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Thread: I'm back and need some help!

  1. #16
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    Thanks for the perspective!

    Thank you so much Kristy! You've made me feel somewhat empowered with your words, and you'll never know how much that means to me. I've always wanted to believe I'm a strong person but haven't felt very strong lately. But I do feel a bit stronger, thanks to you!
    Yes, I wish every person that lives in my house and most of the people I know could "wear" my body for a day. I believe that would create a whole new understanding of what we deal with all day, every day. This isnít a cold that goes away after a while, or even the flu. Not that I'm diminishing either of those, cause they both suck! But they will end and you will feel better. There is absolutely no way to explain the exhaustion at the end of the day, and the dread when I wake up and the first thing I think is that I can't roll over because it hurts too bad.
    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. #17
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Wink

    It's weird for me to think that I only have 3 more evenings of this and then HOPEFULLY, I will be able to stand taller and straighter. I have to shake myself sometimes because I look at people and I just envy them to be able to just be able to get up from a chair without thinking, walk without thinking, just stand. The things that most take for granted, the simple things I used to take for granted, mean so much to me. Those are my goals for surgery this time. I can even live with a certain amount of pain, but I want to be able to stand upright. And I know you do too, from your description I think we have the exact same problem! Thank you Becky for your support!
    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. #18
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    Red face More Information

    I received the medical records and notes from my visit with Dr. Devlin back in February. There were several other items I had forgotten about until reading them in the report. Some of this was not covered during the visit I guess because he just hit the highlights.
    The screw at T-10 is lateral to the pedicle screw and extends through a portion of the rib and into the paraspinous soft tissue. There is also evidence the screw has loosened. It also appears the screw at L-5 is loose. The screws at T-10 and T-11 both appear to "violate the superior endplate". I'm still researching this a little more to fully understand what this means, but I know enough to know it isn't good.
    Also, I have a few issues with the cervical spine. I have decreased cervical lordosis and degerative disc changes at C-3 through C-7 along withcentral canal stenosis from C-5 through C-7.
    I don't totally understand the sagittal balance measurments, but I'm going to add what was said in the report and maybe someone can educate me. I'm researching this as well. There is a curvature between T-5 and T-9 measuring 32 degrees convex to the right (this appears to be a scoliosis curve). The C-7 plumb line is 3 cm anterior to the anterior margin of the sacrum. Thoracic kyphosis between T-4 and T-12 is 23 degrees. Lumbar lordosis is 35 degrees between L-1 and S-1. There is a junctional kyphosis between T-10 and L-2 which measures 25 degrees.
    There is an annular tear at L-5óS-1 as well as facet arthrosis. There is evidence of a congenital anomaly of the sacrum (no idea what that is all about).
    I saw my pain management doc yesterday to decide what to do about my meds since they just arenít cutting it anymore. She took me off the oxycontin and put me on a Fentynal patch. She has me starting with the lowest dose and we will work up from there if necessary. So far itís not doing a whole lot to help. Doc told me it takes about 5 days to really see if this dose is going to work so I have to wait until Monday to make any changes. I can still take Oxycodone IR for ďbreakthrough painĒ. I told her about the surgery Dr. Devlin suggested and she was less than enthusiastic. She said if I was a family member, she would never allow me to go forward with the surgery. Her biggest concern is that I will end up in worse shape than Iím in now, and she has patients in that position. She was concerned with the extensive nature of the surgery and believes there are so many opportunities for problems.
    I have days I feel Iím in worse shape than I was in before my first surgery and God knows, I donít want that to happen again! But the thought of staying like this for the rest of my life is just about more than I can stand. Iím just so tired of being tired and in pain. Itís all consuming.
    Itís been a long, stinky day and Iím really down right now. I think Iíll go to bed and hopefully wake up in a better mood tomorrow. Thank you all for listening. It helps just know there are people out there that understand the frustration of this ďchallengeĒ!

    PS-I apologize for the length of this post and for any grammar and spelling errors. I just don't have the energy to check it again.
    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

  4. #19
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,556
    Becky

    I donít know what to say. Wow, Im so sorry this has happened to you.
    I can try to help with some of this.

    Congenital anomaly of the sacrum would be a defect or abnormal sacrum that happened at birth.

    Plumb line is basically the vertical line that drops like a string from your C7. the report says 3cm or just a tad under 1-1/8 forward of the anterior margin of the sacrum, which Im assuming is the forward edge? You are leaning forward.

    Annular tear means the annulus of your disc at L5-S1 is torn, the annulus is the outside ring of the disc. In other words, its herniated. This is below your fusion.

    The spine has normal kyphotic and lordotic curves. Its hard to look at angles that are off as the whole spine has to be balanced as a package. If it balanced, the plumb line will fall correctly, and forward or backwards balance will be correct or normal.

    You have been through a lot.

    I hope this helps a little.
    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  5. #20
    Join Date
    May 2009
    Posts
    3,745
    Hi Becky
    i am so sorry that you've had "pain management" treatment that hurt & had no benefit...i've had ones that hurt like heck but felt better the next day & the next...

    i dont know that i would listen to a doctor who doesnt do scoli surgery...i think people like that can do alot of harm, placing doubt where it does not need to be...

    i hope that you are in a position to go and get several opinions about the surgery...cause it sure doesnt sound like living with the pain & discomfort you have now is an option you want to consider! also...please be really careful with fentynal...i used to get those patches...almost shut off my breathing!...really!! and didnt work for my pain, either! thought they were coming off the market...must've been something else....but please be careful!!

    is there a chance that your insurance will cover other opinions from other scoli surgeons...cause such serious surgery ...should be looked at by several folks who do exactly that kind of surgery!

    i feel really concerned about your physcial state..and now your mental well being as well! all the worry and decision making just sounds like so much stress on you!!

    jess

  6. #21
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Hi Becky,

    I second Jess's suggestion to see several different surgeons for their opinions. Your PT is right--you don't want to end up worse off than now.

    I am so sorry that you are going through this. You will be in my prayers.
    __________________________________________
    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. #22
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71
    You are all truly amazing! I can't imagine how alone I would feel if I didn't have this wonderful group of people to lean on. Thanks you all!
    Ed, the information is very helpful, thank you. I made a copy of the doctorís notes and highlighted everything I was unsure about, and then made a list of words, phrases and anything else I was unfamiliar with and did a little research yesterday. You did, however, touch on items I still needed help with. I am definitely leaning forward. Three cm seems like such a small measurement when I'm leaning so far forward. If my thought process is correct, zero cm would be straight, yes? I'm just trying to figure out what the normal range is and how bad 3 cm is. Sadly, the lordosis and kyphosis are pretty bad. Comparing the x-ray post surgery to the x-rays of a month and a half ago, itís quite obvious Iíve lost a lot of lordosis. Dr. Devlin estimated I have about half the lordosis I should have. The kyphosis begins at T9 or T8 and it basically creates a hinge effect. That along with the loss of lordosis might account for me always looking down at the floor when I walk. I really do look very old when I catch my reflection.
    Jrnyc and debbi, thanks a million for the good thoughts and prayer sent my way. I can definitely use all I can get. Jrnyc, my insurance would in fact cover out of state opinions, and Iím looking into that now. My next scheduled appointment for an opinion is May 3 with a neurosurgeon here in OKC. I decided there was absolutely no reason to wait until Iíve seen him to start scheduling other opinion appointments. So Iím looking at options in Texas and possible Dr. Lenke in St. Louis. I was really hoping to be able to take care of this once and for all this summer. With the scheduling issues I have to work around, if I donít do something now, Iíll have to wait at least a year to move forward. I just donít know that I have it in me to wait a year or more. As everyone dealing with this type of pain knows, itís exhausting, frustrating and flat makes me angry. When I decided to have the initial surgery in 2008, I never ever dreamed Iíd be facing a revision, much less a major one. Some days it just seems surreal.
    Before I saw my pain management doc this week, I did some research on Fentanyl; I also remembered something about a recall and thinking she might suggest I try it, thought I better know what is what. There was a big recall in early 2008 for potential drug leakage due to a cut in the patch which could cause overdose. The problem has been corrected and there is no longer an issue. Iím being very careful and watching my physical state to make sure there are no changes. I donít want to risk dealing with any other issues!
    I gripe and complain about getting up every morning in pain and having to get ready and go to work. In reality, I think if I didnít have my job as a reason to get out of bed, it would be very easy for me to become a hermit and even more depressed. I have a job that I enjoy (most of the time) with people I like to be around. Itís not physically demanding and I have the freedom to get up and move around or walk around any time I need to. So overall, I think I have a good thing going and have no business complaining.
    Ok, Iíve rambled enough for now. If anyone thinks of more wonderful advice (Iím open to any and all) or words of wisdom, please share. Thank you all for being my rock!
    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. #23
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Becky,

    I would stay away from a Neurosurgeon unless he is also an Orthopedic surgeon who specializes in scoliosis revisions. Check out the SRS website.

    I am so sorry you are having so much pain and problems since your original surgery.

    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.

  9. #24
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71
    Thank you Sally for having my back on this. He is a neuro that specializes in complex spine surgery including adult scoliosis. He is also an SRS doc so I feel comfortable going to him for an opinion.
    Again, thanks for looking out for me!
    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

  10. #25
    Join Date
    May 2009
    Posts
    3,745
    Hey Becky
    glad you will be able to get some other opinions...it often helps to feel more secure in one's decision...even though you sound sure right now!
    know what you mean about the job...for me, it was a distraction from pain! i would notice my pain intensely when i finally sat down for a minute at 12 noon...after being on the go from before 8 a.m. as soon as i sat down, it would hit like a triple whammy! my doctor used to always yell that i waited too long to take my pain meds..and thus they were less effective! he was right...

    just FYI on Dr Lenke...i understand from folks on this website that he has a one year waiting list...but i heard that is for surgery...dont know if you could get in sooner if you just want a consult...

    best of luck...send you thoughts & prayers that you will get a break before the surgery...you need a little breathing room, i think! sometimes just getting out from under the pain temporarily helps!!

    jess

  11. #26
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Wink

    Hi Becky,
    I just read your post and feel so bad for you. Just to throw in my 2 cents on some of your issues. The C7 plumb line is exactly that : Hold a line with a weight on the end at C7 and it should fall straight down to the sacrum. Mine at its worse was 14 cm forward. You start fighting your own body just to stand up.

    I agree with Jess on a couple of things. I wouldn't put too much stock in opinions on surgery on a non-surgeon. It does put doubt in your head where what you need are educated opinions.
    I was on Fentanyl for a period of time. It helped with pain, but it does have a side effect of night sweats. I thought I was going through menopause! The minute I went off of it the night sweats diseappeared.

    If you can't get in with Dr Lenke, try getting in with Dr Bridwell. My doctor initially was going to recommend me to him if I would travel. I had seen on the forum that he might be easier to get in to see.
    I am so sorry you are going through all this.
    Thoughts and prayers are coming your way...
    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.

  12. #27
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397
    It takes a while to get in with Dr. Lenke, but it's well worth the wait. He's truly phenomenal!!!!! And, he's kind and professional, also.

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