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Thread: Just need to talk

  1. #1
    Join Date
    Aug 2005
    Location
    Nebraska
    Posts
    44

    Just need to talk

    I think with surgery schedule, I am just getting frustrated with the pain.
    I really really really hope that the surgery makes the pain go away.
    I'm frustrated that the pain comes to me at night and it makes it hard to getting up. blah

    I don't like talking about it with my loved ones, because I don't want them to worry, although my bf sees it every morning

    And I know some of you have it way worse then me, so I don't mean to feel sorry for myself. It's just that some days I get so frustrated that it hurts to even walk and I am only 26!

    So for now, ice and ibuprofen will be my friends. Maybe I will have to look into all of your suggestions on the bed post.
    26 year old female
    wore a brace in junior high
    fusion of T4-L4 at 15 years old
    broken hardware at 23 due to failed fusion
    November 10, 2008 hardware removal and fusion of L3-L4

  2. #2
    Join Date
    Nov 2007
    Location
    Big Bear, CA
    Posts
    290

    Jen I'm sorry you are in so much pain. I know I sleep better on a bed witha memory foam topper. You can find good ones at a great price on overstock.com. I bought the 4" and I love it. I think I paid less than $200 for it too. A much thinner one at target runs over $100.
    I know it's frustrating feeling like there is no one to talk to, but we are always here, so vent away. Can the doctors give you anything stronger than ibuprofen for the pain? I hope you get some resolution soon. Know there are those of us out here thinking of you and sending you well wishes.
    Alicia
    Geish
    47 years old, dx at 13
    +30* to the right, +60* to the left, +30* to the right
    Surgery 12-13-07 - fusion from T4 to sacrum.


    http://www.scoliosis.org/forum/attac...tachmentid=267 Pre surgery
    http://www.scoliosis.org/forum/attac...tachmentid=268 Post surgery
    http://i156.photobucket.com/albums/t...s/DSC01091.jpg Xray from the side
    http://i156.photobucket.com/albums/t...1089-1-1-1.jpg Xray from the back

  3. #3
    Join Date
    Aug 2005
    Location
    Nebraska
    Posts
    44
    Thank Alicia! That is very comforting to hear.

    I just realized my mom bought me a memory foam topper a while back for my full size bed. It won't fit the queen bed me and the bf have, but it is at least worth a try to put it on there.

    I haven't asked about something stronger, but then again I don't really take the ibuprofen like I should. I am not a huge fan of meds, I like to try as many natural things as I can before I take something.
    26 year old female
    wore a brace in junior high
    fusion of T4-L4 at 15 years old
    broken hardware at 23 due to failed fusion
    November 10, 2008 hardware removal and fusion of L3-L4

  4. #4
    Join Date
    Jun 2008
    Posts
    47

    I know your pain

    Hi Jenlw,

    I have started taking stronger pain killers until I see those two doctors in 3 weeks. My doctor here said I really need to so I can live sanely until something else can be done....surgery again most likely. I would really suggest taking something else so you can be out of pain once in a while. I know....I really don't like taking anything either.

    You are in my prayers. I know how hard it is to be in so much pain and be young....we're both 26!

    Scolimich in Michigan

  5. #5
    Join Date
    Jul 2008
    Posts
    407
    Quote Originally Posted by Jenlw View Post
    And I know some of you have it way worse then me, so I don't mean to feel sorry for myself. It's just that some days I get so frustrated that it hurts to even walk and I am only 26!
    Hey vent away! I vented about my mother-in-law in another thread, and your vent is much more on topic for this forum.

    I'm sorry about your pain, its never fun. Do try that foam topper and if it works see about getting one the proper size. I think they help out a lot.

    Brad
    Surgeries July 26th & August 3rd 1983 (12 years old)
    Still have 57 degree curve
    2 Harrington rods
    Luque method used
    Dr David Bradford
    Twin Cities Scoliosis Center
    Preop xray (with brace on)
    Postop xray

  6. #6
    Join Date
    Aug 2005
    Location
    Nebraska
    Posts
    44
    scolimich - we can go through this together ok? I'm here to talk any time!

    Qikdraw - I did see your post and it made me think of when we painted the outside of the house...now that was some pain. But I figured if my 58 year old dad will all of his arthritis and many other problems could help then I could to :| Isn't if funny how we still think we can do anything, and then we do things like lift up a garage door and are reminded that it isn't that easy

    It is so great to have everyone to lean on!
    26 year old female
    wore a brace in junior high
    fusion of T4-L4 at 15 years old
    broken hardware at 23 due to failed fusion
    November 10, 2008 hardware removal and fusion of L3-L4

  7. #7
    Join Date
    Jul 2008
    Posts
    407
    'Moderation in all things' I think it says somewhere in the bible. Or it could be just a good quote. I think for us we do need to moderate more than normal though.

    Brad
    Surgeries July 26th & August 3rd 1983 (12 years old)
    Still have 57 degree curve
    2 Harrington rods
    Luque method used
    Dr David Bradford
    Twin Cities Scoliosis Center
    Preop xray (with brace on)
    Postop xray

  8. #8
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Jen, I am very sorry that you are having so much pain, especially at your young age. Vent all you want. Heck, have you read some of my posts? I'm surprised some of the folks around here aren't asking me if I want a little cheese with that whine?

    Try the topper thing on your bed, it sure couldn't hurt. And when I'm having back pain, I think motrin works best for me if I take it regularly.

    Take care,
    __________________________________________
    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

  9. #9
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Jen-- I've been gone this afternoon... just wanted you to know I'm so sorry you are having that much pain. It sounds like the topper is a good idea to try-- maybe that will provide some relief. And also some pain med if you are getting so tired and discouraged because of the pain. There are times to be stoic and there are times to give in-- I was always one to tough it out too, and am still reluctant to think I need anything other than an occasional tylenol. But when I hurt so much that it interferes with what I want or need to do, it's time to take a break from those lofty ideals of staying away from pain meds. It sounds like it's time for you to give in a little bit...

    Please unload your concerns and feelings on us-- that's what we're here for! I understand that sometimes you just can't tell those who are closest to you how you REALLY feel. At least we understand-- and you don't have to think about how we might react. We are concerned for you-- and when you let us know you are having a tough time, then you are front and center in our thoughts and prayers.

    Not too much longer now till your surgery. That is exciting! It will take some recovery time, of course, but you're young and will bounce back relatively quickly. Then you'll be ready for more activities you enjoy-- like dancing! I love that pic of you! In the meantime, big hugs from me to you-- 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

  10. #10
    Join Date
    Aug 2005
    Location
    Nebraska
    Posts
    44
    Susie,

    You are so sweet. It's ok if you were gone from the board for a little bit

    I really do think at some point I need to realize I have a problem and take some action (pain = take some pain medicine)

    Thank you for all of your support!
    26 year old female
    wore a brace in junior high
    fusion of T4-L4 at 15 years old
    broken hardware at 23 due to failed fusion
    November 10, 2008 hardware removal and fusion of L3-L4

  11. #11
    Join Date
    Mar 2008
    Location
    Ottawa, Canada
    Posts
    101
    Hi Jen,

    So sorry to hear you are in so much pain and still have quite a wait until surgery. I am usually very wary of taking meds, and like you, usually more into finding natural ways to fix my problems, but when I had a herniated disc, pain meds were just what I needed. Basically, I learned from that experience (and have read many others describe it this way, some on this board), is that pain is a cycle that can get out of control - the more you hurt, the more your body tenses up (mine did, anyway, to the point that I was shaking), so the worse the pain gets. Breaking the cycle can actually help your body deal naturally with the pain. So you may want to try something stronger for a while, see if it helps, and then try to wean yourself off if you're not comfortable staying on it for a longer period of time.

    I've also found the memory foam topper to be a great help - saved me having to buy a new mattress when I realized my too-hard mattress was causing some of my back pain.

    Hope things start to improve for you!

    - Sarah
    - 39 years old
    - At age 14, curve progressed from 45 degrees to 62 degrees in two months.
    - Surgery in 1990 at the Children's Hospital of Eastern Ontario (CHEO) with Dr. Letts. Fused T5 to L2. Corrected to about 30 degrees.
    - Harrington rod
    - Herniated disc - L5/S1 - January 2008. Summer 2009 - close to making a full recovery.
    - New mommy as of February 2011
    - Second child - September 2013
    - Staying relatively painfree through physio exercises!

  12. #12
    Join Date
    Mar 2007
    Posts
    213
    Hello Jen,

    I'm sorry you're in so much pain...my thoughts are with you. I can definitely relate - I'm actually soon to be scheduled for a 3rd-time-lucky fusion to help deal with my pain & lack of mobility it's causing (I'm 21). I know meds never feel ideal, but as my doctor said to me once (along these lines) - "the stress that severe pain puts on you physically and emotionally, and the way it restricts everything from your social life to your education & job, is MUCH worse than any damage you might think analgesics might do." (Of course, she was talking about painkillers in *sensible & monitored* dosages.) This convinced me to move up to Nurofen Plus (ibuprofen + codeine, the strongest painkiller on the market here without prescription). The change has helped immensely, even though I try to take it only when necessary. Being just a little less in pain has helped with everything from daily activities to sleeping at night. This was my compromise between the ibuprofen + paracetamol combo that was no longer doing buckleys for me, and going on to prescription high-dose codeine or even morpheine (which was offered to me with the caveat that I would essentially become a "functional addict" ).

    Only you can say what might help you out, but I just wanted you to know there are many options "above" ibuprofen. I really hope you find something that works for you. That mattress sounds fabulous, hope it works out if you try it. I have a pillow in memory-foam that has been great for my neck (affected by the lumbar curve that puts everything out).

    Anyways, I ramble. I'm thinking of you.

    Cheers.

  13. #13
    Join Date
    Jun 2006
    Location
    Euharlee, Georgia
    Posts
    449
    I used to use Tiger Balm to get some relief from pain. It helps more with muscles, but sometimes it would be enough to relax me and ease some of the pain. I don't use it anymore since I had the nerves in my back zapped. I tend to use heat instead of cold. If you look for a new bed, go on a bad back day. Then you can see what really feels good when you are in pain. I did that also when buying a new car to see what ones I could get in and out of easily! My back is finally starting to feel better after my foot surgery. I was walking so off balance to favor my foot that it made my back hurt real bad.
    T12- L5 fusion 1975 - Rochester, NY
    2002 removal of bottom of rod and extra fusion
    3/1/11 C5-C6 disc replacement
    Daughter - T7 - L3 fusion 2004

  14. #14
    Join Date
    Jan 2008
    Location
    Utah
    Posts
    137
    I was taking six Ultraset daily with Lortab for break-through pain. This continued during the entire year before surgery. Now, two months out from surgery, I don't take ANY pain medication (except for Lyrica which is necessary for a while after surgery to help with potential nerve pain). Anyhow, I did NOT become addicted, but I WAS able to live a relatively normal life, which I couldn't during the couple of years BEFORE that when I resisted taking medications. I had no side effects from the Ultraset.

    You aren't talking a year. Just three months. You may want to consider the possibility of using prescription pain killers until your surgery.

    Either way, best wishes during the "waiting game".
    65* curve at age 55
    T4 - L3 Fusions on May 20, 2008 by Dr. Boachie, NYC
    Curve corrected to 26*
    Blog specifically about my recovery =
    http://gingerinrecovery.blogspot.com

  15. #15
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    Hi Jen,
    I had a revision at age 27, which sucked, and I really felt like it wasn't fair. I don't think people our age really have an understanding of living with Scoli (how could they anyway) so it is doubly hard to miss out on things other people our age can do.
    I was taking a lot of medication pre-op, and am now hardly taking anything (good news!). I used heat packs, medicated rubs, accupuncture, and lots of drugs. It wasn't all that successful in managing the pain though.
    I'm also here if you wan't to vent, everyones different but I can at least have an inkling of what it might be like for you given the closeness in our ages.
    Take care
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

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