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Simone,

Sorry you had so much pain!

Lori

I am Bippy on Twitter.

________________________________

From: Simone Egerter <sunshine9573@...>

Sent: Sat, August 14, 2010 7:48:25 PM

Subject: Re: Hip Pain

Hi Alana,

Mine felt like muscles or tendons tearing and burning, I couldn't move without

pain I saw an Orthopedist that works with MD patients 8 months ago, when I

showed him where the pain was, he knew exactly what was wrong. I had Bursitis

in my hip, he was the second Ortho I saw. The first one, 6 years before refused

to look at me, suggested fusing my hip and sent me home. I only saw the new one

because I got hooked on Vicodin and it wasn't helping anymore. The treatment

was a Cortizone shot directly into the Bursa sac, mine was so inflamed from

years of pain, he felt the needle go in. He'd said it might come back, but so

far so good....I think I covered everything...I've never had a fracture so I

can't answer that one.

Hope that helps and you get relief soon.

Simone

Website: http://simoneegerter.org

Blog: http://simsthoughts.blogspot.com

________________________________

From: althegrrl <alanarutht@...>

Sent: Sat, August 14, 2010 8:13:49 PM

Subject: Hip Pain

Hi Folks,

I'm having debilitating hip pain and am mostly having to stay in bed. Some

people here have been through this so I have a few questions:

- Was your pain in the nerves, muscules, tendons, and/or bone?

- Were you diagnosed? If so, how?

- What treatments have worked for you?

- How long did it take a fracture to heal?

Thank you for information you can offer.

Alana

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Hi there-

Just wanted to pipe in here -my daughter is only 8 and had started having hip

pain requiring daily oxycodone at about 7-1/2.  Last December the ortho

surgeon

in Madison released her adductor tendons in her hips as well as injected

steroids.  She had complete releif up until the last month or so.  There is

another girl we know who is 11 who had the same procedure and actually has a

port placed to receive morphine. We are also going to try a small dose morphine

coinciding with neurontin to see if we have the same luck with relief she has

because the oxycodone is no longer working and just making her extremely

nauseated and constipated.  We are going for more injections at her next rod

lengthening in November (provided we can hold off that long).  I

know you can

get the injections every 6 months, but they do lose effectiveness over time. 

Using an adductor pillow now that she can open her knees more has also

helped ...just wanted to share our experience as this seems to be a commonality

in SMA that needs to be dealt with.

 

Jen, Mom to my miracle, Jerika Jenae Lynn, 8 years old , SMA Type II

www.myspace.com/jenjerika

http://smaspace.ning.com/profile/JENBOLEN

www.smaspace.com

www.cursesma.org

www.smasupport.com

 

  " Our greatest weakness lies in giving up. The most certain way to succeed is

always to try just one more time. " - Edison

 

________________________________

From: Lori G <lorig713@...>

Sent: Sat, August 14, 2010 8:16:40 PM

Subject: Re: Hip Pain

 

Simone,

Sorry you had so much pain!

Lori

I am Bippy on Twitter.

________________________________

From: Simone Egerter <sunshine9573@...>

Sent: Sat, August 14, 2010 7:48:25 PM

Subject: Re: Hip Pain

Hi Alana,

Mine felt like muscles or tendons tearing and burning, I couldn't move without

pain I saw an Orthopedist that works with MD patients 8 months ago, when I

showed him where the pain was, he knew exactly what was wrong. I had Bursitis

in my hip, he was the second Ortho I saw. The first one, 6 years before refused

to look at me, suggested fusing my hip and sent me home. I only saw the new one

because I got hooked on Vicodin and it wasn't helping anymore. The treatment

was a Cortizone shot directly into the Bursa sac, mine was so inflamed from

years of pain, he felt the needle go in. He'd said it might come back, but so

far so good....I think I covered everything...I've never had a fracture so I

can't answer that one.

Hope that helps and you get relief soon.

Simone

Website: http://simoneegerter.org

Blog: http://simsthoughts.blogspot.com

________________________________

From: althegrrl <alanarutht@...>

Sent: Sat, August 14, 2010 8:13:49 PM

Subject: Hip Pain

Hi Folks,

I'm having debilitating hip pain and am mostly having to stay in bed. Some

people here have been through this so I have a few questions:

- Was your pain in the nerves, muscules, tendons, and/or bone?

- Were you diagnosed? If so, how?

- What treatments have worked for you?

- How long did it take a fracture to heal?

Thank you for information you can offer.

Alana

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Bernie takes a prescription anti-inflammatory for occasional hip pain -

he takes it for a few days till it gets better, then he can stop it.

Naproxen - because that's safer for kids.

bettylouo

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Hi Alana,

I'm sorry to hear this. :-(

Several years ago I had what I called " hip pain " but when I went to a

chiropractor I was told that it was actually my hamstring. Since my body can't

handle typical chiropractic manipulations he used a device called an actuator.

It stimulated the nerves to heal faster. He also told me to ice the area for 20

minutes every hour. It went away after two visits. A year later the pain

returned and after one session of the actuator it went away. No problems since.

~a

________________________________

From: althegrrl <alanarutht@...>

Sent: Sat, August 14, 2010 8:13:49 PM

Subject: Hip Pain

Hi Folks,

I'm having debilitating hip pain and am mostly having to stay in bed. Some

people here have been through this so I have a few questions:

- Was your pain in the nerves, muscules, tendons, and/or bone?

- Were you diagnosed? If so, how?

- What treatments have worked for you?

- How long did it take a fracture to heal?

Thank you for information you can offer.

Alana

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Thank you, everyone, for your thoughtful and detailed responses. I have writen

list for my doc that includes your experiences. My symptoms closely match what

Simone described.

Monday morning I will call my MD and make a same-day appointment. I will

suggest looking for a fracture or bursitis and show him my list. I cannot stay

in bed for the weeks it requires to heal bursitis, and the 5 mgs of oxycodone is

barely touching the pain when I'm moving or upin my chair. I hope treatment is

as straightforward as a cortizone injection.

Will keep you posted.

Signed,

High & Cranky

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Love and healing vibes to you, dear Alana! xox

Lori

________________________________

From: althegrrl <alanarutht@...>

Sent: Sun, August 15, 2010 6:03:31 PM

Subject: Re: Hip Pain

Thank you, everyone, for your thoughtful and detailed responses. I have writen

list for my doc that includes your experiences. My symptoms closely match what

Simone described.

Monday morning I will call my MD and make a same-day appointment. I will

suggest looking for a fracture or bursitis and show him my list. I cannot stay

in bed for the weeks it requires to heal bursitis, and the 5 mgs of oxycodone is

barely touching the pain when I'm moving or upin my chair. I hope treatment is

as straightforward as a cortizone injection.

Will keep you posted.

Signed,

High & Cranky

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Hi Alana,

Just wanted you to know I'm thinking of you. I have some hip pain too,

usually started by new PCAs who don't properly transfer & position, but it's

minor pain compared to yours and I don't know of any solutions to offer.

Please keep us posted.

Love,

N

On 8/15/10 6:04 PM, " althegrrl " <alanarutht@...> wrote:

>

> Thank you, everyone, for your thoughtful and detailed responses. I have

> writen list for my doc that includes your experiences. My symptoms closely

> match what Simone described.

>

> Monday morning I will call my MD and make a same-day appointment. I will

> suggest looking for a fracture or bursitis and show him my list. I cannot

> stay in bed for the weeks it requires to heal bursitis, and the 5 mgs of

> oxycodone is barely touching the pain when I'm moving or upin my chair. I

> hope treatment is as straightforward as a cortizone injection.

>

> Will keep you posted.

>

> Signed,

> High & Cranky

>

>

>

> ------------------------------------

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Hi Al,

I've had severe pain in my hip in a few years. It is exacerbated from prolonged

upright position or applying pressure to the hip area. It feels like a very hot

burning sensation and at its worst can travel down my thigh and leg. Two years

ago I saw a specialist out of Stanford who diagnosed me with bursitis. He

prescribed a 5-day course of steroid treatment and the pain was gone. I changed

begging and wheelchair cushions to provide more comfort and support. The pain

starts up every time I have to sleep in a hotel or sit in a chair other than my

daily chair for a long period of time. It's another simple course of steroid to

eliminate the pain.

Best of luck and hope you're pain free soon!

<3Kendra

>

> Hi Folks,

>

> I'm having debilitating hip pain and am mostly having to stay in bed. Some

people here have been through this so I have a few questions:

>

> - Was your pain in the nerves, muscules, tendons, and/or bone?

> - Were you diagnosed? If so, how?

> - What treatments have worked for you?

> - How long did it take a fracture to heal?

>

> Thank you for information you can offer.

> Alana

>

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God, I hope she does not have to endure anymore surgeries. Please update when you know more. I am thinking of you both and saying prayers. Thanks for letting us know. Joanmom to Hayden 339 degrees down from 62After 4 casts, now in a brace 23 hours/dayTreated at ish Rite Hospital Dallas, TX

From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Mon, August 16, 2010 9:12:01 AMSubject: hip pain

Well, here we go again....Liv has been complaining of hip pain on bothsides for the last few weeks. To recap, my daughter had the dual Veptrhybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After acontinual assortment of complications, we opted to remove at age 12. Unfortunately, during the removal procedure I was informed that the metalhooks/attachment anchors had eroded significantly through her ilium and Ihad a pretty big decision to make.....Crack her pelvis to remove metal orleave in....I was told that it shouldnt cause pain or problems so Idecided to leave in as she was already undergoing a fairly largeprocedure.....Well, she has been complaining of hip pain for a few weeks. I ask where and she says its where the metal is....Im sick to mystomach...How much more can my child take? How much more can I take? NOTMUCH!!!!! PIS that has not been treated early is a

devistatingcondition...Theres no two ways about it. I'll let you all know what Ifind out and if you dont see me on CAST for a bit, please just call as itshard to keep up effectively with this awesome group anymore.Love,HRH

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Me too!!! PLEASE, PLEASE, PLEASE no more. If she does go into surgery, I

suspect it wont be an easy one. Not that there is such a thing....I

should probably hop on the veptr site to see who has gone through it and

what to expect....But, Im just not ready. I need to absorb this reality

and get strong again...I love you Joanie and know you understand my never

ending fears.....Thanks my friend.

HRH

> God, I hope she does not have to endure anymore surgeries. Please update

> when

> you know more. I am thinking of you both and saying prayers. Thanks for

> letting

> us know.

>

>  Joan

> mom to Hayden 3

> 39 degrees down from 62

> After 4 casts, now in a brace 23 hours/day

> Treated at ish Rite Hospital

> Dallas, TX

>

>

>

>

> ________________________________

> From: " heather@... " <heather@...>

> infantile scoliosis treatment

> Sent: Mon, August 16, 2010 9:12:01 AM

> Subject: hip pain

>

>  

> Well, here we go again....Liv has been complaining of hip pain on both

> sides for the last few weeks. To recap, my daughter had the dual Veptr

> hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a

> continual assortment of complications, we opted to remove at age 12.

> Unfortunately, during the removal procedure I was informed that the metal

> hooks/attachment anchors had eroded significantly through her ilium and I

> had a pretty big decision to make.....Crack her pelvis to remove metal or

> leave in....I was told that it shouldnt cause pain or problems so I

> decided to leave in as she was already undergoing a fairly large

> procedure.....Well, she has been complaining of hip pain for a few weeks.

> I ask where and she says its where the metal is....Im sick to my

> stomach...How much more can my child take? How much more can I take? NOT

> MUCH!!!!! PIS that has not been treated early is a devistating

> condition...Theres no two ways about it. I'll let you all know what I

> find out and if you dont see me on CAST for a bit, please just call as its

> hard to keep up effectively with this awesome group anymore.

> Love,

> HRH

>

>

>

>

>

>

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It really is NEVER ENDING and it SUCKS. Sometimes less information is better for a while. Much love to you both. Joanmom to Hayden 339 degrees down from 62After 4 casts, now in a brace 23 hours/dayTreated at ish Rite Hospital Dallas, TX

From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Mon, August 16, 2010 9:53:21 AMSubject: Re: hip pain

Me too!!! PLEASE, PLEASE, PLEASE no more. If she does go into surgery, Isuspect it wont be an easy one. Not that there is such a thing....Ishould probably hop on the veptr site to see who has gone through it andwhat to expect....But, Im just not ready. I need to absorb this realityand get strong again...I love you Joanie and know you understand my neverending fears.....Thanks my friend.HRH> God, I hope she does not have to endure anymore surgeries. Please update> when> you know more. I am thinking of you both and saying prayers. Thanks for> letting> us know.>>  Joan> mom to Hayden 3> 39 degrees down from 62> After 4 casts, now in a brace 23 hours/day> Treated at ish Rite Hospital> Dallas, TX>>>>> ________________________________> From: "heather@..." <heather@...>> infantile scoliosis treatment > Sent: Mon, August 16, 2010 9:12:01 AM> Subject: hip pain>>  > Well, here we go again....Liv has been complaining of hip pain on both> sides for the last few weeks. To recap, my daughter had the dual Veptr> hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a> continual assortment of complications, we opted to remove at age 12.>

Unfortunately, during the removal procedure I was informed that the metal> hooks/attachment anchors had eroded significantly through her ilium and I> had a pretty big decision to make.....Crack her pelvis to remove metal or> leave in....I was told that it shouldnt cause pain or problems so I> decided to leave in as she was already undergoing a fairly large> procedure.....Well, she has been complaining of hip pain for a few weeks.> I ask where and she says its where the metal is....Im sick to my> stomach...How much more can my child take? How much more can I take? NOT> MUCH!!!!! PIS that has not been treated early is a devistating> condition...Theres no two ways about it. I'll let you all know what I> find out and if you dont see me on CAST for a bit, please just call as its> hard to keep up effectively with this awesome group anymore.> Love,>

HRH>>>>>>

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So sorry . I hate that for so many of our kids the path is long and hard. Let us know what you find out.

Jane

From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Mon, August 16, 2010 7:12:01 AMSubject: hip pain

Well, here we go again....Liv has been complaining of hip pain on bothsides for the last few weeks. To recap, my daughter had the dual Veptrhybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After acontinual assortment of complications, we opted to remove at age 12. Unfortunately, during the removal procedure I was informed that the metalhooks/attachment anchors had eroded significantly through her ilium and Ihad a pretty big decision to make.....Crack her pelvis to remove metal orleave in....I was told that it shouldnt cause pain or problems so Idecided to leave in as she was already undergoing a fairly largeprocedure.....Well, she has been complaining of hip pain for a few weeks. I ask where and she says its where the metal is....Im sick to mystomach...How much more can my child take? How much more can I take? NOTMUCH!!!!! PIS that has not been treated early is a

devistatingcondition...Theres no two ways about it. I'll let you all know what Ifind out and if you dont see me on CAST for a bit, please just call as itshard to keep up effectively with this awesome group anymore.Love,HRH

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,

This is so unfair and just breaks my heart. I pray somehow that is not the

cause of her pain. Please let us know what you find out.

Love to you both,

and Isaiah

heather@... wrote:

>Well, here we go again....Liv has been complaining of hip pain on both

>sides for the last few weeks. To recap, my daughter had the dual Veptr

>hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a

>continual assortment of complications, we opted to remove at age 12.

>Unfortunately, during the removal procedure I was informed that the metal

>hooks/attachment anchors had eroded significantly through her ilium and I

>had a pretty big decision to make.....Crack her pelvis to remove metal or

>leave in....I was told that it shouldnt cause pain or problems so I

>decided to leave in as she was already undergoing a fairly large

>procedure.....Well, she has been complaining of hip pain for a few weeks.

>I ask where and she says its where the metal is....Im sick to my

>stomach...How much more can my child take? How much more can I take? NOT

>MUCH!!!!! PIS that has not been treated early is a devistating

>condition...Theres no two ways about it. I'll let you all know what I

>find out and if you dont see me on CAST for a bit, please just call as its

>hard to keep up effectively with this awesome group anymore.

>Love,

>HRH

>

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I will for sure. Ive been trying to hide from this for weeks but just

cant any longer...I just shot an email to her doc and expect to hear

something soon....Other than that, I must remind myself that we have all

done the best we possibly could for my girl and that if anyone can handle

this crap, she can.... The thought of telling her that the s hooks will be

scraped out of her bones and that her pelvis will be cracked is just too

much (dont know if this will happen and must have dialogue with her doc

first)....But she'll demand to know everything as she is no longer a lil

girl...Shes 12 and started the 7th grade today..Im gonna have to discuss

all of this with a medical & mental professional as I dont want to give

her too much info....could be detrimental??? before surgery....I just dont

know. Dealing with a teen w/ scoli is a completely different ballgame.

HRH

> So sorry .  I hate that for so many of our kids the path is long

> and

> hard.  Let us know what you find out.

>  

> Jane

>

>

>

>

> ________________________________

> From: " heather@... " <heather@...>

> infantile scoliosis treatment

> Sent: Mon, August 16, 2010 7:12:01 AM

> Subject: hip pain

>

>  

> Well, here we go again....Liv has been complaining of hip pain on both

> sides for the last few weeks. To recap, my daughter had the dual Veptr

> hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a

> continual assortment of complications, we opted to remove at age 12.

> Unfortunately, during the removal procedure I was informed that the metal

> hooks/attachment anchors had eroded significantly through her ilium and I

> had a pretty big decision to make.....Crack her pelvis to remove metal or

> leave in....I was told that it shouldnt cause pain or problems so I

> decided to leave in as she was already undergoing a fairly large

> procedure.....Well, she has been complaining of hip pain for a few weeks.

> I ask where and she says its where the metal is....Im sick to my

> stomach...How much more can my child take? How much more can I take? NOT

> MUCH!!!!! PIS that has not been treated early is a devistating

> condition...Theres no two ways about it. I'll let you all know what I

> find out and if you dont see me on CAST for a bit, please just call as its

> hard to keep up effectively with this awesome group anymore.

> Love,

> HRH

>

>

>

>

>

>

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,

I am sorry to hear all this. I will be thinking about you both and praying.

I am no where near going through what you have with Olivia, but I know how different it is dealing with as a five year old with scoli vs dealing with him as a baby. He has a voice! And I must listen within reason to my child. It's hard.

Being a Momma is tough sometimes.

((HUGS)) to you. TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, TexasSeries of 6 casts for 14 months followed by bracing since September 2007You can read 's story at.... http://www.infantilescoliosis.org/stories.html

From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Mon, August 16, 2010 11:50:28 AMSubject: Re: hip pain

I will for sure. Ive been trying to hide from this for weeks but justcant any longer...I just shot an email to her doc and expect to hearsomething soon....Other than that, I must remind myself that we have alldone the best we possibly could for my girl and that if anyone can handlethis crap, she can.... The thought of telling her that the s hooks will bescraped out of her bones and that her pelvis will be cracked is just toomuch (dont know if this will happen and must have dialogue with her docfirst)....But she'll demand to know everything as she is no longer a lilgirl...Shes 12 and started the 7th grade today..Im gonna have to discussall of this with a medical & mental professional as I dont want to giveher too much info....could be detrimental??? before surgery....I just dontknow. Dealing with a teen w/ scoli is a completely different ballgame.HRH> So sorry . I hate

that for so many of our kids the path is long> and> hard. Let us know what you find out.>  > Jane>>>>> ________________________________> From: "heather@..." <heather@...>> infantile scoliosis treatment > Sent: Mon, August 16, 2010 7:12:01 AM> Subject: hip pain>>  > Well, here we go again....Liv has been complaining of hip pain on both>

sides for the last few weeks. To recap, my daughter had the dual Veptr> hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a> continual assortment of complications, we opted to remove at age 12.> Unfortunately, during the removal procedure I was informed that the metal> hooks/attachment anchors had eroded significantly through her ilium and I> had a pretty big decision to make.....Crack her pelvis to remove metal or> leave in....I was told that it shouldnt cause pain or problems so I> decided to leave in as she was already undergoing a fairly large> procedure.....Well, she has been complaining of hip pain for a few weeks.> I ask where and she says its where the metal is....Im sick to my> stomach...How much more can my child take? How much more can I take? NOT> MUCH!!!!! PIS that has not been treated early is a devistating> condition...Theres no two

ways about it. I'll let you all know what I> find out and if you dont see me on CAST for a bit, please just call as its> hard to keep up effectively with this awesome group anymore.> Love,> HRH>>>>>>

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I'm so sorry . I will say a special prayer for you Liv.Sent from my BlackBerry® by Boost MobileFrom: heather@...Sender: infantile scoliosis treatment Date: Mon, 16 Aug 2010 12:50:28 -0400<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: hip pain I will for sure. Ive been trying to hide from this for weeks but justcant any longer...I just shot an email to her doc and expect to hearsomething soon....Other than that, I must remind myself that we have alldone the best we possibly could for my girl and that if anyone can handlethis crap, she can.... The thought of telling her that the s hooks will bescraped out of her bones and that her pelvis will be cracked is just toomuch (dont know if this will happen and must have dialogue with her docfirst)....But she'll demand to know everything as she is no longer a lilgirl...Shes 12 and started the 7th grade today..Im gonna have to discussall of this with a medical & mental professional as I dont want to giveher too much info....could be detrimental??? before surgery....I just dontknow. Dealing with a teen w/ scoli is a completely different ballgame.HRH> So sorry .  I hate that for so many of our kids the path is long> and> hard.  Let us know what you find out.>  > Jane>>>>>________________________________> From: " heather@... " <heather@...>> infantile scoliosis treatment > Sent: Mon, August 16, 2010 7:12:01 AM> Subject: hip pain>>  > Well, here we go again....Liv has been complaining of hip pain on both> sides for the last few weeks. To recap, my daughter had the dual Veptr> hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a> continual assortment of complications, we opted to remove at age 12.> Unfortunately, during the removal procedure I was informed that the metal> hooks/attachment anchors had eroded significantly through her ilium and I> had a pretty big decision to make.....Crack her pelvis to remove metal or> leave in....I was told that it shouldnt cause pain or problems so I> decided to leave in as she was already undergoing a fairly large> procedure.....Well, she has been complaining of hip pain for a few weeks.> I ask where and she says its where the metal is....Im sick to my> stomach...How much more can my child take? How much more can I take? NOT> MUCH!!!!! PIS that has not been treated early is a devistating> condition...Theres no two ways about it. I'll let you all know what I> find out and if you dont see me on CAST for a bit, please just call as its> hard to keep up effectively with this awesome group anymore.> Love,> HRH>>>>>>

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So sorry to hear about the hip pain she is having especially after all she has already endured. I will be praying everything is ok! Patty, mom of Isabella, 2 years old, in 6th scoli cast (Rochester) & mom to & EvanFrom: "heather@..." <heather@...>infantile scoliosis treatment Sent: Mon, August 16, 2010 10:12:01 AMSubject: hip pain

Well, here we go again....Liv has been complaining of hip pain on both

sides for the last few weeks. To recap, my daughter had the dual Veptr

hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a

continual assortment of complications, we opted to remove at age 12.

Unfortunately, during the removal procedure I was informed that the metal

hooks/attachment anchors had eroded significantly through her ilium and I

had a pretty big decision to make.....Crack her pelvis to remove metal or

leave in....I was told that it shouldnt cause pain or problems so I

decided to leave in as she was already undergoing a fairly large

procedure.....Well, she has been complaining of hip pain for a few weeks.

I ask where and she says its where the metal is....Im sick to my

stomach...How much more can my child take? How much more can I take? NOT

MUCH!!!!! PIS that has not been treated early is a devistating

condition...Theres no two ways about it. I'll let you all know what I

find out and if you dont see me on CAST for a bit, please just call as its

hard to keep up effectively with this awesome group anymore.

Love,

HRH

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Hi ,

I haven't been on here for months, but by chance, saw your post. We'll keep you

in our prayers that the pain will go away and any type of surgery with hips will

not be necessary!!!

Much love,

, mom to , California

>

> >Well, here we go again....Liv has been complaining of hip pain on both

> >sides for the last few weeks. To recap, my daughter had the dual Veptr

> >hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a

> >continual assortment of complications, we opted to remove at age 12.

> >Unfortunately, during the removal procedure I was informed that the metal

> >hooks/attachment anchors had eroded significantly through her ilium and I

> >had a pretty big decision to make.....Crack her pelvis to remove metal or

> >leave in....I was told that it shouldnt cause pain or problems so I

> >decided to leave in as she was already undergoing a fairly large

> >procedure.....Well, she has been complaining of hip pain for a few weeks.

> >I ask where and she says its where the metal is....Im sick to my

> >stomach...How much more can my child take? How much more can I take? NOT

> >MUCH!!!!! PIS that has not been treated early is a devistating

> >condition...Theres no two ways about it. I'll let you all know what I

> >find out and if you dont see me on CAST for a bit, please just call as its

> >hard to keep up effectively with this awesome group anymore.

> >Love,

> >HRH

> >

>

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Hi ,

I haven't been on here for months, but by chance, saw your post. We'll keep you

in our prayers that the pain will go away and any type of surgery with hips will

not be necessary!!!

Much love,

, mom to , California

>

> >Well, here we go again....Liv has been complaining of hip pain on both

> >sides for the last few weeks. To recap, my daughter had the dual Veptr

> >hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a

> >continual assortment of complications, we opted to remove at age 12.

> >Unfortunately, during the removal procedure I was informed that the metal

> >hooks/attachment anchors had eroded significantly through her ilium and I

> >had a pretty big decision to make.....Crack her pelvis to remove metal or

> >leave in....I was told that it shouldnt cause pain or problems so I

> >decided to leave in as she was already undergoing a fairly large

> >procedure.....Well, she has been complaining of hip pain for a few weeks.

> >I ask where and she says its where the metal is....Im sick to my

> >stomach...How much more can my child take? How much more can I take? NOT

> >MUCH!!!!! PIS that has not been treated early is a devistating

> >condition...Theres no two ways about it. I'll let you all know what I

> >find out and if you dont see me on CAST for a bit, please just call as its

> >hard to keep up effectively with this awesome group anymore.

> >Love,

> >HRH

> >

>

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Ugh, - so sorry to hear this. I will be thinking of you and Liv, as

always!!!

Big Hugs,

>

> Well, here we go again....Liv has been complaining of hip pain on both

> sides for the last few weeks. To recap, my daughter had the dual Veptr

> hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a

> continual assortment of complications, we opted to remove at age 12.

> Unfortunately, during the removal procedure I was informed that the metal

> hooks/attachment anchors had eroded significantly through her ilium and I

> had a pretty big decision to make.....Crack her pelvis to remove metal or

> leave in....I was told that it shouldnt cause pain or problems so I

> decided to leave in as she was already undergoing a fairly large

> procedure.....Well, she has been complaining of hip pain for a few weeks.

> I ask where and she says its where the metal is....Im sick to my

> stomach...How much more can my child take? How much more can I take? NOT

> MUCH!!!!! PIS that has not been treated early is a devistating

> condition...Theres no two ways about it. I'll let you all know what I

> find out and if you dont see me on CAST for a bit, please just call as its

> hard to keep up effectively with this awesome group anymore.

> Love,

> HRH

>

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Ugh, - so sorry to hear this. I will be thinking of you and Liv, as

always!!!

Big Hugs,

>

> Well, here we go again....Liv has been complaining of hip pain on both

> sides for the last few weeks. To recap, my daughter had the dual Veptr

> hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a

> continual assortment of complications, we opted to remove at age 12.

> Unfortunately, during the removal procedure I was informed that the metal

> hooks/attachment anchors had eroded significantly through her ilium and I

> had a pretty big decision to make.....Crack her pelvis to remove metal or

> leave in....I was told that it shouldnt cause pain or problems so I

> decided to leave in as she was already undergoing a fairly large

> procedure.....Well, she has been complaining of hip pain for a few weeks.

> I ask where and she says its where the metal is....Im sick to my

> stomach...How much more can my child take? How much more can I take? NOT

> MUCH!!!!! PIS that has not been treated early is a devistating

> condition...Theres no two ways about it. I'll let you all know what I

> find out and if you dont see me on CAST for a bit, please just call as its

> hard to keep up effectively with this awesome group anymore.

> Love,

> HRH

>

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I am so sorry to hear this . So, what is the next step? I hope she doesn't have to have another surgical procedure. She's been through so much already. :( Noelle (12-2-01)Ian (8-15-04) From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Mon, August 16, 2010 10:12:01 AMSubject: hip pain

Well, here we go again....Liv has been complaining of hip pain on both

sides for the last few weeks. To recap, my daughter had the dual Veptr

hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a

continual assortment of complications, we opted to remove at age 12.

Unfortunately, during the removal procedure I was informed that the metal

hooks/attachment anchors had eroded significantly through her ilium and I

had a pretty big decision to make.....Crack her pelvis to remove metal or

leave in....I was told that it shouldnt cause pain or problems so I

decided to leave in as she was already undergoing a fairly large

procedure.....Well, she has been complaining of hip pain for a few weeks.

I ask where and she says its where the metal is....Im sick to my

stomach...How much more can my child take? How much more can I take? NOT

MUCH!!!!! PIS that has not been treated early is a devistating

condition...Theres no two ways about it. I'll let you all know what I

find out and if you dont see me on CAST for a bit, please just call as its

hard to keep up effectively with this awesome group anymore.

Love,

HRH

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You will be in my thoughts..hoping the doctors find a solution that does not

cause your daughter(and you) anymore pain..

Ami~

>

> I am so sorry to hear this . So, what is the next step? I hope she

> doesn't have to have another surgical procedure. She's been through so much

> already. :(

>

>

> Noelle (12-2-01)

> Ian (8-15-04)

>

>

>

>

>

>

> ________________________________

> From: " heather@... " <heather@...>

> infantile scoliosis treatment

> Sent: Mon, August 16, 2010 10:12:01 AM

> Subject: hip pain

>

>

> Well, here we go again....Liv has been complaining of hip pain on both

> sides for the last few weeks. To recap, my daughter had the dual Veptr

> hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a

> continual assortment of complications, we opted to remove at age 12.

> Unfortunately, during the removal procedure I was informed that the metal

> hooks/attachment anchors had eroded significantly through her ilium and I

> had a pretty big decision to make.....Crack her pelvis to remove metal or

> leave in....I was told that it shouldnt cause pain or problems so I

> decided to leave in as she was already undergoing a fairly large

> procedure.....Well, she has been complaining of hip pain for a few weeks.

> I ask where and she says its where the metal is....Im sick to my

> stomach...How much more can my child take? How much more can I take? NOT

> MUCH!!!!! PIS that has not been treated early is a devistating

> condition...Theres no two ways about it. I'll let you all know what I

> find out and if you dont see me on CAST for a bit, please just call as its

> hard to keep up effectively with this awesome group anymore.

> Love,

> HRH

>

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,

I'm so sorry that you and your daughter have had such a long painful journey.

Please keep us informed about what you find out.

mom to Audrey, 3rd cast, SLC

>

> Well, here we go again....Liv has been complaining of hip pain on both

> sides for the last few weeks. To recap, my daughter had the dual Veptr

> hybrid 1 & 2 attached at the iliac crests for approx. 4 yrs...After a

> continual assortment of complications, we opted to remove at age 12.

> Unfortunately, during the removal procedure I was informed that the metal

> hooks/attachment anchors had eroded significantly through her ilium and I

> had a pretty big decision to make.....Crack her pelvis to remove metal or

> leave in....I was told that it shouldnt cause pain or problems so I

> decided to leave in as she was already undergoing a fairly large

> procedure.....Well, she has been complaining of hip pain for a few weeks.

> I ask where and she says its where the metal is....Im sick to my

> stomach...How much more can my child take? How much more can I take? NOT

> MUCH!!!!! PIS that has not been treated early is a devistating

> condition...Theres no two ways about it. I'll let you all know what I

> find out and if you dont see me on CAST for a bit, please just call as its

> hard to keep up effectively with this awesome group anymore.

> Love,

> HRH

>

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