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Thread: I made it! But the "other side" is pretty challenging so far...

  1. #1
    Join Date
    Oct 2010
    Location
    Austin, TX
    Posts
    112

    I made it! But the "other side" is pretty challenging so far...

    Everything went as planned, had a stretch of vertebrae done "minimally invasively," and the rest open, all posterior. I was in ICU for one day, on the ward for 3 days, shuffled off to the rehab hospital for 6 days, then home.

    I had been doing well in rehab, and wondered why everything hurt so much more at home ... until I realized the simple answer. At the hospital they give you all the heavy artillery -- morphine, oxycodone, oxycontin, robaxin. Then they send you home with prescriptions for vicodin or darvocet and soma. No wonder! But it's a good thing, since I'll spend the next few days trying to give birth to a poo baby. I swear my stomach hurts worse than my back!

    Now for the big questions.

    Why am I so tired? Oh. Never mind.

    Why do the sides of my lower hips feel like they're on fire to touch?

    How many pillows does it take before you find a comfortable sleeping or
    sitting position? Seven is either too many or not enough, depending.

    Why does it feel like I had a c-section but the incision is on the wrong side and they forgot to take out the baby?

    I'll have another pop quiz for you later when I can scrape together some energy!
    Juliet, age 57
    37˚ lumbar and 35˚ thoracic with rotation
    Diagnosed at age 11 and untreated.
    Total degeneration of disc at L4-5, spondylolisthesis at L4, L5 sacralized.
    Surgery on 10/26/10
    Dr. Matthew Geck, Seton Spine & Scoliosis, Center, Austin, TX.
    University Medical Center @ Brackenridge Hospital.
    Posterior fusion of T11-S1, part minimally invasive; TLIF at L4-5.

  2. #2
    JamieAnn Guest
    Quote Originally Posted by BadKitty View Post
    Everything went as planned, had a stretch of vertebrae done "minimally invasively," and the rest open, all posterior. I was in ICU for one day, on the ward for 3 days, shuffled off to the rehab hospital for 6 days, then home.

    I had been doing well in rehab, and wondered why everything hurt so much more at home ... until I realized the simple answer. At the hospital they give you all the heavy artillery -- morphine, oxycodone, oxycontin, robaxin. Then they send you home with prescriptions for vicodin or darvocet and soma. No wonder! But it's a good thing, since I'll spend the next few days trying to give birth to a poo baby. I swear my stomach hurts worse than my back!

    Now for the big questions.

    Why am I so tired? Oh. Never mind.

    Why do the sides of my lower hips feel like they're on fire to touch?

    How many pillows does it take before you find a comfortable sleeping or
    sitting position? Seven is either too many or not enough, depending.

    Why does it feel like I had a c-section but the incision is on the wrong side and they forgot to take out the baby?

    I'll have another pop quiz for you later when I can scrape together some energy!
    You are too funny.

    I had the same "on fire" feeling for weeks, and is just now going away at about 6 weeks post-op. I don't know the technical answer but I know that it is normal. As for all of the stomach discomfort I had a LOT of numbness right where you describe (as if having just had a c-section, like you're saying) where my stomach was so bloated it literally was sore and numb. That actually scared me! But after I got my stomach regular, that all went away. I completely agree about the stomach being worse than your back! I took a picture of my stomach before I took any of my back because I could not get over the bloating! It will go away - just stay on top of it and try to get your stomach "moving" as quickly as possible!

    As for getting comfortable, of course this will vary. Over the 6 weeks the positions I was comfortable in changed every single week. I propped myself up on a 45 degree angle at first, then that started hurting my hip and lower back.. then I went to flat on the couch. Then I started laying on my side. I still feel that my side is most comfortable. I have to put a pillow under my torso/ribcage though so that I am even. I sleep this way every night, too.

    Best of luck and I'm happy to hear we have another one safely on the other side . Keep us posted!

    -Jamie

  3. #3
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    Hi Juliet,

    I love your screen name BTW! I had surgery similar to yours except up to T8, on Oct 11th. I too had a lot of stomach discomfort which I think/am guessing is related to the TLIF. I have a patch of skin on my abdomen which has diminished sensation, not quite fully numb, although everything was posterior. I attribute this to the TLIF but I really am not sure.

    I also still have some discomfort that is diminishing in places untouched by surgery, but I think they are pressure points from laying in one position on the Jackson table for over 9 hours under anesthesia. My most painful area is the lower, floating ribs. It is improving with time (I will be 4 weeks post-op tomorrow).

    As far as the constipation, don't waste any time and get out the big guns: magnesium citrate (tastes incredibly nasty), plus daily miralax. Both are available at all drugstores. I am still taking the miralax every day, although my troubles in this department are much improved since I am off narcotics.

    Take care, remember a few short walks every day, and things get better each passing week.

    Good luck,

    Gayle
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  4. #4
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Juliet,
    You are amazing to have such a sense of humor while you apparently are extremely uncomfortable. You make me laugh. Congratulations on making it safely to the other side. Keep posting your ups and downs.
    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/

  5. #5
    Join Date
    Mar 2009
    Location
    Carmel/Indianapolis
    Posts
    246
    Juliet- you made it through and things will start getting better. Your sense of humor will make it easier! Some of the stuff you go through while recovering....well all you can do is laugh about it.
    Age 56
    Wore a Milwaukee Brace for 3 years in hs
    Fused L4-S1 for high grade spondylolisthesis Jan '09 in Indy
    Thoracic 68
    Surgery Aug 31, 2010 T3 to L1
    Dr Bridwell St Louis
    http://www.scoliosis.org/forum/attac...1&d=1289881696

  6. #6
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    A sense of humour goes a long way after this surgery. Sometimes takes a while to come back.

    I think you're doing pretty damn well for having written that post 13 days post-op! I wasn't capable of putting together a post for weeks.

    Trust me when I say it gets better...a LOT better.

    Rest, walk, sleep, that's all you have to do for weeks now.
    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

  7. #7
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,117
    Juliet
    The hip thing I always referred to as feeling like an extreme sunburn and makes sleeping difficult. When the nerves grow back, this does diminish in time.

    Comfortable? Do the best you can with that.... It always seems that there is at least one pillow in the way. You will become a master at placement and ergonomics after a while.

    I have always said that switching to orals should be done in the hospital. My first days at home were true agony. I have always felt that the oral meds were overrated.

    Try a nice hot 107 degree bath. It seemed to be the best thing I found for bone and nerve pain. Drink plenty of water.

    Keep notes on your meds, diet, bowel, etc.
    Hang in there. Take it easy, there is a lot of healing going on right now. Careful with constipation.... if you lock up, that really hurts. You can go every day, and still get constipated.
    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  8. #8
    Join Date
    Nov 2009
    Location
    Colorado
    Posts
    390
    BK,

    No advice here from me since I am a Pre-surgical...But thanks for making me laugh. I've had a C-section or two and don't want another, but ....whatever....
    Loved hearing from you!
    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

  9. #9
    Join Date
    Feb 2010
    Location
    Ohio
    Posts
    200
    Juliet,

    They didn't send you home with any oxycontin or percocet, only vicadin? You might want to call and let the surgeon know that you are in pain and ask for a stronger pain medication. Keep the faith (and your sense of humor). It does get better. The swelling may take a while to completely resolve, but it does get better each month. At 14 weeks post-op, I still have swelling and numbness along the lower portion of my posterior incision and some minor swelling in my abdomen.

    Gayle,

    That's a fascinating theory about the abdomical swelling and the TLIF. I also had a TLIF procedure at L4-L5. I guess it would make sense that the surgeon would have to "move some stuff around" in there to get to the anterior of the vertabrae. Interesting and thanks for sharing that theory.
    Kathy
    46 yrs at surgery, now 50
    71 degree thoracolumbar curve corrected to 34 degrees
    8/2/2010 surgery with Dr. Lenke

    posterior T9 to sacrum with pelvic fixation

    4 osteotomies and 1 cage
    http://s1066.photobucket.com/albums/...athK_08022010/

  10. #10
    Join Date
    Oct 2010
    Location
    Austin, TX
    Posts
    112
    I don't know where to start --- you guys are the greatest! It's comforting to know that others KNOW, and care about what we're all going through.

    I'll also ask my doc about the possible association of the abdominal pain with the TLIF. And I definitely need better pain management. Especially today, for some reason. Ow.
    Juliet, age 57
    37˚ lumbar and 35˚ thoracic with rotation
    Diagnosed at age 11 and untreated.
    Total degeneration of disc at L4-5, spondylolisthesis at L4, L5 sacralized.
    Surgery on 10/26/10
    Dr. Matthew Geck, Seton Spine & Scoliosis, Center, Austin, TX.
    University Medical Center @ Brackenridge Hospital.
    Posterior fusion of T11-S1, part minimally invasive; TLIF at L4-5.

  11. #11
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    Hi Juliet,

    So sorry to hear your pain is bad today. Vicodin only seems very insufficient, I agree with the others. I hope you will call your doc's office and ask for something better (oxycodone?), you are so fresh post-op and vicodin alone is not going to be enough pain control.

    Take care, and please do let us know how you are doing.

    Best,

    Gayle
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  12. #12
    JamieAnn Guest
    I was only given one type of pain med ever since taken off the Morphine drip - Dilaudid. I just decreased the amount I take and now only take 1 per night at bedtime, and that's it. I think Dilaudid is one of the best pain meds, no? That alone was always sufficient for me.

  13. #13
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265
    Congrats Juliet!! You give hope to those of us waiting for our surgeries with your humor and honesty. I am eager to hear about your progress. Keep in touch-we are all rooting for you!
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

  14. #14
    Join Date
    Mar 2009
    Location
    Sacramento, CA area
    Posts
    189
    Juliet,
    I know what you are going through. I get "phantom" pain once in a while for no reason. Guess it is the nerves growing back, or someone has a voodoo doll and is enjoying sticking in some pins! Plus the pain of sneezing...gosh I hope I don't catch a cold.

    Best advice I have read here is find what drug(s) work to help you manage the pain, take the mag citrate and get lots of rest. I was so bloated in the hospital...my stomach looked 6 months pregnant. I gained 10 lbs in the hospital. Now that I am off most pain meds (flexeril 3x daily & xtra strength Tylenol) and I have an appetite, I feel so much better. Have lost 26 lbs since hospital stay but I'm ok.

    You are so right in saying this recovery is challenging. It sucks. But keep up with the sense of humor, its my best medicine!
    Laurie
    Age 57
    Posterior fusion w/thoracoplasty T2-L3 Oct 1, 2010
    Thoracic curve corrected from 61* to 16*
    Lumbar curve, unknown measurement
    Disfiguring back hump GONE!!
    Dr Munish Gupta
    UC Davis Medical Center, Sacramento, CA

  15. #15
    Join Date
    Oct 2010
    Location
    Austin, TX
    Posts
    112
    ANSWERS TO THE MYSTERY QUESTIONS, REVEALED!

    I'm tired because I just had major spinal surgery. But because I'm one of those fast-twitch people, it's hard to accept. SLOW DOWN, JULIE!

    The skin on my hips burns because of nerve endings from the incision slowly regenerating. This apparently will go on for some time. Luckily, it's only annoying.

    It takes no fewer than 5 1/2 pillows to get comfortable sleeping, 3-4 sitting. In various conformations. But that's just me.

    Question #4 is apparently rhetorical, since I wasn't pregnant in the first place. But it DOES feel like that. More Metamucil, anyone?

    I also managed to improve my pain situation with a switch to Percocet and Robaxin, so went walking today with out too much agony .. and on such a beautiful fall afternoon, too. So nice, and very therapeutic to the psyche.

    Oh, forgot to mention that I've grown an inch! This irritated my 13 year old son to no end, since he's been trying to catch up with me. But I must say, he's growing faster than I'm shrinking, so I don't think he has much to worry about.

    Good news! My doctor's nurse told me that changes in level of energy, pain, and stiffness can go up and down from one day to the next, sometimes due to activities the day before. It has to do with the body adapting to the new positions of various structures after surgery (like the SPINE, I'm guessing?), and it's completely normal. This is great to know, and relieved a lot of the anxiety I was having about feeling so much worse today.

    Wishing everyone a good night's rest tonight!
    Juliet, age 57
    37˚ lumbar and 35˚ thoracic with rotation
    Diagnosed at age 11 and untreated.
    Total degeneration of disc at L4-5, spondylolisthesis at L4, L5 sacralized.
    Surgery on 10/26/10
    Dr. Matthew Geck, Seton Spine & Scoliosis, Center, Austin, TX.
    University Medical Center @ Brackenridge Hospital.
    Posterior fusion of T11-S1, part minimally invasive; TLIF at L4-5.

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