QUESTION OF THE WEEK

[Guest guest]

It's good to get this kind of feedback from you and others. Cam gets

all the credit for the QOW inspiration -- good thinking, Cam!

Please excuse the slight delay this week, but Question #3 should be

available some time today.

>

> I love having the QOW, I have had so many of my questions

> answered this week by people that have resonded. Thank you

> for coming up with this idea.

>

>

> Terry

[Guest guest]

In 1958, shortly before age 12, my orthopedist found it. Since I saw him regularly for other reasons, we knew (were told?) it developed very quickly in about 6 months to the point that I should have a fusion as soon as possible. A month before my 12th birthday, I had the fusion (T5-11) to stop further curving. Having dealt with health issues my whole life, my parents dealt with this pragmatically and I absorbed that attitude. I don't remember a huge trauma - parts of the attention were even positive :>) Initially we were told I would be in a cast and the hospital for 6 months; actually I was out of the hospital in 2 weeks, but still in that cast for the 6 months. I was blessed to live near and have connections to s Hopkins in Baltimore, so I received excellent care at Children's Hospital there. Given the state of medical knowledge and care at the time, I think it was the best decision for me. We were told even then that a lower compensatory curve would likely grow and cause problems, and it did. However, I still had relatively little or manageable difficulty until I was 46. Those years included carrying two children to full term and living in many locations with much moving, with all the lifting that implies.I have just (in January) taken what I hope to be the last decision on this issue...well, maybe not last, but getting there. In 1994, I had another fusion which covered T-1 to L-4, and got very good results. The correction was limited by the original fusion, of course, but after a rugged bout with a DVT and a very nasty staph infection, I had to say I was glad I did it. Again, I knew at the time that the remaining lumbar discs would likely need fusing but my surgeon wanted to leave me a little(!!) flexibility as long as possible. About a year ago, I started with numbness in my legs that felt like a prelude to weakness, so I knew "here we go again." In January I had the remainder fused and the whole spine is now anchored to my pelvis. We won't know for a while whether I have a successful fusion (I'm no longer 12 or even 46!) but there are no known problems....and I have no numbness or pain. That is worth a lot, even as I deal with the remaining medical bills.The odyssey hasn't been as straight forward as all that, obviously, and there certainly were times of extreme emotional ups and downs. However, over all, I have always known I was blessed to be able to get the care I needed, to have a supportive family, and that my situation was far less difficult than what so many have faced. I have also become an active believing Christian who sees my Lord's care and provision throughout my life. Had I ended up in a wheelchair, in constant daily pain wearing on me, or any other outcome, He still would have been with me to strengthen, comfort, and guide. At each step I have looked at worst-case scenarios and prepared myself for that, while still hoping for the best-case. My husband thinks I'm actually too negative in my outlook, but I consider it realistic. We've all been through too much and seen others with very, very hard situations to be naive about how bad it can get. In the end, though, I do what I need to do and trust in my Lord for the outcome, because I know I can trust Him when I can't trust myself or others.I know I've gone way beyond the question, but that beginning was only a speck in the whole journey. May your own journey be blessed by care and gentleness given to you from people who love you, and, should you desire it, by the love of Christ sustaining you.MSGnehmOn Aug 27, 2009, at 10:44 AM, feistyfounder2000 wrote: Please take a moment to answer the question below (in boldface, with asterisks around it). This should give us a better idea of ourselves "collectively" and individually... When did this difficult, instructive, l-o-o-o-o-n-g medical journey begin for each of us? Where were we at the time? How old were we? Who broke the news, and how did s/he break it? How did we feel about the information we received at the time? How did our parents feel, if they expressed this to us? How did our families decide what to do next? Did we feel we had some say in the matter, or was it all in the hands of the adults in our lives (if we were teens) or the health care professionals (if we were adults ourselves)? What did we do with the information? How did the decision work out for us? Did we do the right thing? If we had it to do over, would we want to proceed differently?Any details you recollect will be interesting and useful to your fellow Feisty members. Just hit "Reply" and write down your memories and thoughts -- in 25 words, 200 words, however many words you are moved to input -- then send your message on to the group. Please don't feel you have to censor anything; candor is one of our dearest-held values at this group!Here is the question: *** When and how did you first find out you had scoliosis? ***Thanks for your participation . . . And have a good, hope-filled day.As ever, Rasche (aka "Eliana" and "poetryperson")List Owner,

[Guest guest]

I found out I had scoliosis when I was 9 years old. It was identified by a screening program at my elementary school where you would bend over and a nurse or someone would take a look at your spine from behind. I don't thunk they would have diagnosed anything in the school but given you a slip for your parents to follow up. I then went to an orthopedic and then to a brace maker. My curve was 19 degrees at the time. I remember passing out in the brace makers office the first time they put the brace on me. I sometimes wonder now if I am a shallow breather, have a smaller rib cage, and or a narrow pelvis as a result of wearing a brace for 6 years. Like maybe it has a corsetting effect especially since I wad in my prime development years while wearing it. I also had to look through a picture book at the brace maker's. I think it was supposed to scare you into wearing it, and it did. It had pictures of people who were

severely deformed and was basically like a threat of what would happen if I didn't wear the brace. I did wear it I remember crying and complaining at first when I started of having to wear it just a few hours a day building up to 23 hours. I have a young mom, she was 31 at the time and I remember her best friend being over alot, now I know it was for moral support. By the time I needed surgery, at 15, it was sort of a logical next step. My curve was over 45 degrees and 6 years of bracing weren't able to stop it so I was told that the curve would continue to worsen. I remember my parents asking me what we should do, I'm sure I didn't really get to make the decision, I said I would have the surgery. I wish I had known to work on increasing my flexibility beforehand to increase correction. The purpose of my surgery, I was told was to fuse the curve in place not to correct it.I posted a question a couple years ago about

pregnancy and the repsonses were very helpful, not that my OB would pay any attention to the info. I had a healthy girl, 5 weeks early by unplanned c-section after I'd reached the safe maximum hours of pushing. That seems to be in line with most of the people who responded to my question. My daughter spent 2 weeks in NICU but is fine now. I am currently pregnant with twins and nervousr since twins already tend to be born early. I expected a lot of back pain while pregnant but it wasn't as bad as I thought it would be. My sciatic acted up on occassion but all the relaxin your body releases actually seemed to help.Thanks.Sent from my iPhoneOn Aug 27, 2009, at 10:44 AM, "feistyfounder2000" <elizabethrgonzalez@...> wrote:

Please take a moment to answer the question below (in boldface, with asterisks around it). This should give us a better idea of ourselves "collectively" and individually... When did this difficult, instructive, l-o-o-o-o-n-g medical journey begin for each of us? Where were we at the time? How old were we? Who broke the news, and how did s/he break it? How did we feel about the information we received at the time? How did our parents feel, if they expressed this to us? How did our families decide what to do next? Did we feel we had some say in the matter, or was it all in the hands of the adults in our lives (if we were teens) or the health care professionals (if we were adults ourselves)? What did we do with the information? How did the decision work out for us? Did we do the right thing? If we had it to do over, would we want to proceed differently?Any details you recollect will be interesting and

useful to your fellow Feisty members. Just hit "Reply" and write down your memories and thoughts -- in 25 words, 200 words, however many words you are moved to input -- then send your message on to the group. Please don't feel you have to censor anything; candor is one of our dearest-held values at this group!Here is the question: *** When and how did you first find out you had scoliosis? ***Thanks for your participation . . . And have a good, hope-filled day.As ever, Rasche (aka "Eliana" and "poetryperson")List Owner,

start: 0000-00-00

end: 0000-00-00

[Guest guest]

When I was in grammar school (in the 1950's) we would have posture exams that would inevitably indicate that I had one shoulder lower than the other, so I would be told to wear a lift in one shoe to even it out. It wasn't till I was about 22 years old and working for a surgeon at a university medical center that I found out that there was a name for what I had and a treatment for it. I was manning a both at a medical convention for and right next to our booth was an orthopaedic display of "scoliosis". I went over and saw the x-rays and said "I have that!". The director of orthopaedics at that time was a leader in the field so he suggested that I make an appointment to see him, which I did. I don't recall having any back pain, but my curvature was very noticeable by then. I had an x-ray taken from a previous car accident when I was about 18 years old, and he compared it to an x-ray which he took (I was 23) and there was a difference which meant that my curves were still increasing even though I had stopped growing. He indicated that if I did not have the surgery, my rib cage would collapse into my lungs by the age of 40 and I would be completely hunched over. Also, I was too old by then to wear a brace.

The doctor I was working for called at friend at Cornell in NYC and got me an appointment with a scoliosis specialist at the Hospital for Special Surgery for a 2nd opinion. That doctor was Dr. Doherty. I chose Dr. Doherty (over Dr. DePalma in Newark, NJ) at HSS because his post-op time in a body cast was 4 months (versus 9 months). I had two Harrington rods placed in 1975.

I was one of the lucky ones in that I literally led a very normal, pain free life up till around three years ago. Over the past 30+ years, I gave birth to two children with normal pregnancies and deliveries; I was a "Jazzercise" instructor for about 10 years, and I never really gave my spine a second thought. Until November of 2006 when I could barely walk from the low back pain. That was when I received my "flatback" diagnosis. I went to an orthopaedic surgeon who made the diagnosis and explained the surgical procedure, but we elected to treat the pain instead of rush into surgery. I was in shock!

I began my research on "flatback" and found the two groups on and of course the Scoliosis Research Society site, as well as the National one. I decided to get more opinions, so I scheduled appointments with Dr. Boachie at HSS and Dr. Errico at NYU. I saw Dr. Errico first and was very impressed with his experience, knowledge and expertise. He was also in no rush to the OR, so I decided to let him take over my pain management. I cancelled my appointment with Dr. Boachie because I did not want to pay $650 for a 3rd opinion! After a little more than a year of "pain management" shots, drugs, etc., and when I felt I could no longer go on with this major interruption in my life, I scheduled revision surgery with Dr. Errico which I had in January of 2008. So now I am a little more than a year and a half post revision and I literally got my life back! I am no longer on any medications and my mobility, while slightly impaired (bending over), is nothing to have to deal with compared to the pre-operative pain. I am just used to deep knee bends and squats!

I consider myself very fortunate in my scoliosis journey to have had two very successful surgeries. Who knows what lies ahead 20 years from now, but right now I feel terrific!

Donna T.

From: [mailto: ] On Behalf Of feistyfounder2000Sent: Thursday, August 27, 2009 10:44 AM Subject: Question of the Week

Please take a moment to answer the question below (in boldface, with asterisks around it). This should give us a better idea of ourselves "collectively" and individually... When did this difficult, instructive, l-o-o-o-o-n-g medical journey begin for each of us? Where were we at the time? How old were we? Who broke the news, and how did s/he break it? How did we feel about the information we received at the time? How did our parents feel, if they expressed this to us? How did our families decide what to do next? Did we feel we had some say in the matter, or was it all in the hands of the adults in our lives (if we were teens) or the health care professionals (if we were adults ourselves)? What did we do with the information? How did the decision work out for us? Did we do the right thing? If we had it to do over, would we want to proceed differently?Any details you recollect will be interesting and useful to your fellow Feis ty members. Just hit "Reply" and write down your memories and thoughts -- in 25 words, 200 words, however many words you are moved to input -- then send your message on to the group. Please don't feel you have to censor anything; candor is one of our dearest-held values at this group!Here is the question: *** When and how did you first find out you had scoliosis? ***Thanks for your participation . . . And have a good, hope-filled day.As ever, Rasche (aka "Eliana" and "poetryperson")List Owner,

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[Guest guest]

Hi,

 

I was informed during pregnancy they believe I had a small curve in my lumbar spine.  I know my pelvis was small and boy shaped and never carried full term; the 3 were very healthy though.  I had terrible sciatica with low back pain but I carried my girls low.  I always had good well fitting shoes because my toes turned in when I was a child........they still do but not as bad.  My back problems began during an abusive marriage and worsened over the years.  I was not allowed to see a doctor if here was a bruise or anything.  By the time I married a wonderful, gentle, loving man 4 years ago, I was in constant pain and began being repaired then.

 

There was a problem with the first back surgery which I felt right away; things worsened after the second and I continued having back pain as well as nerve damage.  Things worsened, over the past two years my lumbar curve became more pronounced along with a twist in the vertebra at L1 so I bend forward as well as to my right side,  I am curving around on the right as well creating a bit of a problem with the ribs. 

 

I know there is a potential fusion failure but it seems as though the surgeon would say and do something about the complaints if they weren't trying to hide anything.  Luckily, I had knee surgery and that doctor had his nurse make appointments with a few other doctors.  I was glad to have a pain doc as I was finally getting some much needed relief but I constantly asked for referrals as I knew something wasn't right, it wasn't all nerve damage.  A few doctors diagnosed me with flat back and sent me to a neurosurgeon who noticed it right away.

 

I need to have my spine stabilized and although the surgeon will do that, I am waiting for Dr. Horton's office at Emory in Atlanta, Ga to call me to o the flat back revision.  I was told the guy who did my original neck fusion a few years ago an who is the one who will stabilize my neck does revision surgery but he's not on he list. He's a good surgeon but I think I would much prefer to go to Emory.

 

I remember one person in the group is from Ga.  Dr. Horton is on the list you provided; has anyone seen him? 

 

I just realise this most likely sounds pretty disjointed because my sleep meds have begun to work super well.  I wanted to write this tonight while it was on my mind as I have been having reams I am in he hospital prepped to have surgery only I forgot o get a surgeon.

 

Much Peace,

 

Robin

 

  

On Thu, Aug 27, 2009 at 10:44 AM, feistyfounder2000 <elizabethrgonzalez@...> wrote:

 

Please take a moment to answer the question below (in boldface, with asterisks around it). This should give us a better idea of ourselves " collectively " and individually... When did this difficult, instructive, l-o-o-o-o-n-g medical journey begin for each of us? Where were we at the time? How old were we? Who broke the news, and how did s/he break it?  How did we feel about the information we received at the time? How did our parents feel, if they expressed this to us? How did our families decide what to do next? Did we feel we had some say in the matter, or was it all in the hands of the adults in our lives (if we were teens) or the health care professionals (if we were adults ourselves)? What did we do with the information? How did the decision work out for us? Did we do the right thing? If we had it to do over, would we want to proceed differently?

Any details you recollect will be interesting and useful to your fellow Feisty members.  Just hit " Reply " and write down your memories and thoughts -- in 25 words, 200 words, however many words you are moved to input -- then send your message on to the group.  Please don't feel you have to censor anything; candor is one of our dearest-held values at this group!

Here is the question:    ***  When and how did you first find out you had scoliosis? ***Thanks for your participation . . . And have a good, hope-filled day.As ever,

Rasche (aka " Eliana " and  " poetryperson " )List Owner,

-- Live the life you have imagined!HD ThoreauThings do not change.  We change.  HD ThoreauThere is life after PTSD!!!   Life is what you make of it!Waneeshee.......may the way be beautiful for you

[Guest guest]

I have had a strange sort of life. I always knew if I fell down the pain in my back would be horrendous, So I avoided stuff that made me hurt. Running hurts, jumping hurts, building a snowman hurts, roller coasters hurt, and falling over hurts for days etc. I became super aware of where I put my feet (challenging when you are naturally clumsy!) Games/gym lessons were a special kind of torture.

How did I find out the diagnosis?At 13, I was given a routine checkup by the school nurse along with all my year group. At the end of the check up she asked me to let her take me home at the end of the school day instead of catching the bus. I said if there was something wrong with me then she had to tell my mum then let my mum tell my dad (just the way my parents were) So she came to my house and I was in the room as she explained to my mum that I had something called scoliosis and then I had to lift up my shirt at the back and lean forward - And I heard my mother gasp and start apologizing to the nurse "I didn't know...how could I know... she's 13, I don't see her without clothes anymore" basically babbling - spun to look at her and she was as white as a sheet and holding her hand over her mouth. Then the nurse left and my mum took me to my dad, waiting in another room, to repeat the performance. When my

parents then told me I felt relieved! Finally, at last, I had a name for what was wrong with my back, and people now believed me, instead of saying I was at best imagining it, and at worse, faking.

We had to go to the special orthopedic hospital where I had a day of tests, some of them very painful. They knew I had scoliosis but were trying to work out why and how bad. Then I saw a consultant. He started to tell my mum and me about options for treating me. Then all of a sudden the head consultant walked in with all his entourage! he said quite bluntly "we are going to get you in for this operation as soon as we can" my mum and I just kinda went huh?, my mum said "we were just this second told we had options?" he looked at her and said "you don't" again with the huh? "There is NO options. We have operate and we have to do it soon" then he turned to me and told me I was lucky as they had only just stopped using braces. Which I have to say until I joined the group I never appreciated before!

They delayed my surgery for a while till my home life could be arranged so I could have all the care I would need. In the meantime I was curving at a huge rate and could no longer breathe properly, I couldn't sleep flat and had to sleep propped up on a bean bag which would support my odd shape.

How did my parents cope? After my operation, my mum used to visit me in the hospital for hours everyday - the hospital wouldn't let her stay longer. My dad didn't visit as much because he couldn't take it. He used to look at me and start crying. "My little girl..." he'd say and then he'd have to leave. I understood and didn't take it personally, in fact it probably helped me, because I tried extra hard with my physio because I needed not to put my dad through anymore of that than I had to. My Dad couldn't deal with any illness in the people he loved.

My mum looked after me. She did everything she could against the fact I was such a determinedly independent person. I did everything I could do for myself and a bit more. Now I am much older and you can see her cringe when I mention my back, especially now when it's obviously wrong again. She will, given a opportunity start saying things like "I had to let them operate - they said you were dying. I didn't know what the rods would do to you!" I've explained a billion times that it isn't her fault and she didn't have a choice, and look at how much more i've achieved that I wouldn't have if I'd not had the rods put in - but she still feels guilty.

Would I do it differently? No, I couldn't have done it differently - to do so would have ended my life at 13, and I've had too many cool experiences in the following 20 years to give them back!

Sorry I've rambled a bit but you only have yourself to blame - you asked!

love Judith

From: feistyfounder2000 <elizabethrgonzalez@...> Sent: Thursday, August 27, 2009 3:44:18 PMSubject: Question of the Week

Please take a moment to answer the question below (in boldface, with asterisks around it). This should give us a better idea of ourselves "collectively" and individually. .. When did this difficult, instructive, l-o-o-o-o-n- g medical journey begin for each of us? Where were we at the time? How old were we? Who broke the news, and how did s/he break it? How did we feel about the information we received at the time? How did our parents feel, if they expressed this to us? How did our families decide what to do next? Did we feel we had some say in the matter, or was it all in the hands of the adults in our lives (if we were teens) or the health care professionals (if we were adults ourselves)? What did we do with the information? How did the decision work out for us? Did we do the right thing? If we had it to do over, would we want to proceed differently?Any details you recollect will be interesting and useful to your fellow Feisty

members. Just hit "Reply" and write down your memories and thoughts -- in 25 words, 200 words, however many words you are moved to input -- then send your message on to the group. Please don't feel you have to censor anything; candor is one of our dearest-held values at this group!Here is the question: *** When and how did you first find out you had scoliosis? ***Thanks for your participation . . . And have a good, hope-filled day.As ever, Rasche (aka "Eliana" and "poetryperson" )List Owner, FeistyScolioFlatbac kers

[Guest guest]

I first found out that I had scoliosis when I was in the eighth grade (1973-1974) via a doctor appointment with an orthopedic surgeon. I did not really know what scoliosis was, and I'm not sure how much my parent's knew; however, that was soon to change. As boys develop later that girls, my scoliosis was fairly mild at that time, and it was decided to observe it at that point.

There was this girl who was in my class who missed all of ninth grade; but, I did not know why. She attended ninth grade graduation in a walking body cast as she had Harrington Rod spinal fusion surgery. That was my real first introduction as to what scoliosis was all about. The last time I saw her was at our 20th High School Reunion, and I know she was dealing with pain, so it was very likely had Flatback Syndrome. If she is on this list, I would like to know how she is doing. To maintain her privacy, her first name is Patty, and we went to Shaker Heights High School.

During my sophomore year of high school, I learned that my curve had worsened, and that I would need to get a Milwaukee Brace. There was another girl in my high school class who had went to the "other" junior high who was being weaned from the Milwaukee Brace. I met with her, and we discussed to Milwaukee Brace, and what it was like wearing it, etc. Her name is . I got the brace during Thanksgiving Week, and spent most of the week in the hospital for "Brace Training". Now talk about an eerie omen. I was in the high school band, and each Spring the band and choir had a picnic. During the bus ride to the picnic site, one of 's friend's told me that needed to have spinal fusion surgery. A few hours later, I looked at my watch to check the time. The watch was dead at about the time I had gotten that news! Creepy!! At that same 20th High School Reunion, was doing well. No major pain issues.

I wore the Milwaukee Brace for 22 hours a day from November 1975 through the Summer of 1978. Just before I left for college I got a brace that had just been developed, the TLSO. I wore the TLSO during the day, and the Milwaukee at night through my Freshman year of college. My Sophomore year of college was my weaning year. Part of the year I wore the TLSO day and night, and part of the year just at night.

Upon completion of the brace (1979-1980), I was in the "gray area" in regard to surgery. So, I decided to put it off. I'm happy I did, as if I had the surgery at that time, it would have meant Harrington Rods, and six to eight months in bed in a body cast.

From 1980 through 1996 both my curves and pain worsened, and on July 24, 1996 that eerie omen from years ago came true. I had spinal fusion surgery T9 to S1 with Acromed Instrumentation (a generic version of TSRH System Instrumentation) to correct a 65 degree lumbar curve/mid 30's degree thoracic curve. My curves were corrected to 30 degree lumbar, mid 20's thoracic.

Following surgery, I wore a TLSO Brace (I was out of bed within two days, and began PT). About six weeks following that surgery, I developed loose hooks in my lumbar spine, and required "revision surgery" on September 9, 1996. The loose hooks were probably due to incorrect bending; therefore, a leg brace was added to the TLSO. The leg brace was removed about a year following the first surgery, and I stopped wearing the TLSO about a year from the second surgery.

Very soon after I stopped wearing the brace I began have pain. That shortly became chronic pain. A number of treatments were attempted to deal with the pain; however, nothing helped. I was then put on a couple of narcotic pain medications. They helped somewhat for a number of years; however, after a number of years performing any task in a seated position, and the side effects took there toll. I am currently on disability; but, as of the end of May, off the narcotics.

S.

[Guest guest]

I would very much be interested in hearing your story. So much has changed since

the sixties and I'm grateful for that. How are you doing now a days, and how can

we help you out? blessings on you for being a survivor. It's ok to tell me the

uncensored version of your story. I'm tough enough to take it....keep in touch!

>

> I found our I had scoliosis in November 1961. I had just turned 13 and my

mother asked me to stand straight because she noticed one shoulder was much

higher than the other. I told her I was standing straight.

>

> Off to the ortho doc and I cried the first time I saw an x-ray of my back. It

was so deformed. Doc informed us that I had to have surgery right away because

I had already turned 13 and they wanted to do a fusion before I stopped growing.

He said he might put in something new, a Harrington rod. I screamed " NO RODS " .

Just the thought scared me to death. As it turned out, that was the only

decision I was allowed to make for the next 10 months.

>

> I was sent to the " crippled children's hospital " and in a couple of months

fitted with a Milwaukee brace. The brace was supposed to reduce the curves and

then they would do surgery to fuse the spine.

>

> Over the next 10 months I was not involved in any decisions that were made. I

guess the saving grace was that I was 13 and didn't know any better. In the

hospital there were other girls with scoli so we sort of helped each other out.

There were also kids there with polio and paralyzed from auto accidents. When I

think back, it's amazing how we were there for each other; it's all we had

except for visits from our parents.

>

> I can elaborate on this experience if is interested. It was only

later that I realized what a turning point this was in my life; the emotional

fallout; the social consequences.

>

[Guest guest]

>

> Please take a moment to answer the question below (in boldface, with

> asterisks around it). This should give us a better idea of ourselves

> " collectively " and individually... When did this difficult, instructive,

> l-o-o-o-o-n-g medical journey begin for each of us? Where were we at the

> time? How old were we? Who broke the news, and how did s/he break it?

> How did we feel about the information we received at the time? How did

> our parents feel, if they expressed this to us? How did our families

> decide what to do next? Did we feel we had some say in the matter, or

> was it all in the hands of the adults in our lives (if we were teens) or

> the health care professionals (if we were adults ourselves)? What did we

> do with the information? How did the decision work out for us? Did we do

> the right thing? If we had it to do over, would we want to proceed

> differently?

>

> Any details you recollect will be interesting and useful to your fellow

> Feisty members. Just hit " Reply " and write down your memories and

> thoughts -- in 25 words, 200 words, however many words you are moved to

> input -- then send your message on to the group. Please don't feel you

> have to censor anything; candor is one of our dearest-held values at

> this group!

>

> Here is the question:

>

> *** When and how did you first find out you had scoliosis? ***

>

> Thanks for your participation . . . And have a good, hope-filled day.

>

> As ever,

>

>

> Rasche (aka " Eliana " and " poetryperson " )

> List Owner,

>

Hi ,

My name is Debbie, I'm 55 yrs. old and this long journey began for me in 1966. I

was 12 yrs. old and was visiting my grandmother in Arkansas. My parents were

divorced and I lived in Lubbock, Texas with my mother and 2 sisters. Every

summer my father, who lived in Houston, would pick up my sisters and I and we

would go to Arkansas for the summer. I was getting out of the pool and my Daddy

asked me to come over and let him look at my back. He asked me if I had any pain

in my back and I told him no. That night I heard him call my Mother, tell her he

thought I had something wrong with my back and he wanted her to make me an

appointment for the next week, when we would be going home. I don't remember

being too worried or scared, thinking that if anything was really wrong, that it

would hurt. (how naive we can be at 12)

The next week when we got home, Mom checked out my back and I began to have my

first feelings of fear and apprehension. Mother was more of an alarmist than my

father and of course those feelings of hers were starting to rub off on me. I

seem to remember that my pediatrician had me come in right away. It just so

happened that he had just recently attended a seminar on scoliosis and he made

an appointment for me with a friend of his who was an orthapedic surgeon. The

next several weeks started to seem a little surreal to me. My Mom and sisters

seemed to walk around on eggs shells and I began to realize that I might have

something really serious. Mom shared pretty much everything she knew with me,

the problem being, she didn't really know much and I could tell she was really

scared.

The orthapedic appointment was pretty cut and dry. The normal x-ray, exam and

then the big diagnosis. I did have scoliosis,an S-curve, and he had a friend in

Houston who had just in the last few years began doing a new surgery. He wanted

me to go to Houston to see him, his name was Dr. Harrington. This was the

first time I heard the name that would become almost familiar to me as my own.

It took about 3 months to get my first appointment with Dr. H.. I remember it

was Halloween. My Mom, stepdad and I flew to Houston, where we met my Daddy, who

lived in Houston. I don't remember much about the trip, except the appointment

itself. Years later I remember mentioning to my Dad, what a big man (big in

size) Dr. H. was and my Dad said that was funny, because he really was just a

regular sized man. Wonder what that means? Ha! Anyway, sorry I'm babbling, but

I'm really just saying all that I remember. Hope that's O.K. Back to the appt.,

after all the regular xrays,measurings, etc., we finally all met in Dr.

Harrington's office. He told us about the Milwaukee brace, but felt like I

needed surgery because of how fast my curve had advanced since summer(looking at

the xrays from the Lubbock Drs.). I remember he said I would have 2 rods, a scar

all the way down my back, a body cast that would stay on 6 months, be bed ridden

for 3 months. I'm sure there was alot more to it than that, but that's what I

remember most. He then looked at me and asked what questions I had. I asked if I

would be able to have children and at that point my mom, Dad and step dad all

started to cry and for the first time I got really scared. I was beginning to

realize that this was a pretty serious thing, but of course, never realized that

43 years later my problems would be more than I could ever have fathomed. But

the one thing that Dr H said that I will never forget was that this was MY

desision. He said I was the one that had to go thru all of this and that he

would not operate if I said no. I'm pretty sure now, years later, that after

spending hours with my family and I that he had pretty much sized me up and knew

that I was one of those kids that did everything to please. And he knew that I

would never have said no and gone against him and my parent's advice. But at the

time, I must say, it gave me a tremendouse amount of feeling in charge and a

felling that he and my parents respected me. It was a huge confidence builder.

The months leading up to the surgery seemed very surreal. Changing my room to

accomadate a hospital bed, TV with remote which we didn't have until then,

another bed in my room for my Mom, shopping for things I would need in the

hospital and after we got home. I do remember a feeling of love, pity, and

jealousy from my sisters, especially the one just 15 months younger than me.

This is something that went on to effect our relationship even now.

The trip to Houston for the surgery was one of " anything Debbie wants " . I

remember feeling a little guilty about all the attention. I had never ridden a

train, so we took the train to Houston, shopped, went sight seeing, stayed at

the Warwick(which I was sure, even then,was way out of the family's budget). I

think deep down in side I began to feel like my parents thought I might die.

My memories of the hospital stay and surgery itself are sketchy. I remember that

i got to meet kids that were scheduled for surgery around the same time I was,

but when they had their surgery, I wasn't allowed to see them. They were taken

to the other end of the floor, so that the kids that hadn't had surgery wouldn't

see what a hard time the kids were having that had already had the surgery. That

scared me a little, too. Most of the memories after surgery are of pain, the god

awful pain, the good nurses, the not so good nurses, my Mother screaming at them

to get me something for pain, all of the nurses gathered in my room to listen to

a Cassius Clay fight that my Dad had brought a radio for, the pain, being

embarrassed as a 12 yr. old girl that had no privacy and could do nothing for

herself and then it was time for the cast and to go home. A commercial airline

had arranged to lay me out across the flight attendants seats and the ambulance

driver and paramedics carried me up over the heads of everyone on the plane to

settle me in the back. There was a lot of attention, all of it unwanted my me.

Well I didn't realize that I had already written a book so I'll try to minimize

the rest. My recovery went well. Three months in bed with some t.v. and lots of

reading. I read every Drew book published.

The best way I can describe my state of mind was I felt very lucky to have had

the best Dr. I could have had and I was determined above all else to be just a

" normal " person. I married at 18, had 2 children with no problems at all and for

many years led for the most part a normal life. I had no problems with my back,

no pain. I divorced after 10 yrs of marriage and married again. I had another

child 5 yrs. later at the age of 33 and it was after that that my first real

problems started. I had more and more pain. By this time I had moved to Houston

and on several occasions saw Dr. Dixon and the other associates of Dr.

Harrington(who had passed away by then)for periodic pain. I was always told

everything was o.k. and that I had muscle spasms. Over the next 10 years my pain

and other symtoms started to be worse and worse. I saw doctor after doctor all

of them finding nothing wrong with me. Finally in 2001 I again saw Dr. Dixon for

what I was sure was just another diagnosis of Muscle spasms and when he came in

and said the dreaded word " surgery " I think I must have gone into shock because

I hardly remember anything else he said. One thing I am sure of and that is he

never said flatback, so later when I got over the initial shock of needing

surgery again, I started reading about flatback and realized that that was my

diagnosis.

By the time I saw him in 2001, I had already had to leave my job because of the

paid and loss of stamina. So by the time I knew I needed revision surgery, I had

no health insurance, and still don't to this day. My pain rules my world and I

have no hope of being able to have surgery. I'm only 55 but pretty much feel

like my life is over. I hope I didn't ramble too much. I enjoy this website.

Sincerly,

Debbie

[Guest guest]

Hi, Barbara --

Yes, I would love for you to elaborate. Please do!

Best,

>

> I found our I had scoliosis in November 1961. I had just turned 13 and my

mother asked me to stand straight because she noticed one shoulder was much

higher than the other. I told her I was standing straight.

>

> Off to the ortho doc and I cried the first time I saw an x-ray of my back. It

was so deformed. Doc informed us that I had to have surgery right away because

I had already turned 13 and they wanted to do a fusion before I stopped growing.

He said he might put in something new, a Harrington rod. I screamed " NO RODS " .

Just the thought scared me to death. As it turned out, that was the only

decision I was allowed to make for the next 10 months.

>

> I was sent to the " crippled children's hospital " and in a couple of months

fitted with a Milwaukee brace. The brace was supposed to reduce the curves and

then they would do surgery to fuse the spine.

>

> Over the next 10 months I was not involved in any decisions that were made. I

guess the saving grace was that I was 13 and didn't know any better. In the

hospital there were other girls with scoli so we sort of helped each other out.

There were also kids there with polio and paralyzed from auto accidents. When I

think back, it's amazing how we were there for each other; it's all we had

except for visits from our parents.

>

> I can elaborate on this experience if is interested. It was only

later that I realized what a turning point this was in my life; the emotional

fallout; the social consequences.

>

[Guest guest]

I am like others that have commented on this question. If my adult children

want to put up a tree they to do it themselves. If it was up to me I would

decorate with a couple of pointsetta plants. I also do most of my shopping on

line. It is so much easier than navigating the crowds at the stores.

Katrina! I well remember the traditional Polish Christmas Eve dinner. My aunt

always used to have the family over for this special event. Did you leave an

empty chair for an unexpected guest? I always liked the opwatek (flatbread).

For those who don't know, we would break bread, oldest to youngest and wish each

other good luck for the coming year. I was always the youngest so always went

first.

[Guest guest]

Those old customs are really great. I remember hearing about Swedish families in

which the daughters came into their parents' room on Christmas morning -- hope I

am getting this halfway right -- to bring them breakfast, wearing rings of lit

candles on their heads. I guess you were out of luck if you had only sons. As a

kid I would have liked to wear one of those flaming crowns myself.

I have my own storehouse of family memories and traditions, and it is has been

hard to let some of them go. Most of my family is gone, though, and those who

remain seem anxious to get to the Bahamas or somewhere -- anything to avoid the

holidays entirely. I always thought I would have a big house in the country and

cut down

Christmas trees for my grandkids. And here I am in a city apartment with a bum

back . . .

It helps me to focus on the Buddhist concept of living in this moment, as well

as on the truism that " these are the good old days. "

Despite our limitations, I bet most of us are making good new memories in our

present circumstances which may well warm up our nostalgia in the future.

This is it.

Here we are.

If you save your pennies, you can even (in most places) find some very nice

restaurants open on Christmas Eve.

Internet shopping is also a terrific convenience.

Wishing you all the joy and peace of the season,

>

> I am like others that have commented on this question. If my adult children

want to put up a tree they to do it themselves. If it was up to me I would

decorate with a couple of pointsetta plants. I also do most of my shopping on

line. It is so much easier than navigating the crowds at the stores.

>

> Katrina! I well remember the traditional Polish Christmas Eve dinner. My

aunt always used to have the family over for this special event. Did you leave

an empty chair for an unexpected guest? I always liked the opwatek (flatbread).

For those who don't know, we would break bread, oldest to youngest and wish each

other good luck for the coming year. I was always the youngest so always went

first.

>

[Guest guest]

> >

> > I am like others that have commented on this question. If my adult children

want to put up a tree they to do it themselves. If it was up to me I would

decorate with a couple of pointsetta plants. I also do most of my shopping on

line. It is so much easier than navigating the crowds at the stores.

> >

> > Katrina! I well remember the traditional Polish Christmas Eve dinner. My

aunt always used to have the family over for this special event. Did you leave

an empty chair for an unexpected guest? I always liked the opwatek (flatbread).

For those who don't know, we would break bread, oldest to youngest and wish each

other good luck for the coming year. I was always the youngest so always went

first.

> >

>No I never did that, the tradition was handed down from my mother-in-law, who

never cooked & only insisted on the 12 dishes. I actually had to research to

find out why the 12 because no one could tell me. Its a tradition that I would

love to pass on to my daughter, but oh well. There are more important things.

[Guest guest]

Yes I am afraid of rejection. Unfortunately I have many other health issues that

add to my back issues. I am on disability and I do think who wants me.

Especially after the love of my life (35 years off & on, maybe I should give

up), left me after he lost his job and had to take less pay, his Mom went in a

nursing home and my mother wouldn't buy our home for us. Extenuating

circumstances are that my brother lives in the family home for 25 years plus,

rent free and the house is falling down. My Mom lives in my stepfather's home. I

have real health issues, my brother is an alcoholic and his wife is very capable

to work, but they both choose not to work a minimum wage job, but still going on

2 & 3 week vacations. So my ex was so mad at my mother and I couldn't increase

my salary, so he found a woman making $80,000 a year to support him, until he

found the right job, 2 years later.

SO HE DID REJECT ME, BUT MORE FOR LACK OF INCOME, THAN MY DEFORMITIES.

Thanks for listening.

Lynne Gaither

[Guest guest]

Hola

I can honestly say that I never did worry about that when I was dating,

I think I covered it well with my items of clothing, but Scoliosis made

me a very confident lady and I think men picked up on my confidence

than anything else

Scoliosis has hindered my sex life over the years and sometimes it has

been damn painful so this has been something I have been dealing with

over the years, my brain assumes it is just going to hurt now so I

tense up and the moment is then ruined ......... something I am working

on!

Simone

On 12/4/2010 6:00 AM, wrote:

This question concerns our "love lives" and

romantic interests.

Have you ever worried that someone might reject you because of your

spinal deformity?

Has anyone ever done so, to your knowledge?

[Guest guest]

Interesting question. Gave me lots to think about. I will say No never. My scars were terrible as a teenager and it took some doing to wear a bikini but I did so.

I have been in a long term relationship with an amazingly handsome man for more than 20 years. He is in top physical condition and that makes it possible for him to help get my 5 foot 9 inch self to my feet on bad days etc. HE has never complained that I cannot do this or do that..can't ski ..can't run..can't can't can't you all know what I mean JUST CANNOT.

Becasue I appear to be strong and able people are forever asking me to help carry and move heavy things..they squeeze me too hard and so on..There is just no explaining that I have a back issue..they then start telling me of THEIR own back issues and nothing gets understood as to the serious nature of my spine issues. ..I am the one who rejects my ownself on a daily basis. After all this time I still cannot accept this hand I have been dealt. Thank you for making me stop and have a rational thought!! lol

[Guest guest]

I have been married for 39 years been with him for 40. He knew all about the scoliosis before we even started dating. I have two wonderful grown children and 4 grandchildren under the age of 13. I love life and I do everything. I just retired after 37 years as a administrative secretary. I ride motorcycles(two years ago we toured across the States on our motorcycles. I love buying clothes and have a shoe fascination. On Sat, 12/4/10, <elizabethrgonzalez@...> wrote:

From: <elizabethrgonzalez@...>Subject: QUESTION OF THE WEEK Received: Saturday, December 4, 2010, 5:00 AM

This question concerns our "love lives" and romantic interests.Have you ever worried that someone might reject you because of your spinal deformity?Has anyone ever done so, to your knowledge?