Re: 16-year-old daughter--surgery

[Guest guest]

Hello Robin, I am sorry that your daughter has to have surgery. I’m 58 now

but I had my first fusion in 1963. Since then, I’ve had a total of 10 back

operations. Now I don’t say this to scare you, but for some of us, it’s a

reality. I’m wondering why you are going for a 3rd recommendation. I

definitely feel another opinion is a good thing to do. Were both doctors

recommending the same procedure and fusion level?

Your daughter is young and she will bounce back surprisingly fast. Follow the

doctor’s orders and do the physical therapy and walk – walk a lot. I am

curious as to where you live. Have you ever checked on the internet? There is

a mountain of information that’s available now. I‘m attaching a list I made

of information about scoliosis.

Once she is recovered, there should be nothing she can do. I’ve kept a very

active life. I have traveled throughout the USA and abroad. I wasn’t

prevented from doing all the things I loved some are: white water rafting,

skiing, play tennis.

I wish you both the best and that your daughter have a speedy recovery. If you

ever need or would like to talk in person, please feel free to do so. My number

is: 972-4535. I am moving July14th to Ohio so you can email me and I’ll

return your call.

Please note my new email address: janiedmcman@...

The best to you,

Janie McManious

From: robinahearn

Sent: Sunday, July 03, 2011 5:50 PM

Scoliosis Treatment

Subject: 16-year-old daughter--surgery

Hi,

My 16-year-old daughter is scheduled for fusion surgery 8/11. She was diagnosed

with scoliosis about 4 yrs ago. She did the brace thing but to no avail. She

currently has a 58 degree thoracic curve and a 37 degree compensatory lumbar

curve. Her doctor is planning to fuse T5 to L2 with titanium rods. We've gotten

2 opinions so far and plan to get a 3rd before the surgery.

My daughter is all for the surgery, she's just a little anxious. I, however, am

terrified.

Any suggestions would be much appreciated.

Thank you,

Robin Ahearn

[Guest guest]

Hi, Robin - Just a suggestion, that you might consider asking the 3rd opinion

doctor about " selective " fusion of an S curve. Our 2nd opinion doctor

suggested this for my daughter's S curve (she was 10 when she had surgery).

The 2nd opinion doctor said that straightening the dominant curve can cause the

other, compensatory, curve to straighten itself out. We brought this opinion

back to our surgeon (the 1st opinion doctor), and he said he was willing to do

it (fuse only the thoracic curve) as long as we realized that our daughter might

need to go back and have surgery again if the lumbar curve became great enough.

My daughter's lumbar curve was not fused and, though it reverted a bit and we're

keeping an eye on it, it has so far remained less than 20 degrees, which is what

we need to maintain until her growth has stopped. I don't know whether

" selective fusion " depends on age, and whether it would even be an option for

your daughter; I also don't have any idea whether or not it would be a good

thing. What we hoped was that our daughter might be able to maintain more

flexibility in the lumbar region if this procedure worked for her. Our surgeon

also quipped, " It will be a shorter day for me " , and, considering how

challenging this surgery must be, I was glad to shorten his day in the O.R. by a

little.

I think you're smart to be getting additional opinions.

Janet

>

> Hi,

> My 16-year-old daughter is scheduled for fusion surgery 8/11. She was

diagnosed with scoliosis about 4 yrs ago. She did the brace thing but to no

avail. She currently has a 58 degree thoracic curve and a 37 degree

compensatory lumbar curve. Her doctor is planning to fuse T5 to L2 with

titanium rods. We've gotten 2 opinions so far and plan to get a 3rd before the

surgery.

>

> My daughter is all for the surgery, she's just a little anxious. I, however,

am terrified.

>

> Any suggestions would be much appreciated.

> Thank you,

> Robin Ahearn

>

[Guest guest]

I have learned that with an S curve, to fuse the dominant curve only becomes an

option if the secondary curve is compensatory which is determined by bending

xrays. If there is a fairly good chance that it is compensatory, the shorter

fusion would be a better way to go. If it turns out that it wasn't

compansatory, meaning that in spite of fusing the primary curve, the other one

straightens out somewhat but continues to worsen fairly quickly, more fusion

surgery can always be done.

Re: 16-year-old daughter--surgery

Hi, Robin - Just a suggestion, that you might consider asking the 3rd opinion

doctor about " selective " fusion of an S curve. Our 2nd opinion doctor

suggested this for my daughter's S curve (she was 10 when she had surgery).

The 2nd opinion doctor said that straightening the dominant curve can cause the

other, compensatory, curve to straighten itself out. We brought this opinion

back to our surgeon (the 1st opinion doctor), and he said he was willing to do

it (fuse only the thoracic curve) as long as we realized that our daughter might

need to go back and have surgery again if the lumbar curve became great enough.

My daughter's lumbar curve was not fused and, though it reverted a bit and we're

keeping an eye on it, it has so far remained less than 20 degrees, which is what

we need to maintain until her growth has stopped. I don't know whether

" selective fusion " depends on age, and whether it would even be an option for

your daughter; I also don't have any idea whether or not it would be a good

thing. What we hoped was that our daughter might be able to maintain more

flexibility in the lumbar region if this procedure worked for her. Our surgeon

also quipped, " It will be a shorter day for me " , and, considering how

challenging this surgery must be, I was glad to shorten his day in the O.R. by a

little.

I think you're smart to be getting additional opinions.

Janet

>

> Hi,

> My 16-year-old daughter is scheduled for fusion surgery 8/11. She was

diagnosed with scoliosis about 4 yrs ago. She did the brace thing but to no

avail. She currently has a 58 degree thoracic curve and a 37 degree

compensatory lumbar curve. Her doctor is planning to fuse T5 to L2 with

titanium rods. We've gotten 2 opinions so far and plan to get a 3rd before the

surgery.

>

> My daughter is all for the surgery, she's just a little anxious. I, however,

am terrified.

>

> Any suggestions would be much appreciated.

> Thank you,

> Robin Ahearn

>

[Guest guest]

That's interesting.  I don't know what my daughter's bending x-rays showed, but

I'm glad to know this information.  Thank you!

Janet

From: KnightonND@... <KnightonND@...>

Subject: Re: Re: 16-year-old daughter--surgery

Scoliosis Treatment

Date: Tuesday, July 5, 2011, 11:46 AM

 

I have learned that with an S curve, to fuse the dominant curve only

becomes an option if the secondary curve is compensatory which is determined by

bending xrays. If there is a fairly good chance that it is compensatory, the

shorter fusion would be a better way to go. If it turns out that it wasn't

compansatory, meaning that in spite of fusing the primary curve, the other one

straightens out somewhat but continues to worsen fairly quickly, more fusion

surgery can always be done.

Re: 16-year-old daughter--surgery

Hi, Robin - Just a suggestion, that you might consider asking the 3rd opinion

doctor about " selective " fusion of an S curve. Our 2nd opinion doctor

suggested this for my daughter's S curve (she was 10 when she had surgery).

The 2nd opinion doctor said that straightening the dominant curve can cause the

other, compensatory, curve to straighten itself out. We brought this opinion

back to our surgeon (the 1st opinion doctor), and he said he was willing to do

it (fuse only the thoracic curve) as long as we realized that our daughter might

need to go back and have surgery again if the lumbar curve became great enough.

My daughter's lumbar curve was not fused and, though it reverted a bit and we're

keeping an eye on it, it has so far remained less than 20 degrees, which is what

we need to maintain until her growth has stopped. I don't know whether

" selective fusion " depends on age, and whether it would even be an option for

your daughter; I also don't have any idea whether or not it would be a good

thing. What we hoped was that our daughter might be able to maintain more

flexibility in the lumbar region if this procedure worked for her. Our surgeon

also quipped, " It will be a shorter day for me " , and, considering how

challenging this surgery must be, I was glad to shorten his day in the O.R. by a

little.

I think you're smart to be getting additional opinions.

Janet

>

> Hi,

> My 16-year-old daughter is scheduled for fusion surgery 8/11. She was

diagnosed with scoliosis about 4 yrs ago. She did the brace thing but to no

avail. She currently has a 58 degree thoracic curve and a 37 degree

compensatory lumbar curve. Her doctor is planning to fuse T5 to L2 with

titanium rods. We've gotten 2 opinions so far and plan to get a 3rd before the

surgery.

>

> My daughter is all for the surgery, she's just a little anxious. I, however,

am terrified.

>

> Any suggestions would be much appreciated.

> Thank you,

> Robin Ahearn

>

[Guest guest]

I hope you hear from a lot of the good folks on here that had surgeries at a

younger age. That is the time to do it and the outcome is most often very

successful and people go on to lead very active lives.

The alternative is my story. I was not done at a younger age. I was braced

through High School and then it was thought I would stay stable. Instead over

the years it has progressively worsened and now at 55 I MUST have surgery as it

is beginning to crush my lungs and heart.

As long as you use a well-know scoliosis specialist - she will do best to have

it while she is young and healthy.

Good luck, Sara

 

________________________________

From: robinahearn <robinahearn@...>

Scoliosis Treatment

Sent: Sun, July 3, 2011 5:50:09 PM

Subject: 16-year-old daughter--surgery

 

Hi,

My 16-year-old daughter is scheduled for fusion surgery 8/11. She was diagnosed

with scoliosis about 4 yrs ago. She did the brace thing but to no avail. She

currently has a 58 degree thoracic curve and a 37 degree compensatory lumbar

curve. Her doctor is planning to fuse T5 to L2 with titanium rods. We've gotten

2 opinions so far and plan to get a 3rd before the surgery.

My daughter is all for the surgery, she's just a little anxious. I, however, am

terrified.

Any suggestions would be much appreciated.

Thank you,

Robin Ahearn

[Guest guest]

We just had the fusion two weeks ago. My daughter was all for the surgery, too.

Now she says, " Mom, I was healthy before this surgery... " She was completely

healthy, and was athletic. She had a high double curve, so she was balanced.

There was nothing she couldn't do. Now her beloved horseback riding will be

limited. We are grieving the loss of her range of motion, her inability to bend

over, etc. It will get better, but now she definitely will restricted on some

activities she loved. I am wondering if we should have had this done so early

(only 50 degree curve.) Even though the doctor(s) were adamant, and said more

growth and more curve was " absolutely " on the way... I know its early on, but I

don't think either of us will ever be the same. You are correct to be terrified.

Its a God awful surgery. But from everything I was told, it was inevitable. Good

luck. M

>

> Hi,

> My 16-year-old daughter is scheduled for fusion surgery 8/11. She was

diagnosed with scoliosis about 4 yrs ago. She did the brace thing but to no

avail. She currently has a 58 degree thoracic curve and a 37 degree

compensatory lumbar curve. Her doctor is planning to fuse T5 to L2 with

titanium rods. We've gotten 2 opinions so far and plan to get a 3rd before the

surgery.

>

> My daughter is all for the surgery, she's just a little anxious. I, however,

am terrified.

>

> Any suggestions would be much appreciated.

> Thank you,

> Robin Ahearn

>

[Guest guest]

Be glad that she did it now. I had a 48 degrees thoracic and 48 degree

lumbar by age 15. Did not do surgery and instead went to chiropractor and

like your daughter was very active. I in my head wanted no part of any

surgeries when I was young. Would get violent at the mention of surgery.

Got married and had 2 children and by the time I was 37 my curves were

78/64. My ribs were crushing and I was so crooked and had a terrible hump on

my right shoulder blade. I had a 5 year old and a 7 year old and now

facing major surgery. At that point I had no choice because I had a family to

worry about. I wished I had done it earlier. I had to have 3 surgeries. I

am now fused from T1 to L4 both anterior/posterior. I am now 50 years

old, have my share of aches and pains but I work full time and manage pretty

well. Also for the first time I actually look good in clothes. My youth

wasted trying to hide that horrible rib hump.

When my daughter was 13 she showed signs of scoliosis. Took her to the

best in NYC (my last surgeon), braced her and thank God it did work. Had it

not, I would have DEFINITELY done the surgery on her while she was young.

It is a whole different ball game having surgery as an adult. Any

reputable surgeon will agree on that.

I know she is going through a difficult time right now, but I promise this

time next year this will only be a memory.

My thoughts and prayers are with you.

[Guest guest]

Most of the posts have been negative towards surgery so I must respond.

First, the mother of a two week post fusion. It's been 2 weeks-give it time

to heal. Yes, it was major surgery, but limiting her activities will not

be forever. Rushing into the same routine as before will jeopardize her

future and could put her back into surgery. Be patient. I had it done at 13.

That was in the 60's and because of the technique then I was completely

bed ridden for 4 months. Also, it was too short of a fusion. There was no

way to know if it would continue to curve 50 years ago.

So at 59 I needed to have the lumbar fused. It was so much more difficult

to recover plus I'd developed osteoporosis and my lungs were functioning

at 50% from scoliosis. (that is tested with a lung function test).

I am not sorry I had either surgery. Online tends to have fewer positive

outcomes because once healed they go on with their lives and stop posting.

That's unfortunate for new posters. Just like being pg for the 1st brings

out everyone's horror stories which will fill you with more doubt and

fear, scoliosis at your daughter's age and degree of curve in today's

technology is the right thing to fix. Face the fear and for your daughter's

sake be

strong. It's one of the toughest thing you'll have to do as a parent, but

with enough opinions from qualified scoliosis specialists she will thank

you years from now. Also, she is covered under your insurance now and may

not be in the future, so take advantage of that before she faces years of

pain and deformity w/o it. Make it a goal that as she walks through the

hospital doors you are confident you have made the right decision. Be strong

for her. Fight the fear. She will feel that and it will help.

Jolene Morell

Shop online at _www.InheritedButtons.com_

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

[Guest guest]

Do you have incredibly strong back pain? I am in chronic pain with a 21

degree curve. I can't imagine the amount of pain someone with a greater

curve than mine must be experiencing. What do you take for back pain?

On Wed, Jul 6, 2011 at 8:48 PM, <Khanley40@...> wrote:

> **

>

>

> Be glad that she did it now. I had a 48 degrees thoracic and 48 degree

> lumbar by age 15. Did not do surgery and instead went to chiropractor and

> like your daughter was very active. I in my head wanted no part of any

> surgeries when I was young. Would get violent at the mention of surgery.

>

> Got married and had 2 children and by the time I was 37 my curves were

> 78/64. My ribs were crushing and I was so crooked and had a terrible hump

> on

> my right shoulder blade. I had a 5 year old and a 7 year old and now

> facing major surgery. At that point I had no choice because I had a family

> to

> worry about. I wished I had done it earlier. I had to have 3 surgeries. I

> am now fused from T1 to L4 both anterior/posterior. I am now 50 years

> old, have my share of aches and pains but I work full time and manage

> pretty

> well. Also for the first time I actually look good in clothes. My youth

> wasted trying to hide that horrible rib hump.

>

> When my daughter was 13 she showed signs of scoliosis. Took her to the

> best in NYC (my last surgeon), braced her and thank God it did work. Had it

>

> not, I would have DEFINITELY done the surgery on her while she was young.

> It is a whole different ball game having surgery as an adult. Any

> reputable surgeon will agree on that.

>

> I know she is going through a difficult time right now, but I promise this

> time next year this will only be a memory.

>

> My thoughts and prayers are with you.

>

>

[Guest guest]

Normally I would stay out of this kind of discussion but...

The sooner she has the surgery the better. Scoliosis isn't going to go away by

itself. It's only going to worsen as she grows and as she has several more years

of growing, the potential is there to have a very severe problem later on.

Bracing and all the other options out there, excluding surgery, just postpone

the inevitable. Bracing and nonsurgical methods in adults aren't successful at

all. So there is no getting away from it. If you go doctor shopping someone will

offer you the bill of goods that you want, and it won't help out in the long run

despite their promises. The sooner she has surgery the faster she will get back

to her normal life. I had surgery when I was 12 years old. I wouldn't have lived

past 21 because of the severity of the curve. Life throws people curves but it's

up to you to make the best of a bad situation. This is something I am passionate

about. We all want the best for our children and to spare them hurt and pain.

However sometimes we have to do what is right. Your daughter will thank you one

day.

My apologies for being blunt.

.

Moderator

[Guest guest]

Hi ,

I don't really have a lot of back pain. It is mostly muscular in nature.

My neck bothers me the most. After being cut 3 times those muscles tend

to fatigue more easily. I do have some scar tissue where my ribs were cut

and some issues with shoulder pain. Unfortunately now I am also dealing

with my SI joint wearing. This is not uncommon because of having such a long

fusion. The discs above and below the fusion wear. My doctor has just

prescribed me Flexaril which I take only at night if the pain and muscles are

very sore. I try not to take anything actually.

I also try to keep as active as possible. I force myself to walk

everyday. I find it is once I sit down for the night and then get up, I am

very

stiff. Everyone's tolerance for pain is different. I was told by a doctor

that I have a very high threshold for pain. I also think it is what you get

used to after awhile. PT does help also. I have gone on and off

throughout the years. My very worst time is the winter. I hope to eventually

move

south where it is warm all year. I am having a difficult time tolerating

the winters in the north.

Hope this helps.

Kathy

[Guest guest]

Hi Robin....

You have received a number of responses relating to your daughter's possible

spinal fusion surgery. There is one EXTREMELY important issue that has not been

discussed!!

Many, if not most people on this list had surgeries during the 1960's, 1970's,

and early 1980's. A major advancement in spinal fusion surgeries took place in

or around 1984.

Prior to 1984 the standard spinal instrumentation was Harrington Rods.

Harrington Rods consisted of a rod (or rods) with a hook and the top and a hook

at the bottom. The patient was often on total bed rest in a full body cast for

six to eight months. Harrington Rods are now known to create a condition called

" flatback syndrome " .

Starting in or around 1984 new type of spinal instrumentation began to be used.

The most known are Texas ish Rite Hospital (TSRH) Instrumentation and

Cotrel-Dubousset (C-D) Instrumentation(or generic versions there of) . They

consist of two rods with hooks and screws ate many levels. These rods while

correcting the side to side scoliosis are bent to maintain the lordosis and/or

kyphosis of the spine (the Harrington Rod was not bent; hence, the term

" flatback syndrome " ). Furthermore, the patient is out of bed two to three days

after surgery. Adults are often put into a TLSO Brace (the type of brace your

daughter most likely had). Teens often have no brace. Teens are back to school

three to six weeks post surgery, and adults are back to work three to six months

post surgery.

I mention all this as issues that adults who had their initial surgeries in the

1960's, 1970's, and early 1980's do not (and will not) apply to those having

surgeries now.

Hope this helps!!

S.

16-year-old daughter--surgery

Hi,

My 16-year-old daughter is scheduled for fusion surgery 8/11. She was diagnosed

with scoliosis about 4 yrs ago. She did the brace thing but to no avail. She

currently has a 58 degree thoracic curve and a 37 degree compensatory lumbar

curve. Her doctor is planning to fuse T5 to L2 with titanium rods. We've

gotten 2 opinions so far and plan to get a 3rd before the surgery.

My daughter is all for the surgery, she's just a little anxious. I, however, am

terrified.

Any suggestions would be much appreciated.

Thank you,

Robin Ahearn

[Guest guest]

Hi

I had my surgery in March 2010 , so I know more about the recovery for recent

surgery .

I was in the hosptil three day , they had me in my brace and in a chair the

next day . I don't remember anythiing about the hospital stay I was out of it

the whole time . I did not become aware of anything until I was home for three

days .

I had a spinal fusion from the T9 thru Sacrum . so pretty much the whole thing

.. I was pretty stable after one month at which point my husband could return to

work . Two months til I could drive and six months in the cast / brace .

I will admit they surgery was awful the pain unbelieveable . I'm not sure if I

would do it again .

I did have one real complication and that is in about Oct 2010 I found out I

had nerve damage on the left side . I found out the hard way one night I work up

screaming because my left side burned searing hot burning . it would not go away

and it took them til Dec to figure out what it was .

All treatment did not work even painkillers would only dull it , I could not

shower or wear a shirt because anything touching it at all was agony . They

decided to try an experimentle treatment call " Capsasion " ( sp ) it worked but

it only works for about three month but it is non invasive so it works for me .

The last treatment did not work and we are trying again next week . Because of

this I am permantley disabled . The nerve will never heal it is a pain that will

last forever . They best they could offer is to drug me and keep trying

treatments but there is no cure . Even cutting the never could cause it too

flare up with no relief from anything they coud give me . The said cutting the

nerve would cause pain 10 x worse then it is now .

If I can help with any questons regarding the new surgery please ask . Most

people do not end up with the nerve damage I have , my was just bad luck . Nerve

damage is common but mostly its only numbness I just had the bad luck of pain.

Hope all goes well , Carol

>

>

> Hi Robin....

>

> You have received a number of responses relating to your daughter's possible

spinal fusion surgery. There is one EXTREMELY important issue that has not been

discussed!!

>

> Many, if not most people on this list had surgeries during the 1960's, 1970's,

and early 1980's. A major advancement in spinal fusion surgeries took place in

or around 1984.

>

> Prior to 1984 the standard spinal instrumentation was Harrington Rods.

Harrington Rods consisted of a rod (or rods) with a hook and the top and a hook

at the bottom. The patient was often on total bed rest in a full body cast for

six to eight months. Harrington Rods are now known to create a condition called

" flatback syndrome " .

>

> Starting in or around 1984 new type of spinal instrumentation began to be

used. The most known are Texas ish Rite Hospital (TSRH) Instrumentation and

Cotrel-Dubousset (C-D) Instrumentation(or generic versions there of) . They

consist of two rods with hooks and screws ate many levels. These rods while

correcting the side to side scoliosis are bent to maintain the lordosis and/or

kyphosis of the spine (the Harrington Rod was not bent; hence, the term

" flatback syndrome " ). Furthermore, the patient is out of bed two to three days

after surgery. Adults are often put into a TLSO Brace (the type of brace your

daughter most likely had). Teens often have no brace. Teens are back to school

three to six weeks post surgery, and adults are back to work three to six months

post surgery.

>

> I mention all this as issues that adults who had their initial surgeries in

the 1960's, 1970's, and early 1980's do not (and will not) apply to those having

surgeries now.

>

> Hope this helps!!

>

> S.

>

>

>

>

>

>

> 16-year-old daughter--surgery

>

>

>

>

>

> Hi,

> My 16-year-old daughter is scheduled for fusion surgery 8/11. She was

diagnosed with scoliosis about 4 yrs ago. She did the brace thing but to no

avail. She currently has a 58 degree thoracic curve and a 37 degree

compensatory lumbar curve. Her doctor is planning to fuse T5 to L2 with

titanium rods. We've gotten 2 opinions so far and plan to get a 3rd before the

surgery.

>

> My daughter is all for the surgery, she's just a little anxious. I, however,

am terrified.

>

> Any suggestions would be much appreciated.

> Thank you,

> Robin Ahearn

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I also have some damage that has caused me relentless pain for 3 years. I just

recently heard about an Acuscope and Mypulse. I've had 8 treatments and one area

of pain is completely gone tho the other more chronic pains are still there.

It's been recommended that I go 2x a week for about 20 treatments at which point

I could need only go for upkeep. I don't know yet but I did extensive research

and discovered this is not considered and " alternative " treatment because it's a

machine that can actually measure blood flow and such. In many areas of my back

I had little to 0 flow which of course hinders the healing process. I'm hopeful

as, after 5 surgeries in 7 years and at age 54, I don't want any more. But the

pain has made my life so limited, I feel like I'm 100. I'll let you know after

the next couple weeks.

________________________________

From: c <siillyy2000@...>

Scoliosis Treatment

Sent: Sat, July 9, 2011 10:47:47 AM

Subject: Re: 16-year-old daughter--surgery

 

Hi

I had my surgery in March 2010 , so I know more about the recovery for recent

surgery .

I was in the hosptil three day , they had me in my brace and in a chair the next

day . I don't remember anythiing about the hospital stay I was out of it the

whole time . I did not become aware of anything until I was home for three days

..

I had a spinal fusion from the T9 thru Sacrum . so pretty much the whole thing .

I was pretty stable after one month at which point my husband could return to

work . Two months til I could drive and six months in the cast / brace .

I will admit they surgery was awful the pain unbelieveable . I'm not sure if I

would do it again .

I did have one real complication and that is in about Oct 2010 I found out I had

nerve damage on the left side . I found out the hard way one night I work up

screaming because my left side burned searing hot burning . it would not go away

and it took them til Dec to figure out what it was .

All treatment did not work even painkillers would only dull it , I could not

shower or wear a shirt because anything touching it at all was agony . They

decided to try an experimentle treatment call " Capsasion " ( sp ) it worked but

it only works for about three month but it is non invasive so it works for me .

The last treatment did not work and we are trying again next week . Because of

this I am permantley disabled . The nerve will never heal it is a pain that will

last forever . They best they could offer is to drug me and keep trying

treatments but there is no cure . Even cutting the never could cause it too

flare up with no relief from anything they coud give me . The said cutting the

nerve would cause pain 10 x worse then it is now .

If I can help with any questons regarding the new surgery please ask . Most

people do not end up with the nerve damage I have , my was just bad luck . Nerve

damage is common but mostly its only numbness I just had the bad luck of pain.

Hope all goes well , Carol

>

>

> Hi Robin....

>

> You have received a number of responses relating to your daughter's possible

>spinal fusion surgery. There is one EXTREMELY important issue that has not been

>discussed!!

>

>

> Many, if not most people on this list had surgeries during the 1960's, 1970's,

>and early 1980's. A major advancement in spinal fusion surgeries took place in

>or around 1984.

>

>

> Prior to 1984 the standard spinal instrumentation was Harrington Rods.

>Harrington Rods consisted of a rod (or rods) with a hook and the top and a hook

>at the bottom. The patient was often on total bed rest in a full body cast for

>six to eight months. Harrington Rods are now known to create a condition called

> " flatback syndrome " .

>

> Starting in or around 1984 new type of spinal instrumentation began to be

used.

>The most known are Texas ish Rite Hospital (TSRH) Instrumentation and

>Cotrel-Dubousset (C-D) Instrumentation(or generic versions there of) . They

>consist of two rods with hooks and screws ate many levels. These rods while

>correcting the side to side scoliosis are bent to maintain the lordosis and/or

>kyphosis of the spine (the Harrington Rod was not bent; hence, the term

> " flatback syndrome " ). Furthermore, the patient is out of bed two to three days

>after surgery. Adults are often put into a TLSO Brace (the type of brace your

>daughter most likely had). Teens often have no brace. Teens are back to school

>three to six weeks post surgery, and adults are back to work three to six

months

>post surgery.

>

> I mention all this as issues that adults who had their initial surgeries in

the

>1960's, 1970's, and early 1980's do not (and will not) apply to those having

>surgeries now.

>

> Hope this helps!!

>

> S.

>

>

>

>

>

>

> 16-year-old daughter--surgery

>

>

>

>

>

> Hi,

> My 16-year-old daughter is scheduled for fusion surgery 8/11. She was

diagnosed

>with scoliosis about 4 yrs ago. She did the brace thing but to no avail. She

>currently has a 58 degree thoracic curve and a 37 degree compensatory lumbar

>curve. Her doctor is planning to fuse T5 to L2 with titanium rods. We've gotten

>2 opinions so far and plan to get a 3rd before the surgery.

>

>

> My daughter is all for the surgery, she's just a little anxious. I, however,

am

>terrified.

>

> Any suggestions would be much appreciated.

> Thank you,

> Robin Ahearn

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Carol,

Your situation is exactly why I am doing all I can to avoid further surgery.

There are so many potential post-surgical problems that await us it truly

makes one very cautious about additional surgery. I am so incredibly sorry

that you have to endure so much pain, it just isn't fair. I know " life

isn't fair " but for many scoliosis and revision patients it truly seems that

fate is unnecessarily cruel. Is there a technical name for the nerve damage

you have? I ask this because my 14 year-old son has a buddy who was hit in

the foot with a baseball while playing catcher. That minor incident has

ruined his life as he has a permanent nerve injury and the symptoms sound

just like yours with th intense fire-like pain in his foot to the point

where he was screaming in pain. They say the condition is permanent

although they are trying numerous options to help him. I know he had a

catheter in his spine feeding pain medicine to the nerver root and I believe

they tried an option where they pump " horse tranquilizer " (I forget the

actual name of it) onto the nerve as well. He has missed most of his 8th

grade school year and has been home bound much of the time. It is

incredible that such damage can happen through fairly benign circumstances.

It makes one realize how vulnerable we are when we undergo such an intensive

surgical procedure. Carol, I hope and pray that there is a medical

break-though soon that will cure your incredible pain. Hang in there.

Jeanne

From: Scoliosis Treatment

[mailto:Scoliosis Treatment ] On Behalf Of c

Sent: Saturday, July 09, 2011 11:48 AM

Scoliosis Treatment

Subject: Re: 16-year-old daughter--surgery

Hi

I had my surgery in March 2010 , so I know more about the recovery for

recent surgery .

I was in the hosptil three day , they had me in my brace and in a chair the

next day . I don't remember anythiing about the hospital stay I was out of

it the whole time . I did not become aware of anything until I was home for

three days .

I had a spinal fusion from the T9 thru Sacrum . so pretty much the whole

thing . I was pretty stable after one month at which point my husband could

return to work . Two months til I could drive and six months in the cast /

brace .

I will admit they surgery was awful the pain unbelieveable . I'm not sure if

I would do it again .

I did have one real complication and that is in about Oct 2010 I found out I

had nerve damage on the left side . I found out the hard way one night I

work up screaming because my left side burned searing hot burning . it would

not go away and it took them til Dec to figure out what it was .

All treatment did not work even painkillers would only dull it , I could not

shower or wear a shirt because anything touching it at all was agony . They

decided to try an experimentle treatment call " Capsasion " ( sp ) it worked

but it only works for about three month but it is non invasive so it works

for me .

The last treatment did not work and we are trying again next week . Because

of this I am permantley disabled . The nerve will never heal it is a pain

that will last forever . They best they could offer is to drug me and keep

trying treatments but there is no cure . Even cutting the never could cause

it too flare up with no relief from anything they coud give me . The said

cutting the nerve would cause pain 10 x worse then it is now .

If I can help with any questons regarding the new surgery please ask . Most

people do not end up with the nerve damage I have , my was just bad luck .

Nerve damage is common but mostly its only numbness I just had the bad luck

of pain.

Hope all goes well , Carol

>

>

> Hi Robin....

>

> You have received a number of responses relating to your daughter's

possible spinal fusion surgery. There is one EXTREMELY important issue that

has not been discussed!!

>

> Many, if not most people on this list had surgeries during the 1960's,

1970's, and early 1980's. A major advancement in spinal fusion surgeries

took place in or around 1984.

>

> Prior to 1984 the standard spinal instrumentation was Harrington Rods.

Harrington Rods consisted of a rod (or rods) with a hook and the top and a

hook at the bottom. The patient was often on total bed rest in a full body

cast for six to eight months. Harrington Rods are now known to create a

condition called " flatback syndrome " .

>

> Starting in or around 1984 new type of spinal instrumentation began to be

used. The most known are Texas ish Rite Hospital (TSRH) Instrumentation

and Cotrel-Dubousset (C-D) Instrumentation(or generic versions there of) .

They consist of two rods with hooks and screws ate many levels. These rods

while correcting the side to side scoliosis are bent to maintain the

lordosis and/or kyphosis of the spine (the Harrington Rod was not bent;

hence, the term " flatback syndrome " ). Furthermore, the patient is out of bed

two to three days after surgery. Adults are often put into a TLSO Brace (the

type of brace your daughter most likely had). Teens often have no brace.

Teens are back to school three to six weeks post surgery, and adults are

back to work three to six months post surgery.

>

> I mention all this as issues that adults who had their initial surgeries

in the 1960's, 1970's, and early 1980's do not (and will not) apply to those

having surgeries now.

>

> Hope this helps!!

>

> S.

>

>

>

>

>

>

> 16-year-old daughter--surgery

>

>

>

>

>

> Hi,

> My 16-year-old daughter is scheduled for fusion surgery 8/11. She was

diagnosed with scoliosis about 4 yrs ago. She did the brace thing but to no

avail. She currently has a 58 degree thoracic curve and a 37 degree

compensatory lumbar curve. Her doctor is planning to fuse T5 to L2 with

titanium rods. We've gotten 2 opinions so far and plan to get a 3rd before

the surgery.

>

> My daughter is all for the surgery, she's just a little anxious. I,

however, am terrified.

>

> Any suggestions would be much appreciated.

> Thank you,

> Robin Ahearn

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Jeanne,

Yes it sounds like his nerve pain is like mine. I'm sure they told me the name

but I don't speak medical speak .

They did three different spine injections each more painful then the next . It

is hard to inject anything in there because I have so much hardware that the CT

they use as a guide does not show a good picture it gets a lot of starbursts .

They experimental treatment they are using now is working but it only last

three months . I am only the 5th person it has been used on in any Military

medical hospital . It's called " Capsion " other name for it is " Quarsara " I

may have misspelled that . Most doctors have never heard of it . It is a patch

that is made from Hot chili peppers ( 10 x hotter then any chili pepper out

there ) They numb the area and sedate me then apply the patches to all the ares

affected .

It stays on for an hour . No one can touch that patch without gloves my other

body parts must be covered so that they are not touch by the patch . The one

nurse got some on her hand and ended up crying because it burned so bad . I

don't feel that burn because then numb the area . After ward it feels like a

very bad sunburn and it gets red with some blisters .

They take me off the sedation wipe everything down and the funny part is they

put everything that has touch the patch in a hazard waste container including

the sheets . which cant be washed with anything else because it may rub off on

it . After about two days I'm fine , it can take up to a month for it to kick in

.. Once it works there is no pain at all !! It's great ,

They goal of the treatment is to kill the nerve , of course the nerves always

grow back but this treatment seems to give a bout a three month or longer relief

.. The only other option is pain killers , which I use or to try a surgery which

they say coould make it 10x worse and if it did they would not be able to fix it

..

Have your friend look up Capsasion and mention it to his doctor . Thank you for

your concern and good wishes ... Carol

> >

> >

> > Hi Robin....

> >

> > You have received a number of responses relating to your daughter's

> possible spinal fusion surgery. There is one EXTREMELY important issue that

> has not been discussed!!

> >

> > Many, if not most people on this list had surgeries during the 1960's,

> 1970's, and early 1980's. A major advancement in spinal fusion surgeries

> took place in or around 1984.

> >

> > Prior to 1984 the standard spinal instrumentation was Harrington Rods.

> Harrington Rods consisted of a rod (or rods) with a hook and the top and a

> hook at the bottom. The patient was often on total bed rest in a full body

> cast for six to eight months. Harrington Rods are now known to create a

> condition called " flatback syndrome " .

> >

> > Starting in or around 1984 new type of spinal instrumentation began to be

> used. The most known are Texas ish Rite Hospital (TSRH) Instrumentation

> and Cotrel-Dubousset (C-D) Instrumentation(or generic versions there of) .

> They consist of two rods with hooks and screws ate many levels. These rods

> while correcting the side to side scoliosis are bent to maintain the

> lordosis and/or kyphosis of the spine (the Harrington Rod was not bent;

> hence, the term " flatback syndrome " ). Furthermore, the patient is out of bed

> two to three days after surgery. Adults are often put into a TLSO Brace (the

> type of brace your daughter most likely had). Teens often have no brace.

> Teens are back to school three to six weeks post surgery, and adults are

> back to work three to six months post surgery.

> >

> > I mention all this as issues that adults who had their initial surgeries

> in the 1960's, 1970's, and early 1980's do not (and will not) apply to those

> having surgeries now.

> >

> > Hope this helps!!

> >

> > S.

> >

> >

> >

> >

> >

> >

> > 16-year-old daughter--surgery

> >

> >

> >

> >

> >

> > Hi,

> > My 16-year-old daughter is scheduled for fusion surgery 8/11. She was

> diagnosed with scoliosis about 4 yrs ago. She did the brace thing but to no

> avail. She currently has a 58 degree thoracic curve and a 37 degree

> compensatory lumbar curve. Her doctor is planning to fuse T5 to L2 with

> titanium rods. We've gotten 2 opinions so far and plan to get a 3rd before

> the surgery.

> >

> > My daughter is all for the surgery, she's just a little anxious. I,

> however, am terrified.

> >

> > Any suggestions would be much appreciated.

> > Thank you,

> > Robin Ahearn

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Carol,

Have they tried Lyrica for your nerve pain? I have been on it since before my

t10-L5 fusion. I was first given it for the nerve pain in my hands. The pain

management doctor raised the dose that my gp gave me to see if it would help my

back pain. After the spinal fusion, I went back on it because I still have some

pain down one leg and occassionally pain in both hands. My urologist says that

Lyrica is the best solution for my interstital cystitis also.

Bev O

Aurora, Oh

> >

> >

> > Hi Robin....

> >

> > You have received a number of responses relating to your daughter's possible

spinal fusion surgery. There is one EXTREMELY important issue that has not been

discussed!!

> >

> > Many, if not most people on this list had surgeries during the 1960's,

1970's, and early 1980's. A major advancement in spinal fusion surgeries took

place in or around 1984.

> >

> > Prior to 1984 the standard spinal instrumentation was Harrington Rods.

Harrington Rods consisted of a rod (or rods) with a hook and the top and a hook

at the bottom. The patient was often on total bed rest in a full body cast for

six to eight months. Harrington Rods are now known to create a condition called

" flatback syndrome " .

> >

> > Starting in or around 1984 new type of spinal instrumentation began to be

used. The most known are Texas ish Rite Hospital (TSRH) Instrumentation and

Cotrel-Dubousset (C-D) Instrumentation(or generic versions there of) . They

consist of two rods with hooks and screws ate many levels. These rods while

correcting the side to side scoliosis are bent to maintain the lordosis and/or

kyphosis of the spine (the Harrington Rod was not bent; hence, the term

" flatback syndrome " ). Furthermore, the patient is out of bed two to three days

after surgery. Adults are often put into a TLSO Brace (the type of brace your

daughter most likely had). Teens often have no brace. Teens are back to school

three to six weeks post surgery, and adults are back to work three to six months

post surgery.

> >

> > I mention all this as issues that adults who had their initial surgeries in

the 1960's, 1970's, and early 1980's do not (and will not) apply to those having

surgeries now.

> >

> > Hope this helps!!

> >

> > S.

> >

> >

> >

> >

> >

> >

> > 16-year-old daughter--surgery

> >

> >

> >

> >

> >

> > Hi,

> > My 16-year-old daughter is scheduled for fusion surgery 8/11. She was

diagnosed with scoliosis about 4 yrs ago. She did the brace thing but to no

avail. She currently has a 58 degree thoracic curve and a 37 degree

compensatory lumbar curve. Her doctor is planning to fuse T5 to L2 with

titanium rods. We've gotten 2 opinions so far and plan to get a 3rd before the

surgery.

> >

> > My daughter is all for the surgery, she's just a little anxious. I,

however, am terrified.

> >

> > Any suggestions would be much appreciated.

> > Thank you,

> > Robin Ahearn

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >