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I'm new and wanted to say hi

58-2-5 for me558-2-5 for me Posts: 4
edited 06/11/2012 - 8:48 AM in New Member Introductions
Greetings to all who read this! I have been a lurker for a bit now and thought I would "cowboy-up" and jump into this process of reaching out.

A bit about me: I am soon to be 52 female and back in 1976, in late June, just weeks after I graduated from High School, I went through Scoliosis Correction Surgery. I will now take this back about 7 months into the fall of 1975 and a bit further.

When I was in grammar school, I had always been considered limber and possibly double-jointed as a result of my flexibility with my back. You see, it was quite easy for me to bend in half both foreword and back. I had always enjoyed gymnastics and was quite pleased when in High School they were able to purchase “real” gymnastic equipment.

Now, fall of 1975. While in the gymnastic class that I loved, I was doing some practice tumbling when I sort of did something very ugly, which had me landing partly on my hand, shoulder, neck and head. This certainly got some attention as apparently this was done with a rather noticeable “thud”. Anyway, I sort of gathered by body, stood up and sort or shook it off, except for the fact that I grabbed my neck.

After school that day, I was taken to the family doctor for a “lookiesee”. I will never forget his words that day. I had been put in a typical doctor gown with the back open. I sat on the table with the crinkling paper and waited for him to arrive, while my Mother flipped through a magazine. Once my Doctor entered the room I was asked to try to explain what had happened. When I had finished talking, he asked me to stand and face away from him. As he stood behind me he moved around my neck a bit and I yelped at all the places where I was tender. Next, he moved the back of my gown open and I could hear his sort of “gasping” breath. His next words to my Mom and me were, “So. Just how long has your back been like THIS??”.

YIKES. I knew I was busted. You see, I sort of had a secret, which of course you just can’t tell your parents about. Several months before all this happened I had received my monthly magazine from the “Girl Scouts”. I sort of went through it not thinking much about any of the things in it, until I came across this story about a girl, who was very much my age. It was summer and the girl’s mother noticed when she was in her swimsuit that her shoulders were not level, and that her ribs seemed to bump out to one side and that her hips were, well they just weren’t right.

Long story short, all those things that her mother noticed about the daughter, were EXACTELY what I had noticed about myself. I was totally afraid, because when I went on to read about her long surgery, her months in a body cast and such.

Needless to say, I was off to an immediate visit with an Orthopedic Surgeon who scared me even more when he answered my Mothers question of “what do we do now”. He said that I had 2 options; 1] have the surgery and get my spine straightened out and be as best as I could or 2] be crippled by the time I was 30. The Ortho’s summary of my back was a bit more fierce than the girl in the story. The gory details were that I had a 58-degree curve to the right (thoracic area mostly), as well as a smaller curve to the left under the 58 degrees to the right. Along with this double curve, I also had rotation of the discs, which meant that the part of the disc, which should be facing out your back, was being rotated along with the 58-degree curve.

These curves and the disc rotation were causing all sorts of troubles. Apparently the upper curve had caused one side of my ribs to pull to the right, while the ribs to the left were flattening out. The Ortho then said that my ribs were now permanently misshapen and my lung capacity was compromised to a moderate/severe degree. At that time, the thought was that with the above being true, that my heart was now in danger of being compressed along with my left ribs.

One of my hips was higher than the other, but this lessened after the surgery, BUT with the way my spine was moving, it was pulling my hips/pelvic bones and tilting them. This did not get better after the surgery.

I won’t go into all the details of the surgery [13 fused vertebrae and Harrington rod] and the 9 months following, but I will remark on the words I was given when this entire ordeal was over. I can totally remember the day, it was Good Friday. I remember the sound and smell of getting my last PLASTER case cut off. My skin was yucky, as usual but the freedom my body felt was quite strange. I was totally afraid to move. Once I was dressed, he called my Mom and I into the examining room to talk about life going forward. He reported that I should go now and live my life, but….with just a bit of caution.

No one ever mentioned one word about what was in store for me. No one ever mentioned about how in the next 5 to 10 years I would start to have the most awful pain in my neck and that my shoulders would be nothing but solid rocks of tension, which would then create migraines that would put me in a dark room for 2 days at a time, or how I would have times when my arms and fingers would get all tingly and numb, or that my neck pains and shoulders would eventually pull up my 1st rib on my right side which caused me to loose 65% of the use in my right arm/hand which turned out to be “Thoracic Outlet Obstruction”. Here came another surgery to remove my scalene muscle as well as that 1st rib, because my wacky ribs would not “come down” enough to relieve the blood and nerve pinch. So now, I have not only a pretty scar down my back which starts at almost upper thoracic and goes down to my tail bone, along with another on my left hip which was where the bone graft was taken during the 8.5 hour scoliosis surgery, where I grew 2.5 inches as my spine was pulled straight, but now I have another scar across my right collar bone (which is about 10 inches) and another under my right arm, as this is where they accessed my body to remove the right 1st rib.

So, 2 BIG surgeries down and all sorts of scaring, good for me though, that I heal real nice and do not have big ugly scars.

Jump to the last 15 years. Enter – Chronic Pain. I will suffice to say that I have been through 3 levels of “Chronic Pain Management Programs”. I took a good amount of information from these, but also fought the CBT process…..just make me understand how “addressing my thoughts” will release of my pain.

With respect to medication, I am now on 45 mg of morphine 3 times a day, some flexeril at night, 3 different antidepressants effexor, nortryptline and wellbutrin. I have NORCO [a stronger version of Vicodine] to use on breakthrough pain which is NOT working any longer and am waiting to hear if I get another breakthrough med or if I up my morphine.

The upper and lower back pain that I have on a daily basis is getting to be too much yet again. Laying in bed does not work most nights yet sitting is almost as bad. At times I feel better if I am standing yet because my hips are uneven this only works for a short time. The same goes for walking. When I walk, I can be struck down mid-stride by a pain in my groin which shoots down my leg or I can have the feeling of a frozen poker being stabbed in my butt cheek. The pain I get in the groin area is so painful that I can not take a step forward, I honestly can not move my leg forward.
So. There you have it. My body is just a mess. I have always wondered if there is someone like me out there. My pain level on any given day is around a 8 and is a 10 more often than not and this is with having taking the 135mg of morphine I take on a daily basis.

Well, I will stop this now because my neck and shoulders are in a painful state and I feel the need for 2, maybe 3, of my NORCO.

My best to all, my new friends in pain.



  • Hi Marilyn,

    Welcome to the group. Here you will feel comfortable and we understand your pain. I'm so sorry you have been suffering for so many years. I can't imagine what that is like. I have been in chronic pain for 2 years.

    Are the doctor's planing any more surgery for you? Have they suggested anything that can bring down your pain from an 8 to a 6?

    Thanks for sharing your story. I hope you will find this site as wonderful as I do. I've met some great friends.

    All the best,

  • Oh Marilyn, welcome to the forum...we have alot of wonderful and compassionate people here!!

  • what a well written and interesting story i am looking forward to reading more from you
  • Greetings Lisa :H

    Thank you for responding and for actually being my first response.

    You know ... for all intense and purpose, my doctors of the last 10 years have been better than I have ever had. I am a member of Kaiser here in Northern California (...it's truly God's Country!). For years, folks would say that Kaiser is like "fast food medicine" but this has not been the case for me. I feel fortunate to have a Primary Care who truly listens to me and that in itself is a blessing. I have an amazing Chronic Pain Doc and his staff is as wonderful as he is.

    Further fusions or surgical treatments of just about any kind are pretty much not an option. My spine is in a current state of .... well .... solid! From my tail bone I have 3 movable vertebrae. From that point I am totally fused for 13 vertebrae. I also have a harrington rod that runs the full length of my fusion. We have considered a possible fusion of a vertebrae or two in my neck area, but I already have quite limited motion so we are reserving such for when I just can't stand it.

    I am a good girl and take all my meds, and I try to walk and do my Tai Chi, but most of the time these sorts of things throw me into so much pain that I am sort of reluctant to do too much. I'm just a bit afraid that I will need to be upping my Morphine again as I am beginning to get NO relief from the Norco.

    After going through all that I have, I am firmly of the belief that this is a life sentence with no chance for parole. I do my best to not burden my family with my lows, but they always know.

    Do you have a good support system around you? And trust me Lisa, 2 years of chronic pain is still 2 years too much. To what do you owe your pain to?

    I am very excited to have find this web site and look forward to the opportunity of new friends. Friends who can really UNDERSTAND.... you know what I mean?

    Cheers to you Lisa! Be well and I look forward to learning more.

  • Welcome to Spine Health Marilynn (nice name by the way). Wow you've had quite the spiney trip!! With all that going on, and what they have done, I am amazed with your positive and strong attitude! Sorry to hear you've had to go through all that. I hope they can figure a way to get your pain levels down to a more manageable level! For now, Welcome aboard!!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Greetings Polly !

    Thank you for your quick welcome note. It seems as though I could spend entire days on this site, just reading all the posts. You know, I guess I lived in a small tiny painful world where I have been totally unaware of all the others who struggle just as I have. It sort of brings me peace to know that I am truly not so alone, but it is driving me crazy because I want to read everything about everyone.

    I'm sure that I will be catching on to things here in short time, but do you mind me asking what a "PLIF" is? Oh, and I am truly sorry that you have been unwell for so long. I can only imagine how frightful an accident of that sort can be on the mind of a child. Isn't this just the hardest thing you have ever gone through?

    Thank you again Polly. Be well and I look forward to learning more!

  • Greetings Straker !

    Thank you for your comment on my creative writing project. I have always thought of just what I might say, if I were to write about my life with pain .... and you have seen what popped out! I went back and looked it over and I was kind of surprised myself.

    I am quite new to this web site and I find myself spending large quantities of time reading about others and their stories. Believe it or not, up until my last Chronic Pain Program, I had a very hard time buying how ANYONE else could be even close to the pain that I am in now and have been in for the past 20 years. This is totally NOT the case now.

    I am looking forward to meeting new people, like yourself and to learning about pain of all sorts and what others are doing for themselves.

    I hope you don't mind me asking, but what is it that you have gone through?

    "2010 just had a discography and now waiting for an ALIF open fusion {360 degree}"

    I have no idea what a "discography" is and what could an "ALFI open fusion 360 degree" could be. If you are comfortable, let me know what all this means. Going forward, I never want to turn a deaf ear to pain, not mine, not yours and not the pain of others.

    Thank you so much for asking to be my friend/buddy. I accepted and I hope that I did it correctly!!!

    Thank you again. Be well and feel free to share anything that you like as I am an AWESOME ear!


  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. so glad you stopped by.. i use morphine and find it very effective for my pain relief....sorry your medication is not effective for you right now.. i hope this changes soon.. please have a good look around and make yourself at home.. good luck and drop by anytime. there is always someone home... Jenny :)
  • Welcome to Spine-Health. You'll find so much information throughout the site in the form of articles and videos, you could keep yourself busy for hours. Additionally, the forum members are very friendly, knowledgeable and supportive.

    I just wanted to fill you in on a couple of terms you'll find regularly here, since you've asked:

    ACDF = Anterior Cervical Discectomy and Fusion (cervical spine surgery entering from the front)
    PLIF = Posterior Lumbar Interbody Fusion (lumbar spine surgery entering from the back)
    TLIF = Transforaminal Lumbar Interbody Fusion (also spine surgery entering from the back)
    ALIF = Anterior Lumbar Interbody Fusion (lumbar spine surgery entering from the front, stomach)
    360 degree fusion = Having both an ALIF and PLIF/TLIF, so they enter from one side, roll you over and enter you again from the other side. This can happen during one surgery or days apart.

    So that's your mini-lesson for today. Glad to have you and again, welcome to Spine-Health.

  • Hello Marilyn....of course I dont mind you asking....a PLIF is a Posterior Lumbar Interbody(sp?) Fusion....They go in through the back and remove the outer boney area of the spine, a Lamenectony (sp?) and went in and removed 2 discs then put in spacers and rods and screws to hold everything together...Lots of fun...:)

    Yes my life has been filled with physical pain....but every morning that I can get out of bed is a wonderful day!!! I am really really glad that you found this site!!
  • Hi Marilynn :wave:

    I hope you find this site as helpful/informative and supportive as I have :D

    I also hope to get to know you better :)
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
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