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Thread: New to the forum

  1. #1
    Join Date
    Sep 2006
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    North Carolina
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    8

    New to the forum

    Hi! I am 42 years young! I have scoliosis. They found it when I was in the 3rd grade and I wore a Milwaukee brace until 6th grade. It got worse despite wearing the brace for 23 hours everyday! I had surgery in 1976, I now have a Harrington rod in my back.

    I am not really having any back problems but am having some stomach pains right now. Had an ultrasound today to check my gall baldder. I do have lower back pain when doing yard work or sometimes if I lie in bed too long!!

    I am amazed to read some of the posts on here and see how much surgery has changed over the years! When I had my surgery, I was in a full body cast for a year!!! I couldn't sit down for that entire year-I was tutored from home for the 7th grade!!

    I just wanted to say hello and introduce myself. I am looking for people who have gone thru what I did or similar, close to my age to become friends with. Is this forum a good place or is there another one somewhere else??

    Trese
    Last edited by Trese; 09-27-2006 at 02:38 PM. Reason: spell check!

  2. #2
    Join Date
    Aug 2005
    Location
    Illinois
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    151
    Trese, I did not have my surgery when I was young like you but I am sure someone on this forum did. You have came to the right place. I had my first surgery 2 years ago at age 47. I have had 2 more since then. I wish you the best. I believe you have had quite an experience. Yes the medical field has come a long way.
    I know in the 70's when I was first diagnosed several drs talked about surgery to me and it would have been a horrifing experience. But at that time my curve was not bad enough and no surgeon would touch me.
    Good luck. Mattie

  3. #3
    Join Date
    Jun 2006
    Location
    Euharlee, Georgia
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    449
    I had my surgery 31+ years ago and wore a plaster body cast for 9 months. I had to wear maternity clothes over it and go to school like that. I was in 10 and 11th grades! I was also in the hospital for a month. My daughter was in the hospital for 5 days. She has 2 rods and didn't have to wear a brace or cast after her surgery. The one thing that has not changed over the years is the amount of pain from the surgery!
    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

  4. #4
    Join Date
    Oct 2006
    Location
    Texas
    Posts
    61

    Wow...sounds so familiar

    Wow, this all sounds so familiar and it comforts me to know others are out there that know what I went through. I had surgery 30 years ago and I don't hear/read about others with surgery that far back too often with experiences similar to mine.

    I, too, had to wear a body cast. Mine had a vertical oval cut-out around my stomach so that I could breathe comfortably. Funny thing, the day after they fitted me with the body cast there was a hurricane in Houston that knocked all the power out of the hospital. The hospital even flooded in the basement and I was so hot with the body cast. I remember those nice, absolutely wonderful, nurses sneaking a HUGE fan in my room when the emergency power kicked in. That was such a nice gesture and one that I will never forget.

    Mom helped me study in those days and a school teacher came to our home once a week to test me. Wow, it seems like an eternity ago to me.

    One good thing I clearly remember is when my doctor cut off my body cast and all that weight was lifted. Even better was what I saw in a mirror...a much more skinny body that wearing the cast made! lol Do you guys remember that wonderful feeling?

    Anyway, wanted to say thanks to you all for sharing.

    Marilyn ahlan_warda@yahoo.com
    Last edited by MariHOU; 10-25-2006 at 11:23 AM.

    1975 Clear hard plastic body cast worn
    1976 Operated for high grade Spondylolisthesis; lumbar fused from L2-Sacrum and Harrington rods inserted
    1976 Wore regular type body cast and in bed rest for 1 year
    1977 Rods removed
    2006 Diagnosed with Flat back syndrome with sagittal imbalance
    2008 Scheduled for wide pedicle subtraction osteotomy, sooner if pain increases


    My email is ahlan_warda@yahoo.com

  5. #5
    Join Date
    Oct 2006
    Location
    Phoenix, Arizona
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    68
    Hey, can I come play too? I would love a peer(s)!

    Trese, I am 43, braced at 13, Milwaukee, first one was a dud as I was allergic to the plastic and my "stomach" burst. Actually, my skin rose up about ...1/4 inch or more but I didn't complain and then everything was wet and Mom, an RN, said I didn't have to wear it anymore. Round II, leather brace.

    How did you all handle it? I painted a rose on the metal in the front. I had two plastic "gems" that weren't sparkley but "feminine" to me, and I glued those to either side of the throat plate, underneath on the metal.

    I can not stand any kind of turtle neck or anything around my neck, save necklaces etc. I despise maternity outfits, although I had at least two cute ones. Thank god, smocks were "in" at least for a little while in those years.

    I had two huge scabs on both pelvic bones but sure enough they went away.

    I had surgery at 15, Harrington Rod, fusion, pelvic bone, body cast for 9 months and then 9 months of being really really careful.

    I was in Spokane, WA, where were the rest of you, when I could have "used" you as a friend, or compared notes. tee hee hee It's nice to meet everyone.

  6. #6
    Join Date
    Oct 2006
    Location
    Texas
    Posts
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    CH43....welcome!

    I think that it is so cute that you painted a rose on the metal and I'm sorry to hear what you went through with the allergic reaction. Wow. Glad that there was another option available for you. And how LUCKY that your mother was a RN during that time. Wow!

    Coming hom from the hopsital I remember that the paramedics had to take me upstairs, I was heavy with the 50+ pound body cast. They worked very hard to get me upstairs. lol Then months later when I was so tired of staring at the same four walls in my room I remember my mom and dad deciding to bring me downstairs for a better view. That was an experience! They didn't know quite how to get me downstairs and after much brianstorming they decided to take down a door, put me on it, tied me to it so that I wouldn't slip off and took me downstairs. I will never, ever, forget what they went through to bring me to a better view (I was placed next to a window). We laugh about it now and recall how they nearly tipped me over a couple of times.

    There are so many good memories, despite a difficult situation.

    Love this site!

    Marilyn

    1975 Clear hard plastic body cast worn
    1976 Operated for high grade Spondylolisthesis; lumbar fused from L2-Sacrum and Harrington rods inserted
    1976 Wore regular type body cast and in bed rest for 1 year
    1977 Rods removed
    2006 Diagnosed with Flat back syndrome with sagittal imbalance
    2008 Scheduled for wide pedicle subtraction osteotomy, sooner if pain increases


    My email is ahlan_warda@yahoo.com

  7. #7
    Join Date
    Apr 2005
    Posts
    913

    Patience

    Wow, Marylin and also others who have had spinal fusions many years ago, I am in admiration of how much patience you had, since some of you had to stay in bed for so long, some couldn't walk b/c of the bodycast and fusion, etc.

    I know it's a lesson that could be learned from younger patients and the world we live in today, but nowadays some people(young and old) want quick fixes and don't want to take time to take care of themselves properly, things in life need to be going full foce all the time it seems, and that gives me a headache. Doctors here in Canada are much more conservative when it comes to taking our time to heal, like returning to drive for example and I'm grateful for that. Sometimes I see people who have far less health issues or smaller surgeries than us and they have more patience at times, an so I think we sometimes need to realize how big such a surgery this is and relax and let healing and living take it's course.

    Anyway, rambling on my part but again I applaud your strength and determination, and all the patience you had
    Last edited by sweetness514; 10-26-2006 at 02:15 PM.
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

  8. #8
    Join Date
    Oct 2006
    Location
    Phoenix, Arizona
    Posts
    68
    Hey, MariHou!

    Sounds like you and Issabella Rosellini, the actress, had a similar childhood experience.

    Yes I was lucky to have a Mama who was an RN, but any mother would have have seen the blaze and the obvious wet t-shirt, and taken her daughter out of the brace. btw, leather is the old material the braces were made from. Yes I was lucky.

    I vastly preferred it as it had texture, smell, and wasn't that horrid crayola human pink color. That was always my least favorite crayon in the box.

    I was on this board a few years ago, trying to find out if my body cast really had been 30 lbs or so. I found many people who went through the same embarrassing events as I had been put through. It didn't make me feel better it made me mad. Traction for example. Someone might have explained that one. And someone might have come in a few times to see if I was alright.

    Lord. The memories.

    I eventually got off this board because I felt depressed and I think I had also riled or scared some families whose little kids were still going through it. I didn't do this alone, e.g. there were contributing voices from other "grown-up" scoli kids like me. Well you know scoli kids we're troopers and don't complain alot so it was like parents hearing what's really going on in there, especially when they thought their daughter(s) was a real trooper.

    I felt depressed when I first came back here a few weeks ago looking for information on MRIs etc. I think my thought was, "God. It is still going on," for some people. It frightened me. It depressed me.

    Did we all read or see, "Looking for Mr. Goodbar"? I think she too had to be in her family room for a year. Your story of the door is priceless.

  9. #9
    Join Date
    Oct 2006
    Location
    Texas
    Posts
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    You guys are great!

    Wow! You guys are awesome!

    Sweetness514.... thanks for your kind words! You MUST have a ton of patience with this ordeal as I see that you had to wear a brace for 4 years up to 23 hours at a time and had multiple operations. WOW!!! I don't know if I could have worn anything for 4 years and for that long in a day. Do you know what? Gloria Estafan, the singer, had a similar operation to mine several years ago when she had a boating accident and she was up and walking within 1 or 2 weeks. This is absolutely amaizing to me. She went through what I went through in no longer than 2 weeks and me more than one year laying down. Wow. I am not complaining but rather in awe of how much technology advanced. Incredible.


    CK43...Stay on this board please. We can all help each other. I can't tell you how many time in my life someone notices that I am walking "crooked" and eventually they ask about my back problems. Nine out of ten times I cannot get out what occurred to me because whomever I speak to always interrupts me to tell me about their minor back aches. Its like no one cares...but those who have gone through this before. That's why I love this board. Yes, I care and I'm here to talk to ya...okay? I love that those who wrote above are so wonderful and understanding. BTW, did you ever get the info on MRI's that you were looking for? I have had several done and during all of mine I laid down and this huge machine with an arm moved slowly around me. I've heard other people lay down in an enclosed area but I didn't go through this. I'll ask around if you still need info. Just let me know. No, I didn't see Looking for Mr. Goodbar. Good one?
    Last edited by MariHOU; 10-30-2006 at 03:40 PM.

    1975 Clear hard plastic body cast worn
    1976 Operated for high grade Spondylolisthesis; lumbar fused from L2-Sacrum and Harrington rods inserted
    1976 Wore regular type body cast and in bed rest for 1 year
    1977 Rods removed
    2006 Diagnosed with Flat back syndrome with sagittal imbalance
    2008 Scheduled for wide pedicle subtraction osteotomy, sooner if pain increases


    My email is ahlan_warda@yahoo.com

  10. #10
    Join Date
    Jul 2005
    Location
    California
    Posts
    269
    Normally I wouldnt respond to a post where I dont really have anything good to say, but I have to thank you all who went throught this surgery so many years ago. As I am reading this I am laying in bed (in pain) and was thinking about my good/bad day, but it is uplifting and brings hope to "hear" of all you who had surgery when plaster casts were around and have such a positive outlook on the whole thing. I had to laugh at the huge fan and the door to go downstairs, those just brought joy. In none of these posts did I hear resentment, and that is wonderful.
    I am lucky that I didnt have my surgery years ago (no offense) and that I am one of those patients who is able to be out of bed in just a couple of days. I dont know what I would do if I couldnt walk for a year!!!
    Thanks for putting a smile back on my face.
    Mandy

  11. #11
    Join Date
    Apr 2005
    Posts
    913
    [QUOTE=MariHOU]

    Gloria Estafan, the singer, had a similar operation to mine several years ago when she had a boating accident and she was up and walking within 1 or 2 weeks. This is absolutely amaizing to me. She went through what I went through in no longer than 2 weeks and me more than one year laying down. Wow. I am not complaining but rather in awe of how much technology advanced. Incredible.

    [QUOTE]

    Yes, I knew about Gloria's accident. She broke her back while on a tour bus I think she said. She has a pretty small rod but she did admit that the recuperation was hard, as her hubby had to turn her many times and it was a year before she felt better.
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

  12. #12
    Join Date
    Oct 2006
    Location
    Texas
    Posts
    61

    Dr. LaGrone

    Just updating those in this thread filled with WONDERFUL people. Made an appointment with a new doctor in Amarillo, Texas, in late January 2007. His name is Dr. Michael LaGrone. Linda Racine from this website recommended him to me twice, more recently after I started a new thread regarding a new pain that I'm experiencing (lower left back that now spread to my left hip).

    I'll update everyone here about this doctor after I visit him in January.

    Sweetness...thanks for the correction on the Gloria Estefan accident.

    CurvySAT05...Mandy, how are you feeling today? Did you have your surgery recently? We're here for you.

    1975 Clear hard plastic body cast worn
    1976 Operated for high grade Spondylolisthesis; lumbar fused from L2-Sacrum and Harrington rods inserted
    1976 Wore regular type body cast and in bed rest for 1 year
    1977 Rods removed
    2006 Diagnosed with Flat back syndrome with sagittal imbalance
    2008 Scheduled for wide pedicle subtraction osteotomy, sooner if pain increases


    My email is ahlan_warda@yahoo.com

  13. #13
    Join Date
    Nov 2006
    Location
    New Jersey
    Posts
    5

    Also new to thread

    I had my surgery in 1975 at the age of 23, double rods (thoracic and lumbar curves). I fortunately have never had a problem till this past week and I found this forum by searching "Harrington rod complications". What scares me is all the people who have had their "hardware" removed and all the complications I read about! I have been experiencing progressively worsening pain in my lower spine radiating to the left hip area since last Friday (today is Thursday) and I have an appointment with an orthopaedist in an hour. I have been taking, for the past year, twice a week, a weight lifting class at my gym - maybe that's the problem, I don't know - I don't know what else it could be. I'll keep you all posted about the results, but I have to admit finding this forum after all these years is enlightening and I'm sure will prove to be a great resource.

  14. #14
    Join Date
    Oct 2006
    Location
    Texas
    Posts
    61
    DonnaGrace...

    Wow...please do come back to this thread to update us on what the doctor says to you. I am experiencing a similar pain for about 1 months and this is the reason for my doctor visit in January.

    I am very intersted to see what your doctor today tells you. I hope that you feel better soon.

    Thanks!

    1975 Clear hard plastic body cast worn
    1976 Operated for high grade Spondylolisthesis; lumbar fused from L2-Sacrum and Harrington rods inserted
    1976 Wore regular type body cast and in bed rest for 1 year
    1977 Rods removed
    2006 Diagnosed with Flat back syndrome with sagittal imbalance
    2008 Scheduled for wide pedicle subtraction osteotomy, sooner if pain increases


    My email is ahlan_warda@yahoo.com

  15. #15
    Join Date
    Oct 2006
    Location
    Phoenix, Arizona
    Posts
    68

    Hi all!

    I am so sorry I was away. Family, a large family, started a thread and my in-box was filled.

    Mandy, what was it like your surgery and getting up/round in a week or two? Let us live vicariously.

    Sweetness, I would call myself a rat but I am not one, just was barraged by e-mail from family. I couldn't open it all in one day.

    Tomorrow I will try to post my experience from yesterday. Yes MaryHou! results from MRI and excellent doctor. He IS. How is that for an 'S' Curve. IS.

    Oh well, poor, oh well. Maryhou! I really want to post my finds as they just have to do with age, and NOTHING to do with scoliosis. NOTHING to do with Harrington Rod.

    I couldn't hang out here before a few years ago, and I am sorry. I surely have much experience to offer but a few years ago, here, I got depressed. I couldn't stand it.

    Now it is more like we sisters and that there is nothing "wrong" with me or us, just what is wrong. Understand? I'm not defective I'm just another one.

    Geesus. It's been 30 years and it's all underneath?

    Mandy. C'mon tell us what it was like. It's progress, understand? I can be more at peace knowing it doesn't continue with little girls (you may or may not be little who cares) I think that's what got me with this board a few years ago. That it was still happening.

    MaryHou! Thanks for encouragement. Sweetness, I am so so so sorry for engaging a friendship then to disappear.

    I want to write to the group tomorrow, under a different subject header, so that it will serve more. Herniated disc, kids. I am 43 and I am just aging. Raises another question doesn't it.

    Iz it cuz I am black (I am caucasian but do we all always go THERE, e.g. scoliosis? The slightest pain e.g. Thanks for letting me into the playground. Where were you kids when I was small? It might have been nice you know.)
    Last edited by ck43; 11-03-2006 at 06:40 PM.
    Traction at 13, body cast 1 mos., Milwaukee, first plastic (severe allergy, abdomen skin burst, watery) then leather. Harrington Rod @ 15, 9 mos body cast, hips up. 9 more mos being careful and protective. Degenerated disc C4-5 I think well above the rod. Degenerated disc below the rod now? Probably.

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