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i have a 9 year old that has had seizures since she has been 6 months old

and the dr's in my state are puzzles they don't understand what is going on

with her they get one type of seizure taken care of and she starts have

another,she is on meds for it now to treat the grand mals but the dr's are

unsure what to do for the other types,so they just let her have them,there

is noone else in either sides to have seizures so it can't of come from the

family and iam at the end of the line trying to figure out how,why and what

i can do ,i talk to every dr i can and read everything new i can,but now iam

at the point of just living with it!!

glenda

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Your daugthers experience is what I would love to have happen with

me. I'm living on my own and struggling with all the AEDs. My hope is

that if I get VNS it will cut down on seizures enough that I can go

off my meds and get rid of those darned side effects!

> gina,

> the drop in seizures are great and iam really going to look into

this,i

> would much rather her be on that's that are good for her and not

things that

> iam not sure in the long run will not harm her!!

> glenda

> [ ] Re: iam new

> >

> > i have a 9 year old that has had seizures since she has been 6

months old

> > and the dr's in my state are puzzles they don't understand what

is going

> on

> > with her they get one type of seizure taken care of and she

starts have

> > another,she is on meds for it now to treat the grand mals but the

dr's are

> > unsure what to do for the other types,so they just let her have

them,there

> > is noone else in either sides to have seizures so it can't of

come from

> the

> > family and iam at the end of the line trying to figure out

how,why and

> what

> > i can do ,i talk to every dr i can and read everything new i

can,but now

> iam

> > at the point of just living with it!!

> > glenda

> >

> >

> >

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  • 4 years later...

Your docs have obviously not had chondromalacia. It hurts if you do things that

cause the lesion to rub against the bone, and it may hurt if you sit too long

with your knees bent, where the lesion is pressed up against the bone. The

irritation from this may cause your knee to fill with fluid, and that alone can

hurt a lot.

Have you tried Synvisc? It helped me for at least a year. See if you can get

someone to drain your knee & inject Synvisc.

Ann

Iam new

Hi my name is Faith and i have had chondromalacia for 4 years now.it

has been so painful and it has not gone away.I have chronic pain with

itand i have to take pain meds everyday.my docs say that it is rare to

have chronic pain with it.that most pepole have it from time to time.so

has any of you had this also pain with it that stays.I can not stand to

long or sit and hard floors are a killer.i have also tried many things

but can not seem to get rid of it.i just want to know that iam not

alone and if anyone else has had the same experince with chondromalcia.

take care everyone. Faith

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I have had it for the last four years too. I have pain every day. I have

had two chondroplasty. But neither did any good. My first OS I did not

trust, But now I have a very caring OS. Both OS did the Chondroplasty,

because they were going in to fix my Mensicus. My second OS is trying

everything he can to help. I also have pain in the back of my knee, which

he thinks is coming from my back. He has sent me to another OS that works

on back. The back OS is also friendly and understanding. My OS said that

he would do anything he can to get me out of pain.

From: " steptoegirl " <steptoegirl@...>

Reply-chondromalacia treatment

chondromalacia treatment

Subject: Iam new

Date: Sun, 09 Sep 2007 21:51:33 -0000

Hi my name is Faith and i have had chondromalacia for 4 years now.it

has been so painful and it has not gone away.I have chronic pain with

itand i have to take pain meds everyday.my docs say that it is rare to

have chronic pain with it.that most pepole have it from time to time.so

has any of you had this also pain with it that stays.I can not stand to

long or sit and hard floors are a killer.i have also tried many things

but can not seem to get rid of it.i just want to know that iam not

alone and if anyone else has had the same experince with chondromalcia.

take care everyone. Faith

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I think you will find lots of people here have pain every day. Sorry to hear

you're one of them. Keep trying to find ways out of it, don't give up! That

seems to be the lesson learned here.

Philip - http://xcskiwinn.org/community/blogs/panmanphil

Iam new

Hi my name is Faith and i have had chondromalacia for 4 years now.it

has been so painful and it has not gone away.I have chronic pain with

itand i have to take pain meds everyday.my docs say that it is rare to

have chronic pain with it.that most pepole have it from time to time.so

has any of you had this also pain with it that stays.I can not stand to

long or sit and hard floors are a killer.i have also tried many things

but can not seem to get rid of it.i just want to know that iam not

alone and if anyone else has had the same experince with chondromalcia.

take care everyone. Faith

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Hi Faith,

In my opinion, your doctor doesn't know what he is talking about. I

have Chondramacia in both knees and they NEVER stop hurting. In

April I had a lateral release and an ACL repair done on my Left knee

due to a workers comp injury 2 days after Christmas. The MRI showed

a menescus tear, so that wasn't accurate or reliable. It did however

show stage 3 chondramalacia. My knee still crackles and pops, but

not as much as my right one; will have to have it done when I get

insurance again. I ended up quitting that job due to harrassment. I

also have Fibromyalgia and Chronic Fatigue, so none of that helps.

But I know the difference between my knee pain and the rest. Both of

my knees are shot. I can not walk up or down stairs without

assistance, can't carry a lot of weight, can't sit or stand for any

length of time. I just turned 44. I feel I'm too young for all of

this. But I have learned to modify and do the best I can, keep a

positive attitude.

Boy did I get off track. I'm sorry. I can only speak for myself, but

when I walk, everyone hears my knee's, especially my right one,

crackling and popping. Sometimes the pain is so bad, I am up all

night. You need to get a 2nd opinion. I'm really sorry you're having

such a bad experience. There is a lot of information out there on

this condition, so educate yourself as well.

Good Luck and keep us posted.

Darlena

>

> Hi my name is Faith and i have had chondromalacia for 4 years

now.it

> has been so painful and it has not gone away.I have chronic pain

with

> itand i have to take pain meds everyday.my docs say that it is

rare to

> have chronic pain with it.that most pepole have it from time to

time.so

> has any of you had this also pain with it that stays.I can not

stand to

> long or sit and hard floors are a killer.i have also tried many

things

> but can not seem to get rid of it.i just want to know that iam not

> alone and if anyone else has had the same experince with

chondromalcia.

> take care everyone. Faith

>

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Darlena,

I agree with you-I have a great doctor but she never pays much attention to

this Chondro. I'm 43 and my pain never stops either. Its always with you and

people just don't understand. I used to wake up crying from the pain.

However, like I indicated in my first message the other day, the proper

exercises do help alot. I also bought some homeopathic drops that seem to

keep the inflammation down a bit. They're called Aspen Arthro and I buy them

off of vitalbotanicals.com.

Darlena, you're only 44-you have to tackle this. The manager at the gym I

joined said she saw a woman our age end up walking with a cane after 10

years of osteoarthritis of the knees. If you can't go for personal training

at a gym, check the arthritis society web sites. They pretty much have the

same exercises I got given to me at the gym. I can give you more details of

the exercises if you'd like.

Lucy

Re: Iam new

Hi Faith,

In my opinion, your doctor doesn't know what he is talking about. I

have Chondramacia in both knees and they NEVER stop hurting. In

April I had a lateral release and an ACL repair done on my Left knee

due to a workers comp injury 2 days after Christmas. The MRI showed

a menescus tear, so that wasn't accurate or reliable. It did however

show stage 3 chondramalacia. My knee still crackles and pops, but

not as much as my right one; will have to have it done when I get

insurance again. I ended up quitting that job due to harrassment. I

also have Fibromyalgia and Chronic Fatigue, so none of that helps.

But I know the difference between my knee pain and the rest. Both of

my knees are shot. I can not walk up or down stairs without

assistance, can't carry a lot of weight, can't sit or stand for any

length of time. I just turned 44. I feel I'm too young for all of

this. But I have learned to modify and do the best I can, keep a

positive attitude.

Boy did I get off track. I'm sorry. I can only speak for myself, but

when I walk, everyone hears my knee's, especially my right one,

crackling and popping. Sometimes the pain is so bad, I am up all

night. You need to get a 2nd opinion. I'm really sorry you're having

such a bad experience. There is a lot of information out there on

this condition, so educate yourself as well.

Good Luck and keep us posted.

Darlena

>

> Hi my name is Faith and i have had chondromalacia for 4 years

now.it

> has been so painful and it has not gone away.I have chronic pain

with

> itand i have to take pain meds everyday.my docs say that it is

rare to

> have chronic pain with it.that most pepole have it from time to

time.so

> has any of you had this also pain with it that stays.I can not

stand to

> long or sit and hard floors are a killer.i have also tried many

things

> but can not seem to get rid of it.i just want to know that iam not

> alone and if anyone else has had the same experince with

chondromalcia.

> take care everyone. Faith

>

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Amen to all of this. I'm 37 and I'd gotten to the point where I was living

with a constant pain in my right knee of a 3-4 on a scale of 10, and

probably a 2 in my left. Then, if I did ANYTHING from walking a museum

exhibit to god forbid playing a pickup game of basketball or volleyball with

my daughter's team, I'd be running an 6-8 for days to weeks. I honestly

don't remember what it's like to NOT hurt in my knees. CP is a chronic

condition, by definition that means it's going to hurt most if not all the

time. I got fed up at the point that coaching a volleyball practice with my

kid on the floor put me on the couch with ice for 2 weeks and sought out an

OS to help me find a way out of this after 16 years of it. Don't know yet

if we'll get there, thanks to insurance company refusals & all, but we're

trying.

Good luck!

Meg.

On 9/10/07, lucy falco <lucyfalco@...> wrote:

>

> Darlena,

> I agree with you-I have a great doctor but she never pays much attention

> to

> this Chondro. I'm 43 and my pain never stops either. Its always with you

> and

> people just don't understand. I used to wake up crying from the pain.

> However, like I indicated in my first message the other day, the proper

> exercises do help alot. I also bought some homeopathic drops that seem to

> keep the inflammation down a bit. They're called Aspen Arthro and I buy

> them

> off of vitalbotanicals.com.

> Darlena, you're only 44-you have to tackle this. The manager at the gym I

> joined said she saw a woman our age end up walking with a cane after 10

> years of osteoarthritis of the knees. If you can't go for personal

> training

> at a gym, check the arthritis society web sites. They pretty much have the

> same exercises I got given to me at the gym. I can give you more details

> of

> the exercises if you'd like.

> Lucy

>

> Re: Iam new

>

> Hi Faith,

>

> In my opinion, your doctor doesn't know what he is talking about. I

> have Chondramacia in both knees and they NEVER stop hurting. In

> April I had a lateral release and an ACL repair done on my Left knee

> due to a workers comp injury 2 days after Christmas. The MRI showed

> a menescus tear, so that wasn't accurate or reliable. It did however

> show stage 3 chondramalacia. My knee still crackles and pops, but

> not as much as my right one; will have to have it done when I get

> insurance again. I ended up quitting that job due to harrassment. I

> also have Fibromyalgia and Chronic Fatigue, so none of that helps.

> But I know the difference between my knee pain and the rest. Both of

> my knees are shot. I can not walk up or down stairs without

> assistance, can't carry a lot of weight, can't sit or stand for any

> length of time. I just turned 44. I feel I'm too young for all of

> this. But I have learned to modify and do the best I can, keep a

> positive attitude.

> Boy did I get off track. I'm sorry. I can only speak for myself, but

> when I walk, everyone hears my knee's, especially my right one,

> crackling and popping. Sometimes the pain is so bad, I am up all

> night. You need to get a 2nd opinion. I'm really sorry you're having

> such a bad experience. There is a lot of information out there on

> this condition, so educate yourself as well.

>

> Good Luck and keep us posted.

> Darlena

>

>

> >

> > Hi my name is Faith and i have had chondromalacia for 4 years

> now.it

> > has been so painful and it has not gone away.I have chronic pain

> with

> > itand i have to take pain meds everyday.my docs say that it is

> rare to

> > have chronic pain with it.that most pepole have it from time to

> time.so

> > has any of you had this also pain with it that stays.I can not

> stand to

> > long or sit and hard floors are a killer.i have also tried many

> things

> > but can not seem to get rid of it.i just want to know that iam not

> > alone and if anyone else has had the same experince with

> chondromalcia.

> > take care everyone. Faith

> >

>

>

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