of all adults have back pain? So, if most people with straight backs have back pain, it's really unreasonable to believe that those of us with curved spines might live without pain.

                        I know that you read a lot about people who have great surgical outcomes and think surgery was the best thing that ever happened to them. I read them too. Hell, I'm one of them. But, hardly a week goes by that I don't get an email, PM, or a phone call from someone who doesn't want to scare other people by posting their story.

                        So, my advice would be to take a little time and jump through the hoops that your surgeon has set before you. If you're really certain that surgery is the right thing for you, try to transmit that you know there are significant risks and that you might be worse off afterward, but that you're willing to take the risk to have a chance at having a better quality of life. Hopefully, the surgeon will pick up on that. In the meantime, you never know when one of those hoops will end up being a better solution than scoliosis surgery.

                        Regards,
                        Linda

                        P.S. BTW, I can imagine how frustrating it must be to get the kind of news you go. When you make the decision, you think it's a done deal.
                        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


                        • #27
                          What a frustrating appointment. If you are really serious about having surgery, then do what your surgeon wants you to do and then go back to see her.

                          Melissa
                          Melissa

                          Fused from C2 - sacrum 7/2011

                          April 21, 2020- another broken rod surgery

                          Comment


                          • #28
                            Hi Dawn,

                            I really feel for what you are going through. I have dealt with so many surgeons over the years whose abrupt bedside manners were incredibly disheartening. One of the very top surgeons in Philadelphia told me I should "wait to have surgery till I've had some kids and I'm bored in my 50s living in the suburbs." I was so shocked by his presumptuous and sexist attitude I think I could barely speak. I guess my point is, when you're living with pain, and it's taken you a while to make a very hard decision to attempt to change your life for the better, you'd like someone to treat you without condescension.

                            It's very important that surgeons be conservative. I get that. I didn't read anything in what you said that indicated you were giving yourself false hopes. You seemed realistic. Deciding to have surgery requires some optimism and I see nothing wrong with what you were saying. But, follow the surgeon's advice and talk to the scoliosis specialist. I was under the impression that leg pain was one of the types of pain that often has very successful results after surgery. Perhaps your pain is not related to your scoliosis, so it's worth exploring, but a good surgeon will have a good idea where your pain is coming from.

                            The surgeon who performed my surgery told me there was no guarantee the surgery would fix my pain. But he did say, straight up, that the persistent pain in my left side was caused from my left lumbar curve and it would be eliminated. He was right. It has completely gone.

                            Of course scoliosis surgery is not the end all be all to back pain. I think most are aware of that even if they aren't able to articulate it in a way that reassures the surgeon. If you live a sedentary lifestyle and sit at a desk all day long, you are going to encounter back pain. But I think what reassured me when doing the research were the number of people who were active at one point pre-surgery, had to gradually decrease what they loved doing, but then were able to eventually resume their activities again post-surgery. And I have encountered people who have had very successful results that don't post on forums since they just don't see the need.

                            Anyways, just my two cents. THe very best of luck to you in your journey. Keep talking to people and exploring options and try to keep your chin up. There are a lot of really great people on this forum who will support you in whatever you decide!

                            -spring chicken
                            Surgery Jan 6, 2014 at 38 yrs
                            Posterior Fusion T10-L4, osteotomy 1 lev.
                            Pre op-Thoracolumbar Curve-50 degrees

                            Comment


                            • #29
                              Is it common to have a neurosurgeon on a team? I had three consults with orthopedic surgeons, all scoliosis specialists before I decided to pull a trigger. My chosen surgeon did not have any neurosurgeon working with her on my case. May be your appointment with ortho doctor will go better?
                              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


                              • #30
                                I only met with Dr. Lenke. I don't know the standard procedure. I certainly wouldn't have wanted to hear conflicting recommendations for or against surgery.
                                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

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