my son

[Guest guest]

I am not addressing anyone in particular. This is just a general post to

everyone... kind of a reminder. And I apologize if it sounds terse but I am in

considerable pain at the moment. It's just a friendly reminder and nothing more.

I have been moderating scoliosis newsgroups and mailing lists since the mid

nineties... (Has it been that long...) Parents want to spare their children pain

and suffering at any cost and there are people that offer cures, and

non-surgical methods that will gladly take that money. They promise all sorts of

results without being able to back up any of their claims. So I would highly

recommend that if you are contemplating spending hard earned money on these

things that you do your research very carefully and preferably after talking

with your orthopedic surgeon.

The reason we don't allow the discussion of alternative medicine here on this

group is we have had so much trouble in the past with these guys trying to prey

on innocent and unsuspecting parents or patients that we just banned the entire

subject. We hit it with a pretty broad brush I know but it had to be done that

way. The decision to make this a proven medical group only was taken when this

group was formed and it's been a very calm and peaceful place ever since. Those

of you that remember the good old days will remember what it was like when that

wasn't the case.

I still devote a considerable amount of time behind the scene making sure that

they don't get on here... even though they try and try and try...

So just consider this a friendly reminder... No discussion of alternative

medicine... including chiropractors. I know I let one or two past every once in

a while when I feel it's necessary to the discussion but... well you know.

Moderator

[Guest guest]

Hi ,

It's been a while, since I've written here, but I do follow the

posts. Once again, I thank you for keeping such a close watch on what

gets through. I am one who has been here since the very beginning, so

I do remember when.... I do hope you get your pain under control.

Thank heavens for my pain doc.

Bonnie

On Nov 29, 2009, at 6:45 PM, wrote:

> I am not addressing anyone in particular. This is just a general

> post to everyone... kind of a reminder. And I apologize if it sounds

> terse but I am in considerable pain at the moment. It's just a

> friendly reminder and nothing more.

>

> I have been moderating scoliosis newsgroups and mailing lists since

> the mid nineties... (Has it been that long...) Parents want to spare

> their children pain and suffering at any cost and there are people

> that offer cures, and non-surgical methods that will gladly take

> that money. They promise all sorts of results without being able to

> back up any of their claims. So I would highly recommend that if you

> are contemplating spending hard earned money on these things that

> you do your research very carefully and preferably after talking

> with your orthopedic surgeon.

>

> The reason we don't allow the discussion of alternative medicine

> here on this group is we have had so much trouble in the past with

> these guys trying to prey on innocent and unsuspecting parents or

> patients that we just banned the entire subject. We hit it with a

> pretty broad brush I know but it had to be done that way. The

> decision to make this a proven medical group only was taken when

> this group was formed and it's been a very calm and peaceful place

> ever since. Those of you that remember the good old days will

> remember what it was like when that wasn't the case.

>

> I still devote a considerable amount of time behind the scene making

> sure that they don't get on here... even though they try and try and

> try...

>

> So just consider this a friendly reminder... No discussion of

> alternative medicine... including chiropractors. I know I let one or

> two past every once in a while when I feel it's necessary to the

> discussion but... well you know.

>

>

> Moderator

>

>

>

[Guest guest]

Tragically in medicine, as with any profession, there are the great, the

average, and the down right rotten. I have been very angry and frustrated in

the past by physicians who are too arrogant to admit that they just don't know

the answer to your problem and refuse to refer you to someone who might. I have

had wonderful and caring doctors in the past, so I know how I should be treated

and I get very annoyed by weak and idiotic doctors.

It is a crime when a medical professional does not notice something as obvious

as scoliosis or a punctured lung. That is simply unacceptable and there should

be a way to oust the doctor or nurse that makes such a grievous error. What a

truly sad and tragic story, it makes my heart break for the mother and family of

that boy.

Jeanne

Re: Re: my son

Hahaha! One of the top pediatric orthopedists at a Chicago hospital

completely missed my daughters scoliosis for 8 weeks, while searching for

why she was having knee pain and her gate was funny.

He had reports sent to him by PT's stating leg length difference, muscle

imbalance, etc.

Never once looked at her back or hips.

I'd do better checking with a veterinarian!

Ha!

Best wishes,

Kathe

<><

[Guest guest]

Thanks, . You have a tough job and dodge bullets much of the time as

moderator. Thank you for putting in the time volunteering here.

Let's face it, none of us WANTS surgery. And many of us were on the river

of denial we hear so frequently voiced in posts.

Statistically when any teen's scoliosis has progressed to 45%, surgery is

the only way to stop progression. None of us wants to have that as our

only option, but I've seen curves over 100 by gals that have continued to hope

for an alternative. One of my friends with a 115% curve just died of lung

complications from scolioisis. Carol was only 65. Another neighbor died at

62 from scoli. How in the world did they curves get so big? Add 1 or 2%

progression after teens and it sneaks up. Progression is the key here.

Lung function, heart complications, swallowing complications, sleep apnea,

osteoporosis, and excruciating pain is not what any of us think about when

opting to avoid surgery. I, too, was in denial for 20 years-I speak from

experience.

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

And then there's the Spinecor brace ... a non-rigid dynamic brace that, in some

cases, prevents the need for surgery. I wish it had been available when I was a

teen back in the '70s.

________________________________

From: S. Sogg <RSSSCOLIOSIS@...>

Scoliosis Treatment

Sent: Sat, November 28, 2009 9:34:50 PM

Subject: Re: Re: my son

Very well stated, Jolene!! The methods (instrumentations) used and the

recuperation from Harrington Rod days (pre-1984) vs post-1984 is a walk in the

park compared to what patients with Harrington Rods endured. Six to eight months

on total bed rest while in a body cast vs out of bed within one to two days

walking the halls of the hospital floor with NO body cast, and are out of the

hospital within 5 to 7 days (Adults often wear a TLSO brace for a number of

months. Children / teens generally do not). Although there have been limited

advances since my 1996 surgeries, one major advance is in the area of spinal

cord monitoring. The only " real " complication to speak of that is true today as

during Harrington Rod days is pseudoarthrosis (area of non-fusion), and that

happens in well less than 5% of all cases.

FYI: Even in the area of bracing there have been numerous advances. When I got

my Milwaukee Brace in 1975 that was the brace most widely used to treat

mild/moderate scoliosis in children/teen. During the early 1970's a " new " brace

became available, the TLSO (thoracic-lumbar- sacral orthosis), often known as

the " Boston Brace " ; however, it was not widely used until the late 1970's (it is

now the standard in brace treatment). I got the TLSO in 1978 and wore it during

the day, and the Milwaukee at night until the weaning period started. Since that

time, the ton Bending Brace became available. It is often referred to as

" the nighttime " brace as it is only worn while sleeping.

S.

************ ********* ********* ********* ********* ********* *********

********* ********* ********* ********* ********* ********* ********* *********

********* ********* *

In a message dated 11/28/09 20:29:34 Eastern Standard Time, Buttonjo writes:

Andy,

I know you were trying to be supportive to in her situation with

facing surgery for her son, but I think you do a great disservice to state that

you've been hearing that " even the new rod system can develop problems. "

Where have you 'heard' this? Is this fact? Is there a study stating

this? ANY surgery can have complications no matter where it is on the body, is

that what you were referring to?

A parent facing the most difficult decision doesn't need more fear, just

facts. On this site so many of us old-timers write about problems 30 years

out from our very dated spinal fusion surgeries that parents of teens might

think the Harrington and other techniques use before 15 years ago are

still in effect and will happen to their teen. Not true.

Parents don't realize the progression that will continue after 45% if left

untreated like daily pain, limitations, and lung compromise as we age as

well as health insurance that many of us can't get. If I recall 's

son has a 50+ curve. She can not go forward without facing his surgery with

strength and determination. Using exercise only on his advanced curve is

not dodging the bullet, it is negligence.

Jolene...fusion 1960

Jolene Morell

Shop online at _www.InheritedButto ns.com_

(http://www.inherite dbuttons. com/)

[Guest guest]

Hi ,

Thank you so much for your helpful information.  That was so kind of you.  I

certainly will try those websites you mentioned and also go to the Scoliosis

Research Society's web site.  Hope your doing well.  Thank you again for your

help.

Sincerely,

________________________________

From: S. Sogg <RSSSCOLIOSIS@...>

Scoliosis Treatment

Sent: Wed, November 25, 2009 3:09:05 PM

Subject: Re: my son

 

,

I am a 50 year old male. I wore a Milwaukee Brace (rarely used anymore except

for very high thoracic curves), and a TLSO (widely used since the late 1970's)

while a teenager from 1976 -- 1980. A TLSO is often referred to as a " Boston

Brace " .

I had a spinal fusion surgery at age 26. Spinal fusion surgeries are very

difference since the mid 1980's from surgeries performed in the 1960's, 1970's,

and early 1980's due to the instrumentation used (earlier instrumentation, i.e.

Harrington Rods, are now known to cause problems in adults who had such

surgeries). Hence, adults with scoliosis are very different from children/teens.

Adults often have pain relating to scoliosis. Children/teens rarely do.

Therefore, you (and/or your son) may find a number of other

scoliosis lists of value: MOMSUPPORT, Scoliosis-In- Children, Teenscoliosis, and

scoliosisteens. Go to groups. com, and search for " scoliosis " to find many

other groups.

As far as finding doctors, go to WWW.SRS.ORG. This is the Scoliosis Research

Society's web site. SRS members are orthopedic surgeons who sub specialize in

the treatment of scoliosis. Click on " Find A Specialist " (I just did a " Quick

Search " , and found J. Stasikelis, MD; but, not Frinco, M.D.) . FYI:

Don't take the SRS web site as an end all in finding a surgeon as many very good

spinal orthopedic surgeons are not members; however, it is a GREAT place to

start!!

Hope this helps!!

S.

************ ********* ********* ********* ********* ********* *********

********* ********* ********* ********* ********* ********* ********* *********

********* ***

In a message dated 11/23/09 18:07:37 Eastern Standard Time, susanbscurlock@

writes:

Hi, I'm new to this group. Could you please help me? I'm having to decide

between 2 surgeons. Has anyone heard of Dr. Stasikelis, or Dr. Frino.

My son needs a spinal fusion. Thanks for your help. Sincerely,

[Guest guest]

Thank you for your information about scoliosis.  It is very frightening and

hard to understand why children and adults get this condition.  I had no idea

that leaving this condition untreated would lead to so many problems.  I know

my son has to have surgery.  With the big curve at already 53 degrees, do I

have time for him to grow taller?  The doc told me that boys stop growing at

around 16 years old.  Timmy is almost 13.  I know he'll get taller.  And, I

also know that the curves will get worse as time goes on.  Thank you so much

for your support.  Its great to talk to people who have been through this.

Sincerely,

________________________________

From: L M <mariconda_l@...>

Scoliosis Treatment

Sent: Mon, November 30, 2009 9:16:31 AM

Subject: Re: Re: my son

 

And then there's the Spinecor brace ... a non-rigid dynamic brace that, in some

cases, prevents the need for surgery. I wish it had been available when I was a

teen back in the '70s.

____________ _________ _________ __

From: S. Sogg <RSSSCOLIOSIS@ aol.com>

Scoliosis Treatment

Sent: Sat, November 28, 2009 9:34:50 PM

Subject: Re: Re: my son

Very well stated, Jolene!! The methods (instrumentations) used and the

recuperation from Harrington Rod days (pre-1984) vs post-1984 is a walk in the

park compared to what patients with Harrington Rods endured. Six to eight months

on total bed rest while in a body cast vs out of bed within one to two days

walking the halls of the hospital floor with NO body cast, and are out of the

hospital within 5 to 7 days (Adults often wear a TLSO brace for a number of

months. Children / teens generally do not). Although there have been limited

advances since my 1996 surgeries, one major advance is in the area of spinal

cord monitoring. The only " real " complication to speak of that is true today as

during Harrington Rod days is pseudoarthrosis (area of non-fusion), and that

happens in well less than 5% of all cases.

FYI: Even in the area of bracing there have been numerous advances. When I got

my Milwaukee Brace in 1975 that was the brace most widely used to treat

mild/moderate scoliosis in children/teen. During the early 1970's a " new " brace

became available, the TLSO (thoracic-lumbar- sacral orthosis), often known as

the " Boston Brace " ; however, it was not widely used until the late 1970's (it is

now the standard in brace treatment). I got the TLSO in 1978 and wore it during

the day, and the Milwaukee at night until the weaning period started. Since that

time, the ton Bending Brace became available. It is often referred to as

" the nighttime " brace as it is only worn while sleeping.

S..

************ ********* ********* ********* ********* ********* *********

********* ********* ********* ********* ********* ********* ********* *********

********* ********* *

In a message dated 11/28/09 20:29:34 Eastern Standard Time, Buttonjo writes:

Andy,

I know you were trying to be supportive to in her situation with

facing surgery for her son, but I think you do a great disservice to state that

you've been hearing that " even the new rod system can develop problems. "

Where have you 'heard' this? Is this fact? Is there a study stating

this? ANY surgery can have complications no matter where it is on the body, is

that what you were referring to?

A parent facing the most difficult decision doesn't need more fear, just

facts. On this site so many of us old-timers write about problems 30 years

out from our very dated spinal fusion surgeries that parents of teens might

think the Harrington and other techniques use before 15 years ago are

still in effect and will happen to their teen. Not true.

Parents don't realize the progression that will continue after 45% if left

untreated like daily pain, limitations, and lung compromise as we age as

well as health insurance that many of us can't get.. If I recall 's

son has a 50+ curve. She can not go forward without facing his surgery with

strength and determination. Using exercise only on his advanced curve is

not dodging the bullet, it is negligence.

Jolene...fusion 1960

Jolene Morell

Shop online at _www.InheritedButto ns.com_

(http://www.inherite dbuttons. com/)

[Guest guest]

Thats so scary to think what can happen if surgery isn't performed.  I'm so

sorry about your friends.  Thats so sad.  Did you wait for 20 years to have

surgery?

Sincerely,

________________________________

From: " Buttonjo@... " <Buttonjo@...>

Scoliosis Treatment

Sent: Mon, November 30, 2009 9:41:09 AM

Subject: Re: my son

 

Thanks, . You have a tough job and dodge bullets much of the time as

moderator. Thank you for putting in the time volunteering here.

Let's face it, none of us WANTS surgery. And many of us were on the river

of denial we hear so frequently voiced in posts.

Statistically when any teen's scoliosis has progressed to 45%, surgery is

the only way to stop progression. None of us wants to have that as our

only option, but I've seen curves over 100 by gals that have continued to hope

for an alternative. One of my friends with a 115% curve just died of lung

complications from scolioisis. Carol was only 65. Another neighbor died at

62 from scoli. How in the world did they curves get so big? Add 1 or 2%

progression after teens and it sneaks up. Progression is the key here.

Lung function, heart complications, swallowing complications, sleep apnea,

osteoporosis, and excruciating pain is not what any of us think about when

opting to avoid surgery. I, too, was in denial for 20 years-I speak from

experience.

Jolene Morell

Shop online at _www.InheritedButto ns.com_

(http://www.inherite dbuttons. com/)

[Guest guest]

OK

________________________________

From: Bonnie Stone <bonnie@...>

Scoliosis Treatment

Sent: Sun, November 29, 2009 8:35:16 PM

Subject: Re: Re: my son

Hi ,

It's been a while, since I've written here, but I do follow the

posts. Once again, I thank you for keeping such a close watch on what

gets through. I am one who has been here since the very beginning, so

I do remember when.... I do hope you get your pain under control.

Thank heavens for my pain doc.

Bonnie

On Nov 29, 2009, at 6:45 PM, wrote:

> I am not addressing anyone in particular. This is just a general

> post to everyone... kind of a reminder. And I apologize if it sounds

> terse but I am in considerable pain at the moment. It's just a

> friendly reminder and nothing more.

>

> I have been moderating scoliosis newsgroups and mailing lists since

> the mid nineties... (Has it been that long...) Parents want to spare

> their children pain and suffering at any cost and there are people

> that offer cures, and non-surgical methods that will gladly take

> that money. They promise all sorts of results without being able to

> back up any of their claims. So I would highly recommend that if you

> are contemplating spending hard earned money on these things that

> you do your research very carefully and preferably after talking

> with your orthopedic surgeon.

>

> The reason we don't allow the discussion of alternative medicine

> here on this group is we have had so much trouble in the past with

> these guys trying to prey on innocent and unsuspecting parents or

> patients that we just banned the entire subject. We hit it with a

> pretty broad brush I know but it had to be done that way. The

> decision to make this a proven medical group only was taken when

> this group was formed and it's been a very calm and peaceful place

> ever since. Those of you that remember the good old days will

> remember what it was like when that wasn't the case.

>

> I still devote a considerable amount of time behind the scene making

> sure that they don't get on here... even though they try and try and

> try...

>

> So just consider this a friendly reminder... No discussion of

> alternative medicine... including chiropractors. I know I let one or

> two past every once in a while when I feel it's necessary to the

> discussion but... well you know.

>

>

> Moderator

>

>

>

[Guest guest]

Hi Jolene,

Yes, of course, the intention of my note to was to be supportive. I do

believe it's important to look into all the options currently available

before going ahead with surgery.

I also understand, though, that her son's advanced curve makes it very

probable that she and he will opt for surgery. I myself had had such a curve

and I know all about spinal rotation (my right hip was just about where my

belly button should have been). If there had been good options at the time,

I honestly don't know what I would have done - or what my mother would have

chosen for me - but I think it takes a special kid to do anything other than

pre-surgical bracing and surgery. It's really a shame we all had to go

through such trauma. On the other hand, at least we had the surgery option,

as messed up as it was. There really wasn't anything else back then.

But I do think it's extremely important to know that surgery - even with the

new rod system - isn't easy and recuperation isn't easy and we really don't

know how those with the new rods will fare in 20 years. There is always the

possibility that more surgery - or physical therapy or another type of

treatment - might be necessary. Just like those of us in our fifties were

guinea pigs, so is this and future generations.

It was in this digest, in fact, that others talked about lasting pain from

harvested hip bone. It's my understanding that most surgeons still use this

technique, rather than artificial bone, for fusions (because the artificial

bone has problems of its own). I would have liked to have known about that

before my surgery. It seems to me it would have been better to be given that

information rather than have to hunt it down on the internet.

So yes, surgery seems to be the best way to go for such a severe fusion, but

I think any parent would want to send their child into surgery with full

knowledge of all the possibilities - good and bad.

As for the Schroth Method (exercise), I will leave that discussion alone

since this is not the appropriate place to have it.

Best to all,

Andy

Boulder CO

[Guest guest]

,

I think the " do I have time to let my son grow taller before surgery " is an

excellent question to pose to your surgeon. And 'will he grow taller

after surgery " is another.

I can tell you despite what doctors say about growth spurts many boys

grow until they are 21...just ask moms of sons. I do know that during any

scolotic child's growth spurts the curve progresses quickly and that is one

reason the early teens is an ideal time for stopping the progressive nature

of this condition. As well as the quickness he will bounce back after

surgery and the insurance coverage that he has now. BTW, I think you

mentioned

Shriners...they and their hosptial do not charge, yet those surgeons have

private practice but volunteer their time. They are cutting edge

technologists as well and will continue follow up until that patient is 21.

This

surgery costs easily over $200 k and some hmo's may cap coverage totals so

be sure to look into that if you go private.

Purchase Brook Lyons " Scoliosis Ascending the Curve " for a good overview

of scoliosis. It may be out of print so try getting it used or through one

of the National Scoliosis societies. It is written by a young girl who has

scoliosis.

Stay strong. You are doing a great job as parent facing the reality of

the situation.

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

I had surgery before metal was used for scoliosis in 1960. It was iliac

crest (hip bone) only and it fused well. But I had an S curve and nothing

was done for the bottom curve. I was told I was cured. Over the years my

spine continued to curve above the short fusion (about 5 vertebras fused) and

below the fusion. When I was 38 I started having muscle spasm that sent

me to ER. I was told I needed more surgery fusion and I said, " Been there,

done that " and thought the doctors were wrong.

20 years of denial later I became bed ridden by excruciating hip pain that

proved to be my spine referring pain to my hip. After 6 weeks in bed I

realized I couldn't deny it any longer and sought out the best revision

specialist in the central valley of California where I live. I checked out UC

, UCSF and Kaiser. The best for me was the head spinal surgery of No

Calif Kaiser so we switched insurance at the end of the year. I was on his

waiting list for 2 years. By the time I got into the surgery room I was

59. It was discovered once in I had osteoporosis so badly that he could not

make the screws attached. After doing a small start from the anterior and

one from the posterior he closed me hoping to continue in 24 months after

being on Fosamax. In the mean time he has left Kaiser and I don't want to

switch back to his HMO that has no other good specialists. That has been 4

years ago. I have found my next surgeon in Oakland and he is capable of

taking on all my problems (many have surfaced since then). In 2010 I will

try again.

Long story short....I had the best surgery my surgeon in 1960 could do at

the time. He said I was 'cured'. That and denial pushed back what I

needed to do for 20 years. I wish I hadn't waited so long.

Yes, full body scans were done, but those scans are based on normal

spines. When the laser hits a curved of fused spine it bounces around before

exiting and does not give an accurate reading. Wrists/ankle scans alone

still show I'm healthy. My surgeon has found this in some women in their 40's

with scoliosis....bones of butter. I wasn't that much of a soda drinker, a

non smoker, not inherited, active and thin so scoliosis is the only

culprit of my osteoporosis. Fear and denial kept me from doing what I should

have done so I try to be helpful to those here that have the same traits.

No surgery is guaranteed. Yes, there might be non fusion (rods break).

Sometimes it is the patients doing (risky sports, smoking, doing things too

early post op) and sometimes there is no reason the bone hasn't fused so

there is pain and rods break. Spinal surgery is a complete restructuring of

the spine and it is complicated and delicate. It is not like any other

surgery and can't be compared to taking out a bad disk or an appendix. Others

may not understand that but we need to.

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

Thank you for your helpful information Andy.  I still have a lot to learn.  I

sure didn't know that all this could be so complicated. Glad your doing better

now. Thank you for the surgeons name.  Was your recovery really painful? 

Thanks again for your help.

________________________________

From: " andrastanton@... " <andrastanton@...>

Scoliosis Treatment

Sent: Thu, November 26, 2009 3:31:52 PM

Subject: Re: my son

 

>Hello ,

It's SO important to go to an experienced scoliosis surgeon. If you live in

North Carolina, the doctor you should contact is Lloyd Hey – www.lloydhey. com

or 919-790-1717. He is on 3404 Wake Forest Road, #203, Raleigh 27609.

On the other hand, your son would certainly benefit from an intensive exercise

program, called Schroth (www.scoliosisrehab .com), but he has to be EXTREMELY

motivated and committed to doing the exercises daily and forever. Ideally, it's

best to avoid surgery, but with such a severe curve, it's understandable if he

chooses the surgery. Just be aware that surgery may result in complications

later in his life.

I had my first surgery, for a 56 degree lumbar curve in the 1970s when I was 18.

As you may know, the technology used back then (Harrington rods) caused a

problem called Flatback Syndrome, and everyone who had that surgery (between the

late 1960s and late 1990s) requires revision surgery. I had 20 good years

post-surgery, but then the fusion began breaking down and I developed Flatback.

I got to the point where I was in so much pain I couldn't function (and had to

quit my job). I had my revision in 2003 in NY by Dr. Boachie. I'm much better

now though limited in my activities….The newer rod system is an improvement

and so your son, if he does undergo a fusion, will hopefully NOT have the

problems I had. But I've been hearing that even the new rod system can develop

problems.

I hope this has been helpful. I wish you and your family the best of luck.

Andy Stanton

Boulder CO

[Guest guest]

Dear Andy,

Actually I think we are not that far apart on our views on this subject.

I think the books on scoliosis are an important place for parents or adults

with scoliosis to start their education. If the scoliosis is progressive

any " cure " outside of surgery is a waste of time, hope, and money. More

dangerously is the damage to the lungs as the curve progresses while these

" cures " are used.

I asked about the BMP (fake bone protein) and was informed 4 years ago that

my surgeon would use it if needed, but my osteoporosis was too extensive

to rely on it. Most surgeons do use the rib removed from anterior fusion

for the bone needed and sometimes the hip, too. My hip area didn't actually

start hurting until 35 years after fusion...go figure. Four years ago when

I was getting revision for too short 1960 original fusion I chose a

surgeon that agreed I could not afford to lose a rib because of my lung

compromise. My fusion completion next year will be with bone cement and the

surgeon

has pioneered his technique using it for spinal fusion with excellent

results.

As adults with fusion we have different problems than teens needing

surgery. The anterior/posterior they receive has proven to have less non

fusion

areas in reports I've seen. Certainly no surgery is guaranteed, but that

is not a reason to delay for too long once the best scoliosis surgeon has

been found.

I am glad I had the original 1960 spinal fusion. It gave me 25 years of

quality I would not have had without it. It was the best my surgeon knew

how to perform at the time. With researching and getting 2 or 3 opinions

from the best scoliosis surgeons a parent finds they can trust this tough

decision with more confidence. Fear is something parents have to control

because the big picture is if surgery is warranted the child's future is more

stable with it.

Jolene Morell

Shop online at _www.InheritedButtons.com_

(http://www.inheritedbuttons.com/)

[Guest guest]

There are 'growing' rods that you may want to ask your son's surgeon about.

Stapling may be another option, Dr. Betz at Shriners in Philadelphia, is a

leading surgeon for this technique.

Re: Re: my son

Very well stated, Jolene!! The methods (instrumentations) used and the

recuperation from Harrington Rod days (pre-1984) vs post-1984 is a walk in the

park compared to what patients with Harrington Rods endured. Six to eight months

on total bed rest while in a body cast vs out of bed within one to two days

walking the halls of the hospital floor with NO body cast, and are out of the

hospital within 5 to 7 days (Adults often wear a TLSO brace for a number of

months. Children / teens generally do not). Although there have been limited

advances since my 1996 surgeries, one major advance is in the area of spinal

cord monitoring. The only " real " complication to speak of that is true today as

during Harrington Rod days is pseudoarthrosis (area of non-fusion), and that

happens in well less than 5% of all cases.

FYI: Even in the area of bracing there have been numerous advances. When I got

my Milwaukee Brace in 1975 that was the brace most widely used to treat

mild/moderate scoliosis in children/teen. During the early 1970's a " new " brace

became available, the TLSO (thoracic-lumbar- sacral orthosis), often known as

the " Boston Brace " ; however, it was not widely used until the late 1970's (it is

now the standard in brace treatment). I got the TLSO in 1978 and wore it during

the day, and the Milwaukee at night until the weaning period started. Since that

time, the ton Bending Brace became available. It is often referred to as

" the nighttime " brace as it is only worn while sleeping.

S..

************ ********* ********* ********* ********* ********* *********

********* ********* ********* ********* ********* ********* ********* *********

********* ********* *

In a message dated 11/28/09 20:29:34 Eastern Standard Time, Buttonjo writes:

Andy,

I know you were trying to be supportive to in her situation with

facing surgery for her son, but I think you do a great disservice to state that

you've been hearing that " even the new rod system can develop problems. "

Where have you 'heard' this? Is this fact? Is there a study stating

this? ANY surgery can have complications no matter where it is on the body, is

that what you were referring to?

A parent facing the most difficult decision doesn't need more fear, just

facts. On this site so many of us old-timers write about problems 30 years

out from our very dated spinal fusion surgeries that parents of teens might

think the Harrington and other techniques use before 15 years ago are

still in effect and will happen to their teen. Not true.

Parents don't realize the progression that will continue after 45% if left

untreated like daily pain, limitations, and lung compromise as we age as

well as health insurance that many of us can't get.. If I recall 's

son has a 50+ curve. She can not go forward without facing his surgery with

strength and determination. Using exercise only on his advanced curve is

not dodging the bullet, it is negligence.

Jolene...fusion 1960

Jolene Morell

Shop online at _www.InheritedButto ns.com_

(http://www.inherite dbuttons. com/)

[Guest guest]

I'm so sorry for all that you've had to endure.  I can't imagine all the  pain

that you have suffered.  Hope you are doing better now.  Please let me know. 

I'm sorry again for your pain.

________________________________

From: Randie Meyer <taknitlite@...>

Scoliosis Treatment

Sent: Sun, November 29, 2009 2:22:04 AM

Subject: Re: Re: my son

 

The new rods can and do most certainly develop all kinds of problems.. I'm not

saying this to scare you, but it is a very iffy procedure. I've just finished my

5th surgery which was a partial hardware removal. I had an iliac screw placed in

my joint. For a year and a half I felt like dying, the pain was so extreme. And

I've had lots of pain over the years. I finally had it removed once the discs

that had been re-fused were prenounced fused. Now I'm praying that I haven't

been so damaged that the area won't heal. It's been 8 weeks and I'm still in a

significant amount of pain. Better than when the screw was there, but still not

good.

I had my whole spine fused in 2005. T4-L4 (I'd already been fused L4-L5 the

previous year. My surgeon was very conservative and did as little as possible. I

was doing great. I felt better than I had in years. Then, my rods broke. As it

turned out, I didn't fuse in the L2-L4 area. My ribcage started moving to the

left and the pain was getting bad. I went in for a revision, this time with a

different but highly recommended surgeon, as I'd moved across country. I had to

travel, but not too far. This surgeon ended up doing a 2-part surgery, first

through my front to fuse the remaining disc, S1, because he said it wasn't

looking good, and in through my side to fuse my through the front. 5 days later

he went in through my back. I was in the hospital 10 days and rehab for awhile.

I lost a great deal of weight, which, at 5'11 and only 130 lbs, I couldn't

afford. I dropped to 120. It took a year to gain back 10 lbs. I became extremely

depressed and was in pain

all the time. And there was nothing that could be done until the fusion had

completed. I wish so much that I hadn't let him fuse me to my sacrum, but once

it's done there's no turning back.

I can't know why I didn't fuse-which was why my rods broke. Maybe I did too much

too soon, maybe I didn't eat right or I drank too much wine, too much

stress--I'll never know. But the surgeon's all tell you before they go in, there

are no guarantees. They say " you might feel better, you might feel worse, there

may be no change " . I was warned not to do it unless my quality of life was so

diminished that I felt this was my only option. After 13 years of constant pain

I'd reached that point. I wish more than anything I hadn't had to do it. My body

doesn't move fluidly. I can't reach down to pick things up. My life is forever

changed and I never know if something will happen and I'll be back under the

knife again. Each time I say I can't stand to go through it again, but I do. I

feel like I have no choice, now that I started. This is not to be taken lightly.

And there are most certainly problems that can occur with the rods, the screws

(they found a loose

screw in my thoracic when I had the CT scan before the surgery). Plus I had the

connector removed because it hurt me. So for the 5th time in 5 years I'm

recovering. I'm not the same person I was before all this started.

____________ _________ _________ __

From: S. Sogg <RSSSCOLIOSIS@ aol.com>

Scoliosis Treatment

Sent: Thu, November 26, 2009 3:12:26 PM

Subject: Re: Re: my son

 

Andy,

I have to correct something you said. Harrington Rods have not been used since

the late 1980's/early 1990's. NOT the late 1990's. I had my surgeries in 1996.

My instrumentation is Acromed. A generic version of TSRH Instrumentation. Hence,

the newer methods had been used long enough that generic version were then

available.

S.

************ ********* ********* ********* ********* ********* *********

********* ********* ********* ********* ********* ********* ********* *********

********* *

In a message dated 11/26/09 16:49:41 Eastern Standard Time, andrastanton@

rocketmail. com writes:

>Hello ,

It's SO important to go to an experienced scoliosis surgeon. If you live in

North Carolina, the doctor you should contact is Lloyd Hey www.lloydhey. com or

919-790-1717. He is on 3404 Wake Forest Road, #203, Raleigh 27609.

On the other hand, your son would certainly benefit from an intensive exercise

program, called Schroth (www.scoliosisrehab .com), but he has to be EXTREMELY

motivated and committed to doing the exercises daily and forever. Ideally, it's

best to avoid surgery, but with such a severe curve, it's understandable if he

chooses the surgery. Just be aware that surgery may result in complications

later in his life.

I had my first surgery, for a 56 degree lumbar curve in the 1970s when I was 18.

As you may know, the technology used back then (Harrington rods) caused a

problem called Flatback Syndrome, and everyone who had that surgery (between the

late 1960s and late 1990s) requires revision surgery. I had 20 good years

post-surgery, but then the fusion began breaking down and I developed Flatback.

I got to the point where I was in so much pain I couldn't function (and had to

quit my job). I had my revision in 2003 in NY by Dr. Boachie. I'm much better

now though limited in my activitiesÂ….The newer rod system is an improvement and

so your son, if he does undergo a fusion, will hopefully NOT have the problems I

had. But I've been hearing that even the new rod system can develop problems.

I hope this has been helpful. I wish you and your family the best of luck.

Andy Stanton

Boulder CO

[Guest guest]

Thank you. Physically I'm not doing better. But I keep thinking that this pain

is a teaching experience. Last night I had an epiphony and started changing my

way of looking at the whole " ordeal " . I may never be rid of this pain. But I

believe I can find a way of being happy and at peace. I haven't found that yet,

but I think that may be my challenge. I know others on this website have amazing

outlooks, and they have worse pain that I. So that's my New Year's resolution.

To find the light rather than fighting against what I seem to have no control

over. I've been so miserable. And I want peace. So that's what I'll pray for.

Peace.

________________________________

From: Scurlock <susanbscurlock@...>

Scoliosis Treatment

Sent: Wed, December 30, 2009 2:44:52 PM

Subject: Re: Re: my son

 

I'm so sorry for all that you've had to endure.  I can't imagine all the  pain

that you have suffered.  Hope you are doing better now.  Please let me know. 

I'm sorry again for your pain.

____________ _________ _________ __

From: Randie Meyer <taknitlite (DOT) com>

Scoliosis Treatment

Sent: Sun, November 29, 2009 2:22:04 AM

Subject: Re: Re: my son

 

The new rods can and do most certainly develop all kinds of problems.. I'm not

saying this to scare you, but it is a very iffy procedure. I've just finished my

5th surgery which was a partial hardware removal. I had an iliac screw placed in

my joint. For a year and a half I felt like dying, the pain was so extreme. And

I've had lots of pain over the years. I finally had it removed once the discs

that had been re-fused were prenounced fused. Now I'm praying that I haven't

been so damaged that the area won't heal. It's been 8 weeks and I'm still in a

significant amount of pain. Better than when the screw was there, but still not

good.

I had my whole spine fused in 2005. T4-L4 (I'd already been fused L4-L5 the

previous year. My surgeon was very conservative and did as little as possible. I

was doing great. I felt better than I had in years. Then, my rods broke. As it

turned out, I didn't fuse in the L2-L4 area. My ribcage started moving to the

left and the pain was getting bad. I went in for a revision, this time with a

different but highly recommended surgeon, as I'd moved across country. I had to

travel, but not too far. This surgeon ended up doing a 2-part surgery, first

through my front to fuse the remaining disc, S1, because he said it wasn't

looking good, and in through my side to fuse my through the front. 5 days later

he went in through my back. I was in the hospital 10 days and rehab for awhile.

I lost a great deal of weight, which, at 5'11 and only 130 lbs, I couldn't

afford. I dropped to 120. It took a year to gain back 10 lbs. I became extremely

depressed and was in pain

all the time. And there was nothing that could be done until the fusion had

completed. I wish so much that I hadn't let him fuse me to my sacrum, but once

it's done there's no turning back.

I can't know why I didn't fuse-which was why my rods broke. Maybe I did too much

too soon, maybe I didn't eat right or I drank too much wine, too much

stress--I'll never know. But the surgeon's all tell you before they go in, there

are no guarantees. They say " you might feel better, you might feel worse, there

may be no change " . I was warned not to do it unless my quality of life was so

diminished that I felt this was my only option. After 13 years of constant pain

I'd reached that point. I wish more than anything I hadn't had to do it. My body

doesn't move fluidly. I can't reach down to pick things up. My life is forever

changed and I never know if something will happen and I'll be back under the

knife again. Each time I say I can't stand to go through it again, but I do. I

feel like I have no choice, now that I started. This is not to be taken lightly.

And there are most certainly problems that can occur with the rods, the screws

(they found a loose

screw in my thoracic when I had the CT scan before the surgery). Plus I had the

connector removed because it hurt me. So for the 5th time in 5 years I'm

recovering. I'm not the same person I was before all this started.

____________ _________ _________ __

From: S. Sogg <RSSSCOLIOSIS@ aol.com>

Scoliosis Treatment

Sent: Thu, November 26, 2009 3:12:26 PM

Subject: Re: Re: my son

 

Andy,

I have to correct something you said. Harrington Rods have not been used since

the late 1980's/early 1990's. NOT the late 1990's. I had my surgeries in 1996.

My instrumentation is Acromed. A generic version of TSRH Instrumentation. Hence,

the newer methods had been used long enough that generic version were then

available.

S.

************ ********* ********* ********* ********* ********* *********

********* ********* ********* ********* ********* ********* ********* *********

********* *

In a message dated 11/26/09 16:49:41 Eastern Standard Time, andrastanton@

rocketmail. com writes:

>Hello ,

It's SO important to go to an experienced scoliosis surgeon. If you live in

North Carolina, the doctor you should contact is Lloyd Hey www.lloydhey. com or

919-790-1717. He is on 3404 Wake Forest Road, #203, Raleigh 27609.

On the other hand, your son would certainly benefit from an intensive exercise

program, called Schroth (www.scoliosisrehab .com), but he has to be EXTREMELY

motivated and committed to doing the exercises daily and forever. Ideally, it's

best to avoid surgery, but with such a severe curve, it's understandable if he

chooses the surgery. Just be aware that surgery may result in complications

later in his life.

I had my first surgery, for a 56 degree lumbar curve in the 1970s when I was 18.

As you may know, the technology used back then (Harrington rods) caused a

problem called Flatback Syndrome, and everyone who had that surgery (between the

late 1960s and late 1990s) requires revision surgery. I had 20 good years

post-surgery, but then the fusion began breaking down and I developed Flatback.

I got to the point where I was in so much pain I couldn't function (and had to

quit my job). I had my revision in 2003 in NY by Dr. Boachie. I'm much better

now though limited in my activitiesÂ….The newer rod system is an improvement and

so your son, if he does undergo a fusion, will hopefully NOT have the problems I

had. But I've been hearing that even the new rod system can develop problems.

I hope this has been helpful. I wish you and your family the best of luck.

Andy Stanton

Boulder CO

[Guest guest]

It took me a long time to get to that point. I like your phrasing too, about it

being your challenge. That's the way I try to view it too. A challenge is

something to be faced, and stood up to. I don't win every day, sometimes the

challenge gets the best of me, but I try not to focus on it and it seems to

loosen it's hold on me. If I focus too long on the things I can't do, I get

angry and depressed.

This probably sounds crazy but I will share something that helped me. In

addition the pain that I have, I went through a period of time where I was

severely depressed. I couldn't play sports any more. I couldn't go shopping with

my friends like I used to, didn't have the stamina and instead of admitting what

I saw as a weakness in myself, I withdrew which only made the situation worse.

My thinking was since I couldn't do those things that I wanted that something

was wrong with me. I had to change the way of my thinking and accept the fact

that I have pain issues, just like I have big feet. I started to imagine my pain

as something outside of the " core " of me so that even when it affected me, it

wasn't a deficiency with me. I started a pain journal and referred to the pain

in the third party to separate my feelings about the pain and about myself as a

person. It helped. crazy as it sounds. Not over night, but it did help. I try to

be careful in my terminology too, because it effects the way I feel. Instead of

" I can't do that today " . I try to say " My pain level is up today so I can''t go

shopping " or whatever it is. Because I was feeling useless and beaten having to

admit all the time that I couldn't do something. It didn't change the fact that

sometimes I still couldn't do something, but to me it wasn't feeling like I was

constantly admitting my weakness. It does sound a little weird, but it helped

me.

Re: Re: my son

Andy,

I have to correct something you said. Harrington Rods have not been used since

the late 1980's/early 1990's. NOT the late 1990's. I had my surgeries in 1996.

My instrumentation is Acromed. A generic version of TSRH Instrumentation. Hence,

the newer methods had been used long enough that generic version were then

available.

S.

************ ********* ********* ********* ********* ********* *********

********* ********* ********* ********* ********* ********* ********* *********

********* *

In a message dated 11/26/09 16:49:41 Eastern Standard Time, andrastanton@

rocketmail. com writes:

>Hello ,

It's SO important to go to an experienced scoliosis surgeon. If you live in

North Carolina, the doctor you should contact is Lloyd Hey www.lloydhey. com or

919-790-1717. He is on 3404 Wake Forest Road, #203, Raleigh 27609.

On the other hand, your son would certainly benefit from an intensive exercise

program, called Schroth (www.scoliosisrehab .com), but he has to be EXTREMELY

motivated and committed to doing the exercises daily and forever. Ideally, it's

best to avoid surgery, but with such a severe curve, it's understandable if he

chooses the surgery. Just be aware that surgery may result in complications

later in his life.

I had my first surgery, for a 56 degree lumbar curve in the 1970s when I was 18.

As you may know, the technology used back then (Harrington rods) caused a

problem called Flatback Syndrome, and everyone who had that surgery (between the

late 1960s and late 1990s) requires revision surgery. I had 20 good years

post-surgery, but then the fusion began breaking down and I developed Flatback.

I got to the point where I was in so much pain I couldn't function (and had to

quit my job). I had my revision in 2003 in NY by Dr. Boachie. I'm much better

now though limited in my activitiesÂ….The newer rod system is an improvement and

so your son, if he does undergo a fusion, will hopefully NOT have the problems I

had. But I've been hearing that even the new rod system can develop problems.

I hope this has been helpful. I wish you and your family the best of luck.

Andy Stanton

Boulder CO

[Guest guest]

Has anyone heard of a syrinx.  My son Timmy, who just turned 13, had it

diagnosed through  a mri. I think its a fluid filled pocket on his spinal

cord.  Its making his toes go numb.  Please help me with this.  I'm sure it

will complicate his scoliosis.

________________________________

From: Andy Stanton <andystanton@...>

Scoliosis Treatment

Sent: Tue, December 1, 2009 11:41:14 AM

Subject: Re: my son

 

Hi Jolene,

Yes, of course, the intention of my note to was to be supportive. I do

believe it's important to look into all the options currently available

before going ahead with surgery.

I also understand, though, that her son's advanced curve makes it very

probable that she and he will opt for surgery. I myself had had such a curve

and I know all about spinal rotation (my right hip was just about where my

belly button should have been). If there had been good options at the time,

I honestly don't know what I would have done - or what my mother would have

chosen for me - but I think it takes a special kid to do anything other than

pre-surgical bracing and surgery. It's really a shame we all had to go

through such trauma. On the other hand, at least we had the surgery option,

as messed up as it was. There really wasn't anything else back then.

But I do think it's extremely important to know that surgery - even with the

new rod system - isn't easy and recuperation isn't easy and we really don't

know how those with the new rods will fare in 20 years. There is always the

possibility that more surgery - or physical therapy or another type of

treatment - might be necessary. Just like those of us in our fifties were

guinea pigs, so is this and future generations.

It was in this digest, in fact, that others talked about lasting pain from

harvested hip bone. It's my understanding that most surgeons still use this

technique, rather than artificial bone, for fusions (because the artificial

bone has problems of its own). I would have liked to have known about that

before my surgery. It seems to me it would have been better to be given that

information rather than have to hunt it down on the internet.

So yes, surgery seems to be the best way to go for such a severe fusion, but

I think any parent would want to send their child into surgery with full

knowledge of all the possibilities - good and bad.

As for the Schroth Method (exercise), I will leave that discussion alone

since this is not the appropriate place to have it.

Best to all,

Andy

Boulder CO

[Guest guest]

,

I have never heard of a syrinx, but I have had a synovial cyst that was pressing

on my spine earlier last year. I searched the web and finally found an

interventional radiologist that was able to rupture it and it improved my pain

significantly. I'm not suggesting that this is how they would treat a syrinx,

but you might find some information by surfing the web and reading the research

papers written by different doctors. It seems that interventional radiology is

becoming a new area where some spinal issues can be treated with minimally

invasive procedures.

I hope you find an answer soon,

Jeanne

Re: my son

Hi Jolene,

Yes, of course, the intention of my note to was to be supportive. I do

believe it's important to look into all the options currently available

before going ahead with surgery.

I also understand, though, that her son's advanced curve makes it very

probable that she and he will opt for surgery. I myself had had such a curve

and I know all about spinal rotation (my right hip was just about where my

belly button should have been). If there had been good options at the time,

I honestly don't know what I would have done - or what my mother would have

chosen for me - but I think it takes a special kid to do anything other than

pre-surgical bracing and surgery. It's really a shame we all had to go

through such trauma. On the other hand, at least we had the surgery option,

as messed up as it was. There really wasn't anything else back then.

But I do think it's extremely important to know that surgery - even with the

new rod system - isn't easy and recuperation isn't easy and we really don't

know how those with the new rods will fare in 20 years. There is always the

possibility that more surgery - or physical therapy or another type of

treatment - might be necessary. Just like those of us in our fifties were

guinea pigs, so is this and future generations.

It was in this digest, in fact, that others talked about lasting pain from

harvested hip bone. It's my understanding that most surgeons still use this

technique, rather than artificial bone, for fusions (because the artificial

bone has problems of its own). I would have liked to have known about that

before my surgery. It seems to me it would have been better to be given that

information rather than have to hunt it down on the internet.

So yes, surgery seems to be the best way to go for such a severe fusion, but

I think any parent would want to send their child into surgery with full

knowledge of all the possibilities - good and bad.

As for the Schroth Method (exercise), I will leave that discussion alone

since this is not the appropriate place to have it.

Best to all,

Andy

Boulder CO

[Guest guest]

,

I may be wrong; but, I think a syrinx is an indentation of congenital scoliosis

vs idiopathic scoliosis. I don't know what a syrinx is exactly; but, I think

I've heard of it in the past. You may want to inquire about it though.

S.

********************************************************************************\

********************************************************************************\

***************************************************

Re: my son

Hi Jolene,

Yes, of course, the intention of my note to was to be supportive. I do

believe it's important to look into all the options currently available

before going ahead with surgery.

I also understand, though, that her son's advanced curve makes it very

probable that she and he will opt for surgery. I myself had had such a curve

and I know all about spinal rotation (my right hip was just about where my

belly button should have been). If there had been good options at the time,

I honestly don't know what I would have done - or what my mother would have

chosen for me - but I think it takes a special kid to do anything other than

pre-surgical bracing and surgery. It's really a shame we all had to go

through such trauma. On the other hand, at least we had the surgery option,

as messed up as it was. There really wasn't anything else back then.

But I do think it's extremely important to know that surgery - even with the

new rod system - isn't easy and recuperation isn't easy and we really don't

know how those with the new rods will fare in 20 years. There is always the

possibility that more surgery - or physical therapy or another type of

treatment - might be necessary. Just like those of us in our fifties were

guinea pigs, so is this and future generations.

It was in this digest, in fact, that others talked about lasting pain from

harvested hip bone. It's my understanding that most surgeons still use this

technique, rather than artificial bone, for fusions (because the artificial

bone has problems of its own). I would have liked to have known about that

before my surgery. It seems to me it would have been better to be given that

information rather than have to hunt it down on the internet.

So yes, surgery seems to be the best way to go for such a severe fusion, but

I think any parent would want to send their child into surgery with full

knowledge of all the possibilities - good and bad.

As for the Schroth Method (exercise), I will leave that discussion alone

since this is not the appropriate place to have it.

Best to all,

Andy

Boulder CO

[Guest guest]

Hi,

I have a syrnix in my T-spine. It is not causing much in the way of problems.

It is a pocket of fluid in the spinal cord. There is not a lot out there about

the syrnix. I have found one group that does not provide a lot of

information. But if you go to Daily Strength another support group, there are a

couple of people there that may help you.

I wish your son luck.

WNY

>

> Has anyone heard of a syrinx.  My son Timmy, who just turned 13, had it

diagnosed through  a mri. I think its a fluid filled pocket on his spinal

cord.  Its making his toes go numb.  Please help me with this.  I'm sure it

will complicate his scoliosis.

>

>

>

>

> ________________________________

> From: Andy Stanton <andystanton@...>

> Scoliosis Treatment

> Sent: Tue, December 1, 2009 11:41:14 AM

> Subject: Re: my son

>

>  

> Hi Jolene,

>

> Yes, of course, the intention of my note to was to be supportive. I do

> believe it's important to look into all the options currently available

> before going ahead with surgery.

>

> I also understand, though, that her son's advanced curve makes it very

> probable that she and he will opt for surgery. I myself had had such a curve

> and I know all about spinal rotation (my right hip was just about where my

> belly button should have been). If there had been good options at the time,

> I honestly don't know what I would have done - or what my mother would have

> chosen for me - but I think it takes a special kid to do anything other than

> pre-surgical bracing and surgery. It's really a shame we all had to go

> through such trauma. On the other hand, at least we had the surgery option,

> as messed up as it was. There really wasn't anything else back then.

>

> But I do think it's extremely important to know that surgery - even with the

> new rod system - isn't easy and recuperation isn't easy and we really don't

> know how those with the new rods will fare in 20 years. There is always the

> possibility that more surgery - or physical therapy or another type of

> treatment - might be necessary. Just like those of us in our fifties were

> guinea pigs, so is this and future generations.

>

> It was in this digest, in fact, that others talked about lasting pain from

> harvested hip bone. It's my understanding that most surgeons still use this

> technique, rather than artificial bone, for fusions (because the artificial

> bone has problems of its own). I would have liked to have known about that

> before my surgery. It seems to me it would have been better to be given that

> information rather than have to hunt it down on the internet.

>

> So yes, surgery seems to be the best way to go for such a severe fusion, but

> I think any parent would want to send their child into surgery with full

> knowledge of all the possibilities - good and bad.

>

> As for the Schroth Method (exercise), I will leave that discussion alone

> since this is not the appropriate place to have it.

>

> Best to all,

>

> Andy

>

> Boulder CO

>

>

[Guest guest]

Sorry we live in NC but my son who is 12 was dx aspergers @ 10 started having

seizures about 2 months after he turned 11 they put him on lamictal twice a day

and thank god he hasnt had one since oct

On Fri Mar 12th, 2010 4:09 PM EST CarlaR wrote:

>My son is 6 years old and was diagnosed 2 wks ago with Aspergers and also

Elipesy. Need to know if there are any play dates in NW Arkansas. The Dr.

suggested she wanted us to try to find other children. Thanks for any help.

>

>Carla

>Mother to Lakota age 6, and Jack age 10

>

[Guest guest]

Hi Debbie,

I wanted to reply to you directly, hope that is ok! I have a 5 yo recently

diagnosed as well! I've been looking for support groups as well! I would love to

know someone going through the same things!!!

Amber

( ) My son

Date: Saturday, September 11, 2010, 2:00 PM

 

Hello I am new to this forum and new to Aspergers. My son is 7 and has not been

officially diagnosed, but meets almost all the criteria for it. He is having a

tough time in school. He also has diagnosed ADHD and is on medication. He is a

handful at home when not on his meds. What I desperately need is a support group

for Aspergers in my area, San Diego. I need other parents advise and knowledge

about this. Can anyone help me?

[Guest guest]

Hi Amber:

I know, It is so hard to find a "social group" and a support group for children and parents with Aspergers........it is frustrating because you hear so much about Autism/Aspergers but there aren't many resources for the "high functioning" kids. I have thought of starting my own group but don't know where to begin. What is your situation like? How did your son/daughter get diagnosed? Do you live in San Diego?

Debbie

From: Cathleen <cathleen.veloria@...>Subject: ( ) My son Date: Saturday, September 11, 2010, 2:00

PM Hello I am new to this forum and new to Aspergers. My son is 7 and has not been officially diagnosed, but meets almost all the criteria for it. He is having a tough time in school. He also has diagnosed ADHD and is on medication. He is a handful at home when not on his meds. What I desperately need is a support group for Aspergers in my area, San Diego. I need other parents advise and knowledge about this. Can anyone help me?