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Thread: I'm back and need some help!

  1. #1
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    I'm back and need some help!

    Hello everyone!
    In my former life here on the forum, I was known as skoshi314. I had been inactive for quite some time and decided to just start over with a new identity. As a refresher, I'm from Oklahoma City, was fused T-10 thru L-5 in June of 2008, I'm now 47 years old and scared to death.
    I'm going to apologize upfront because I'm afraid this may be a bit long. I'm now 21 months post op and I'm still dealing with pain levels in the 6-7 range everyday, it's much worse first thing in the morning and in the evening. I can not stand upright unless I bend my knees a lot and walking any distance at all is a struggle. I am still taking narcotic pain meds just to get through the day. I work full time, have a daughter in college, a son that's a junior in high school and a daughter in 7th grade and I've been married for 24 years.
    I finally decided it was time (actually way past time) to find out whatís going on and why Iím not getting better. I saw another adult scoliosis surgeon here in OKC 4 weeks ago, Dr. Vincent Devlin. I truly like him and I have to say he was so much more thorough than my original surgeon. Dr. Devlin took about 15 x-rays before he even saw me during my first visit. After looking at my past MRIís and current x-rays he sent me for a CT scan. I was hoping he would tell me I was a big baby and I just needed to work harder with my PT and suck it up for a while, that itíll get better. Not so much. Starting from the top, Iíve developed severe kyphosis immediately above the fusion at T-10, I have about half the lordosis I should have in the lumbar area, the fusion in the L-3 to L-5 is very thin, S-1 is beginning to collapse and Iíve developed severe arthritis there, and due to the kyphosis and loss of lordosis, my sagittal balance is way, way off. The repair job is too big for 1 surgery, so he recommends 2 surgeries a week apart. He would fuse T-3 through S-1 and use iliac screws to secure it, do several osteotomies to get the lordosis corrected, correct the kyphosis to get the sagittal balance back, reattach hardware the full length and several other smallish things that I canít remember. The fusion would be done primarily posterior with a small anterior section in the L-4 through S-1 area. Dr. Devlin also said itís not a matter of IF to do the revision surgery, it a matter of WHEN to do it.
    After Dr. Devlin explained everything, he recommended I get another opinion before I make any decision on surgery. I have scheduled an appointment with Dr. Robert Wienecke here in OKC for May 3. He is a neurologist specializing in spinal deformities and adult scoliosis. Both doctors are SRS docs which makes me feel better. Iím anxious to hear what a neuros has to say since all the doctors Iíve seen up to this point have been orthos.
    In a strange way, I was relieved to learn there was an actual problem. Not because Iím looking forward to the revision, but at least now I know Iím not crazy. Iíve been saying for months I felt there was a problem and something wasnít right. I kept hearing ďGive it time, itíll get betterĒ. Guess what? I should have listened to myself a long time ago. This has been the most exhausting, depressing and frustrating thing ever. What I would give to wake up in the morning and not have my first thought, literally, be how much I hurt and whereís my meds. I would love to go to the mall and be able to window shop (ok, really shop) for as long as I want not just park at the door closest to the store I need to go to and then huff and puff back to the car, to catch my reflection in a mirror or window as I walk past and think to myself that Iím stooped over like an 80 year old.
    I warned you all this would be long, and I apologize for that. I just need to get the details out and start getting feedback from the people that know more about all of this than anyone in the world: the people that have and are experiencing this. I guess Iím looking for any information anyone would be willing to share. Thank you all for being an amazing group of people and the best support system in the world. Iím looking forward to your replies.
    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

  2. #2
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Wink

    Becky
    I sent you an email before I read this. WOW! I am so sorry you are going thru all this. I felt like I was reading my own story. I will be having very similar surgery a week from today. With your symptoms and what your dr said I have no doubt that it is a necessary surgery. I hope that I will have a good outcome next week so you will have some encouragement ;-))
    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.

  3. #3
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Becky-- I don't have any helpful information or anything, but wanted to let you know I'm praying for you. I'm so sorry you have been having all these problems! I thought since you weren't posting anymore that everything was probably just fine with you... It sounds like you have things headed in the right direction now. Keep us posted. And please know that we care and are rooting for you. Hugs, Susie
    66 and still heartbroken...
    2007 52į w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15į
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  4. #4
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    Talking Thanks!

    Quote Originally Posted by naptown78 View Post
    Becky
    I sent you an email before I read this. WOW! I am so sorry you are going thru all this. I felt like I was reading my own story. I will be having very similar surgery a week from today. With your symptoms and what your dr said I have no doubt that it is a necessary surgery. I hope that I will have a good outcome next week so you will have some encouragement ;-))
    Kristy, I'm sorry you've had so many problems. I'll email you back tomorrow. I'd really like to know what's been happening with you and what you are having done next week.

    Quote Originally Posted by Susie*Bee View Post
    Becky-- I don't have any helpful information or anything, but wanted to let you know I'm praying for you. I'm so sorry you have been having all these problems! I thought since you weren't posting anymore that everything was probably just fine with you... It sounds like you have things headed in the right direction now. Keep us posted. And please know that we care and are rooting for you. Hugs, Susie
    Hi Susie, I can use all the prayers I can get at this point. I think I was having this inner battle going on, part of me knowing there is something wrong and part of me wanting to ignore it and hoping it would get better. Part of the ignoring process was avoiding anything that had to do with scoliosis. Thank you for the kind words!
    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

  5. #5
    Join Date
    May 2009
    Posts
    3,745
    Hi Becky
    i am so very sorry that you have been going thru this hell with the pain.... & the inner knowledge that something was wrong! isnt it amazing that when we try to ignore our inner voice, it is usually, if not always, telling us the truth!
    i hope you are able to go thru with the surgery & that it brings you a pain free life, the one that you so deserve!

    jess

  6. #6
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Oh Becky, I am so sorry to read your update. I think I came on this forum right about the time you had your surgery. Like Susie, I thought everything was going well for you.

    Definitely get several opinions on this. It sounds like it will be a complicated surgery. What did your original surgeon say if/when you went back to him saying you had problems?

    ((Hugs))
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  7. #7
    Join Date
    Jan 2006
    Location
    near Philadelphia
    Posts
    1,260
    I'm truly sorry to hear this, Becky. That's a very tough situation. I agree that you should probably get several opinions before taking any action..
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  8. #8
    Join Date
    Oct 2005
    Location
    Chicago north suburb
    Posts
    774
    Iím really sorry to read this, Becky. I remember you as skoshi314. We had our surgeries about the same time. You and Naptown have sure gotten a raw deal. But whatís up with these surgeons? Donít they follow you post-op and admit when thereís a serious problem or do they just leave the patient trying to figure out what the heck went wrong?

  9. #9
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Hi Becky,

    I am so sorry that you are having to have a major revision. For those who haven't had surgery yet, this is their worst nightmare. I still have some pain, but nothing like you have to deal with and not because of any fault by my surgeon. I hope and pray that you will find an excellent surgeon who knows what he or she is doing and get you back to tip top condition. The fact that your original surgeon wouldn't admit that something was wrong is very disturbing. Was he an SRS Doctor? Doctors do make mistakes, but the good ones own up to them.

    I wish you the very best.

    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  10. #10
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Wink

    Becky,
    Aren't we just so good at ignoring our inner voice? You kinda know something is wrong...then somehow your disability becomes normal. I am glad you are finally seeing someone about it and getting more than one opionion.
    Chris....my surgeon also did not want to say something was wrong. I'm over it now, but at the time (2 to 3 months post op) I was left researching on my own on the internet to see what was wrong. I diagnosed myself with a sagittal imbalance back then and only got it confirmed with a second surgeon 12 months later. And yes my orig surgeon is a member of SRS.
    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.

  11. #11
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71
    Quote Originally Posted by jrnyc View Post
    Hi Becky
    i am so very sorry that you have been going thru this hell with the pain.... & the inner knowledge that something was wrong! isnt it amazing that when we try to ignore our inner voice, it is usually, if not always, telling us the truth!
    i hope you are able to go thru with the surgery & that it brings you a pain free life, the one that you so deserve!
    jess
    jrnyc, Yes, it is so easy to ignore that little voice in my head. I just assume it's one of my collective mental selves trying to cause trouble but apparently not. But it is reassuring to know that I really do know my own self, mental and physical. That's one of the battles I've faced since I was a little girl, trusting myself. But I'm learning the hard way to trust my gut instinct. Thank you for the wonderful good wishes.
    Quote Originally Posted by debbei View Post
    Oh Becky, I am so sorry to read your update. I think I came on this forum right about the time you had your surgery. Like Susie, I thought everything was going well for you.
    Definitely get several opinions on this. It sounds like it will be a complicated surgery. What did your original surgeon say if/when you went back to him saying you had problems?
    ((Hugs))
    Hi debbei. From the way Dr. Devlin explained the revisions, it does sound quite complicated and scary. I had been mentioning my concerns to the original surgeon since my 1 year check. At that point he reassured me it was normal and I just needed to give it more time. I last saw him in the fall. He looked at the one anterior x-ray he had taken that day and said everything looked great. He gave me 2 steroid injections of some type that sent me through the roof they hurt so bad, and they did no good at all. Every time I mentioned that I felt something was wrong, he basically dismissed me. So once I get my records from him, Iím done with him.
    Quote Originally Posted by Singer View Post
    I'm truly sorry to hear this, Becky. That's a very tough situation. I agree that you should probably get several opinions before taking any action..
    Singer, After I hear what the neurosurgeon has to say in May, Iíll make the decision if to get another opinion. I will definitely not rush into making this decision.
    Quote Originally Posted by CHRIS WBS View Post
    Iím really sorry to read this, Becky. I remember you as skoshi314. We had our surgeries about the same time. You and Naptown have sure gotten a raw deal. But whatís up with these surgeons? Donít they follow you post-op and admit when thereís a serious problem or do they just leave the patient trying to figure out what the heck went wrong?
    I can only speak for my surgeon, but I feel very hung out to dry. Itís almost like he looks at the posterior x-ray and sees the scoliosis curve is straight and feels his job is done and itís time for me to move on. Iíve been very disappointed with the after care Iíve gotten from him. Once I realized I wasnít going to get any help from him, I started doing some research on my own and had an idea of what I thought was wrong but I didnít realize it was as extensive as it is.
    Quote Originally Posted by loves to skate View Post
    Hi Becky,
    I am so sorry that you are having to have a major revision. For those who haven't had surgery yet, this is their worst nightmare. I still have some pain, but nothing like you have to deal with and not because of any fault by my surgeon. I hope and pray that you will find an excellent surgeon who knows what he or she is doing and get you back to tip top condition. The fact that your original surgeon wouldn't admit that something was wrong is very disturbing. Was he an SRS Doctor? Doctors do make mistakes, but the good ones own up to them.
    I wish you the very best.
    Sally
    Hi Sally, When I decided to move forward with the first surgery, I never dreamed Iíd be in this boat now. For the record, the original surgeon is an SRS doctor with some fantastic credentials. I think heís probably a good surgeon, as long as everything goes right the first time. He just doesnít want to deal with problems after. The surgeon I have already seen and the one I will be seeing next are also SRS docs. I really appreciate the good thoughts my way!
    Quote Originally Posted by naptown78 View Post
    Becky,
    Aren't we just so good at ignoring our inner voice? You kinda know something is wrong...then somehow your disability becomes normal. I am glad you are finally seeing someone about it and getting more than one opionion.
    Chris....my surgeon also did not want to say something was wrong. I'm over it now, but at the time (2 to 3 months post op) I was left researching on my own on the internet to see what was wrong. I diagnosed myself with a sagittal imbalance back then and only got it confirmed with a second surgeon 12 months later. And yes my orig surgeon is a member of SRS.
    Oh that darned inner voice! I think it was screaming at me but I refused to listen.
    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

  12. #12
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    Correction

    Apparently the roaring in my ears once Dr. Devlin started telling me what all the problems are and what will need to be done to fix them I missed a bit of information. He did not say he recommends fusing from T-3 through S-1, he actually said he would fuse T-1 through S-1. What a couple more levels of fusion once you've gone that far, right?
    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

  13. #13
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    *sigh*

    I know you'll pursue all your options before you agree to that.

    Hugs,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op Ī53į, Post-op < 20į
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  14. #14
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71
    Thanks Pam. I'm trying to think of all my options. This has been such a bad weekend pain wise, if Dr. Devlin called tonight and said he had a cancellation for surgery tomorrow morning, I'd take it. Ok, probably not, but I'm just so ready for some relief.
    The good news is I woke up this morning and got really angry about the pain that I got up and have actually gotten some things done around the house today. Maybe anger is a good thing. I keep telling myself I'm stronger than this challenge, I'm tougher and I will not let it control my life. I'm in control of my body! Sometimes that works and sometimes not so much. But I'm going to keep trying!
    Thanks for all the good thoughts, prayers and hugs. You all are an amazing support system and I just don't know what I'd do without you!
    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

  15. #15
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Wink You are Tough!

    Becky,
    Just a thought to reflect on...as your body has been going through all this you have been working full time, taking care of your 3 kids, being a good wife (!), and doing all the extra things that life requires to keep moving. You are tougher than the average person that doesn't have the physical limitations to deal with on a daily basis. You do what you have to do to survive. I have thought many times that I wish that people could just "wear" my body for one day so they could understand what I go through every day and I bet you do too. :-))
    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.

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