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Thread: Been a tough few days

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

    Been a tough few days

    Let me start this by saying this is a venting and griping session, so please forgive me. But when I need to vent and gripe to people that understand, you all are my favorite victims.
    I think there are several issues at work here. Switching from Oxycontin to Fentanyl has not been an easy switch. I understand the reasoning behind starting with the lowest dose of Fentanyl and working my way up to find the dose that is enough without being too much but, dude! I'm miserable here! I'm currently at 50mcg and have been since last Thursday and it's just not cuttin it. The flip side is even though it's not enough to cover the pain, it's making me so sleepy I'm about to fall asleep at my desk! I'm really hoping my pain management doc will up the dose for my next patch change. I may have to bring a sleeping bag and take a nap at lunch though. I'm also taking Percocet for "breakthrough pain" but the pain is breaking through all the time. What to do, what to do.
    Even though I'm so sleepy all the time, I'm not sleeping worth a darn because I keep waking up in pain which I'm sure is contributing to the daytime tiredness. Every time I wake up at night hurting I blurt out some "colorful" language which in turn wakes up my husband. Bless his heart, he will scratch my head (something I absolutely ADORE!) or will very gently rub my neck until I go back to sleep or he falls asleep, whichever happens first. He's always back asleep much faster than I am, but I don't tell him that. I'm grateful for his sweetness.
    This Saturday is Mom's Day at my daughter's sorority house, and we're having a garden party type brunch. Last night I made a stop at a department store by my house and tried on 5 or 6 different styles of dresses trying to find something to wear. Because of the way my back and torso are shaped now, I couldn't find a single dress that fit correctly. By the time I finished trying on the dresses I was too discouraged and tired to look for a skirt so I went home and ate half a package of Nutter Butter cookies. Yea, that's gonna help.
    And to make matters even better, my office is feeling very tropical this week. The weather in Oklahoma City is so very humid and warm right now and I don't think the A/C in my office is working and there must be 1,000 people visiting the Capitol building today. All that combined makes it feel like a rain forest in this marble building.
    Sorry to be such a downer today. I just need some relief from the pain and some answers to what my future holds. I'm so ready to do this revision but there are no guarantees it will make the pain any better. One day at a time I guess.
    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
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Becky, I just wanted to say how sorry I am about your pain. I have no answers but hope you can get some relief soon. You know you never need to apologise here. Are you scheduled for revision yet?
    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
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Becky-- I'm so sorry you are having such a hard time with the pain. Isn't it funny how just sharing with "friends" here on the forum helps get a little of it (frustration and disappointment) out of your system. Sometimes it's hard to tell even your own family how you are really feeling. I know it doesn't help with the pain, but we are all sympathizing with you and hoping and praying soon they'll have the correct dosage figured out and you won't be so tired or have so much pain anymore. Hugs, Susie
    66 and still heartbroken...
    2007 52 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 15
    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
    Nov 2009
    Location
    Colorado
    Posts
    390
    Hello Becky,

    First of all, we should be paying you, or at least wholeheartedly applauding you every time you post your woes, because you are such a fun, colorful writer. I am ashamed that I kind of enjoyed reading your post when you are in such pain, have eaten too many cookies, can't find the proper attire to an important function, and can't stop sweating in the office.

    I can't even imagine how hard it must be to fight the despair of facing the whole enchilada all over again. For some odd reason, I was really deeply thinking about you this morning as I was heading for work, thinking you sound like someone who could be a fun friend, but you have to do this whole THING. It's just really a raw deal. However, it is the deal, isn't it? When I read your post today, I really felt unsettled..

    Here is the cheerleading part and it's all true: You have a great attitude!! ------despite cursing in bed at past midnight. I feel that once you get to the time where you have some solid decisions in place, you will feel a shift. All will be well.

    I hope you find the most creative, attentive, SRS sanctified, qualified genius doctor who will take your back and rework it into a piece of artwork. I'm going to pray about it right away and in the coming days.

    Keep filling us in, please!!

    A Scoli Sister in the bond,
    Amy
    Amy
    58 yrs old, diagnosed at 31, never braced
    Measured T-64, L-65 in 2009
    Measured T-57, L-56 in 2010, different doc
    2 lumbar levels spondylolisthesis
    Exercising to correct

  5. #5
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Wink

    Becky,
    I just want to say I truly understand everything you are so frustrated about. The pain, the tiredness, the falling asleep at work, the inability to find something to fit your malformed body, waking up at night, etc... I so hope you find a surgeon who can find a solution for you as I did. I really didn't think there was any hope for me, but I really am living virtually pain free now after my surgery, believe it or not. I was on so many pain meds for so long and now just on a Percocet now and again. I just know there is hope out there for you, your situation sounds almost identical to mine. I keep you in my prayers every day....
    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 2010
    Location
    Georgia
    Posts
    241
    Becky -- It's good to see that you can have a venting and griping session and be supported by friends on the forum in the process. Sometimes it's helpful just to be heard. I truly didn't see it as a "venting and griping" session. What you described sounds familiar and very frustrating. Do hope you're feeling better with the weekend coming up.

    Glenda
    Glenda
    Age 66 Georgia (63 at time of surgery)
    Bi-lateral laminectomy 2006
    Kyphoscoliosis, approx 38* lumbar scoliosis, stenosis, disk herniations, lower back and hip pain, w/radiating pain, stinging and numbness in legs.
    A/P fusion (T10-S2) 5/17/10 and 5/20/10
    Dr Yoon, Emory Orthopaedic and Spine Hospital, Atlanta, GA
    Pleased with outcome

  7. #7
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71
    You are all the most delightful people in the world! Thank you each and every one for your precious responses.

    Jennifer, I have not scheduled my revision yet. I'm waiting until I've seen the neurosurgeon on May 3rd before I make any decisions about what to do. He is a neuro but he specializes in spinal deformities and adult scoliosis, and since I've not seen a neuro before, I'm anxious to hear his recommendations. By the way, he is an SRS doc so that is good.

    Susie, you are such a sweetheart and a constant source of encouragement! As wonderful and supportive as my family is and as hard as they try, they just can't understand. So having this other "family" to come to is so comforting. Thank you for always being so positive.

    Amy, For me, there is no higher compliment than being told I've made someone smile and laugh! You'll never know how much your post means to me, to know I made someones day a little better makes MY day better! I love life and I love to laugh and if I allow myself to focus on the negative for very long, I don't laugh a whole lot. There is no benefit to sitting on the floor hugging my knees to my chest, sucking my thumb and rocking back forth saying "Why me, why me?!" Don't get me wrong, there are days it would be much easier to do that than to get up and get on with my day but I can't afford to do that. I have a husband, 3 beautiful kids, a boss, co-workers and friends counting on me to function like a normal person. Ok, so I'm not normal but if they haven't figured it out, who am I to let the cat out of the bag? When my mom starts to feel sorry for me and says how sad it makes her to see me in so much pain, my response is "You know, it is what it is." Thank you for all the kind words. Please keep the prayers a comin'. I can use all I can get!

    Kristy, of everyone I know in person and on this forum, you are the one that can relate best to where I'm coming from. It really is amazing how close our stories are, isn't it? My sincere prayer is to continue to follow in your path all the way to our pain-free wonderful destination! I have to believe that is where I'm headed. I refuse to believe there will be any other outcome! I'm so so pleased you are doing so well. You, my friend, have earned this beautiful outcome!

    Glenda, everyone needs to be heard and I'm no different. By responding you have confirmed I've been heard and that puts a smile on my face and a spring in my step!

    I'm driving to Stillwater tomorrow morning (it's only an hour away) to attend Mom's Day with my amazing daughter that attends OKlahoma State University (GO POKES!). Bless her heart, she came to OKC last evening and went shopping with me. She helped me find not one but two, count em two, very pretty dresses! The dresses are pretty but the best part is I feel pretty in them. I'm really excited to spend the day with her in "her" city. The physical pain is really about the same, but having the enjoyable day to look forward to and knowing I'll look nice makes the emotional part a bit better. I'll let you all know how it goes.

    I hope this all makes sense. I'm so tired and about to hit the hay but I really wanted to respond to my beautiful friends and let you all know what you mean to me. You are each one so special and I value you so much. Thank you again for liking me in spite of my faults. Have a great weekend!
    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
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Enjoy your Mom's Day, Becky!
    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

  9. #9
    Join Date
    May 2009
    Posts
    3,745
    Hey Becky
    fentynal never worked for me...& once it cut my breatheing very low...i gave up on it several years ago...i take hydrocodone now...again...gave up on oxycontin, as i went down to 87 pounds on a 5'3" frame...no apetite whatsoever on oxy...and exhausted all the time!

    i hope you find what works for you...wouldnt bet on the patches...and that you find a revision surgery that you go thru with that fixes what's wrong!

    best of luck
    jess

  10. #10
    Join Date
    Jan 2010
    Location
    Georgia
    Posts
    241
    Becky -- Hope you and your daughter had a great Mom's Day together and that you have a good week! It must be very hard to work when you're in so much pain and sleepy from your meds. My thoughts are with you.
    Glenda
    Age 66 Georgia (63 at time of surgery)
    Bi-lateral laminectomy 2006
    Kyphoscoliosis, approx 38* lumbar scoliosis, stenosis, disk herniations, lower back and hip pain, w/radiating pain, stinging and numbness in legs.
    A/P fusion (T10-S2) 5/17/10 and 5/20/10
    Dr Yoon, Emory Orthopaedic and Spine Hospital, Atlanta, GA
    Pleased with outcome

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

    Wink

    Becky,
    I'm so glad to be hear for you! You sound like you have such a great supportive base also in your family and friends , and that makes such a difference. This is such an unusual "disorder" that it is even hard to explain it to people. In some ways, you look normal but boy oh boy you really are fighting your body every minute just to function. Just wait until you have to explain the actual surgery to people. They will look at you like you are nuts! I am looking forward to hearing what your surgeon consults recommend. Feel free to keep in touch!!!
    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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