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Thread: Introduction- Surgery in 3 days

  1. #61
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    Default Re: Introduction- Surgery in 3 days

    So glad to hear your doing so well Hayley
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  2. #62
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    Default Re: Introduction- Surgery in 3 days

    Quote Originally Posted by indiekelly View Post
    Ahh thats brilliant!! Such a quick recovery is so inspiring.

    Still trying to debate having it i feel very certain one day then the next the opposite but I until have December to decide so a while yet!
    I know exactly what you mean! I was the exact same way up until surgery- I met with the doctor in December and didn't have the operation until June, so there were a few months of it gnawing in the back of my mind. I recommend exercise, do some spine stretches and eat REALLY well- It helps to feel prepared, even if you haven't decided 100%. It almost incentivizes you, because you'll be thinking "I've done all this preparation, I can't back out now!"

    If you decide to go for it, know it'll be a-Ok. The time will pass quickly, and you'll get a nice long break from obligations and many, many well-wishes from people.

    So glad to hear your doing so well Hayley
    Thanks Jay! You also

  3. #63
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    Default Re: Introduction- Surgery in 3 days

    Hi Hayley,
    Somehow I managed to stay off this addictive forum for a few months. But I had to check on a few things, so I logged back on (took me three tries to remember my password). Something led me to your story of triumph. It has been riveting and compelling reading - all the hundreds (it seems) of posts and replies. Happy ending. Now it is 2 a.m. - I need some sleep. Glad you have your new back and feeling better. Let us know when your journey is turned into a movie. Who will play you? Natalie Portman maybe?
    All the best, Anthony's Dad

  4. #64
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    Default Re: Introduction- Surgery in 3 days

    Its funny about posters like Haley, and Jay, I never had any doubts....and its very refreshing to read about such triumphs! Congratulations to both of you!

    When compromised with medically related challenges, the survival instinct is a POWERFUL thing....Some of us have to push just a little harder in our lives, and challenge becomes this thing that we understand and accept. Goal setting becomes very important in our lives....its almost an automatic thing, second nature.....

    And how is Anthony doing? Is his rod extended completely? Is there a rod replacement plan in the near future?

    Ed

    55 yr old male
    T70 L70 double trouble
    A/P T2-Pelvis BMP Jan 2008

  5. #65
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    Default Re: Introduction- Surgery in 3 days

    Quote Originally Posted by Anthony's Dad View Post
    Hi Hayley,
    Somehow I managed to stay off this addictive forum for a few months. But I had to check on a few things, so I logged back on (took me three tries to remember my password). Something led me to your story of triumph. It has been riveting and compelling reading - all the hundreds (it seems) of posts and replies. Happy ending. Now it is 2 a.m. - I need some sleep. Glad you have your new back and feeling better. Let us know when your journey is turned into a movie. Who will play you? Natalie Portman maybe?
    All the best, Anthony's Dad
    Aw, thank you so much! It makes my day to know my story is compelling to someone XD I hope it helps others considering surgery- I've revisited my own early posts since just to see how much things have improved.

    Haha- I'm not picky about actresses, but they should definitely call the movie, "The 387,000-Dollar Woman." (SO glad I have insurance O.O)

    Its funny about posters like Haley, and Jay, I never had any doubts....and its very refreshing to read about such triumphs! Congratulations to both of you!

    When compromised with medically related challenges, the survival instinct is a POWERFUL thing....Some of us have to push just a little harder in our lives, and challenge becomes this thing that we understand and accept. Goal setting becomes very important in our lives....its almost an automatic thing, second nature.....

    And how is Anthony doing? Is his rod extended completely? Is there a rod replacement plan in the near future?

    Ed
    Thanks again Ed! You've been a tremendous inspiration for all of us. Rod Stewart the Wise.

    EDIT: Almost forgot to post a quick update!
    I've been in physio for about a month now, and today my therapist said that my forward bending ability (even without engaging the lumbar region) has gone from 10 degrees to over 90! And my lateral bending ability is about 60 degrees. I'm very happy with this- I feel on track to touch my toes within a month or two XD

    If anyone's interested I can post some pics of the exercise sheets she's given me- a lot of them are about engaging the hamstrings and core.

  6. #66
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    Default Re: Introduction- Surgery in 3 days

    Hayley,
    I can't tell you enough how happy I am for you, I tell my parents and husband about you every time you update. Bailor is where we were originally going in June when we stumbled upon our surgeon. Your correction is unbelievable and I am so happy for you. Not only has the progression been stopped but the physical aspects of it are nothing shy of amazing!

    That being said......I am so jealous of you! I went in on Tuesday the 29th for surgery, came home Friday, was home roughly 18 hours and went right back to the ER here in my town on Saturday and didn't come home until this Wednesday! I had something called a bowel ileus. Ended up having 2 blood transfusions and a whole mess of fiber, laxatives, enemas, and Lord knows what else! I am now home and I hurt so much! This sounds insane but I swear my shoulder blades and ribs are all grinding and moving even making sounds!! Mentally I was and have been so positive and optimistic about it all and it's just not going as well as I'd hoped. I go out to walk and plan on walking a full lap and make it a quarter around and my body totally poops out on me. I am an avid runner, live for it, love it!I love lifting and doing cross fit etc, and in all those instances if my mind was in it my body followed suit...not so much this time. I have to remind myself I am 10 days out but UGH I am over it. Lol!

    I am still positive, my correction xrays were amazing I guess they did them while I was on the table because I don't recall having any done. I can't for the life of me figure out how to upload pics from my tablet or my phone.

    I am so glad it's not the first thing on your mind anymore because mine is and has been the first thing I think about and noticed every morning when I'd get dressed. That's great to hear.

    Take care sister and keep going in the direction your headed as I find it very inspirational!
    Krier

  7. #67
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    Default Re: Introduction- Surgery in 3 days

    Quote Originally Posted by Mrs. Krier View Post
    Hayley,
    I can't tell you enough how happy I am for you, I tell my parents and husband about you every time you update. Bailor is where we were originally going in June when we stumbled upon our surgeon. Your correction is unbelievable and I am so happy for you. Not only has the progression been stopped but the physical aspects of it are nothing shy of amazing!

    That being said......I am so jealous of you! I went in on Tuesday the 29th for surgery, came home Friday, was home roughly 18 hours and went right back to the ER here in my town on Saturday and didn't come home until this Wednesday! I had something called a bowel ileus. Ended up having 2 blood transfusions and a whole mess of fiber, laxatives, enemas, and Lord knows what else! I am now home and I hurt so much! This sounds insane but I swear my shoulder blades and ribs are all grinding and moving even making sounds!! Mentally I was and have been so positive and optimistic about it all and it's just not going as well as I'd hoped. I go out to walk and plan on walking a full lap and make it a quarter around and my body totally poops out on me. I am an avid runner, live for it, love it!I love lifting and doing cross fit etc, and in all those instances if my mind was in it my body followed suit...not so much this time. I have to remind myself I am 10 days out but UGH I am over it. Lol!

    I am still positive, my correction xrays were amazing I guess they did them while I was on the table because I don't recall having any done. I can't for the life of me figure out how to upload pics from my tablet or my phone.

    I am so glad it's not the first thing on your mind anymore because mine is and has been the first thing I think about and noticed every morning when I'd get dressed. That's great to hear.

    Take care sister and keep going in the direction your headed as I find it very inspirational!
    Ahhhh Mrs Krier I'm so sorry it's been such a trying time. I know words won't help with your current discomfort, but I think that at 10 days you're making great progress! Baby steps, remember! If you feel you can't walk anymore today, plan to do a little tomorrow. Walk around the house for a minute or two, have a lie down, then walk a few minutes more. If you're feeling it that means you're making progress! 30 seconds at a time one day, working up to 2 minutes at a time, progressing to 5 minute bursts with 20 minute rests. You have all the time in the world, no need to hurry

    Don't worry at all about weaning off your meds yet- take as much as you need to feel comfortable. If you just cut down by a half and feel you can't take it, just go back to your original dose again. (I did this several times. Cut down to one- the next day I went back to 2) Weaning off is like tipping over a heavy object- sometimes you have to go back and forth before you get it down.

    I know I repeat myself a lot- but I must stress how temporary it all is- the sharp pains in certain areas over others, the general soreness, the discomfort in every position at night, the feeling that you're damaging yourself every time you move- the EXHAUSTION! I know my posts were pretty upbeat, but I had days where I didn't feel like doing anything between my pain meds. I really forced myself to be up and about with the family for short periods- even if I was practically nodding off at the dinner table. Remember- you also had a bigger surgery than mine! It's going to take as long as it takes.

    Focus on those X-rays- remember that the pain and weariness will fade as the days and weeks go by, but that amazing correction will stay!

    I'm proud of you! And you should be too

    P.S.

    Do you have a foam topper to sleep on? I still keep mine on my bed just because it's really comfortable. If not I highly recommend it, along with a folded soft quilt underneath you. For the first few weeks I also shoved a pillow underneath the right side of my back so I was sleeping 3/4 to the left- I found that position took almost all of my pain away.

  8. #68
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    Mar 2014
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    Default Re: Introduction- Surgery in 3 days

    Hayley,
    Thank you so much! I have an i-comfort bed and my husband insists it's made out of what the foam topper is? Thoughts?? Yes, I too shove pillows up under one side or the other and It feels nice.

    Today I went to Kohls and Dicks sporting Goods and for a roast beef sandwich and today was the first day really out and about. It felt great, the staring from people at this lovely brace i wear took me some getting use too but iv always liked standing out so that soon passed. Ha!
    It's about 8:30 pm and I am now feeling it.

    Tomorrow is my 2 week appointment and I was wondering, do you take pain pills now that are non narcotic? I am planning on asking for some. It's not so much me wanting off the pain meds as much as I have a fear of them causing bowel issues again.
    Have a great night and thank you for all the advice it really Is comforting!

    Ps...After sitting or laying for a bit, upon standing did it ever feel like your spine just weighed a ton? It soon fades but I was just curious.
    Krier

  9. #69
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    Default Re: Introduction- Surgery in 3 days

    Quote Originally Posted by Mrs. Krier View Post
    Hayley,
    Thank you so much! I have an i-comfort bed and my husband insists it's made out of what the foam topper is? Thoughts?? Yes, I too shove pillows up under one side or the other and It feels nice.

    Today I went to Kohls and Dicks sporting Goods and for a roast beef sandwich and today was the first day really out and about. It felt great, the staring from people at this lovely brace i wear took me some getting use too but iv always liked standing out so that soon passed. Ha!
    It's about 8:30 pm and I am now feeling it.

    Tomorrow is my 2 week appointment and I was wondering, do you take pain pills now that are non narcotic? I am planning on asking for some. It's not so much me wanting off the pain meds as much as I have a fear of them causing bowel issues again.
    Have a great night and thank you for all the advice it really Is comforting!

    Ps...After sitting or laying for a bit, upon standing did it ever feel like your spine just weighed a ton? It soon fades but I was just curious.
    If it's memory foam, that'll probably do the trick! Apologies this is quite a late reply- hope you're feeling even better a week down the line That's great to hear that you went out at under 2 weeks- I'd be surprised if you weren't feeling it!

    I had decent relief with Tylenol, though I kept taking half a Norco tablet up until a month post op. After that I was on a teaspoon of kids' liquid Tylenol, which is pretty mild. I'm not on anything currently- if my shoulder is a bit achy at the end of the day I just lie on my back for about 15 minutes and it goes away. For your bowel issues- have they prescribed you any stool softeners? I assume they have, but Colace was a pretty good one they gave me. (Though in my case it was more of a precaution.)

    I definitely felt the weight of it! It gets a lot better- your back muscles right now are probably the weakest they've ever been, but in time you will gain Wonder-Woman levels of strength!

    Another Update from Me:

    So today I didn't get into the shower until a little later, and when I undressed I saw that my torso was mottled bluish-black all along my sternum and ribs. I was horrified and showed my mom. We weren't sure what to do- I thought could have been bruising from my physiotherapy, which involves laying on an exercise ball on my stomach, or it could be much worse- internal bleeding from complications with the hardware! I didn't want to rush off to the ER if it was just a bruise, but I didn't want to keep bleeding if it was an internal problem. My parents suggested I have my shower, and keep an eye on it throughout the day to see if it got worse. My mom e-mailed my sister in Missouri letting her know the situation.

    I was standing there in the water, thinking of what a hell this week would be if I had to be re-opened and operated on, how unfair it was to have made this much progress only to have it interrupted by another ordeal! If it was something worse- a problem with one of my organs aggravated by the surgery, I could be facing some serious health problems, and I only turned 22 two days ago.

    Then I realized it was coming off with a little soap. It was dye from the black dress I had gotten as a birthday gift and worn the day before

    Silly Hayley…. Always wash new clothes

  10. #70
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    Mar 2014
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    Default Re: Introduction- Surgery in 3 days

    Hayley,
    Lol!!!! That's funny, I've had jeans do that! Well, the last 3 days have been pretty good. In fact today I went to a sporting goods store, and Target and aside from it being 100° outside and me having both the brace and bone stimulator on it was really good.

    The other day I made it half a mile before I was ready to lay down, and I straightened my own hair!!!! This is very important as I am a climatologist and my hair needs to be put together!
    I shower without help but not brave enough to attempt shaving my legs so the hubby does that! That's trust huh! I attempted to put pics up under the "good luck Mrs.Krier on the 29th" post that Gilly G started. They popped up as a link you just click it and up I pop!! The incision already looks different from that post, I'll have to put a new one up sometime.

    You were right, it is getting much better. I toss a lot at night with tight muscles but the pain is immensely better!!!! Mornings I am a little stiff, I still feel heavy up top, waiting for that to pass. Energy levels are MUCH better, assuming the 2 blood transfusions helped with that, along with supplement drinks and protein. The only thing I really fret over is constipation and preventing it. Stool softeners and miralax through the day seem to do the trick. I only take a narcotic at night before I go to sleep, and only an occasional tramadol through the day.

    Its wonderful to hear your leaps and bounds and please continue to update!!! Your just enough ahead of me that I use you as my sound board!
    Thanks for chatting with me missy and I hope you have a great week! Look forward to hearing from you soon!
    Krier

  11. #71
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    May 2014
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    Default Re: Introduction- Surgery in 3 days

    Quote Originally Posted by Mrs. Krier View Post
    Hayley,
    Lol!!!! That's funny, I've had jeans do that! Well, the last 3 days have been pretty good. In fact today I went to a sporting goods store, and Target and aside from it being 100° outside and me having both the brace and bone stimulator on it was really good.

    The other day I made it half a mile before I was ready to lay down, and I straightened my own hair!!!! This is very important as I am a climatologist and my hair needs to be put together!
    I shower without help but not brave enough to attempt shaving my legs so the hubby does that! That's trust huh! I attempted to put pics up under the "good luck Mrs.Krier on the 29th" post that Gilly G started. They popped up as a link you just click it and up I pop!! The incision already looks different from that post, I'll have to put a new one up sometime.

    You were right, it is getting much better. I toss a lot at night with tight muscles but the pain is immensely better!!!! Mornings I am a little stiff, I still feel heavy up top, waiting for that to pass. Energy levels are MUCH better, assuming the 2 blood transfusions helped with that, along with supplement drinks and protein. The only thing I really fret over is constipation and preventing it. Stool softeners and miralax through the day seem to do the trick. I only take a narcotic at night before I go to sleep, and only an occasional tramadol through the day.

    Its wonderful to hear your leaps and bounds and please continue to update!!! Your just enough ahead of me that I use you as my sound board!
    Thanks for chatting with me missy and I hope you have a great week! Look forward to hearing from you soon!
    The good ole' bone stimulator- what a strange device! Do they make you wear yours for a long time each day? Mine is just 30 minutes.

    That's brilliant to hear that you've crossed a pain threshold. You'll keep hitting them in the coming weeks & soon you'll be able to do more and more without thinking about it at all. It also sounds like you're weaning off the meds in record time. And half a mile! Wow- I wasn't nearly as ambitious- congrats.

    A climatologist- on TV? That's really cool- I hope you'll link us to some of your reports once you're back on the job! Your arms & shoulders are completely detached from your fusion, so you'll be able to get full mobility back in those areas once the stiffness melts away. Mornings tend to be the worst for feeling stiff- you've been lying in one position for so long. I found midday (11-2) were my most ship-shape hours in those days.

    Keep eating well, getting all your protein & vitamins. I've found it's a good opportunity to develop good eating habits for life.
    I'll hop on over to your other thread to have a look at the pics!

  12. #72
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    Default Re: Introduction- Surgery in 3 days

    Hayley,
    Auto correct. .....I am a cosmetologist! Lol!!! Sorry. Not near as glamorous but I love it. Your right about the mornings thier a little rough! Keep me posted on your progress! ! Have a great week!!
    Krier

  13. #73
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    Default Re: Introduction- Surgery in 3 days

    Ha ha, I was wondering why a climatologist needed special hair care!!

    It sounds as though you're coming on in leaps and bounds Mrs Krier, and Hayley - I laughed so much at your dress/bruise shenanigans that it hurt!!
    Me, a Mod? Nah ... I'll always be a rocker

  14. #74
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    May 2014
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    Default Re: Introduction- Surgery in 3 days

    Well I just had my 3-month check-up with the doc. Thought I'd post a "post-post-op correction" pic….. I realize that's a lot of "posts."

    I know a lot of people are weirded out by how they look immediately after surgery, especially from the front. Never fear! As you can see I was leaning pretty heavily to the left, but the muscles have pulled themselves largely into alignment, and even the lumbar curve has continued to improve a little bit. (For those working out compensatory curves- it takes time! Don't be discouraged) I still need to "check" my left shoulder, but it's getting easier to keep it straight.



    Anyway, I'm in a very happy mood these days No pain aside from a mild numbness in my left shoulder after long days. I actually enjoy shopping for clothes, something I dreaded before. And I can breathe properly!!!!! That's a big one. If anyone ever questions their decision to get the operation done at a lower degree than mine- just remember that you're sparing your lungs years of compression, you don't want to be stuck with breathing problems in old age. It really is the worst, panicked feeling in the world to be lying in bed and unable to take a deep breath.

  15. #75
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    Default Re: Introduction- Surgery in 3 days

    That's so fab Hayley! Looks great! So happy for you

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