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Thread: At it again and crossing my fingers, toes, anything I can...

  1. #1
    Join Date
    Jan 2013
    Posts
    21

    Wink At it again and crossing my fingers, toes, anything I can...

    Hi everyone,

    I don't post here as much as I should and I feel ashamed for wanting a pity party now...but here goes: I am having another revision surgery on September 5th to correct my issue. Get comfy, and enjoy the shortened version: I had my "original" revision surgery May 9 where Dr. "X" put titanium rods from T11-S1 (this is my second curve). My first had been fused in '87 with stainless steel. Okay, so I make it through the 11 1/2 hour surgery fine and dandy; in fact I have been reminded I was singing Mr. Rogers Neighborhood, asking my 11 year old son to sneak me in chocolate chips, telling him NOT to pick up the money that is on the ground in the parking lot and singing Pink Floyd. Well, the next day I took a nose dive and they discovered a blood clot in my left lung - first hurdle. Then I proceed to come down with pneumonia - second hurdle. Then after both of those two things, I apparently wasn't breathing well enough and they had to intubate me with the respirator. Total time in the hospital - 28 days all of which but 10 hours when I was in my own room, spent in ICU. Then I head from the hospital to Inpatient Rehab for another 10 days. So I got home for good on June 1.

    Since the surgery, I have developed a hunch in my back, massively tight hamstrings (working on not bending my legs anymore), and since our rods are straight and I'm hunching, yep, they have made a lovely protrusion/knot-like-thing outside of my back, causing me pain. He's going to go in and cut the top part of the new rod from the screw up (hopefully). If that doesn't let it "relax" then he'll undo the screw (chuckle).

    Anyway, I am 42 years old, I consider myself not too frumpy; I have an 11 year old son who is the world to me (he's from Ukraine) and I hate myself right now. I hate the way I look, I hate the way I feel. I used to have boobs (sorry guys) but now, I'm lucky if I'm a high b. My husband keeps telling me it's okay, he loves me just the way I am, yada yada yada but I want to look at him and everyone else and I say, "really??? this is attractive to you?" I hate going out in public and it's worse because we live in a small town and now school starts this week. I was recently approved for disability and now, after working since I was 16, I am in so much pain and depressed I am now on disability.

    I guess I was just wondering how everyone feels...do you all or have you all gone through a stage through all of this where you think to yourself "I hate myself for the way I look"???

    Again, I hope I don't come across as someone who is expecting a pity party, just needed to get some things out of my head.

    Thanks everyone,
    Chris

  2. #2
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    I know it's no help, but my heart goes out to you. You've been through so much. Have you had a second opinion? Or going back to the same surgeon?

    Hopefully someone here who's been through a similar torrid time can give you some confidence and strength and I hope this next surgery is successful and your last.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  3. #3
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,691
    Chris,
    The forum is the perfect place to vent. You certainly have had way more than your share of complications. I hope that your upcoming surgery can resolve all of your issues. I may not know what I'm talking about, but I am pretty sure that Dr. Lenke bends the rods before inserting them so that there is a lordosis which is what prevents flatback syndrome (I think). Do you know if your rods were inserted totally straight?
    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/

  4. #4
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    CHRIS: I am glad that you wrote again because I was really worried about you from your last post. I wish that you lived near me, as I would come over and give you a big hug. You really need it. I have not met you, but I bet that you are beautiful just the way that you are [playing on your earlier comment about Mr. Rogers]. In the ICU, I sang "Somewhere Over the Rainbow", did a hula dance, thought that I was in a British tavern and that the cranberry juice was awesome beer!]. I bet that your husband genuinely loves you and that your son adores you and would love to be your nurse when you get home from the hospital.

    Sounds like you have had MORE than your share of bad outcomes, and I hope that this time, that everything goes well, and that you are on the mend. Maybe when they straighten you out, your boobs will pop out and be restore to whatever they were. I imagine that your self concept will improve once you don't look like a little old lady [I am a little old lady, but try not to look like one!].

    This is the place to share your frustrations....no such thing as a pity party, but I have done my share of that on this blog. Please feel free to share your feelings here and we will listen.

    Sending good thoughts, a big hug, and wishes for a great recovery this time. You certainly deserve it!
    Susan....who looks like she is pregnant w/ her menopausal baby from an incisional hernia, but my husband loves me anyway!
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision 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 + prayer

  5. #5
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416
    Quote Originally Posted by Christyne View Post
    Hi everyone,

    I don't post here as much as I should and I feel ashamed for wanting a pity party now...but here goes: I am having another revision surgery on September 5th to correct my issue. Get comfy, and enjoy the shortened version: I had my "original" revision surgery May 9 where Dr. "X" put titanium rods from T11-S1 (this is my second curve). My first had been fused in '87 with stainless steel. Okay, so I make it through the 11 1/2 hour surgery fine and dandy; in fact I have been reminded I was singing Mr. Rogers Neighborhood, asking my 11 year old son to sneak me in chocolate chips, telling him NOT to pick up the money that is on the ground in the parking lot and singing Pink Floyd. Well, the next day I took a nose dive and they discovered a blood clot in my left lung - first hurdle. Then I proceed to come down with pneumonia - second hurdle. Then after both of those two things, I apparently wasn't breathing well enough and they had to intubate me with the respirator. Total time in the hospital - 28 days all of which but 10 hours when I was in my own room, spent in ICU. Then I head from the hospital to Inpatient Rehab for another 10 days. So I got home for good on June 1.

    Since the surgery, I have developed a hunch in my back, massively tight hamstrings (working on not bending my legs anymore), and since our rods are straight and I'm hunching, yep, they have made a lovely protrusion/knot-like-thing outside of my back, causing me pain. He's going to go in and cut the top part of the new rod from the screw up (hopefully). If that doesn't let it "relax" then he'll undo the screw (chuckle).

    Anyway, I am 42 years old, I consider myself not too frumpy; I have an 11 year old son who is the world to me (he's from Ukraine) and I hate myself right now. I hate the way I look, I hate the way I feel. I used to have boobs (sorry guys) but now, I'm lucky if I'm a high b. My husband keeps telling me it's okay, he loves me just the way I am, yada yada yada but I want to look at him and everyone else and I say, "really??? this is attractive to you?" I hate going out in public and it's worse because we live in a small town and now school starts this week. I was recently approved for disability and now, after working since I was 16, I am in so much pain and depressed I am now on disability.

    I guess I was just wondering how everyone feels...do you all or have you all gone through a stage through all of this where you think to yourself "I hate myself for the way I look"???

    Again, I hope I don't come across as someone who is expecting a pity party, just needed to get some things out of my head.

    Thanks everyone,
    Chris
    Chris,
    I could have written your post 5 years ago. I had a sagittal imbalance (flatback) develop after my first surgery and I felt and looked just like you are describing. Are you able to stand up straight? So sorry about all of your complications. I hope your surgeon can help you, if not don't be afraid to get a second opinion...that's what I had to do.
    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

  6. #6
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    Chris, I just read all of your surgeries...wow! Are you OK now? Bummer that you had so many problems.
    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision 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 + prayer

  7. #7
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71
    Hi Chris,
    First, please know you will be in my thoughts and prayers September 5.

    There is no better place in this world to vent than here. Everyone on this forum understands the pain and frustration that is unique to folks with scoliosis. As loving as they are and as much as they try, my family just does not "get it". They can't and it's not their fault. So I come here to others that do understand.

    I am so sorry you've had to go to disability. I am still barely managing to work full time but often wonder when I won't be able to so any longer, and the thought of going on disability feels like defeat. But it is NOT! It's called doing what you have to do to take care of your family.

    In June, 2011, I had revision surgery to correct a sagittal imbalance, junctional kyphosis and flat back. My posture now is so much better than it was before the revision but the pain is worse. I get sooooooo frustrated when people say "Oh my, you're doing so much better since your surgery!" I want to scream, "No you moron! Not all bad stuff is visible!" But I don't. I smile and say "Thanks." and keep walking. The fact is I'm on way more pain medication than I was before the revision. I hit menopause early (again, sorry guys) and between, the meds and not being very mobile, I've gained quite a bit of weight. And I avoid mirrors that show anything below my neck, chin preferably. I prefer wearing sweat pants and big t-shirts but unfortunately, I have to wear business attire for work. Yuck. My oldest daughter is getting married next May and I'm freaking out thinking about having to find a suitable dress then be in all those photos! My youngest is a junior in high school and is very involved in dance. Her dance company is going to New York City next July and I'm freaking out about having to wear decent clothes and trying to keep up with everyone! I don't like going out to eat any longer. By the time I get off work, all I want to do is lay down and most restaurants frown on patrons lounging in their booths. So yes, I am in that stage where I hate the way I look. BUT, because we scolios are such incredibly strong people, we pick ourselves up by our bootstraps and we keep going. Then we come here and vent as often as we need to. Wow, I think I just vented too!

    Hang in there Chris! I'm sending positive healing waves your direction for that September 5th surgery to help get you back to feeling great!
    Last edited by allycat; 08-19-2013 at 10:04 PM.
    Becky
    51 years old
    Married 28 years
    3 kids ages 23, 21 and 17
    Fused T-10 through L-5 June, 2008
    Developed junctional kyphosis, flat-back and sagittal imbalance
    Revision Surgery June 27, 2011
    Fused T-4 thru S-1 with pelvic anchor screws
    Take 2 revision October 15, 2013 to locate source of continued pain
    Pseudoarthrosis at L-3, 2 screws removed

  8. #8
    Join Date
    May 2008
    Posts
    169
    Christyne don't ever feel guilty about venting on the forum, it is a great place to do it and no one takes any notice only that they are worried about you and always try to give advice. Look at the good things, you are so very lucky to be able to have revision surgery. I can't and this is a huge drawback. I am on the strongest meds available and there is nothing any one can do. My rods have been in for 47 years and are so stuck to my spine even with a hammer and chisel they could not remove them for me and put better ones in. As for your weight, well you are in control of that. Your husband loves you regardless and isn't that important, I know you don't love yourself very much at the moment but it seems that there are a lot of people that do.

    I am alone, have two wonderful sons, one has diabetes and has had a kidney and pancreas transplant, the pancreas one was supposed to fix his diabetes but it didn't work, and I have had not the easiest life. What I would not give to have someone to hold and love me and tell me they loved me just the way I am and to be there for me. Sometimes I cry so much in need for strength and I pray as well.

    You sound like such a lovely person and I bet you are just that, who cares if you are a bit over weight, if it is worrying you heaps well go on a diet. I started one yesterday as I thought if I lost a bit of weight it may improve my pain and get me off these lousy meds I am on. So all in all I do identify with you but I think you are lucky.

    God love you and keep you safe,

    Lorraine.
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

  9. #9
    Join Date
    May 2006
    Location
    Michigan
    Posts
    41
    I wonder how you were doing since your Sept,. 5th surgery?

  10. #10
    Join Date
    Jan 2013
    Posts
    21

    My Update

    Hi everyone,
    I've had a hard time getting into the forums since I came home from surgery so I haven't been able to give a proper update; but now here goes...
    September 5th was the first of 2 surgeries back-to-back....(get it...BACK to BACK??? LOL okay, the percoset has obviously set in). Anyway, my favorite surgeon in the whole wide world took out my Harrington Rods and got me ready for the next surgery on that Friday. On that day he hooked onto my lumbar titanium rods and brought them all the way up. I am now (I guess) encased in a cage. I haven't seen the x-rays yet because I was so anxious to get out of the hospital I didn't get a copy of them.

    However, before I went in, he did tell me I had a compression fracture in my spine at T-11 of which he just took that little sucker out. I spent a total of one week in the hospital and only because my drainage tube was pretty active for a while.

    My Mom was here for a while but she left last week and I'm doing okay. I'm off the hard stuff except for at night and that helps. I have a brace I wear all the time I'm up which is a pain in the ass if I must say. I hate it. I can't wait until no more brace but I'm sure at that point I'll still wear it as I feel cocooned while wearing it. I also am able to drive again. I don't take long drives only as far as I need to go and I'm being very careful as to not do too much. Right now, since I'm not even 6 weeks out of surgery, I don't do too much; I move from room to room with my best buddies laptop and walker and sit or walk. I also only take one nap a day. I find it's more of a "break" from the brace but I do get tired very easily.

    As for Physical Therapy, I'm still at it but only with my legs and gait; no arms at all. Dr. wants me to let those muscles sew back together again and honestly, I don't want to jeopardize anything and go through the hell I went through, again.

    So there's the update. If this can help anyone who's getting ready to go through surgery, I sure hope it does. Remember, you CAN and WILL get through it. Just like everyone says, WALK as soon as you can, especially while in the hospital. I swear that was my saving grace. Had I not walked, I would have gone bonkers. I would even wake up from the pain meds wearing off in the middle of the night, buzz my nurse and take them for a walk with me. So, WALK!!!!

    God Bless and know you are NOT alone,
    Chris

  11. #11
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    373
    Chris,
    Glad to hear things are going well. Take many naps for the best recovery is done while your body heals during sleep. I can't imagine driving before six weeks, you are brave.

    Keep up the good work!
    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  12. #12
    Join Date
    May 2004
    Location
    Houston, Texas now live in Colorado Springs, CO
    Posts
    543

    Wink Things will get better

    Hi Chris,

    Things will get better! Give it plenty of time and rest. I haven't been on the forums for a few years. I had my first scoli surgery in April of 2004. I was fused T2 to the sacrum. The following year I had an osteotomy done at L3 to help correct my posture. I came out of the first surgery walking in a bent position. The osteotomy helped but not enough. Two years later I went back for another surgery and I was given another osteotomy at L2, rods removed from about my waist down and replaced and repositioned. I was also instrumented to the pelvis and fused down to sacrum 2. I just had my 5 year checkup a year late so it has been 6 years since the last surgery and 9 years since my first surgery. Things are going okay. We moved two years ago from Houston, TX to Colorado Springs, CO and I actually feel better here. Something to do with the altitude and less humidity. I'm concerned though that I may have to have something done with part of my neck now. But I look at it as I'm not in a wheelchair so I'm doing okay. I retired from my job and now work only about 20 hours a week for my daughter. That has also been a big help. Don't push yourself into doing things to fast. Your body has a lot of recovery to do and it takes a long time for those incisions inside to heal. Don't worry about venting, that's why these boards are here! Saying a prayer for you and hoping that you get to feeling better soon.
    Theresa

    April 8 & 12, 2004 - Anterior/Posterior surgery 15 hours & 7 hours
    Thorasic - 79 degree down to 22
    Lumbar - 44 degree down to 18
    Fused T2 to sacrum
    June 2, 2005 - Pedicle subtraction osteotomy @L3 7 hours
    MAY 21, 2007 - Pedicle subtraction osteotomy @ L2, extended the fusion to S2 and added pelvic instrumentation 9 hours

    FUSED T2 - SACRUM 2

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