Hi New here

[Guest guest]

So sorry to hear about your daughter. Mine is nearing 13 and although not

nearly suffering as badly, it is so frustrating not to get the help she needs..

I have a lot of chronic spine issues and had to see a lot of different pain

management drs before I found one that I could work with- each one seems to have

a different take on how to do things.

Aqua therapy would be wonderful for her! It is a first step for chronic pain.

It has helped me maintain muscle tone during periods of great pain.

Gabapentin (Neurontin)Lamotrigine (Lamictal)Pregabalin (Lyrica)Tiagabine

(Gabitril)Topiramate (Topamax)

Cymbalta(anti depressant) are all good for nerve pain.

Ask about Ultram or Tramadol if she hasn't tried it yet. It is not as habit

forming as a regular narcotic but does help me a lot. Drs are more comfortable

prescribing it-I do take 2 daily and have run into few objections.

Does she have a TENS unit for use at home? Or Ultra sound and massage?

I do hope you find a Dr that realizes how much the pain is interfering with her

life.

Diane

Hi new here

>Date: Mon, 10 Mar 2008 15:40:34 -0500 (Eastern Standard Time)

>

>Hi I just joined this group.

> My daughter Breanna 17 had surgery in Oct 2006 with a full spine fusion

>and

>17 pins with two full spinal rods. She has juvenile Scoliosis and has two

>curves in her back and one in her neck. She has not had the surgery in her

>neck yet. The problem is they told us that it would take a year to heal and

>she would be ok and things would be great.... Well things are not great and

>she has missed two years of school with some home Tudors but most days she

>is in too much pain. She is still using a wheel chair every day and now

>also

>has a hospital bed.

>She has tingling in her legs and shooting pains going down her legs. Also

>on

>a scale of 1 to 10 she is an 8 most days with pain in her upper back and

>shoulders.

> We went to the pain clinic last Friday and they just said she has some

>bad

>nerve damage and they can not fix that. The Dr said she would be in pain

>the

>rest of her life. My question is how do I get help in making the Right

>doctors send her for some kind of further testing and see what can be done.

>I feel like every time we see the surgeon every three months he just keeps

>saying things like well I can not believe she is still in this kind of

>pain.

>.

>He does write letters to the school and things like that but has not gone

>out of his way to do more like referrer her to someone else....

>I live in the Boston Area and have tried researching organizations but

>with

>not much luck. Her primary care doctor is passing the buck and no one

>wants

>to be the one to make the move to get her the help she needs... Any help

>would be appreciated. .. As to what do I do now?

>

>I believe she needs water therapy or massage therapy and things like that.

>The pain clinic also say pain medications are not the answer because she is

>so young and her body would build up a tolerance from them....

>

>Thanks Cheri

>

>

[Guest guest]

Try Harry Shufflebarger in Miami and see if he can

help her.

--- " MELODY KING,DAVID LANE " <melodylane2195@...>

wrote:

> I am sorry to read about your daughters pain. The

> only thing I can suggest

> is that you keep looking for a doctor that can help

> her. Hopefully there

> will be members of this group who live in the same

> area as you do that can

> recommend good physicians, including

> orthopedic,neurosurgery and pain

> management doctors that practice in your area. If

> you don't find someone

> close to home, you might need to travel to get the

> help your daughter needs.

> Your daughter is too young to accept living in so

> much pain for the rest of

> her life.

>

> I know of a company that charges for the services

> they provide, but if you

> can't find a doctor on your own, they have helped

> numerous spine patients

> find the right doctor. I talked to the director of

> the company when I was

> contemplating going to Germany for artificial

> cercival disc replacement

> surgery last year. One of the services they provide

> is downloading a

> clients medical records/MRI's CT scans, etc and

> sending them to surgeons who

> can review the records without an office visit. If

> you want more info, you

> can pm me.

>

> Please keep the group updated regarding your

> daughter's progress. I'll be

> thinking healthy pain free thoughts and sending them

> your way. Melody

>

> >From: " Just.Me " <just.cheri@...>

> >Reply-Scoliosis Treatment

> ><Scoliosis Treatment >

> >Subject: Hi new here

> >Date: Mon, 10 Mar 2008 15:40:34 -0500 (Eastern

> Standard Time)

> >

> >Hi I just joined this group.

> > My daughter Breanna 17 had surgery in Oct 2006

> with a full spine fusion

> >and

> >17 pins with two full spinal rods. She has juvenile

> Scoliosis and has two

> >curves in her back and one in her neck. She has not

> had the surgery in her

> >neck yet. The problem is they told us that it would

> take a year to heal and

> >she would be ok and things would be great.... Well

> things are not great and

> >she has missed two years of school with some home

> Tudors but most days she

> >is in too much pain. She is still using a wheel

> chair every day and now

> >also

> >has a hospital bed.

> >She has tingling in her legs and shooting pains

> going down her legs. Also

> >on

> >a scale of 1 to 10 she is an 8 most days with pain

> in her upper back and

> >shoulders.

> > We went to the pain clinic last Friday and they

> just said she has some

> >bad

> >nerve damage and they can not fix that. The Dr said

> she would be in pain

> >the

> >rest of her life. My question is how do I get help

> in making the Right

> >doctors send her for some kind of further testing

> and see what can be done.

> >I feel like every time we see the surgeon every

> three months he just keeps

> >saying things like well I can not believe she is

> still in this kind of

> >pain.

> >.

> >He does write letters to the school and things like

> that but has not gone

> >out of his way to do more like referrer her to

> someone else....

> >I live in the Boston Area and have tried

> researching organizations but

> >with

> >not much luck. Her primary care doctor is passing

> the buck and no one

> >wants

> >to be the one to make the move to get her the help

> she needs... Any help

> >would be appreciated... As to what do I do now?

> >

> >I believe she needs water therapy or massage

> therapy and things like that.

> >The pain clinic also say pain medications are not

> the answer because she is

> >so young and her body would build up a tolerance

> from them....

> >

> >Thanks Cheri

> >

> >[Non-text portions of this message have been

> removed]

> >

>

>

>

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

I am sorry to hear about your daughter and her suffering. I do

understand what she is going through.

Have you tried the Shriner's hospitals? They might have a look at her.

Or Dr. Boachie in NYC.

I know this might be difficult to accept but there might not be a

solution other than physiotherapy, medication and tender loving care.

If there is nerve damage caused by the surgery it can difficult if not

impossible to fix. I know you have to exhaust all the options but it

sounds like you are doing the right things right now. I definitely

would get a second opinion but I wouldn't rush back into further

surgery unless they can clearly identify the problem.

I live with chronic pain. I have been in severe pain since I was 12

years old. It never went away after 4 surgeries to correct it. In fact

it made it worse. The last surgeon that looked at my situation told me

that my pain was bizarre and he couldn't understand what exactly was

causing it. Which kind of meant because I can't see it then it must

not exist... The only options I have personally are physiotherapy and

medications.

I know this isn't exactly inspirational but I think you're doing the

right things. I know it's difficult for you and your daughter. If the

pain clinic offers pain counseling that would help her out as well.

Physiotherapy would definitely be helpful I think.

[Guest guest]

How big was her curve and where did you have the surgery done?

Hi new here

Hi I just joined this group.

My daughter Breanna 17 had surgery in Oct 2006 with a full spine fusion and

17 pins with two full spinal rods. She has juvenile Scoliosis and has two

curves in her back and one in her neck. She has not had the surgery in her

neck yet. The problem is they told us that it would take a year to heal and

she would be ok and things would be great.... Well things are not great and

she has missed two years of school with some home Tudors but most days she

is in too much pain. She is still using a wheel chair every day and now also

has a hospital bed.

She has tingling in her legs and shooting pains going down her legs. Also on

a scale of 1 to 10 she is an 8 most days with pain in her upper back and

shoulders.

We went to the pain clinic last Friday and they just said she has some bad

nerve damage and they can not fix that. The Dr said she would be in pain the

rest of her life. My question is how do I get help in making the Right

doctors send her for some kind of further testing and see what can be done.

I feel like every time we see the surgeon every three months he just keeps

saying things like well I can not believe she is still in this kind of pain.

..

He does write letters to the school and things like that but has not gone

out of his way to do more like referrer her to someone else....

I live in the Boston Area and have tried researching organizations but with

not much luck. Her primary care doctor is passing the buck and no one wants

to be the one to make the move to get her the help she needs... Any help

would be appreciated. .. As to what do I do now?

I believe she needs water therapy or massage therapy and things like that.

The pain clinic also say pain medications are not the answer because she is

so young and her body would build up a tolerance from them....

Thanks Cheri

[Guest guest]

Hi Cheri,

I cannot imagine what your daughter must be feeling, or how hopeless you must

feel. As a Mom, I know I would rather have pain all day long rather than have

one of my children hurt. They are adults and I still feel the same way. As a

chronic pain patient on pain meds, I have said almost every day how thankful I

am that there are doctors who will give patients the medicines to control pain,

unlike in the days when I was in nursing school, in the '70's. If I didn't have

pain control I would be bed bound and life would be horrible.

That said- I didn't have an easy time getting help, with pain control or even

getting someone to believe me that I was in unbelievable pain that kept me in

bed. I had a doctor tell me that it had not been long enough since my surgery

for me to be having the kind of pain I was having. I saw three doctors,

including one scoliosis specialist without ever getting an appropriate

diagnosis. It was not until I had suffered for 1 1/2 years and finally saw

another scoliosis doctor, Dr Boachie, in NYC, that I found out that I had broken

hardware and that the fusion had also been broken. By then it was too late for

me to have surgery because my insurance was discontinued. So I do OK on pain

meds. Your daughter should not have to use a wheelchair and use a hospital bed.

She needs answers. Not doctors telling her she shouldn't be hurting, but rather

a doctor who will find out WHY she has so much pain. Where did the nerve damage

come from? Was she in pain like this before her surgery?

I agree that your daughter is young and I understand there being concern about

having to continue to increase pain meds. But..... it is a medical right to have

one's pain managed. There is never a promise to relieve all pain, but no one, no

matter how young, should have to " learn to live with " unbearable pain. That is

no quality of life. Have her doctors tried any medications specifically for

nerve pain? I am taking Lyrica, which is not a narcotic, and it has helped

control a big part of my nerve pain. And as far as developing a tolerance to

narcotics- I have been on the same dose of narcotics for almost 5 years! I

have ' as needed ' morphine for breakthrough pain and that goes up and down,

depending on the level of pain. That dose was increased, once, 4 years ago.

There is no reason why your daughter can't have medication carefully managed

to minimize her pain.

I hope someone can help you with a doctor's name who is known to be caring and

will listen to your daughter's problems. If not, I agree with the other letter,

that you may have to keep knocking on doors, but by all means I would speak up

and tell the doctor that you see, if they give you the same answers you've been

giving, that you know your daughter has a right to have her pain managed.

I wish you the best. Please let us know how things go. God bless, Bea

" Just.Me " <just.cheri@...> wrote: Hi I just

joined this group.

My daughter Breanna 17 had surgery in Oct 2006 with a full spine fusion and

17 pins with two full spinal rods. She has juvenile Scoliosis and has two

curves in her back and one in her neck. She has not had the surgery in her

neck yet. The problem is they told us that it would take a year to heal and

she would be ok and things would be great.... Well things are not great and

she has missed two years of school with some home Tudors but most days she

is in too much pain. She is still using a wheel chair every day and now also

has a hospital bed.

She has tingling in her legs and shooting pains going down her legs. Also on

a scale of 1 to 10 she is an 8 most days with pain in her upper back and

shoulders.

We went to the pain clinic last Friday and they just said she has some bad

nerve damage and they can not fix that. The Dr said she would be in pain the

rest of her life. My question is how do I get help in making the Right

doctors send her for some kind of further testing and see what can be done.

I feel like every time we see the surgeon every three months he just keeps

saying things like well I can not believe she is still in this kind of pain.

.

He does write letters to the school and things like that but has not gone

out of his way to do more like referrer her to someone else....

I live in the Boston Area and have tried researching organizations but with

not much luck. Her primary care doctor is passing the buck and no one wants

to be the one to make the move to get her the help she needs... Any help

would be appreciated... As to what do I do now?

I believe she needs water therapy or massage therapy and things like that.

The pain clinic also say pain medications are not the answer because she is

so young and her body would build up a tolerance from them....

Thanks Cheri

[Guest guest]

how common is it for people to develop this pain after

surgery? My son is scheduled for surgery and has no

pain now.

--- Leger - C74 <legerpj@...> wrote:

> I am sorry to hear about your daughter and her

> suffering. I do

> understand what she is going through.

>

> Have you tried the Shriner's hospitals? They might

> have a look at her.

> Or Dr. Boachie in NYC.

>

> I know this might be difficult to accept but there

> might not be a

> solution other than physiotherapy, medication and

> tender loving care.

> If there is nerve damage caused by the surgery it

> can difficult if not

> impossible to fix. I know you have to exhaust all

> the options but it

> sounds like you are doing the right things right

> now. I definitely

> would get a second opinion but I wouldn't rush back

> into further

> surgery unless they can clearly identify the

> problem.

>

> I live with chronic pain. I have been in severe pain

> since I was 12

> years old. It never went away after 4 surgeries to

> correct it. In fact

> it made it worse. The last surgeon that looked at my

> situation told me

> that my pain was bizarre and he couldn't understand

> what exactly was

> causing it. Which kind of meant because I can't see

> it then it must

> not exist... The only options I have personally are

> physiotherapy and

> medications.

>

> I know this isn't exactly inspirational but I think

> you're doing the

> right things. I know it's difficult for you and your

> daughter. If the

> pain clinic offers pain counseling that would help

> her out as well.

> Physiotherapy would definitely be helpful I think.

>

>

>

>

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

I couldn't tell you the statistics about pain developing as a result

of surgery. I had pain prior to surgery as well. Following surgery the

pain started in earnest an has never left me. I was able to function

for about 20 years before I finally had to stop working. In my case I

was severe enough at age 12 that it would have been life threatening.

My surgery was performed in 1970. They have gotten a lot better since

at it. I might just have been one of the rare unlucky ones. The ones

with pain on this list post surgical are those that came here because

of it. There is a whole world of people out there that never

experienced anything but good results from the surgery. You won't find

them here because they don't need this group. So you don't hear much

about the successes here.

[Guest guest]

In a message dated 3/10/08 8:21:01 PM, legerpj@... writes:

> Physiotherapy would definitely be helpful I think.

>

what is physiotherapy?

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

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advice on AOL Money & amp; Finance.

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[Guest guest]

I strongly recommend Dr. Boachie in NYC. He did my revision surgery. I

also had a consultation with Schufflebarger down in Miami. He recommended me

to

Dr. Boachie (closer to my home). Also he did not have much of a bedside

manner. Was also told I wouldn't see him again after the surgery. Dr. Boachie

and his staff are very warm. I would suggest you google his name. There is

an article about a surgery he performed on a young girl that no one would

touch. He is truly amazing. Google Dr. Oheneba Boachi-Adjei. He is

definitely

worth the ride from Boston.

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

In a message dated 3/11/08 1:24:12 AM, p0etiss@... writes:

> > Have you tried the Shriner's hospitals?

>

Dr. Betz at Shriners in Philadelphia is a well known pediatric scoliosis

surgeon. Shriners offers outstanding care and at no cost for kids under 18 and

until 21 if already a patient there. My son went there for 2nd opinion

appointments and it went very well although he had his surgery with Dr. Lauerman

at

town University Hospital. We live in Northern Virginia and being close

to home was part of the consideration.

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

It's Tax Time! Get tips,

forms, and advice on AOL Money & amp; Finance.

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[Guest guest]

Physiotherapists do things like exercise, weight training, water

exercise, TENS, laser, acupuncture, etc. They deal with soft tissue

injuries, etc. They also can relieve pain or at least speed recovery

by some of their treatments. For people with scoliosis or surgical

problems resulting from fusion the choices available to them can be

quite limited. I can't tolerate most of the exercises they would

normally do on a healthy individual but I do benefit from TENS and

acupuncture. They also have machines similar to the portable TENS

devices that are a lot more effective. In Canada and I assume the USA

it's called physiotherapy and done by a physiotherapist. It's also

known as sports medicine in some places because they treat most of the

soft tissue injuries associated with sports. The one I go to, when I

can afford it, is located in an aquatic fitness center so you have the

additional benefits of sauna and steam rooms. I highly recommend steam

for back pain. For some reason the damp hot steam makes me feel

wonderful and loosens me up a lot. Most hospitals in this country have

physiotherapy departments as well.

[Guest guest]

Hi Melody,

Did you end up having the artificial disc replacement and, if so, how did it go?

Good results? Do they do that kind of surgery in North America?

M.

" MELODY KING,DAVID LANE " <melodylane2195@...> wrote:

I am sorry to read about your daughters pain. The only thing I can suggest

is that you keep looking for a doctor that can help her. Hopefully there

will be members of this group who live in the same area as you do that can

recommend good physicians, including orthopedic,neurosurgery and pain

management doctors that practice in your area. If you don't find someone

close to home, you might need to travel to get the help your daughter needs.

Your daughter is too young to accept living in so much pain for the rest of

her life.

I know of a company that charges for the services they provide, but if you

can't find a doctor on your own, they have helped numerous spine patients

find the right doctor. I talked to the director of the company when I was

contemplating going to Germany for artificial cercival disc replacement

surgery last year. One of the services they provide is downloading a

clients medical records/MRI's CT scans, etc and sending them to surgeons who

can review the records without an office visit. If you want more info, you

can pm me.

Please keep the group updated regarding your daughter's progress. I'll be

thinking healthy pain free thoughts and sending them your way. Melody

>From: " Just.Me " <just.cheri@...>

>Reply-Scoliosis Treatment

><Scoliosis Treatment >

>Subject: Hi new here

>Date: Mon, 10 Mar 2008 15:40:34 -0500 (Eastern Standard Time)

>

>Hi I just joined this group.

> My daughter Breanna 17 had surgery in Oct 2006 with a full spine fusion

>and

>17 pins with two full spinal rods. She has juvenile Scoliosis and has two

>curves in her back and one in her neck. She has not had the surgery in her

>neck yet. The problem is they told us that it would take a year to heal and

>she would be ok and things would be great.... Well things are not great and

>she has missed two years of school with some home Tudors but most days she

>is in too much pain. She is still using a wheel chair every day and now

>also

>has a hospital bed.

>She has tingling in her legs and shooting pains going down her legs. Also

>on

>a scale of 1 to 10 she is an 8 most days with pain in her upper back and

>shoulders.

> We went to the pain clinic last Friday and they just said she has some

>bad

>nerve damage and they can not fix that. The Dr said she would be in pain

>the

>rest of her life. My question is how do I get help in making the Right

>doctors send her for some kind of further testing and see what can be done.

>I feel like every time we see the surgeon every three months he just keeps

>saying things like well I can not believe she is still in this kind of

>pain.

>.

>He does write letters to the school and things like that but has not gone

>out of his way to do more like referrer her to someone else....

>I live in the Boston Area and have tried researching organizations but

>with

>not much luck. Her primary care doctor is passing the buck and no one

>wants

>to be the one to make the move to get her the help she needs... Any help

>would be appreciated... As to what do I do now?

>

>I believe she needs water therapy or massage therapy and things like that.

>The pain clinic also say pain medications are not the answer because she is

>so young and her body would build up a tolerance from them....

>

>Thanks Cheri

>

>

[Guest guest]

Hi ,

I have not had the ADR surgery yet. My doctor said I should wait 6 months from

the surgery I had on my lower back in December. I see the doctor for a follow

up in a couple weeks and I'm hoping to talk him into beginning the process of

insurance approval right away. It is quite likely the insurance company will

not pay for the surgery. If that happens, I might end up going to Germany like

I had originally planned to do. I'd rather have the surgery in the states, but

I'm sure the cost will be substantially more than the price in Europe. I'll

post more after my next doctor appt.

Yes, ADR surgery is being done in the U.S. The Prodisc C (an artificial cervical

disc) was approved by the FDA last December. It was only approved for single

level procedures though. I need a 2 level procedure....so my doctor either uses

the device " off label " or he requests a waiver from the FDA. I'm not sure of the

exact process. I will be asking lots of questions when I see him.

Melody

: RE: Hi new here

Hi Melody,

Did you end up having the artificial disc replacement and, if so, how did it

go? Good results? Do they do that kind of surgery in North America?

M.

" MELODY KING,DAVID LANE "

<melodylane2195@...<mailto:melodylane2195@...>> wrote: I am sorry to

read about your daughters pain. The only thing I can suggest

is that you keep looking for a doctor that can help her. Hopefully there

will be members of this group who live in the same area as you do that can

recommend good physicians, including orthopedic,neurosurgery and pain

management doctors that practice in your area. If you don't find someone

close to home, you might need to travel to get the help your daughter needs.

Your daughter is too young to accept living in so much pain for the rest of

her life.

I know of a company that charges for the services they provide, but if you

can't find a doctor on your own, they have helped numerous spine patients

find the right doctor. I talked to the director of the company when I was

contemplating going to Germany for artificial cercival disc replacement

surgery last year. One of the services they provide is downloading a

clients medical records/MRI's CT scans, etc and sending them to surgeons who

can review the records without an office visit. If you want more info, you

can pm me.

Please keep the group updated regarding your daughter's progress. I'll be

thinking healthy pain free thoughts and sending them your way. Melody

>From: " Just.Me " <just.cheri@...<mailto:just.cheri@...>>

>Reply-To:

Scoliosis Treatment <mailto:Scoliosis Treatment >

>To:

<Scoliosis Treatment <mailto:Scoliosis Treatment >>

>Subject: Hi new here

>Date: Mon, 10 Mar 2008 15:40:34 -0500 (Eastern Standard Time)

>

>Hi I just joined this group.

> My daughter Breanna 17 had surgery in Oct 2006 with a full spine fusion

>and

>17 pins with two full spinal rods. She has juvenile Scoliosis and has two

>curves in her back and one in her neck. She has not had the surgery in her

>neck yet. The problem is they told us that it would take a year to heal and

>she would be ok and things would be great.... Well things are not great and

>she has missed two years of school with some home Tudors but most days she

>is in too much pain. She is still using a wheel chair every day and now

>also

>has a hospital bed.

>She has tingling in her legs and shooting pains going down her legs. Also

>on

>a scale of 1 to 10 she is an 8 most days with pain in her upper back and

>shoulders.

> We went to the pain clinic last Friday and they just said she has some

>bad

>nerve damage and they can not fix that. The Dr said she would be in pain

>the

>rest of her life. My question is how do I get help in making the Right

>doctors send her for some kind of further testing and see what can be done.

>I feel like every time we see the surgeon every three months he just keeps

>saying things like well I can not believe she is still in this kind of

>pain.

>.

>He does write letters to the school and things like that but has not gone

>out of his way to do more like referrer her to someone else....

>I live in the Boston Area and have tried researching organizations but

>with

>not much luck. Her primary care doctor is passing the buck and no one

>wants

>to be the one to make the move to get her the help she needs... Any help

>would be appreciated... As to what do I do now?

>

>I believe she needs water therapy or massage therapy and things like that.

>The pain clinic also say pain medications are not the answer because she is

>so young and her body would build up a tolerance from them....

>

>Thanks Cheri

>

>

[Guest guest]

Yes, Shriners Philly is fantastic. Dr. Betz developed VBS (vertebral

stapling), and Shriners Philly is one of 10 US facilities currently

providing VBS.

For anyone seeking more info on stapling, a new site just came up

(created by parents of VBS kids, mostly) ...

http://www.vertebralstapling.com/

At 17, your daughter is too old for stapling, but Betz's PA, Janet

Cerrone could put you in touch with the proper resources at the

hospital. She's a great source of information.

Her contact info is 1-800-281-4050 or janetcerrone@... (she

just added this new email specifically for parent inquiries - and

she's wonderful!). BTW, she's been with involved with stapling since

inception.

Regards,

Pam

>

>

> In a message dated 3/11/08 1:24:12 AM, p0etiss@... writes:

>

>

> > > Have you tried the Shriner's hospitals?

> >

>

> Dr. Betz at Shriners in Philadelphia is a well known pediatric

scoliosis

> surgeon. Shriners offers outstanding care and at no cost for kids

under 18 and

> until 21 if already a patient there. My son went there for 2nd

opinion

> appointments and it went very well although he had his surgery with

Dr. Lauerman at

> town University Hospital. We live in Northern Virginia and

being close

> to home was part of the consideration.

>

>

> **************

> It's Tax Time! Get tips,

> forms, and advice on AOL Money & amp; Finance.

>

> (http://money.aol.com/tax?NCID=aolprf00030000000001)

>

>

>

[Guest guest]

what is VBS exactly?

--- Pam <pamelicious2k4@...> wrote:

> Yes, Shriners Philly is fantastic. Dr. Betz

> developed VBS (vertebral

> stapling), and Shriners Philly is one of 10 US

> facilities currently

> providing VBS.

>

> For anyone seeking more info on stapling, a new site

> just came up

> (created by parents of VBS kids, mostly) ...

> http://www.vertebralstapling.com/

>

> At 17, your daughter is too old for stapling, but

> Betz's PA, Janet

> Cerrone could put you in touch with the proper

> resources at the

> hospital. She's a great source of information.

>

> Her contact info is 1-800-281-4050 or

> janetcerrone@... (she

> just added this new email specifically for parent

> inquiries - and

> she's wonderful!). BTW, she's been with involved

> with stapling since

> inception.

>

> Regards,

> Pam

>

>

>

> >

> >

> > In a message dated 3/11/08 1:24:12 AM, p0etiss@...

> writes:

> >

> >

> > > > Have you tried the Shriner's hospitals?

> > >

> >

> > Dr. Betz at Shriners in Philadelphia is a well

> known pediatric

> scoliosis

> > surgeon. Shriners offers outstanding care and at

> no cost for kids

> under 18 and

> > until 21 if already a patient there. My son went

> there for 2nd

> opinion

> > appointments and it went very well although he had

> his surgery with

> Dr. Lauerman at

> > town University Hospital. We live in

> Northern Virginia and

> being close

> > to home was part of the consideration.

> >

> >

> > **************

> > It's Tax Time! Get tips,

> > forms, and advice on AOL Money & amp; Finance.

> >

> >

> (http://money.aol.com/tax?NCID=aolprf00030000000001)

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

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[Guest guest]

Vertebral Stapling is best described as an internal brace (clips

between the vertebra, that unlike a normal fusion, allow for growth -

and even correction of the curve as the child grow).

Although the technique was devised by Dr. Betz at Shriners Philly,

there are now 10 facilities total (Shriners and other hospitals - I

believe I read 5 East Coast and 5 West Coast now) who perform VBS.

Details - including " ideal candidate " criteria is available on the

new site put together by one of the moms at www.vertebralstapling.com.

Another of the moms also put together an extremely moving Vertebral

Stapling Awareness video on youtube - http://www.youtube.com/watch?

v=n6GmX3K7FIs .

I'm friends with several of the kids' parents, and keep informed

(through them) of many other stapled kids. I can't say I know of any

who aren't doing fantastically (a large part of this is they have

the " ideal candidate " criteria so exact.

Best regards,

Pam

> > >

> > >

> > > In a message dated 3/11/08 1:24:12 AM, p0etiss@

> > writes:

> > >

> > >

> > > > > Have you tried the Shriner's hospitals?

> > > >

> > >

> > > Dr. Betz at Shriners in Philadelphia is a well

> > known pediatric

> > scoliosis

> > > surgeon. Shriners offers outstanding care and at

> > no cost for kids

> > under 18 and

> > > until 21 if already a patient there. My son went

> > there for 2nd

> > opinion

> > > appointments and it went very well although he had

> > his surgery with

> > Dr. Lauerman at

> > > town University Hospital. We live in

> > Northern Virginia and

> > being close

> > > to home was part of the consideration.

> > >

> > >

> > > **************

> > > It's Tax Time! Get tips,

> > > forms, and advice on AOL Money & amp; Finance.

> > >

> > >

> > (http://money.aol.com/tax?NCID=aolprf00030000000001)

> > >

> > >

> > > [Non-text portions of this message have been

> > removed]

> > >

> >

> >

> >

>

>

>

>

______________________________________________________________________

______________

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

Hello , welcome to our list. I am so sorry that your son has been diagnosed with JRA. So young and sweet and they hurt so much it is not fair. But then life is not fair and you will learn to deal with this. My daughter was diagnosed 2 1/2 years ago. She is on Naproxin, hydroxichloroquine and zantac. She is in pain most of the time, but it is pain that she has learned to deal with. Some days it is just aches but most days it hurts her to walk. She has more pain in her right knee then the rest of her body but she hurts in all joints depending on the day and the weather. I keep praying that the Naproxin will be all she needs and that they will not have to add one of the other drugs to her list. We have been told with "her kind" of JRA she should not be hurting all the time. I hope the Naproxin works for your son but I am not sure if there are any others on this list that only take Naproxin with good results. Hopefully some one else will chime in and be more encouraging for you then I am.

Veri & Jaye 14 poly

Hi new here

Hi my name is and my 4 yo son was diagnosed with JRA just 2 days ago. He has been

dealing with the pain for 2 years in his knees and ankles before we got the right referral to

the right doctor. I suspected this was the problem since RA has afflicted many members of

my family and his complaints seemed very similar to theirs. My husband doesn't want to talk

about this diagnosis at all. I need to talk and he doesn't want to talk. They only have my son

on Naproxen right now (oh..and zantac for the stomach upset from the naproxen). Has

anyone had success with just the naproxen or does everyone usually end up on stronger

meds i.e.methotrexate, etc?

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

Hi ,

My daughter started out on Naproxen only when she was 4 yrs old. That helped out tremendously. It helped her get out of the wheel chair, and minimize the pain. However, as time went on, they did change her meds. and added metotrexate along with naproxen. That worked for year, but we started having stomach problems from the naproxen, and so we took her off of that, and went to mtx ,and enbrel.

I am sorry your husband doesn't want to talk about this. Everyone deals with things in different ways. You have came to the right place! We all know what you are going through........

Helen

Hi new here

Hi my name is and my 4 yo son was diagnosed with JRA just 2 days ago. He has been dealing with the pain for 2 years in his knees and ankles before we got the right referral to the right doctor. I suspected this was the problem since RA has afflicted many members of my family and his complaints seemed very similar to theirs. My husband doesn't want to talk about this diagnosis at all. I need to talk and he doesn't want to talk. They only have my son on Naproxen right now (oh..and zantac for the stomach upset from the naproxen). Has anyone had success with just the naproxen or does everyone usually end up on stronger meds i.e.methotrexate, etc?

[Guest guest]

Hi and welcome to the group. Sorry you have to be here but this is a great way to get information and ask questions. Just wanted you to know that my son is on Naproxen and (crossing my fingers) he is doing very, very well. When he started he could not walk and his entire leg had swelled up with fluid from the arthritis in his knee. He just ran out the door like a bolt of lightening. So, at the moment, Naproxen is working. He is also on prescription Prilosec to stop any stomach irritation. His dose of Naproxen had to be increased a couple of times to find the right amount. It is my understanding that Naproxen only works well in certain types of

JRA. My son happens to be pauci and that is one type that responds well to the NSAIDs (non-steroid anti inflamiory drugs). Naproxen may do absolutely nothing for a child with another form of JRA. What I was told during our diagnosis process is that they want to start on the lowest level drug that will produce a response in that type of JRA and then move up from there. No sense hitting the big stuff right away if you can get a response from a lower level. I will add that he was montiored very often and still sees a rheum. monthly to check his progress.

As for you husband ... He may just need some time to process the information. Give him a little space and maybe in time he'll come around. I think as Moms we tend to forget our husbands may see their sons differently than we do. While we say the babies we cared for, I think they often see the men they will become. Also, men are "fixers". They see a problem, figure out what to do and make it better. This is something he cannot fix and cannot change and that has to be hard to deal with. My husband didn't say much either. He is a big, tall military guy and his whole life is about putting things in order and making it right. I think it was just painful to realize he wouldn't be able to help make this right. Until your husband comes around to talking, this is a wonderful place to vent. Someone has always gone

through whatever you have and you'll always find support here.

(Will pauci 9)

Hi new here

Hi my name is and my 4 yo son was diagnosed with JRA just 2 days ago. He has been dealing with the pain for 2 years in his knees and ankles before we got the right referral to the right doctor. I suspected this was the problem since RA has afflicted many members of my family and his complaints seemed very similar to theirs. My husband doesn't want to talk about this diagnosis at all. I need to talk and he doesn't want to talk. They only have my son on Naproxen right now (oh..and zantac for the stomach upset from the naproxen). Has anyone had success with just the naproxen or does everyone usually end up on stronger meds i.e.methotrexate, etc?

[Guest guest]

Hi ,

Welcome to the group. It took us a long time to get a diagnosis too.

My little has Poly JRA. She is now 22 months, and has had many

symptoms of JRA since birth. She started on Naproxen, but she did

plateau after about two months. The disease was flaring up again, and

many joints were involved. She started oral Methotrexate along with

her two-dose daily Naproxen. I was so scared to start the

Methotrexate, but it is helping. I hope your son has positive long

lasting results with the Naproxen.

I also want to tell you your not alone in the struggle for

communication with your husband. I went threw it for a long time with

mine. I actually dragged him to an informative dinner put on by the

Arthritis Foundation. He didn't want to be there, but he needed to be

aware of the ups and downs that go along with these disease. He is

coming around now, but it took about 10 months. Hang in there girl

Best Wishes,

Lani and (Poly)

>

>

> Hi and welcome to the group. Sorry you have to be here but

this is a great way to get information and ask questions. Just wanted

you to know that my son is on Naproxen and (crossing my fingers) he is

doing very, very well. When he started he could not walk and his

entire leg had swelled up with fluid from the arthritis in his knee.

He just ran out the door like a bolt of lightening. So, at the

moment, Naproxen is working. He is also on prescription Prilosec to

stop any stomach irritation. His dose of Naproxen had to be increased

a couple of times to find the right amount. It is my understanding

that Naproxen only works well in certain types of JRA. My son happens

to be pauci and that is one type that responds well to the NSAIDs

(non-steroid anti inflamiory drugs). Naproxen may do absolutely

nothing for a child with another form of JRA. What I was told during

our diagnosis process is that they want to start on the lowest level

> drug that will produce a response in that type of JRA and then move

up from there. No sense hitting the big stuff right away if you can

get a response from a lower level. I will add that he was montiored

very often and still sees a rheum. monthly to check his progress.

> As for you husband ... He may just need some time to process the

information. Give him a little space and maybe in time he'll come

around. I think as Moms we tend to forget our husbands may see their

sons differently than we do. While we say the babies we cared for, I

think they often see the men they will become. Also, men are

" fixers " . They see a problem, figure out what to do and make it

better. This is something he cannot fix and cannot change and that

has to be hard to deal with. My husband didn't say much either. He

is a big, tall military guy and his whole life is about putting things

in order and making it right. I think it was just painful to realize

he wouldn't be able to help make this right. Until your husband comes

around to talking, this is a wonderful place to vent. Someone has

always gone through whatever you have and you'll always find support

here.

> (Will pauci 9)

> Hi new here

>

>

> Hi my name is and my 4 yo son was diagnosed with JRA just 2

days ago. He has been

> dealing with the pain for 2 years in his knees and ankles before we

got the right referral to

> the right doctor. I suspected this was the problem since RA has

afflicted many members of

> my family and his complaints seemed very similar to theirs. My

husband doesn't want to talk

> about this diagnosis at all. I need to talk and he doesn't want to

talk. They only have my son

> on Naproxen right now (oh..and zantac for the stomach upset from the

naproxen). Has

> anyone had success with just the naproxen or does everyone usually

end up on stronger

> meds i.e.methotrexate, etc?

>

[Guest guest]

I am new here too. I just posted my intro thread. My son is Hayden

and he is 4 too. I hope naproxin works for you guys. We are jut about

to start the search for what works for mine.

Good luck,

Falen

>

> Hi my name is and my 4 yo son was diagnosed with JRA just 2

days ago. He has been

> dealing with the pain for 2 years in his knees and ankles before we

got the right referral to

> the right doctor. I suspected this was the problem since RA has

afflicted many members of

> my family and his complaints seemed very similar to theirs. My

husband doesn't want to talk

> about this diagnosis at all. I need to talk and he doesn't want

to talk. They only have my son

> on Naproxen right now (oh..and zantac for the stomach upset from

the naproxen). Has

> anyone had success with just the naproxen or does everyone usually

end up on stronger

> meds i.e.methotrexate, etc?

>

[Guest guest]

I have a 4 year old with JRA too. She was dx at age 2. There is a

process we all go through once we have that diagnosis. We go through

the stages of grief ( Kubler-Ross): first denial, then

sadness, anger, guilt, then finally acceptance. It's hard on a mother

and we usually are the " soldiers " that navigate our way through the

doctors appts. and blood tests, and internet searches, and still take

care of our families. It's a big weight to carry and is lonely no

matter who you are in the beginning.

I think what helped my husband join me in my " crusade " to help our

daughter is taking him to the JRA conference in PA last summer. It's

held every year and is in California very soon. If you can go, do!

As for the Naprosyn, it didn't work for us. It made her very sick and

didn't affecy the swelling or pain at all. But that's not to say don't

try it first. Definitely it's a good start and works well for many

children. But yes, we went to steroid injections, then ultimately MTX.

It's been our Godsend. Isabelle has been in remission since (almost a

year now). So don't be afraid to go that route if need be.

-Hadley (Isabelle, 4 yrs.)

>

> Hi my name is and my 4 yo son was diagnosed with JRA just 2

days ago. He has been

> dealing with the pain for 2 years in his knees and ankles before we

got the right referral to

> the right doctor. I suspected this was the problem since RA has

afflicted many members of

> my family and his complaints seemed very similar to theirs. My

husband doesn't want to talk

> about this diagnosis at all. I need to talk and he doesn't want to

talk. They only have my son

> on Naproxen right now (oh..and zantac for the stomach upset from the

naproxen). Has

> anyone had success with just the naproxen or does everyone usually

end up on stronger

> meds i.e.methotrexate, etc?

>

[Guest guest]

Hi … My daughter ne (7) was diagnosed last fall

with unspecified, likely systemic arthritis. She was put on motrin initially,

didn’t really help. Then naprocin, helped some. Then they added mtx to

nap and things really calmed down. She had a ton of stomach pain with the nap

so since she was doing so well we asked and then took a 2 month break – that

didn’t work out – and she is currently back on nap and mtx and

doing fine once again with prilosec added. Oh - she takes mtx orally. Her

next step is mtx injectables if needed. Best of luck to you and your little

guy!

Sherry

ne (7), systemic?

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[Guest guest]

I am so sorry to hear about your son. My daughter is 3 and was diag in Jan. We started out on the naproxen but it did not help her to much. We started the Methotrexate 2 weeks ago. The only thing that i can say is that the nsiad does not slow down the arthritis. It just helps with the pain and inflammation. My husband does not talk about it either. I think that they think that if the don't say it that it is not true. The people on this sight are great and you can pour your heart out and will get great relief from their wisdom. abi 3kjviers3 <jlviers@...> wrote: Hi my name is and my 4 yo son was diagnosed with JRA just 2 days ago. He has been dealing with the pain for 2 years in his knees and ankles before we got the right referral to the right doctor. I suspected this was the problem since RA has afflicted many members of my family and his complaints seemed very similar to theirs. My husband doesn't want to talk about this diagnosis at all. I need to talk and he doesn't want to talk. They only have my son on Naproxen right now (oh..and zantac for the stomach upset from the naproxen). Has anyone had success with just the naproxen or does everyone usually end up on stronger meds i.e.methotrexate, etc?

[Guest guest]

Hi again, I just wanted to thank everyone who responded. It really helps not

having to deal

with this alone. I am glad that I found this group. Thanks again.--

>

> Hi my name is and my 4 yo son was diagnosed with JRA just 2 days ago.

He has

been

> dealing with the pain for 2 years in his knees and ankles before we got the

right referral to

> the right doctor. I suspected this was the problem since RA has afflicted

many members of

> my family and his complaints seemed very similar to theirs. My husband

doesn't want to

talk

> about this diagnosis at all. I need to talk and he doesn't want to talk.

They only have my

son

> on Naproxen right now (oh..and zantac for the stomach upset from the

naproxen). Has

> anyone had success with just the naproxen or does everyone usually end up on

stronger

> meds i.e.methotrexate, etc?

>