Re: just throwing this out there..

[Guest guest]

HI Everyone -

I walked at 8 months.............and have adult on-set scoliosis apparently from Degenerative Disc Disease. This is first time I have heard about this theory of a connection between early walking & scoliosis.

Sue Z.

From: Izarah Star <izarahstar@...> Sent: Saturday, August 27, 2011 4:03 AMSubject: just throwing this out there..

i was one of those babies who never crawled (which is a huge milestone-or so i am told)- at just under 6 months-i walked-no help-just stood and starting walking... of course everyone was quite impressed with my new found skills....now as a 47 year old flatbacker- i have often wondered if skipping the crawl stage-and walking so young...it might have played a role in my scoliosis.....maybe i am way off the mark.....just thought i would see if anyone else on here was an early walker?

[Guest guest]

I was a late walker at 17 months and late for onset of puberty.  My scoliosis appeared when I was 16 years old and I had surgery when I was 17.  My middle son has a mild curvature that we are monitoring, he walked at 13 months, a very average age to start walking.  Just FYI. Jeanne From: [mailto: ] On Behalf Of Sue ZornSent: Sunday, August 28, 2011 10:12 PM Subject: Re: just throwing this out there.. HI Everyone - I walked at 8 months.............and have adult on-set scoliosis apparently from Degenerative Disc Disease. This is first time I have heard about this theory of a connection between early walking & scoliosis. Sue Z. From: Izarah Star <izarahstar@...> Sent: Saturday, August 27, 2011 4:03 AMSubject: just throwing this out there.. i was one of those babies who never crawled (which is a huge milestone-or so i am told)- at just under 6 months-i walked-no help-just stood and starting walking... of course everyone was quite impressed with my new found skills....now as a 47 year old flatbacker- i have often wondered if skipping the crawl stage-and walking so young...it might have played a role in my scoliosis.....maybe i am way off the mark.....just thought i would see if anyone else on here was an early walker?

[Guest guest]

These posts are very interesting. My son was a very early walker but has

no scoliosis. I'm pretty sure I crawled as much as the average baby,

but -- probably neither here nor there -- I started talking rather late.

My mother said my brother and I both were late to talk, and when we did

finally have something to say, we said it in complete sentences. I have

scoliosis; he doesn't. Since we did start talking, neither of us has

stopped.

Has anyone heard anything about that big study Medtronic was supposed to

be sponsoring, the one that was going to use the huge archives in Salt

Lake City to examine the genetics/genesis of scoliosis?

It amazes me that we still have nary a clue what went wrong. As a group,

we do seem to show up in this or that isolated research study as having

other distinct abnormalities, such as problems with vestibular balance

and a tendency toward (if I'm not mistaken) certain connective tissue

disorders.

For what it's worth, I had a slightly late menarche and a somewhat early

menopause. (Unfortunately my internist misread a lab result and told me

I was definitely NOT going through menopause, so I spent a year thinking

I was losing my mind.)

Here's another far-out speculative question: How old was your mom when

she had you? My mother was 41.

Best,

>

> I was a late walker at 17 months and late for onset of puberty. My

scoliosis appeared when I was 16 years old and I had surgery when I was

17. My middle son has a mild curvature that we are monitoring, he

walked at 13 months, a very average age to start walking. Just FYI.

>

>

>

> Jeanne

>

>

>

> From:

[mailto: ] On Behalf Of Sue Zorn

> Sent: Sunday, August 28, 2011 10:12 PM

>

> Subject: Re: just throwing this out there..

>

>

>

>

>

> HI Everyone -

>

>

>

> I walked at 8 months.............and have adult on-set scoliosis

apparently from Degenerative Disc Disease. This is first time I have

heard about this theory of a connection between early walking &

scoliosis.

>

>

>

> Sue Z.

>

>

>

> From: Izarah Star izarahstar@...

>

> Sent: Saturday, August 27, 2011 4:03 AM

> Subject: just throwing this out there..

>

>

>

>

>

>

>

>

> i was one of those babies who never crawled (which is a huge

milestone-or so i am told)- at just under 6 months-i walked-no help-just

stood and starting walking... of course everyone was quite impressed

with my new found skills....now as a 47 year old flatbacker- i have

often wondered if skipping the crawl stage-and walking so young...it

might have played a role in my scoliosis.....maybe i am way off the

mark.....just thought i would see if anyone else on here was an early

walker?

>

[Guest guest]

My Mom was 25 when I was born.

Sue Z.

From: <elizabethrgonzalez@...> Sent: Thursday, September 1, 2011 6:35 AMSubject: Re: just throwing this out there..

These posts are very interesting. My son was a very early walker but hasno scoliosis. I'm pretty sure I crawled as much as the average baby, but -- probably neither here nor there -- I started talking rather late.My mother said my brother and I both were late to talk, and when we didfinally have something to say, we said it in complete sentences. I havescoliosis; he doesn't. Since we did start talking, neither of us hasstopped.Has anyone heard anything about that big study Medtronic was supposed tobe sponsoring, the one that was going to use the huge archives in SaltLake City to examine the genetics/genesis of scoliosis?It amazes me that we still have nary a clue what went wrong. As a group,we do seem to show up in this or that isolated research study as havingother distinct abnormalities, such as problems with vestibular balanceand a tendency toward (if I'm not mistaken) certain connective

tissuedisorders.For what it's worth, I had a slightly late menarche and a somewhat earlymenopause. (Unfortunately my internist misread a lab result and told meI was definitely NOT going through menopause, so I spent a year thinkingI was losing my mind.)Here's another far-out speculative question: How old was your mom whenshe had you? My mother was 41.Best,>> I was a late walker at 17 months and late for onset of puberty. Myscoliosis appeared when I was 16 years old and I had surgery when I was17. My middle son has a mild curvature that we are monitoring, hewalked at 13 months, a very average age to start walking. Just

FYI.>>>> Jeanne>>>> From: [mailto: ] On Behalf Of Sue Zorn> Sent: Sunday, August 28, 2011 10:12 PM> > Subject: Re: just throwing this out there..>>>>>> HI Everyone ->>>> I walked at 8 months.............and have adult on-set

scoliosisapparently from Degenerative Disc Disease. This is first time I haveheard about this theory of a connection between early walking & scoliosis.>>>> Sue Z.>>>> From: Izarah Star izarahstar@...> > Sent: Saturday, August 27, 2011 4:03 AM> Subject: just throwing this out there..>>>>>>>>> i was one of those babies who never crawled (which is a hugemilestone-or so i am told)- at just under 6 months-i walked-no help-juststood and starting walking... of course everyone was quite impressedwith my new found skills....now as a 47 year old flatbacker- i haveoften wondered if skipping

the crawl stage-and walking so young...itmight have played a role in my scoliosis.....maybe i am way off themark.....just thought i would see if anyone else on here was an earlywalker?>

[Guest guest]

Hi,

My mother was 43 when she had me. None of my older siblings -- or anyone else in my family -- have even a hint of scoliosis.

by the way, I've been lurking for quite some time, partly because I've not yet had revision surgery and haven't had major pain issues, and partly because I usually have a months-long backlog of feisty daily digests to read, but I'm catching up, so I plan from now on to post when I have something to say.

Cheers.

Pat

[Guest guest]

my mom was middle thrties....

Better to remain silent and thought a fool, than to speak up and remove all doubt...

From: Sue Zorn <smzorn@...>Subject: Re: just throwing this out there.." " < >Received: Thursday, September 1, 2011, 11:41 AM

My Mom was 25 when I was born.

Sue Z.

From: <elizabethrgonzalez@...> Sent: Thursday, September 1, 2011 6:35 AMSubject: Re: just throwing this out there..

These posts are very interesting. My son was a very early walker but hasno scoliosis. I'm pretty sure I crawled as much as the average baby, but -- probably neither here nor there -- I started talking rather late.My mother said my brother and I both were late to talk, and when we didfinally have something to say, we said it in complete sentences. I havescoliosis; he doesn't. Since we did start talking, neither of us hasstopped.Has anyone heard anything about that big study Medtronic was supposed tobe sponsoring, the one that was going to use the huge archives in SaltLake City to examine the genetics/genesis of scoliosis?It amazes me that we still have nary a clue what went wrong. As a group,we do seem to show up in this or that isolated research study as havingother distinct abnormalities, such as problems with vestibular balanceand a tendency toward (if I'm not mistaken) certain connective

tissuedisorders.For what it's worth, I had a slightly late menarche and a somewhat earlymenopause. (Unfortunately my internist misread a lab result and told meI was definitely NOT going through menopause, so I spent a year thinkingI was losing my mind.)Here's another far-out speculative question: How old was your mom whenshe had you? My mother was 41.Best,>> I was a late walker at 17 months and late for onset of puberty. Myscoliosis appeared when I was 16 years old and I had surgery when I was17. My middle son has a mild curvature that we are monitoring, hewalked at 13 months, a very average age

to start walking. Just FYI.>>>> Jeanne>>>> From: [mailto: ] On Behalf Of Sue Zorn> Sent: Sunday, August 28, 2011 10:12 PM> > Subject: Re: just throwing this out

there..>>>>>> HI Everyone ->>>> I walked at 8 months.............and have adult on-set scoliosisapparently from Degenerative Disc Disease. This is first time I haveheard about this theory of a connection between early walking & scoliosis.>>>> Sue Z.>>>> From: Izarah Star izarahstar@...> > Sent: Saturday, August 27, 2011 4:03 AM> Subject: just throwing this out there..>>>>>>>>> i was one of those babies who never crawled (which is a hugemilestone-or so i am told)- at just under 6 months-i

walked-no help-juststood and starting walking... of course everyone was quite impressedwith my new found skills....now as a 47 year old flatbacker- i haveoften wondered if skipping the crawl stage-and walking so young...itmight have played a role in my scoliosis.....maybe i am way off themark.....just thought i would see if anyone else on here was an earlywalker?>

[Guest guest]

- I don't really get the corrolation with the early walking BUT...I found your last post interesting. My original scoliosis "S" curve was 81 degrees. I also was somewhat late with menarche (1 month shy of my 16th BD)...and I was COMPLETELY done with menopause by my 45th BD. My menoppause started & ended so quickly that I made them check me for cancer. Thank God it was all clear. Early menopause does not run in my family though. Both of my sister have scoliosis but only very slight curves & are currently going through nightmare menopause(s). Things that make me go hmmmmm. I'll ask R. that works at UCSF if she has heard anything new about the study.................................................Kathy

From: Sue Zorn <smzorn@...>" " < >Sent: Thursday, September 1, 2011 11:41 AMSubject: Re: just throwing this out there..

My Mom was 25 when I was born.

Sue Z.

From: <elizabethrgonzalez@...> Sent: Thursday, September 1, 2011 6:35 AMSubject: Re: just throwing this out there..

These posts are very interesting. My son was a very early walker but hasno scoliosis. I'm pretty sure I crawled as much as the average baby, but -- probably neither here nor there -- I started talking rather late.My mother said my brother and I both were late to talk, and when we didfinally have something to say, we said it in complete sentences. I havescoliosis; he doesn't. Since we did start talking, neither of us hasstopped.Has anyone heard anything about that big study Medtronic was supposed tobe sponsoring, the one that was going to use the huge archives in SaltLake City to examine the genetics/genesis of scoliosis?It amazes me that we still have nary a clue what went wrong. As a group,we do seem to show up in this or that isolated research study as havingother distinct abnormalities, such as problems with vestibular balanceand a tendency toward (if I'm not mistaken) certain connective

tissuedisorders.For what it's worth, I had a slightly late menarche and a somewhat earlymenopause. (Unfortunately my internist misread a lab result and told meI was definitely NOT going through menopause, so I spent a year thinkingI was losing my mind.)Here's another far-out speculative question: How old was your mom whenshe had you? My mother was 41.Best,>> I was a late walker at 17 months and late for onset of puberty. Myscoliosis appeared when I was 16 years old and I had surgery when I was17. My middle son has a mild curvature that we are monitoring, hewalked at 13 months, a very average age to start walking. Just

FYI.>>>> Jeanne>>>> From: [mailto: ] On Behalf Of Sue Zorn> Sent: Sunday, August 28, 2011 10:12 PM> > Subject: Re: just throwing this out there..>>>>>> HI Everyone ->>>> I walked at 8 months.............and have adult on-set

scoliosisapparently from Degenerative Disc Disease. This is first time I haveheard about this theory of a connection between early walking & scoliosis.>>>> Sue Z.>>>> From: Izarah Star izarahstar@...> > Sent: Saturday, August 27, 2011 4:03 AM> Subject: just throwing this out there..>>>>>>>>> i was one of those babies who never crawled (which is a hugemilestone-or so i am told)- at just under 6 months-i walked-no help-juststood and starting walking... of course everyone was quite impressedwith my new found skills....now as a 47 year old flatbacker- i haveoften wondered if skipping

the crawl stage-and walking so young...itmight have played a role in my scoliosis.....maybe i am way off themark.....just thought i would see if anyone else on here was an earlywalker?>

[Guest guest]

I was also a late “bloomer†and was just around 16 when I started getting my period.  However, I am no 52 and STILL going through peri=menopause – been dealing with it for about three years so far. One interesting bit of research I read awhile back stated that adolescents with scoliosis often have low melatonin levels, you know the chemical we produce that puts us to sleep.  I always had trouble sleeping, lots of waking up in the middle of the night and never could sleep in past daylight.  I still have chronic insomnia.  I wonder if anyone else struggled with that issue as an adolescent or adult? Jeanne From: [mailto: ] On Behalf Of KATHY MIXONSent: Thursday, September 01, 2011 11:39 PM Subject: Re: just throwing this out there.. - I don't really get the corrolation with the early walking BUT...I found your last post interesting. My original scoliosis " S " curve was 81 degrees. I also was somewhat late with menarche (1 month shy of my 16th BD)...and I was COMPLETELY done with menopause by my 45th BD. My menoppause started & ended so quickly that I made them check me for cancer. Thank God it was all clear. Early menopause does not run in my family though. Both of my sister have scoliosis but only very slight curves & are currently going through nightmare menopause(s). Things that make me go hmmmmm. I'll ask R. that works at UCSF if she has heard anything new about the study.................................................Kathy From: Sue Zorn <smzorn@...> " " < >Sent: Thursday, September 1, 2011 11:41 AMSubject: Re: just throwing this out there.. My Mom was 25 when I was born. Sue Z. From: <elizabethrgonzalez@...> Sent: Thursday, September 1, 2011 6:35 AMSubject: Re: just throwing this out there.. These posts are very interesting. My son was a very early walker but hasno scoliosis. I'm pretty sure I crawled as much as the average baby, but -- probably neither here nor there -- I started talking rather late.My mother said my brother and I both were late to talk, and when we didfinally have something to say, we said it in complete sentences. I havescoliosis; he doesn't. Since we did start talking, neither of us hasstopped.Has anyone heard anything about that big study Medtronic was supposed tobe sponsoring, the one that was going to use the huge archives in SaltLake City to examine the genetics/genesis of scoliosis?It amazes me that we still have nary a clue what went wrong. As a group,we do seem to show up in this or that isolated research study as havingother distinct abnormalities, such as problems with vestibular balanceand a tendency toward (if I'm not mistaken) certain connective tissuedisorders.For what it's worth, I had a slightly late menarche and a somewhat earlymenopause. (Unfortunately my internist misread a lab result and told meI was definitely NOT going through menopause, so I spent a year thinkingI was losing my mind.)Here's another far-out speculative question: How old was your mom whenshe had you? My mother was 41.Best,>> I was a late walker at 17 months and late for onset of puberty. Myscoliosis appeared when I was 16 years old and I had surgery when I was17. My middle son has a mild curvature that we are monitoring, hewalked at 13 months, a very average age to start walking. Just FYI.>>>> Jeanne>>>> From: [mailto: ] On Behalf Of Sue Zorn> Sent: Sunday, August 28, 2011 10:12 PM> > Subject: Re: just throwing this out there..>>>>>> HI Everyone ->>>> I walked at 8 months.............and have adult on-set scoliosisapparently from Degenerative Disc Disease. This is first time I haveheard about this theory of a connection between early walking & scoliosis.>>>> Sue Z.>>>> From: Izarah Star izarahstar@...> > Sent: Saturday, August 27, 2011 4:03 AM> Subject: just throwing this out there..>>>>>>>>> i was one of those babies who never crawled (which is a hugemilestone-or so i am told)- at just under 6 months-i walked-no help-juststood and starting walking... of course everyone was quite impressedwith my new found skills....now as a 47 year old flatbacker- i haveoften wondered if skipping the crawl stage-and walking so young...itmight have played a role in my scoliosis.....maybe i am way off themark.....just thought i would see if anyone else on here was an earlywalker?>

[Guest guest]

Hi everyone,

I also did not get my first period until I was just shy of 17. I am now 47 and

still having my cycle. On the topic of sleep I have always struggled with sleep

and it just keeps getting worse. I always thought this was from pain but who

knows.

Tricia

Sent from my iPad

[Guest guest]

Well I am the early walker- 6 months....and early period-9 years old.....47 and still having my cycle....as for sleepiing-- never had an issue-can sleep anytime anywhere.....

Better to remain silent and thought a fool, than to speak up and remove all doubt...

From: Tricia Keane <tgordon71906@...>Subject: RE: just throwing this out there.. Received: Friday, September 2, 2011, 6:14 AM

Hi everyone,I also did not get my first period until I was just shy of 17. I am now 47 and still having my cycle. On the topic of sleep I have always struggled with sleep and it just keeps getting worse. I always thought this was from pain but who knows.TriciaSent from my iPad

[Guest guest]

Hi Group, I've been a lurker up until now since I've not had much to add. I

have FB Syndrome and by the time it was diagnosed I was too old for repair

surgery. I'm be 68 in Dec. Had surgery for what was diagnosed as idiopathic

scoliosis (severe S curve) in 1957 at 14 years old (Boston Children Medical

Ctr.). Surgery for Scoliosis was quite experimental at that time. They took a

long length of bone from my left leg (shin area) and grafted to my upper spine.

Was encased me in a Risser Cast with turnbuckle from left arm just above elbow

to right leg just above knee for 6 mos in hosp. bed at home. Then back to hosp.

to have it removed and put in a walking cast. Back to present...now the little

walking I can do is very tipped forward from the waist, can't stand for any

period of time, recently purchased a Pride Go Go scooter which enables me to get

out and about more. I have a breathing issue when I walk/stand as the combo of

my FB Syndrome and large hiatal hernia squeezes my lungs not allowing them to

function as they should. I know...nothing in the above is anything new to any

of you but when I read of sleep issues it made me want to tell you what I

recently learned. In my quest for determining what was causing my breathing

issues, which were diagnosed as mechanical as I just mentioned, my respiratory

specialist asked if I was very fatigued during the day and also inquired about

my sleep patterns. I told him I've been extremely tired/daytime and I wake

often at night...this has gone on for many years. He told me that a very high

percentage of people who have scoliosis have sleep apnea. He sent me for a

sleep study and they found that I had a total of 225 apneas (no air entering the

lungs) during the study. After a second study I was prescribed with a Res Med

VPAP machine for obstructive sleep apnea. My daytime fatigue has been cut back

considerably and now that I'm getting used to the equipment I'm sleeping almost

all through the night. So, this is something that should be investigated

especially for anyone with scoliosis who finds themselves fatigued during the

day and not sleeping well at night. BTW, my Mom was 36 when I was born, I

started menstruating when I was 13 and had a total hysterectomy when I was 46.

Not sure when I started walking.

>

>

> From: Tricia Keane <tgordon71906@...>

> Subject: RE: just throwing this out there..

>

> Received: Friday, September 2, 2011, 6:14 AM

>

>

> Hi everyone,

> I also did not get my first period until I was just shy of 17.  I am now 47

and still having my cycle.  On the topic of sleep I have always struggled with

sleep and it just keeps getting worse.  I always thought this was from pain but

who knows.

>

> Tricia

>

> Sent from my iPad

>

[Guest guest]

>

>

> From: Tricia Keane <tgordon71906@...>

> Subject: RE: just throwing this out there..

>

> Received: Friday, September 2, 2011, 6:14 AM

>

>

> Hi everyone,

You guys posted some rather interesting points I would like to add my two cents

to it... I don't know if I was an early walker or crawler. My mom is deceased.

But she was 38 when she had my sister and I . Yes twins. At the time 38 was

consider ancient. My sister did not develop scoliosis (lucky her) she got her

period at age 11. I waited and waited till age 13. As a matter of fact I got my

period and found out I had scoliosis pretty much at the same time within a month

of each other. I remember the doctors being concerned that I had not began to

menstruate. Well the next month it was all taken care of....

I had the surgery in 1976 for an s shape curve 65 and 45. Up until recently I

have been some what okay. Funny that you mention about menopause. My twin

sister went thru early early menopause at age 30! I have battle POCS but I

still get my period however varied it maybe. I wonder if there is link between

that and scoliosis.

Just adding my two cents in...

Ellen

> I also did not get my first period until I was just shy of 17.  I am now 47

and still having my cycle.  On the topic of sleep I have always struggled with

sleep and it just keeps getting worse.  I always thought this was from pain but

who knows.

>

> Tricia

>

> Sent from my iPad

>

[Guest guest]

Hi - First of all...you are not too old for revision. I don't know if anybody really wants to have surgery...but people in their 60's and 70's are getting revision surgery all the time. I seem to recall an old post that one of the top surgeons specializes in working on people in their 70s...I'll try & find it. The things that hinder it are high blood pressure, diabetes, morbid obesity...but you are not too old. Like I said...nobody wants to have surgery, especially later in life. I hear all the time about doctors telling people they can't be helped. Most of the time, for people like us, it simply isn't true. I think if you got a consult from one of the better known & well experienced surgeons, they might be able to

help you improve your quality of life...whether it be surgery or not. I found out before my surgery in 2007 that I too had a large hiatal hernia. Mine doesn't affect my breathing, but more than once I have almost suffocated from my food backing up in my throat. REALLY SCAREY!! I'm glad to see you posting. I have gotten a great deal of support from being a member. Finding this group helped me find the surgeon who eventually helped me. Take care............................Kathy

From: <dottyrambo@...> Sent: Saturday, September 3, 2011 12:28 PMSubject: Re: just throwing this out there..

Hi Group, I've been a lurker up until now since I've not had much to add. I have FB Syndrome and by the time it was diagnosed I was too old for repair surgery. I'm be 68 in Dec. Had surgery for what was diagnosed as idiopathic scoliosis (severe S curve) in 1957 at 14 years old (Boston Children Medical Ctr.). Surgery for Scoliosis was quite experimental at that time. They took a long length of bone from my left leg (shin area) and grafted to my upper spine. Was encased me in a Risser Cast with turnbuckle from left arm just above elbow to right leg just above knee for 6 mos in hosp. bed at home. Then back to hosp. to have it removed and put in a walking cast. Back to present...now the little walking I can do is very tipped forward from the waist, can't stand for any period of time, recently purchased a Pride Go Go scooter which enables me to get out and about more. I have a breathing issue when I walk/stand as the combo of my FB Syndrome and large

hiatal hernia squeezes my lungs not allowing them to function as they should. I know...nothing in the above is anything new to any of you but when I read of sleep issues it made me want to tell you what I recently learned. In my quest for determining what was causing my breathing issues, which were diagnosed as mechanical as I just mentioned, my respiratory specialist asked if I was very fatigued during the day and also inquired about my sleep patterns. I told him I've been extremely tired/daytime and I wake often at night...this has gone on for many years. He told me that a very high percentage of people who have scoliosis have sleep apnea. He sent me for a sleep study and they found that I had a total of 225 apneas (no air entering the lungs) during the study. After a second study I was prescribed with a Res Med VPAP machine for obstructive sleep apnea. My daytime fatigue has been cut back considerably and now that I'm getting used to the equipment

I'm sleeping almost all through the night. So, this is something that should be investigated especially for anyone with scoliosis who finds themselves fatigued during the day and not sleeping well at night. BTW, my Mom was 36 when I was born, I started menstruating when I was 13 and had a total hysterectomy when I was 46. Not sure when I started walking. > > > From: Tricia Keane <tgordon71906@...>> Subject: RE: just throwing this out there..> > Received: Friday, September 2, 2011, 6:14 AM> > > Hi everyone,> I also did not get my first period until I was just shy of 17. I am now 47 and still having my cycle. On the topic of sleep I have always struggled with sleep and it just keeps getting worse. I always thought this was from pain but who knows.> > Tricia> > Sent from my iPad>

[Guest guest]

@ Kathy...thank you for your reply...I didn't realize my problem was FB syndrome

nor did I realize there was a surgery for it until I was in my late 50's. I

diagnosed myself as having FBS by researching the thick hard muscle bulges on my

back (muscle atrophy) on the Internet. By doing that I happened to run across

FBS due to failed scoliosis surgery. I mentioned this to an ortho doc back

then. He looked at me with a blank expression saying he had never heard of such

a thing (FBS). I should have followed through with another doctor back then but

I didn't, figured it was just one more problem to deal with in having scoliosis.

Just a couple of years ago (at 65 years old) I was told by another ortho doc

that there was a revision surgery being done, successful in many cases, but he

doubted I was a candidate for it because the FBS/scoliosis had already caused a

number of other issues for me such as degenerative disk disease, two knees that

should be replaced and a hip starting to go bad too. Along with that I have

osteopenia...not due to scoliosis or FBS but another issue. This is why I would

recommend anyone who hasn't already suffered these side effects from their

scoliosis/FBS to look into the restorative surgery.

>

> Hi - First of all...you are not too old for revision.  I don't know if

anybody really wants to have surgery...but people in their 60's and 70's are

getting revision surgery all the time.  I seem to recall an old post that one

of the top surgeons specializes in working on people in their 70s...I'll try &

find it.  The things that hinder it are high blood pressure, diabetes, morbid

obesity...but you are not too old.  Like I said...nobody wants to have surgery,

especially later in life.  I hear all the time about doctors telling people

they can't be helped.  Most of the time, for people like us, it simply isn't

true.  I think if you got a consult from one of the better known & well

experienced surgeons, they might be able to help you improve your quality of

life...whether it be surgery or not.   I found out before my surgery in 2007

that I too had a large hiatal hernia.  Mine doesn't affect my breathing, but

more than once I have almost

> suffocated from my food backing up in my throat.  REALLY SCAREY!!  I'm glad

to see you posting.  I have gotten a great deal of support from being a

member.  Finding this group helped me find the surgeon who eventually helped

me.  Take care............................Kathy

[Guest guest]

Hi, Kathy --

That's a good idea. tends to know about everything that's happening

anywhere re scoliosis. (She ran one of the first online groups I joined, before

several of us decided we needed a specific flatback group. Later she also

participated in this group, but I don't think she does anymore. It's nice to

know someone from the old days whom you can still find online somewhere! I've

lost track of so many folks, including the now-famous Mina.)

I think the member who wrote to us about early walking was just trying to find

out if there was any correlation. Many of us with special situations have

checked with others to see if the same thing might apply to them. This reflects

how little we know about what conditions or circumstances relate to the

development of scoliosis. The research money has historically gone chiefly to

spinal surgeons -- NOT to that brave and commmendable handful of investigators

who have spent a lifetime trying to get any clue at all to the cause(s) (and

thus, perhaps, the prevention) of this hugely life-altering spinal deformity.

Similarly, we have no substantial body of longitudinal data on sixty-plus years

of scoliosis treatment for which we, and a few of our mothers, have been

lifelong guinea pigs. The " data, " such as it is, shows up only when a couple

hundred of us start showing up at varioius surgeons' offices with some new

disaster such as flatback syndrome. Once the surgeons compare notes at enough

annual meetings to realiza that this is a general phenomenon, not an isolated

rarity, and once they finally go public with the information -- a process that

can take 10-20 years or longer--they may already be dealing with the next

large=scale iatrogenic calamity resulting from yet another " state-of-the-art "

surgical technique or " new and improved " edition of spinal hardware. Fortunately

the news that Luque rods were also dangerous in terms of encouraging flatback

syndrome came considerably faster than the initial bombshell concerning the

Harrington rod. Sadly, we are only just beginning to consider whether the FDA

should be keeping an eye on various types of spinal hardware (not to mention

other implants, such as certain cardiac valves, which have damaged people).

There is no mandatory let alone uniform system for reporting problems related to

scoliosis surgery. It's important to realize that such a system would not

necessarily help patients, since problems tend to show up only over the long

term, when the damage is already done -- but if some of these reforms were

instituted, at least we might have a substantial body of data to consult for

knowlede of how scoliosis patients in general have fared in life. We don't know

the causes, the possible " cures, " the natural history of treated and untreated

scoliosis -- we basically know nothing. We have a major original deformity,

scoliosis, which has been reported since antiquity, yet it is still a gigantic

mystery to humankind.

I suspect that when we reach out to one another with these occasional anecdotal

queries -- " Did you have early osteoporosis too? " " Have you been diagnosed with

narcolepsy or some other sleep disorder? " " Were you early/late with

such-and-such developmental milestone? " we are probably hoping beyond hope that

we may stumble on a signficant clue somewhere even in the absence of methodical

scientific research.

Best,

-- , KATHY MIXON <kathyinbk@...> wrote:

>

> - I don't really get the corrolation with the early walking BUT...I

found your last post interesting.  My original scoliosis " S " curve was 81

degrees.   I also was somewhat late with menarche (1 month shy of my 16th

BD)...and I was COMPLETELY done with menopause by my 45th BD.  My menoppause

started & ended so quickly that I made them check me for cancer.  Thank God it

was all clear.  Early menopause does not run in my family though.  Both of my

sister have scoliosis but only very slight curves & are currently going through

nightmare menopause(s).  Things that make me go hmmmmm.  I'll ask R.

that works at UCSF if she has heard anything new about the

study.................................................Kathy

>

>

> From: Sue Zorn <smzorn@...>

> " "

< >

> Sent: Thursday, September 1, 2011 11:41 AM

> Subject: Re: just throwing this out there..

>

>

>  

> My Mom was 25 when I was born.

>  

>     Sue Z.

>

>

> From: <elizabethrgonzalez@...>

> >

> >Sent: Thursday, September 1, 2011 6:35 AM

> >Subject: Re: just throwing this out there..

> >

> >

> > 

> >These posts are very interesting. My son was a very early walker but has

> >no scoliosis. I'm pretty sure I crawled as much as the average baby,

> >but -- probably neither here nor there -- I started talking rather late.

> >My mother said my brother and I both were late to talk, and when we did

> >finally have something to say, we said it in complete sentences. I have

> >scoliosis; he doesn't. Since we did start talking, neither of us has

> >stopped.

> >

> >Has anyone heard anything about that big study Medtronic was supposed to

> >be sponsoring, the one that was going to use the huge archives in Salt

> >Lake City to examine the genetics/genesis of scoliosis?

> >

> >It amazes me that we still have nary a clue what went wrong. As a group,

> >we do seem to show up in this or that isolated research study as having

> >other distinct abnormalities, such as problems with vestibular balance

> >and a tendency toward (if I'm not mistaken) certain connective tissue

> >disorders.

> >

> >For what it's worth, I had a slightly late menarche and a somewhat early

> >menopause. (Unfortunately my internist misread a lab result and told me

> >I was definitely NOT going through menopause, so I spent a year thinking

> >I was losing my mind.)

> >

> >Here's another far-out speculative question: How old was your mom when

> >she had you? My mother was 41.

> >

> >Best,

> >

> >

> >>

> >> I was a late walker at 17 months and late for onset of puberty. My

> >scoliosis appeared when I was 16 years old and I had surgery when I was

> >17. My middle son has a mild curvature that we are monitoring, he

> >walked at 13 months, a very average age to start walking. Just FYI.

> >>

> >>

> >>

> >> Jeanne

> >>

> >>

> >>

> >> From:

> >[mailto: ] On Behalf Of Sue Zorn

> >> Sent: Sunday, August 28, 2011 10:12 PM

> >>

> >> Subject: Re: just throwing this out there..

> >>

> >>

> >>

> >>

> >>

> >> HI Everyone -

> >>

> >>

> >>

> >> I walked at 8 months.............and have adult on-set scoliosis

> >apparently from Degenerative Disc Disease. This is first time I have

> >heard about this theory of a connection between early walking &

> >scoliosis.

> >>

> >>

> >>

> >> Sue Z.

> >>

> >>

> >>

> >> From: Izarah Star izarahstar@

> >>

> >> Sent: Saturday, August 27, 2011 4:03 AM

> >> Subject: just throwing this out there..

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> i was one of those babies who never crawled (which is a huge

> >milestone-or so i am told)- at just under 6 months-i walked-no help-just

> >stood and starting walking... of course everyone was quite impressed

> >with my new found skills....now as a 47 year old flatbacker- i have

> >often wondered if skipping the crawl stage-and walking so young...it

> >might have played a role in my scoliosis.....maybe i am way off the

> >mark.....just thought i would see if anyone else on here was an early

> >walker?

> >>

> >

> >

> >

> >

>

[Guest guest]

I'm 67 and having my 3rd revision S1-T2 on Dec 5th at s Hopkins in MD. Who told you you were too old for revision??? My other Ortho operates on patients in their 70's and 80's! If you need surgery get it.....flatback is debilitating and NOT fun!

June - NJ

[Guest guest]

YEAH JUNE!!! Maybe it was your post that I was trying to remember. I know my doc has patients in their 70s...but I also know that there are great surgeons out there that take care of our fellow scoli's in their 80s too. I just hated when some of the docs I saw said that I couldn't be helped...or there was nothing wrong with me...or blah...blah...blah. I just had to find the right surgeon. I sometimes feel like a rookie...only having 5 surgeries. Some of the ladies have had so many more than me. Thanks for chiming in = )........Kathy

From: "june08816@..." <june08816@...> Sent: Monday, September 5, 2011 4:57 PMSubject: Re: just throwing this out there..

I'm 67 and having my 3rd revision S1-T2 on Dec 5th at s Hopkins in MD. Who told you you were too old for revision??? My other Ortho operates on patients in their 70's and 80's! If you need surgery get it.....flatback is debilitating and NOT fun!

June - NJ

[Guest guest]

Hi, June.

You said you are having your third revision surgery at Hopkins. Would you tell me the name of your surgeon? Did he/she also do your 1st and 2nd revision? I live in DC and am interested in knowing if you are happy with your Hopkins surgeon. Thanks.

-- Pat

[Guest guest]

,This is just fascinating! Thank you so much for writing.You have given me the motivation I need to go ahead and schedule that sleep lab study my doctor wanted me to have (well, at least when I can scrape together the copay). I haven't had one for well over ten years. My sleep has gotten so weird and erratic I can't help wondering if the whole thing could be confounded by sleep apnea. I've heard that some kinds of apparatus prescribed for this condition are very cumbersome and annoying to sleep with. How do you feel about that?Through observation and experience, or so I assume, your respiratory specialist has gathered some precious data that no one else seems to have. It seems to me that an association between scoliosis and sleep apnea is very big news that the spinal specialists would do well to know about.Best,> > > > > > From: Tricia Keane tgordon71906@> > Subject: RE: just throwing this out there..> > > > Received: Friday, September 2, 2011, 6:14 AM> > > > > > Hi everyone,> > I also did not get my first period until I was just shy of 17. I am now 47 and still having my cycle. On the topic of sleep I have always struggled with sleep and it just keeps getting worse. I always thought this was from pain but who knows.> > > > Tricia> > > > Sent from my iPad> >>

[Guest guest]

At Northwestern University Medical Center here in Chicago, age is no barrier to spinal surgery. One of the happiest post-op patients I heard about was something like 97. Operating on older patients has become very normal at other hospitals too. The important thing is to have your cardiovascular system in the best shape possible for the ordeal of surgery, including inhalation anesthesia. Many people in their seventies and eighties are in excellent health in that regard, and up-to-date surgeons have no hesitation about fixing their spines.Best,>> YEAH JUNE!!! Maybe it was your post that I was trying to remember. I know my doc has patients in their 70s...but I also know that there are great surgeons out there that take care of our fellow scoli's in their 80s too. I just hated when some of the docs I saw said that I couldn't be helped...or there was nothing wrong with me...or blah...blah...blah. I just had to find the right surgeon. I sometimes feel like a rookie...only having 5 surgeries. Some of the ladies have had so many more than me. Thanks for chiming in = )........Kathy> > > From: "june08816@..." june08816@...> > Sent: Monday, September 5, 2011 4:57 PM> Subject: Re: just throwing this out there..> > >  > I'm 67 and having my 3rd revision S1-T2 on Dec 5th at s Hopkins in MD. Who told you you were too old for revision??? My other Ortho operates on patients in their 70's and 80's! If you need surgery get it.....flatback is debilitating and NOT fun!> June - NJ>

[Guest guest]

Hi , I was very concerned about CPAP (Continuous Positive Airway

Pressure) to treat my sleep apnea because I also heard of the difficulties

become accustomed to it. I won't say it's an easy transition but my doctor

warned me it wouldn't be. It takes a lot of patience and sticktoitiveness but

we with scoliosis have that. ;-) The pressure on my ResMed machine is set at

25 which is as high as some machines go so that makes leakage (of air) more of

an issue for me than it would be if I had a lower pressure, as most do. I have

to wear a full face mask (covers both my nose and mouth). The type for just the

nose (called a pillow) doesn't work on someone whose mouth opens during sleep as

mine does. The first mask I tried was a disaster, made the bridge of my nose

red and sore. Now I have a second one with less around that area and it's a lot

better. I also have a humidifier which helps me from becoming dry due to the

air. There's a lot more to all of this but I don't want to make this too long

for those not interested. Bottom line, it's not painful and is doable and

better than waking up 225 times per night without realizing I was doing it.

I'll be glad to discuss more if you'd like to email me.

As far as the spinal specialists not knowing about sleep apnea/scoliosis often

being related...yes, it amazes me, too. Especially after my resp. specialist

told me he wanted the study done for me due to the relation of the two; I then

came home and Googled *scolioisis sleep apnea* and was amazed to see all the

sites discussing the subject. Yet none of the several ortho, cardio or GP's

I've been to through the years ever suggested a sleep study when I've mentioned

I was constantly fatigued to every one. This teaches us we need to research -

often the I'net is our best friend when we don't have a doc as well informed as

my resp specialist is. I now belong to cpapusers@ & #8203;groups & #8203;.com

which is an excellent source of info about sleep apnea as is this group on FB

syndrome.

> > >

> > >

> > > From: Tricia Keane tgordon71906@

> > > Subject: RE: just throwing this out there..

> > >

> > > Received: Friday, September 2, 2011, 6:14 AM

> > >

> > >

> > > Hi everyone,

> > > I also did not get my first period until I was just shy of 17. I am

> now 47 and still having my cycle. On the topic of sleep I have always

> struggled with sleep and it just keeps getting worse. I always thought

> this was from pain but who knows.

> > >

> > > Tricia

> > >

> > > Sent from my iPad

> > >

> >

>

[Guest guest]

More fascinating info., ! You obviously were very determined to

treat your sleep apnea -- the initial difficulties with the equipment

must have been frustrating, to say the least. I hope you're really

feeling a difference from the CPAP -- less fatigue, etc.

How did you finally get your diagnosis? (Sorry if you already mentioned

this.) I assume you did a sleep lab study. I am wondering if you had any

trouble falling sleep in the lab, as I did the last time around?

A more general question: On the basis of all the research you've done

and what you've learned, do you get the impression that all of us should

be evaluate for sleep apnea?

Best,

> > > >

> > > >

> > > > From: Tricia Keane tgordon71906@

> > > > Subject: RE: just throwing this out there..

> > > >

> > > > Received: Friday, September 2, 2011, 6:14 AM

> > > >

> > > >

> > > > Hi everyone,

> > > > I also did not get my first period until I was just shy of 17.

I am

> > now 47 and still having my cycle. On the topic of sleep I have

always

> > struggled with sleep and it just keeps getting worse. I always

thought

> > this was from pain but who knows.

> > > >

> > > > Tricia

> > > >

> > > > Sent from my iPad

> > > >

> > >

> >

>