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  • Surgery Scheduled June 24 and Scared!

    Hey, everybody. I’m new to the forum, but like many others, I’ve been reading your posts for over a year. And I, too, have learned A LOT from all of you and I feel like I know some of you personally!!

    My story is not much different from many of you – I was living life just fine (although I had chronic back pain for no apparent reason). When I was 45 (I’m 55 now) I noticed (what I now know was a scoliosis rib hump) something on my back. I went to my orthoped who said “how long have you had that? That’s scoliosis. “ So, that started my rounds of xrays. At the time, I measured a 23 degree curve. But, I was still running and doing triathlons without much pain, I continued to carry on with life dealing with 4 kids schedules and all of that. I didn’t really think much of it.

    Every year when I had xrays done, my degree would go up by 1 or 2 degrees. I was getting worried, but my pain was still manageable so I just carried on.

    Then, at age 52 I ruptured my L4/L5 disc. I battled TERRIBLE sciatica from that for 15 months. After about of year of the pain, my ortho finally did a CT myelogram which showed the ruptured disc. They recommended surgery but referred me to a scoliosis surgeon in Minneapolis at the Twin Cities Spine Center, Dr. Joseph Perra.

    I went to see him in Feb 2015 and he gave me 3 options: 1) decompression surgery 2) fusion just in the painful area (I think – I honestly can’t remember option 2) and 3) full blown scoli surgery.

    At the time, there was no way I could wrap my brain around that surgery BUT also I had a daughter getting married in June of 2015 so I didn’t think I had time for recovery from scoli surgery and even if I did, I thought it was risky in case I was in that 5 – 15% that have complications or bad outcomes. So, I chose Decompression surgery. He said that wasn’t a bad choice, but that if that’s what I did I’d most likely be seeing him again at some point in my life. I didn’t doubt him as I knew I had multiple issues. I had that surgery April 3, 2015.

    The decompression surgery did relieve the TERRIBLE leg pain, but of course I was still left with the scoli problems. But I managed well & got through the wedding (not without pain though). I knew it can take up to a year for some nerves to “settle down.” I did notice 6 & 9 months out that my calf & foot did get better with time. But, I still can’t walk around the block without pain and I can’t stand very long either. So, needless to say, my life is not normal….. I manage because I have a pretty low-keyed lifestyle and we are now empty nesters. But, I can definitely tell I have gone downhill......

    I have had 2 visits with Dr. Perra about scoli surgery since my first surgery. I have decided to do the surgery and have scheduled it for June 24.

    (Note: my curvature is now 37 degrees thoracolumbar).

    I would have scheduled it sooner, but even before my daughter’s wedding last June, our OTHER daughter got engaged!! Her wedding is this May 28, 2016 so I had to wait after that!! Darn these kids!! I told our 2 boys no weddings for at least a year!

    I have had epidurals about every 6 months. I just had one 3 weeks ago as I was in terrible pain. I hope it lasts through the wedding because I can’t (won’t) do another one anyway. I’ve also developed terrible trochanter bursitis which I had a shot in my hip for that. So, now I’m being really careful not to wreck something else!

    I was a runner, biker, I did Sprint Triathlons, a gym rat and such. And, now I can’t even walk around my small house without pain. I mean, I do it with a smile on my face, but still!!

    So, that’s my story. I’m wondering if anyone knows anything about Dr. Perra or TCSC. I didn’t shop around for scoli doctors as my local ortho referred me to him. He has referred several patients to Dr. Perra. I was going to go to Mayo, but the local docs here say that Mayo refers their bad spine cases to TCSC. I do like him and I like his staff.

    The proposed surgery is: Anterior/ Posterior approach, fusion and hardware from T11 – Sacrum. I do have sagittal and coronal imbalance (although, I’m not sure how much if that is measured in degrees)

    Our oldest son lives in St. Paul (he’s single) so I plan to spend the first 6 weeks post op at his apartment (lucky him)! My husband will be with me the first 2 weeks (1 will be in the hospital), my 24 year old daughter will be with me the 3rd week, and my sister the 4th week – husband will work here Mon – Thurs then drive to St Paul Thurs night and be with me Fri – Sunday. I’m hoping week 5 & 6 I can be alone during the day and then my son will be with me those evenings and nights.

    My first post-op appointment is Aug 4, so if things are going well, I’ll come home and finish recovering here (I live 5 hours from the Twin Cities). But, of course, I will drive up there for future appointments.

    Sorry this is so long. But, I thought if I laid it all out, this wonderful forum could tell me if I’m making the right decisions. I don’t personally have any of my images – I need to get them from Dr. Perra’s office this summer.

    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

  • #2
    Hi Kathy and welcome. I don't know the Dr but 2 weeks in the hospital is a lot. Maybe part of that will be inpatient rehab. The rehab is the key. They show you what you need to know. Because you have to move yourself. After 3 or 4 weeks you won't need much help. Just with driving or grocery shopping. You'll be tired but ok. I went back to work at 7 weeks. I don't recommend it that early but I survived. You just can't lift or push or pull. It sounds like you are well covered.
    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


    • #3
      Thanks, Jackie. I think I said it wrong. They said my hospital stay will be 5 - 7 days. So, my husband will be with me then, and then also the next week at the apartment. I do think I'm covered - probably over kill, but I figured I can always tell someone not to come if necessary.

      Thanks.

      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


      • #4
        Welcome to the forum Kathy

        Sciatica can be quite the battle.....I did that for 6 years and it drove me into my surgeries...

        My doc did his residencies at TCSC years ago......which was were the SRS was founded at in 1966. Many of the scoli guru’s came out of there years ago, so you are in a good place.

        I take it the upper part of your spine is fine?

        Any x-rays you can post? (BTW, That’s my pickup line, smiley face)

        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


        • #5
          Welcome! Sciatica is a bummer. That was one of the 2 pains that initially drove me to surgery (the other being the kyphosis pain). I remember Dr. Hu saying that she was not certain that she could relieve my sciatica pain. I thought...great, go through the surgery and still in pain. That would be a real bummer. I remember the first time that I walked after surgery, the first thing that I wanted to check was my R butt pain. Well, it was gone! I know that I got a BIG GRIN on my face.

          Wishing you luck through your healing journey!

          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


          • #6
            Thanks for the welcome. I rely heavily on the wisdom of this forum. I think my doctor wonders where I come up with some of my questions (smiley face)

            I take it the upper part of your spine is fine?

            Any x-rays you can post? (BTW, That’s my pickup line, smiley face)

            I don't know if I'm replying to a specific correctly (how do you get those blue boxes when you reply to a certain question?) BUT - Ed, as far as I know, yes my upper spine is OK. I don't have my x-rays but I plan to get the disc soon from my local orthoped. I will post them if I can figure it out! I do have a picture of a picture of a picture on my phone. When I look at it, it looks to me like my upper spine is OK. It looks to me like if they swing my lumbar straight, the upper part would follow. Not sure that makes sense.

            I laugh every time you mention the xray pick up lines. It seems like something in a Jim Carrey movie (Love the Austin Powers quotes too!).

            Susan - I appreciate your comment about worrying if the leg pain will go away after surgery. I too think "what if I go through this and I STILL can't walk around the block?? So, every day I think about your BIG GRIN!! I so hope that is me on June 24 or 25!

            I have my pre-op appointments lined up. I'm trying to occupy my mind with our upcoming wedding, not my upcoming surgery.....

            I so appreciate all the support of this forum. So does my husband! He knows reading your posts makes me feel better.....

            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


            • #7
              The surgery does overtake our minds. Keep writing down your questions for your surgeon. No question is stupid. All are important. Check on your upper spine with your doctor. I was originally fused like yours but fractured the vertebra above 6 days after surgery. They had to go back and fuse the rest. Complications do happen.
              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


              • #8
                Glad that something that I have written here has helped someone!!!!

                Kathy, you will BE OK. In fact, you will be so-o-o-o-o-o-o much better than that after surgery. In August 2014, I had emergency surgery to pull a screw out of my spinal cord. Long story.....this is a very rare occurrence and will not happen to you. I tell you this story because I had been a paraplegic for 2 weeks. I had sobbed, been hysterical, begged my doctor not to leave one day "Until you find the reason", was sad, was angry, and then, sent to a "Skilled Nursing Facility" [with bad food and lots of old people wearing bibs at meals] because the medical folks at the hospital couldn't figure out why a woman could go from walking to a paraplegic in a few weeks. I believed that somehow I would get better and then a Spinal Surgeon called me and said, "I'm sending an ambulance for you and I will do surgery as soon as we can". I had never met the surgeon. He was the spine surgeon on-call and I hoped that he knew what he was doing. But, then again, I was a paraplegic with a screw in my spine that needed emergency surgery. I did not have time to be scared. I did not have time to: have an initial appointment-another appointment-ask more questions appointment-preop appointment, check out his credentials, check out the med school-residency-fellowship credentials, check his SRS status [he was not a member as he had just finished his fellowship], check out if his patients gave him good grades, check him out with people on the forum, etc etc etc. He was my savior and my ticket out of my wheelchair. I was not afraid and I signed every paper that he gave me because....I hated being a paraplegic and he offered a ticket out! He discussed all of the risks of the surgery including that I had a "10-15% chance of being a permanent paraplegic". Everything that he said was like water off of a duck's back. In fact, as I entered the operating room with no pre-op meds, I yelled, "Wait, I didn't sign the consent!" The OR nurse assured me that I had signed it and then the anesthesiologist quickly infused some drugs. The rest is history as I can walk now with crutches. I trusted Dr. Hiratzka to remove the screw ever so gently and to give me a chance to walk. I guess if there is so little time before you are informed of your surgery date [like hours], you don't have an opportunity to be afraid. I would never recommend this way of learning this experience, but your comments reminded me of this very personal story and I thank you for giving me the space on your thread to retell it.

                The take home message? Have faith and trust your surgeon. You have chosen your surgeon, and while I did not exactly choose mine, fate brought us together.
                I trusted him. Trust your surgeon. I copied a picture of my first spine surgeon, Dr. Serena Hu and put it on the back of my cell phone. Under her picture, I put a label that said TRUST. I looked at her picture over a hundred times and said the words aloud every time. Two weeks before the surgery, I woke up and trusted her.

                Sending calming thoughts your way,
                Susan
                Last edited by susancook; 04-14-2016, 03:02 AM. Reason: ever the editor
                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
                  I finally got my x-rays from my local doctor. These are my last set - they were taken Aug. 2015. I will get a new set before my surgery. Hopefully my attachments uploaded correctly.

                  Susan - I have a confession: When I first started reading this forum, I read your whole story - TWICE! To me, you are amazing with what you have dealt with and kept a positive attitude. I remember the part about keeping the doctor's picture and saying "trust" when you looked at it. I have started doing that. I do trust my surgeon.....

                  Ed - I can't imagine managing the pain you have. I've read the older post on "pain" and wow, what some people go through......

                  I don't think my x-ray pictures are very clear. The one labeled "from John's phone" is a picture of the monitor when I had a CT Myelogram - it seems to be the most clear and it's from a phone!

                  Thanks for all of your positive thoughts and support.

                  Kathy
                  Attached Files
                  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


                  • #10
                    Trust means letting go and relaxing and believing that your surgeon will do his/her best. I would look at Dr. Hu's picture, take a deep cleansing breath and say out loud, "trust". The morning of surgery, I even asked if I could walk into the operating room and hop onto the table. After the tech finished laughing, he told me that "the insurance wouldn'T cover it". The reason that I wanted to walk was to remind myself that I was doing this proactively, in addition that every step that I took to the OR would be painful and remind me why I wanted the surgery.

                    If you ever want to talk, send me a PM and I will send you my phone # and email.

                    Have faith, trust your surgeon, and look forward to a better life,
                    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


                    • #11
                      My first surgery in NC was with a surgeon who screwed me up badly.
                      I was moving to Southern CA and with the help of Linda, I found an excellent surgeon in the area. He helped me so much. Was it easy? No. I had many surgeries and long recuperations. But I needed to have it done, and I am the better for it.
                      Trust your surgeon . That is the way to get through it

                      Melissa
                      Melissa

                      Fused from C2 - sacrum 7/2011

                      April 21, 2020- another broken rod surgery

                      Comment


                      • #12
                        Just wanted to report that I survived my daughter's wedding in good shape! It was a beautiful day. We flew from KC with our other daughter to Spokane, WA and spent a week with her. Her husband isn't back from his deployment yet so she appreciated having company to make the time go faster. When we were in Spokane, my pain level was pretty low and I was able to hike and walk anywhere we went! It was really freaky. I was thankful, but I had not been able to be on my feet that much in such a long time! We don't know if it was the climate or the stress of the wedding being over or what. Spokane is a beautiful place and I'm glad we got to spend time there before my surgery.

                        I've had my pre-op physical with my family doctor here. All went well there. I've been catching up at work and planning for when I'm gone.

                        In my last consult appointment with Dr. Perra I had asked him if he would brace me. He said "no - you look strong enough that you wouldn't need bracing." But, then last week I got a call from the company that fits his braces wanting to set up an appointment to fit me! So, I'm not sure what changed there, but I guess I'm OK with it. Better safe than sorry.....

                        One thing I have learned is that the nurses that work for Allina Health Care in the Twin Cities are planning a strike the week of June 19 - 25. My surgery is June 24 so I called Dr. Perra's office to see how this impacts their department. His nurse said it is only the floor nurses so the OR techs and clinic staff will be no different. This had also happened in 2010 and she said that Dr. Perra was extremely happy with the nurses that filled in. Of course, Allina is hoping to settle the dispute before June 19 but in the event they don't, they understand patient's concerns and we have the option to cancel our surgeries. I feel like I've gone through way too much prep (mental and physical) to cancel. Also, I viewed it as I could have a disgruntled nurse taking care of me post-op or a nurse that liked what she was doing. I don't know. I don't work in the medical community so I don't know what to think of this. Does anyone have any input on this? I really can't see me canceling my surgery so I guess it is what it is...... I told my husband his nursing duty list just got longer!!

                        I went off my anti-inflammatories this week on Tuesday. I'm doing "OK" but I certainly feel "more achy." I guess that goes with the territory. The best thing for me is to ride my bike in the morning to work out the stiffness. I guess dealing with more pain is just another indication that I made the right decision to have the surgery!

                        I've had more friends & family offer to help. I really have more offers than I think I'll need, but I'm definitely keeping a list of those offers handy! I did get a gift certificate to Merry Maids so I'm having them come over this week to check out my house.

                        I have 11 more days to try and remain as calm as possible. My plan is to stay busy and TRY to keep my mind off all this. Of course, I just want it done, successful and on the road to recovery. I know unfavorable things can happen, I'm just trying to not go there in my mind.

                        Thanks for listening!

                        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


                        • #13
                          Kathy, Glad to hear about surviving the wedding. I have been to a few “wedding singer” type weddings in my day, and will never forget finding one of the groomsmen laying in the landscaping in a tux passed out at 6AM. He didn’t make it.... The key really was under the mat, and well, when the lawn sprinklers turned on, it was one of those classic moments you never forget. I laughed for a month. I don’t remember any back pain for that one....its amazing how this all works.(smiley face)

                          On post bracing, it probably runs around 50:50. I suppose that they do offer a level of protection.....My post surgical brace didn’t fit all that well since I grew 4 inches, and I had a huge ileus. My stomach was way out there, and it took months for that to settle down. You don’t want to fall down in your immediate recovery.....No bending, no lifting, no twisting, and no falling for a really long time. (6 months min) I didn’t lift more than a dinner plate for 6 months....

                          Forget about cleaning the house. Its your time to heal, its just something everyone has to understand....

                          If you have waited many years like many of us, surgery is this scary thing we have to do. There is no turning back, and there is no looking back. Always look and think ahead. Set realistic goals....its going to take 2 years for a full fusion at age 50 plus so accept the change that will happen.

                          For anxiety, I would go outside and run or fast walk. Deep breathing is also a good idea, get used to it because they will want you doing this in the hospital.

                          I actually didn’t buy anything or prepare for my surgeries....maybe it was my way of thinking that I was going to succeed no matter what happens, and deal with it all when the time comes.

                          Can you have someone post for you while in the hospital?

                          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


                          • #14
                            Thanks, Ed. Yes, my husband will post while I'm in the hospital.

                            That's funny about the wedding. There were plenty of "fresh out of college" kids at our wedding that certainly could have been in that situation!

                            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


                            • #15
                              I’m sure you combed through many of the posts here, but just in case you have any questions, there are quite a few members here that can help answer any questions. Posting to the forum is a great idea since many of us offer different views, which is of great value.

                              You will have to get your meds now from the pharmacy and keep them at home for when you get home. No sense bringing them to the hospital, they will have that covered. (smiley face)

                              It’s time to let go.....and when you wake up, they will get you up standing and doing some short walks with the walker. After a few days, you take that first shower which feels so good. I asked if I could drain the hot water tank at the hospital, they told me to go for it. All 50,000 gallons! Ha ha Hot water works great for pain.

                              My surgeon did his scoliosis training at TCSC years ago and my x-rays probably ended up there at some point. I owe all those docs a heartfelt thank you. (Lump in throat) I guess we all owe them for helping scoliosis patients out.

                              Your in a good place......

                              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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