Living with Scoliosis

[Guest guest]

Hi TC,

Your note made me cry. I have a child who suffers from more than just

scoliosis as well and has depression from this also. I don't know how old you

are

or where you live but you must get a second, third or even a fourth opinion.

There is much that can be done these days. Please don't give up. It is not fair

to be in pain all the time and to never have relief or peace. Keep searching

because you are worth it, because you deserve it. There are many places in

our nation that will help you and even help with the financial's. They are out

there. You will be in my thoughts.

in MD

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products.

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[Guest guest]

hi susan

thanks for ur reply........if were in such a state where we cant understand

whats happening........can u suggest some good places in india who treats the

scoliasis.........good surgeons for scoliasis in india..........i will be glad

if u give any info u know....

thanks....

Re: Living with scoliosis

Hi TC,

Your note made me cry. I have a child who suffers from more than just

scoliosis as well and has depression from this also. I don't know how old you

are

or where you live but you must get a second, third or even a fourth opinion.

There is much that can be done these days. Please don't give up. It is not fair

to be in pain all the time and to never have relief or peace. Keep searching

because you are worth it, because you deserve it. There are many places in

our nation that will help you and even help with the financial's. They are out

there. You will be in my thoughts.

in MD

************ ********* ********* ********Check out AOL's list of 2007's hottest

products.

(http://money. aol.com/special/ hot-products- 2007?NCID= aoltop0003000000 0001)

[Guest guest]

I also suffer from constant pain and have for many years. People rarely know I'm

in pain because I don't show it. Sometimes I cry and scream when I'm alone, then

move on and do something else. It's been very important for me to have

supportive friends and doctors, hobbies that keep my mind occupied, and my dogs.

And forums with other people who are in the same boat. You don't have to feel

bad for expressing your anger and frustration. It's an important part of dealing

with chronic pain. Have you ever considered a therapist? That can help too.

There are many options for people suffering from chronic pain. But if you give

up and give in, it won't come knocking at your door. You have to do the leg

work. I feel for you, I know the hopelessness that can come over us. But realize

you are not alone. Feel free to email me directly.

Re: Living with scoliosis

Hi TC,

Your note made me cry. I have a child who suffers from more than just

scoliosis as well and has depression from this also. I don't know how old you

are

or where you live but you must get a second, third or even a fourth opinion.

There is much that can be done these days. Please don't give up. It is not fair

to be in pain all the time and to never have relief or peace. Keep searching

because you are worth it, because you deserve it. There are many places in

our nation that will help you and even help with the financial's. They are out

there. You will be in my thoughts.

in MD

************ ********* ********* ********Check out AOL's list of 2007's hottest

products.

(http://money. aol.com/special/ hot-products- 2007?NCID= aoltop0003000000 0001)

[Guest guest]

TC, I empathize with you. I had open heart surgery at

age of 17 months & again at 6 years. The weakness of

the muscles & supporting skeleton caused the

development of scoliosis at age 7. I was in a brace

from age 7-11 & had surgery which was followed by 1

year spent in a cast. I know about being different -

especially in school they can be very cruel. You would

think adults are different about viewing ppl who are

different, but they also keep their distance and have

their own fears in approaching ppl who are different.

I know exactly where u r coming from there. I, too,

suffer with depression & thank goodness it is only

minimal right now & I'm not on any antidepressants.

But, I have been in major depressions & cycle in & out

since 1990. Are you in any type of support group for

your pain, depression or anything? There is a book

about living with the losses of life. I'll try to get

you the exact title. I read it & was in a support

group at church dealing with all kinds of life losses

& this was right before I was in an accident that

changed my life into one of total pain all the time.

Having been a patient in one form or another since I

was a child, this was just another thing to

experience, but it is difficult to deal with and you

are right, ppl just don't understand. I vividly

remember a day in 2001 where I had 6 hours without

pain - I don't know what brought it on, but it was

absolute bliss! People don't understand how the pain

affects daily eating, hygiene, walking into a

building, driving a car-everything exagerates the

pain.

As for the doctor telling you nothing can be done. I

had one tell me that as well. I searched & searched

for 6 years until I found help with a pain clinic. My

history was so extensive it seemed nobody wanted to

touch me. It's like they were intimidated by all I'd

been through or something (13 surgeries for various

things). All I can say is keep looking. Some day one

person will be able to help you & the door will open

up. Just hold on until then. I know it's minute by

minute when u are living with pain, depression, & a

curvature not to mention your history with your lungs.

We have a pretty pitiful mental health center in our

county, but I have a friend in the neighboring county

who goes to a wonderful mental health center & she has

fabulous support groups. I know being able to vent &

have someone grasp what u r going through makes a big

difference. Vent all u want with this group. Everyone

is very understanding & all try to be helpful with

suggestions & relating their own experiences.

You are in my thoughts & prayers, TC. ~Moonbeam

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

>

> People rarely know I'm in pain because I don't show it. Sometimes I

cry and scream when I'm alone, then move on and do something else.

That's the perfect description. Nice to know that we're not alone.

[Guest guest]

I was taught by my parents prior to age 6 to simply

grin & bear it. At that time I'd been a heart patient

for my entire life & was undergoing my 2nd heart

surgery. The message I got in the following years was

-nobody wants to hear your problems, just keep them to

yourself.

This is both a blessing & a curse. I tend to have a

smile on my face even when I'm in misery, so a lot of

ppl (including medical professionals) don't believe

that I'm in pain. Also, I 'stuffed' a lot of emotions

that I shouldn't have because of the methods of my

parents. I discovered that in therapy in my 20s & am

still working on 'living without the mask.' I'm more

of an optimist who sees the glass half full, so I tend

to be on the happy, jovial side. It's a difficult

balance to try to be & present my authentic self when

I'm feeling good in my spirits but terrible in my

body. I'm especially learning not to put on a happy

face at the doctor's ofc. Only ppl who've been

conditioned the way put on the happy mask, I've

discovered. Others simply let their face be the way it

should be according to their feelings both body &

emotionally.

On the other hand, ppl who are in such intense pain

(like us) don't have a huge choice of not wearing a

happy face or some type of mask when out in public or

around other ppl. Ppl would not want to enjoy our

fabulous company if they encountered a pain face all

the time. ~Moonbeam

________________________________________________________________________________\

____

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[Guest guest]

I know exactly how you feel. What about the mental problems involved?

I cant work because of the pain, if I take enough pain meds for the

pain Im incapable of concentrating on the job and will later suffer the

consequenses of doing too much because the pain meds numbed me, living

with friends now because of disability turned me down twice, now having

attorney work on my case. " Im trapped by my back "

> >

> > People rarely know I'm in pain because I don't show it. Sometimes I

> cry and scream when I'm alone, then move on and do something else.

>

>

> That's the perfect description. Nice to know that we're not alone.

>

[Guest guest]

In 1997 prior to my car accident I met with a

financial counselor. Even with terrific insurance, I

still had to pay my co-pays & that wound up being

several hundred dollars each month, at times nearly

half (sometimes more than half) of what I earned. I

had just been through 7 months of unemployment, had

also started paying for the insurance (COBRA) from my

unemployment checks, & began a full-time but temporary

position (thus, no benefits-namely insurance). Some

doctors would accept monthly or partial payments, but

when it comes to your meds - no money no meds, so I'd

been putting those expenses & whatever else I didn't

have the cash for on my credit cards. I'd been in

accounting for 10 years, had counseled many ppl in

finances myself & thought perhaps this guy could give

me a different piece to the puzzle & besides, I was

grasping at straws. Because I was working and drawing

an income there were no programs I was eligible for to

help with any area of life. Here I was, contributing

money into 'the system' thru taxes but unable for any

assistance with food, medications, doctors, heat,

rent, nada!

Well, the financial advisor asked me to come to work

for him because my budget was bare bones. He knew the

entire history of my income & my debt & was amazed at

how I kept the whole thing together each month without

one penny of help from anyone.

What I did learn from him was getting disability is

dang hard! He proceeded to tell me about everyone he

knew who was receiving disability and he said every

one of them had to move in with friends or relatives

(Thank goodness I was able to remain on my own for 6

yrs after qualifying! Am living with friends now, but

hope to be back on my own within a year). He also told

me that the majority of those same ppl had declared

bankruptcy -most chapter 13 but some filed chapter 7-

(another thing that hasn't happened, but to go into

detail requires more time than I have now).

What amazed me most of all was his own story. This man

was a double amputee (I had noticed his wobbly walk,

but never guessed that he had two artificial legs). I

don't recall at the moment how many times he was

denied disability, but it was more than 3. I was glad

that I had his story to mentally refer to 4 years

later when I was applying ( & being denied) for

disability myself.

Since I have traveled this route I have had 'chance'

encounters with strangers in bookstores, the grocery &

other public places who have shared with me their

struggles in getting disability. All of the

aforementioned ppl had been denied & were telling me

their experiences. Thankfully, I was able to tell them

that I was finally approved despite being denied

numerous times and they should keep trying.

I don't know how many times you will be denied. I do

know that you just have to keep fighting until you are

approved. It shouldn't be so hard for ppl who

legitimately cannot work & desperately need it, but it

is.

It sucks big time to have to move in with friends.

(I'd been on my own ALONE for nearly 24 years & loved

it until my recent mountain in the road.) Whenever you

do receive your approval you will also receive a lump

sum amount that has accrued from the date of your

first application, so that money will help. ~Moonbeam

________________________________________________________________________________\

____

Looking for last minute shopping deals?

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[Guest guest]

Hi Kelli,

My name is and I am new too. I am a 22 year old and I was just diagnosed

with a mild scoliosis that I think has been missed for 10-12 years based on

symptoms. I think it has to do partly with the fact that I had a very early

growth spurt and grew very fast (I was full grown, 5'7 " at age 13).

>

> hi my name is Kelli and i have scoliosis. I had the harrington rod surgery at

18 so it's been 25 yrs since my surgery . I have never seen anywhere a support

group like this , i just think this the greatest thing to come about.When i was

younger this would have been the greatest tool for me because of the unknown and

it still is i am so lucky to have found this support group.

>

[Guest guest]

Hi, Kelli, I think that all of us, including you like to help each other.  You

said nice things about this site and I'm positive they and you are much

appreciated. 

 

Welcome.

 

Lj

 

cMT2

From: kelli.oregan <kelli.oregan@...>

Subject: living with scoliosis

Scoliosis Treatment

Date: Friday, June 12, 2009, 1:50 PM

hi my name is Kelli and i have scoliosis. I had the harrington rod surgery at 18

so it's been 25 yrs since my surgery . I have never seen anywhere a support

group like this , i just think this the greatest thing to come about.When i was

younger this would have been the greatest tool for me because of the unknown and

it still is i am so lucky to have found this support group.

[Guest guest]

I am so glad I found this forum. I had Harrington Rods inserted in 1978. 2

years later, I had a second surgery because my spine grew and the rods were

pulled out of the brackets. I had a " lump " in the middle of my spine that

caused excruciating pain whenever I bumped it against something. Today, my back

is still curved pretty badly and I can't remember the last time that my back

didn't hurt. I just figured it was something I had to live with. I would love

to hear from others who had the surgery with poor results. Is correction still

possible? How do I find a doctor who can treat this? The thought of going

through the day pain-free is an exciting one and I would appreciate any advice.

[Guest guest]

alyg429,

 

Welcome to the group, and posting.

 

To answer your question, yes, we have member who just after surgery with Harrington Rods felt their surgery was unsucessful. Others who went years doing very well, only to have the whole thing fall apart, and others who went decades before falling apart.

 

Do you still have hardware, or was it removed during your second surgery? What was the lump? Cyst, how did docs handle it? What levels are fused on you currently? Who did your original surgery and where? Are you currently seeing an ortho? Where are you located now?

 

As to curve improvement, yes and no. Back in the day, they did what they knew how to do, but alas they didn't look at the spine in 4 dimentions, in other words, front, back, left side and right side. They fixed the side to side curves, but didn't see how their work over time, and flattening our Lordosis( back waist curve) would result in Flatback years later. Also with you there may have been some areas where the fusion either didn't develope, or cracked due to your growth, especially if your hardware dislodged.

 

So what to do forward. Seeing a doc with vast experience with post Harrington Rod fusion patients, is a must first step, to see exactly what is going on with you. Do let us know where you are located, and we can suggest some opinion docs. Also know these doc's are usually in major cities, and not all states have one, it's improving, but many have to travel at least regionally to get to one. A good jumping off point is to check the Scoliosis Research Society page, www.srs.org , there they have a physician locator by state, and even city. These are docs who work with scoliosis patients, and handle deformity patients, attend conferences, and get the most up to date ideas flowing in this work. Look for a doc with Aging Spine in their description. When calling doc's ask for the doc's assistant, ask their experience with post Harrington rod patients, and revision surgery, if they hum or haw around, move on, experience counts.

 

Yes it is possible to have an improvement even now, all these years later. Let's not jump ahead though, we have to get you to a qualified doc and see WHAT is going on with your case. We always suggest at least 2 consults.

 

Those of us that have had revision surgery and a reworking of our spine, have found a benefit of getting ourselves upright, and improving the structure overall in terms of alingment. Some have had their pain greatly reduced, and some like me, have had it resolved. Pain is what drives most of us to further treatment afterall, and what we want addressed, no one wants to live like that.

 

I suggest another step, is to go to our site, go to the FILES section, and plain READ. The more you know about our condition, can help you be an informed patient, and ask excellent questions to opinion docs. It's not like the old days where you just handed it to your doc, patients now participate in their treatment, and have choices to make, and being informed, just makes for a better patients.

 

I know addressing this all again all these years later sucks, did for me, but with work, research, a excellent doc, there will be answers to your pain, and a way to address it.

 

So welcome, sorry you need to be among us, but truly we get it, been through it, or are currently going through it, and it's good to be among friends who get the challenge, and live in the body.

 

Please sign your posts so we know who we are talking to, and can address you properly.

 

Once again welcome, and we look forward to getting to know you better!

 

Colorado Springs

 

 

On Thu, Feb 17, 2011 at 9:50 PM, alyg429 <alynne429@...> wrote:

 

I am so glad I found this forum. I had Harrington Rods inserted in 1978. 2 years later, I had a second surgery because my spine grew and the rods were pulled out of the brackets. I had a " lump " in the middle of my spine that caused excruciating pain whenever I bumped it against something. Today, my back is still curved pretty badly and I can't remember the last time that my back didn't hurt. I just figured it was something I had to live with. I would love to hear from others who had the surgery with poor results. Is correction still possible? How do I find a doctor who can treat this? The thought of going through the day pain-free is an exciting one and I would appreciate any advice.

[Guest guest]

Thanks . My name is Amy and I live in Ft. Myers Fl. I don't

actually see a doctor about my back. I have just lived with the pain

over the years. I do still have part of the rods in my back. The

doctor was unable to remove all of them, so he cut out the ones that

were disconnected. He got a second opinion from a Dr. in Orlando, who

told him I needed to have the rods extended to the base of my spine and

secured from the front with rods secured to my ribs. I was almost 18 at

the time and told my parents there was no way I was having that kind of

surgery done. At the time, I was very active and didn't see the need.

Over the years though, it has become harder to move. I am still able to

walk and sit and work, but I don't do things that require me to walk

long distances. I have a job that allows me to sit or stand as I need

and that is good. I have looked for a doctor that is close to me and

found one named Sandoval-Manzanares. I think I will make an

appointment after doing some more research. Thank you for your

suggestion that I look in the File section. That is my next step.

Have a nice day.

Amy

>

> >

> >

> > I am so glad I found this forum. I had Harrington Rods inserted in

1978. 2

> > years later, I had a second surgery because my spine grew and the

rods were

> > pulled out of the brackets. I had a " lump " in the middle of my spine

that

> > caused excruciating pain whenever I bumped it against something.

Today, my

> > back is still curved pretty badly and I can't remember the last time

that my

> > back didn't hurt. I just figured it was something I had to live

with. I

> > would love to hear from others who had the surgery with poor

results. Is

> > correction still possible? How do I find a doctor who can treat

this? The

> > thought of going through the day pain-free is an exciting one and I

would

> > appreciate any advice.

> >

> >

> >

>

[Guest guest]

Amy,

 

Nice to meet you by name!

 

Do let us know how your appointment with Dr. Manzanarez once you book it, and let us know the date, and we will put it on the group calendar. I don't believe we have had anyone see him, so it would be good to get the 411 on how you appointment went.

 

The FILES section can be daunting, I'd start with member stories, you will see yourself in the stories there, I'm K , Colorado, there. Grab a cup of coffee, and some tissue, and read.

 

Anyway, learning is a process, with talking with members here you'll learn a lot and doing research.

 

Off to watch some yucky late night TV, welcome once again, and ask away, we are here to help!

 

Colorado Springs

On Fri, Feb 18, 2011 at 9:41 PM, alyg429 <alynne429@...> wrote:

 

Thanks . My name is Amy and I live in Ft. Myers Fl. I don'tactually see a doctor about my back. I have just lived with the painover the years. I do still have part of the rods in my back. Thedoctor was unable to remove all of them, so he cut out the ones that

were disconnected. He got a second opinion from a Dr. in Orlando, whotold him I needed to have the rods extended to the base of my spine andsecured from the front with rods secured to my ribs. I was almost 18 at

the time and told my parents there was no way I was having that kind ofsurgery done. At the time, I was very active and didn't see the need. Over the years though, it has become harder to move. I am still able to

walk and sit and work, but I don't do things that require me to walklong distances. I have a job that allows me to sit or stand as I needand that is good. I have looked for a doctor that is close to me and

found one named Sandoval-Manzanares. I think I will make anappointment after doing some more research. Thank you for yoursuggestion that I look in the File section. That is my next step.Have a nice day.

Amy>> >> >> > I am so glad I found this forum. I had Harrington Rods inserted in1978. 2> > years later, I had a second surgery because my spine grew and the

rods were> > pulled out of the brackets. I had a " lump " in the middle of my spinethat> > caused excruciating pain whenever I bumped it against something.Today, my> > back is still curved pretty badly and I can't remember the last time

that my> > back didn't hurt. I just figured it was something I had to livewith. I> > would love to hear from others who had the surgery with poorresults. Is> > correction still possible? How do I find a doctor who can treat

this? The> > thought of going through the day pain-free is an exciting one and Iwould> > appreciate any advice.> >> >> >>