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Thanks Aisha, I decided a long time ago that there are some things you can

do something about and some things you can't. I don't worry about the things

i can't (well,maybe a little) It is either laugh or cry and crying is a

waste of precious energy!! I don't know when i see the neuro, i'll find out

today. I have autoimmune hepatitis but i'm showing signs of other organ

involvement. my mother never said it would be easy!!! ne

>From: " Aisha Elderwyn " <aisha@...>

>Reply-egroups

><egroups>

>Subject: Re: dr visit

>Date: Fri, 28 Apr 2000 12:27:15 +1000

>

>*shaking her head*

>

>ne ne ne....

>

>My oh my.... gal get the flu! Gotta laugh though... I love your posts! You

>have a twisted sense of humour like I do.... ya know you are just like me!

>Its all in our heads! LOL...

>

>Only you could get something that sounds like it is another county (Central

>Pontine Myelinolysis). I can just imagine someone getting into a taxi and

>saying " Central Pontine Myelinolysis please " Could even be a posh shopping

>complex!

>

>Complex it sounds! Why does this happen with the liver disease? And what

>liver disease do you have? I have never heard of it... have you contacted

>NORD (National Organisation of Rare Diseases http://www.rare-diseases.org )

>for information? If I remember (LOL) I will try to find out more for you

>sweetie.

>

>When do you see the neuro? Do you know if it is something that can be

>stopped... it sounds really scary. How are you coping with this? I know

>when I got diagnosed I was in shock for ages... like you wondering why I

>just didn't get the flu! (Of couse then you get the flu AS WELL!!!)

>

>Well.... we are keeping the neurologists employed aren't we... I just

>remembered I have a friend who was a neurosurgeon... (So I just sent him an

>email asking for info on this ... I'll let ya know).

>

>Take care dearest one, and let us know how you go.

>*lots of chocky huggles*

>Aisha.

>

> ___________________________________

>

>*Medical Resources and Support*

>http://www.elderwyn.com/medicallinks

>

>*Aisha Elderwyn*

>http://www.elderwyn.com/aisha

________________________________________________________________________

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*shaking her head*

ne ne ne....

My oh my.... gal get the flu! Gotta laugh though... I love your posts! You have a twisted sense of humour like I do.... ya know you are just like me! Its all in our heads! LOL...

Only you could get something that sounds like it is another county (Central Pontine Myelinolysis). I can just imagine someone getting into a taxi and saying "Central Pontine Myelinolysis please" Could even be a posh shopping complex!

Complex it sounds! Why does this happen with the liver disease? And what liver disease do you have? I have never heard of it... have you contacted NORD (National Organisation of Rare Diseases http://www.rare-diseases.org ) for information? If I remember (LOL) I will try to find out more for you sweetie.

When do you see the neuro? Do you know if it is something that can be stopped... it sounds really scary. How are you coping with this? I know when I got diagnosed I was in shock for ages... like you wondering why I just didn't get the flu! (Of couse then you get the flu AS WELL!!!)

Well.... we are keeping the neurologists employed aren't we... I just remembered I have a friend who was a neurosurgeon... (So I just sent him an email asking for info on this ... I'll let ya know).

Take care dearest one, and let us know how you go.

*lots of chocky huggles*

Aisha.

___________________________________

*Medical Resources and Support*http://www.elderwyn.com/medicallinks

*Aisha Elderwyn*http://www.elderwyn.com/aisha

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ne,

has been diagnosed with periventricular leukomalasia

( " softening " of the white brain tissue surrounding the ventricles due to

cell death). His neurologist at the Cleveland Clinic has asked for his

MRI films, though, to make sure that this is the proper diagnosis. He

thinks that it might also be a dysmyelinization or demyelinization

issue.

Grandma Sullivan wrote:

> Saw my dr this afternoon for results of MRI of my brain. I have (are

> you

> ready for this?) Central Pontine Myelinolysis. The myeline covering

> of my

> pons deferen (sp?) is deteriorating. It is a rare complication with

> liver

> disease. I have an appointment with a neuro, hopefully we can stop the

>

> deterioration. I wonder why I don't just get the flu like other

> people?

> LOL

> ne

>

> _______________________________________________________________________

>

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> “There will always be people who are better off and worse off then

> you. This makes no difference to how you are feeling. You are the only

> one who feels as you do, and you have every right to be negative or

> upset when you are ill, injured, disabled, or caring for someone who

> is. Being sick sucks. No one deserves being sick. It is not fair.” -

> Aisha Elderwyn.

>

> ~~~~~~~~~~~~~~~

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Oh ne,

sorry to hear this, and you are still managing a laugh! When is the nuero

appointment?

We are with you, on this. What are the symptoms of this one? What does the

myalin actually do?

thinking of you..

:-)

>From: " Grandma Sullivan " <ninjagrandma@...>

>Reply-egroups

>egroups, ChronicChatteronelist,

>demonthang@...

>Subject: dr visit

>Date: Thu, 27 Apr 2000 16:03:27 PDT

>

>Saw my dr this afternoon for results of MRI of my brain. I have (are you

>ready for this?) Central Pontine Myelinolysis. The myeline covering of my

>pons deferen (sp?) is deteriorating. It is a rare complication with liver

>disease. I have an appointment with a neuro, hopefully we can stop the

>deterioration. I wonder why I don't just get the flu like other people?

>LOL

>ne

>________________________________________________________________________

>Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

>

>

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

>Was the salesman clueless? Productopia has the answers.

>1/3019/3/_/817445/_/956876609/

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

>

>The Being Sick Members Lounge.....

>* FREE counselling via email

>* Daily Horoscopes

>* FREE psychic/tarot readings via email

>* Daily cartoons

>* Members Profiles, locations and birthdays

>* DAILY LIVE CHAT!!

>* Medical Resources, and more.... http://www.elderwyn.com/members

>

>~~~~~~~~~~~~~~~

>

>“There will always be people who are better off and worse off then you.

>This makes no difference to how you are feeling. You are the only one who

>feels as you do, and you have every right to be negative or upset when you

>are ill, injured, disabled, or caring for someone who is. Being sick sucks.

>No one deserves being sick. It is not fair.” - Aisha Elderwyn.

>

>~~~~~~~~~~~~~~~

>

>Your subscription details

>/mygroups

>

>Proudly sponsored by Elderwyn Management

>http://www.elderwyn.com

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

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  • 3 months later...

Dear ne,

"Made my daily trek to the dr today. She thinks I have lymphedema. I gave her the name & number of a Dr in Atlanta & she's going to refer me to him. It's bad when YOU have to find a refering dr."

I found my endocrinologist, best thing I ever did!! Did any of those names help? How do you get tested for lymphederma? Well I hope that whoever you see next can help you Little Ninja Chickie...

"On the lighter side- I have a wart on the end of my nose. Now I am humpbacked, bearded goat woman with a WART on my nose. Some days you just can't win!!!! ne"

OMG ... Now that is a visual and a half! LOLOLOLOL ...

*hugs*

Aisha.

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  • 3 years later...
Guest guest

I forgot to tell that this Gastroenterologist has met Dr Vaesey and Dr Richter. He liked Dr Vaesey very much.

Joan

Seems to be the consensus among those that have met him.... Dr. Vaezi seems like a really honest-to-goodness nice person! I can't wait to hear what Jan and Mark think of him in a patient/doctor setting to see if he's just as nice that way, too!Deb

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  • 2 years later...

I am a bit suprised he offered you cortizone shots several times a year, my

first few doctors seemed to think cortizone was a big bandaid and with the area

numb I could be doing more damage to it. Supartz was very painful for me and no

help at all. A physical therapist spends more time looking at you to see what

causes the pain, the direction of your feet, the tilt, your gait so I think this

is why they often blame our pain on alignment. My PT told me the same thing. I

do think a PT gets a better understanding of your pain than a doctor does, since

they spend more time with you.... too bad they don't speak direclty to the

doctors we are seeing.

I was also told aleve and advil, or my favorite was that I could take aleve

and advil but to mix it up with tylenol and motrin so they would not cause

stomach ulcers, oh and to take my aleve with a full meal... a glass of milk

would not be enough. So at 3 am I am supposed to bake some chicken??

My first plan is a pain management specialist (I have a 6 month old so I

cannot go on any medication for several more months). I am not sure how to go

about seeing one, if I have to be sent to one from my ortho, but aleve does not

help me at all. So I guess my only advice is maybe see someone strictly for the

pain, once that is managed a bit and you are sleeping better, work on the PT.

Best of luck to you!!

wildwest <wildwest@...> wrote:

I had my visit with the new doc this week (Tuesday). He was very

thorough

and took a lot of x-rays of my knees and hip. The x-rays were much better

and more complete than the other guy did. As for my hip.he said that with

the knee problems I have (CP) it is common to have hip problems. Since my

right side has always gone downhill first, my right hip has problems first.

He saw some narrowing of the hip joint and said it's in the early stages of

arthritis. Since it snaps and such and he saw the difference between the two

and with the symptoms, he said the bursitis is common to have. He gave me a

cortisone shot for the bursitis. It's still sore, but does feel a little

better. I'm sure I'll be going back for cortisone shots.he said I can have

3-4 per year. As for the knees.he said right now, the gap between the

patella and femur look ok. He said he could see arthritis in my knees as

well, but there was no surgical intervention that could be done right now.

He wants me to go to the PT and do water therapy and see how that works. I

think if I can get rid of the hip pain, the knee pain can be managed at

least for awhile. He offered no injectable therapy for my knees (Synvisc,

supartz, or whatever they are called). It seems to me that the docs here

don't think they help much so none are willing to try them. He checked my

alignment and said it was good. My question is if the PT says I'm out of

alignment why doesn't the doc say I'm out of alignment? Could the PT be just

taking in to consideration my feet and not my knees? When I wear or don't

wear the orthotics, I really don't notice any improvement or difference with

my knees. Why does there have to be so many different ways to measure

something (like alignment) and each person measures them differently?

Shouldn't there be a standard way to measure? My other question is (and I

know this is not a bursitis group, but since it seems to be related somewhat

I'll go ahead and ask) if I'm supposed to exercise and strengthen my knees,

but am supposed to rest my hip, how can I get my knees better and not make

the hip hurt so bad that I can't move? I asked this of the doc and he said

to work through the hip pain. Well.I'd hate to wish this hip pain on anyone,

but it seems the only way to get it through their heads how much it hurts.

He said to take Advil or Aleve for it but I've tried those and they simply

do not work. He gave no other options for pain. What I still want is to be

able to sleep through the night. I haven't been able to do that for 4 years

now. When I'm tired, I hurt more and it makes it much harder to " work

through the pain " as I have been told to do. I like this doc, just didn't

get much real help other than the cortisone shot and a RX for water

therapy.

Joi & fids

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Thanks . The cortisone was for the hip bursitis. He said they don’t

do much else for that. My big concern for the hip is now that the cortisone

has helped the bursitis, the hip joint hurts a lot more. More like an

arthritic joint. So, for that, I’m supposed to do PT in the water. The only

place here that does that is associated with a nursing home and I really do

not want to go there for PT, water or otherwise. I’ll go once to get the

info on what I need to do, but I’ll do the rest of it on my own. I’m not old

enough to go to a place like that, outpatient or not. I might be stubborn or

whatever you want to call it, but I just don’t want to go there! I used to

work in a nursing home and I hope I never end up in one.

He said the same thing about the Aleve…I’m not going to eat a meal in the

middle of the night either. That’s not going to help my weight disappear!

Joi

_____

From: chondromalacia treatment

[mailto:chondromalacia treatment ] On Behalf Of shannon webb

Sent: Saturday, January 20, 2007 10:30 AM

chondromalacia treatment

Subject: Re: Dr Visit

I am a bit suprised he offered you cortizone shots several times a year, my

first few doctors seemed to think cortizone was a big bandaid and with the

area numb I could be doing more damage to it. Supartz was very painful for

me and no help at all. A physical therapist spends more time looking at you

to see what causes the pain, the direction of your feet, the tilt, your gait

so I think this is why they often blame our pain on alignment. My PT told me

the same thing. I do think a PT gets a better understanding of your pain

than a doctor does, since they spend more time with you.... too bad they

don't speak direclty to the doctors we are seeing.

I was also told aleve and advil, or my favorite was that I could take aleve

and advil but to mix it up with tylenol and motrin so they would not cause

stomach ulcers, oh and to take my aleve with a full meal... a glass of milk

would not be enough. So at 3 am I am supposed to bake some chicken??

My first plan is a pain management specialist (I have a 6 month old so I

cannot go on any medication for several more months). I am not sure how to

go about seeing one, if I have to be sent to one from my ortho, but aleve

does not help me at all. So I guess my only advice is maybe see someone

strictly for the pain, once that is managed a bit and you are sleeping

better, work on the PT.

Best of luck to you!!

wildwest <wildwestnwi (DOT) <mailto:wildwest%40nwi.net> net> wrote:

I had my visit with the new doc this week (Tuesday). He was very thorough

and took a lot of x-rays of my knees and hip. The x-rays were much better

and more complete than the other guy did. As for my hip.he said that with

the knee problems I have (CP) it is common to have hip problems. Since my

right side has always gone downhill first, my right hip has problems first.

He saw some narrowing of the hip joint and said it's in the early stages of

arthritis. Since it snaps and such and he saw the difference between the two

and with the symptoms, he said the bursitis is common to have. He gave me a

cortisone shot for the bursitis. It's still sore, but does feel a little

better. I'm sure I'll be going back for cortisone shots.he said I can have

3-4 per year. As for the knees.he said right now, the gap between the

patella and femur look ok. He said he could see arthritis in my knees as

well, but there was no surgical intervention that could be done right now.

He wants me to go to the PT and do water therapy and see how that works. I

think if I can get rid of the hip pain, the knee pain can be managed at

least for awhile. He offered no injectable therapy for my knees (Synvisc,

supartz, or whatever they are called). It seems to me that the docs here

don't think they help much so none are willing to try them. He checked my

alignment and said it was good. My question is if the PT says I'm out of

alignment why doesn't the doc say I'm out of alignment? Could the PT be just

taking in to consideration my feet and not my knees? When I wear or don't

wear the orthotics, I really don't notice any improvement or difference with

my knees. Why does there have to be so many different ways to measure

something (like alignment) and each person measures them differently?

Shouldn't there be a standard way to measure? My other question is (and I

know this is not a bursitis group, but since it seems to be related somewhat

I'll go ahead and ask) if I'm supposed to exercise and strengthen my knees,

but am supposed to rest my hip, how can I get my knees better and not make

the hip hurt so bad that I can't move? I asked this of the doc and he said

to work through the hip pain. Well.I'd hate to wish this hip pain on anyone,

but it seems the only way to get it through their heads how much it hurts.

He said to take Advil or Aleve for it but I've tried those and they simply

do not work. He gave no other options for pain. What I still want is to be

able to sleep through the night. I haven't been able to do that for 4 years

now. When I'm tired, I hurt more and it makes it much harder to " work

through the pain " as I have been told to do. I like this doc, just didn't

get much real help other than the cortisone shot and a RX for water

therapy.

Joi & fids

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Joi &

I feel for you ladies. I was on naprosyn until my gut just couldn't take it

anymore, plus the increase in bruising. I live if FL and spend a lot of time in

shorts, bathing suits and my legs were so bruised it looked like I had been

abused.

My OA switched me to Celebrex in 1999 and I took it until they put out the

warning on the increased risk of HTN and Heart attacks. I tolerated the drug

well and it controlled the swelling and pain in my knee pretty good. (I have a

job in health care and am on my feet for a lot of hours.)

Well, as things go, with the threat of legal action, my good ole OA who has

been taking care of me since 1991 stopped prescibing it. I ask him what I was

supposed to do since I couldn't take Alieve, and the other naprosyn based

products.

As sympathetic as he was, (he has had two knee surgeries over the years he has

been my doctor.) Funny story, initially he didn't seem to understand the pain

his patients were in, but boy ole boy, did we all get a more understanding OA

after he had his ACL reconstruction.

So he put me on darvocet prn and fortunately I took another position which

required less time on my feet and for about a year my pain level was something I

could manage with ice packs, rest, etc and just plain used to it cause I had

lived with it so long.

In 2001 my knee filled with fluid and no matter what I did I couldn't get it

to go down. I walked around like that for about six months until finally I

broke wheat and went to see the doc. He pulled the fluid off my knee, and my

xrays showed a significant change in the advancement of my OA and CP. So since

then, he had put me on Lortab and it has worked pretty well. I know Joi with

you having a baby it makes it difficult to take meds.

I have functioned normally and have no problems in performing my daily

activities. (I am a nuclear medicine technologist.) My employer knows I have

been perscribed the med so that is not an issue.

I guess I'm rambling, but I don't know if it is possible for you to get

another opinion. Also, the water PT works well, except if you don't have acess

to a pool or other water source. I have to agree with you, I don't think I would

like to have to do myTX at a nursing home either.

About the cortisone injections. Over the last two years I had them twice a

year.

I just started on the supartz injections. Initially my OA was skeptical that

they would work until his partners in the group saw that in the younger patients

who were not totally bone on bone the overall outcome was good.

I resisted until finally based upon the trust that I have with my doc from

having him for almost twenty years I caved. Like he said, what do you have to

lose? I ask him about the number of cortisone shots a person could have and at

this stage in my condition (end stage knee) he said in my case it really

wouldn't matter since I will eventually have to have a total knee replacement.

You know, I appreaciate that frankness. I really hurt for you and everyone

who are truly suffering and the stubborn docs don't get it when it comes to the

pain management aspect.

(Here's a funny! My chart at the OA is now in volume 2 and it is almost

full.) When I moved and changed family doctors I gave her all the records

pertiniet to my knee problem. I ask her if she would write my script for Lortab

and her reply was " You don't have a diagnosis that is relevant for the drug. But

I can refer you to an OA for evaluation.) I reminded her to review my medical

records and she would see that I had helped send my OA's kids to college over

the years.

I just don't get it, but then I do. So many people abuse drugs and the docs

are scared to death of a lawsuit. I know I have been blessed to have had the

same OA all along and since he knows me, it isn't an issue.

Sometimes in health care we forget to see that what works for the majority may

not work for one. How can anyone judge anothers physical pain? We can't and I

pray that you will find a Doc that is compassonate and caring.

Marilyn,

wildwest <wildwest@...> wrote:

Thanks . The cortisone was for the hip bursitis. He said they

don’t

do much else for that. My big concern for the hip is now that the cortisone

has helped the bursitis, the hip joint hurts a lot more. More like an

arthritic joint. So, for that, I’m supposed to do PT in the water. The only

place here that does that is associated with a nursing home and I really do

not want to go there for PT, water or otherwise. I’ll go once to get the

info on what I need to do, but I’ll do the rest of it on my own. I’m not old

enough to go to a place like that, outpatient or not. I might be stubborn or

whatever you want to call it, but I just don’t want to go there! I used to

work in a nursing home and I hope I never end up in one.

He said the same thing about the Aleve…I’m not going to eat a meal in the

middle of the night either. That’s not going to help my weight disappear!

Joi

_____

From: chondromalacia treatment

[mailto:chondromalacia treatment ] On Behalf Of shannon webb

Sent: Saturday, January 20, 2007 10:30 AM

chondromalacia treatment

Subject: Re: Dr Visit

I am a bit suprised he offered you cortizone shots several times a year, my

first few doctors seemed to think cortizone was a big bandaid and with the

area numb I could be doing more damage to it. Supartz was very painful for

me and no help at all. A physical therapist spends more time looking at you

to see what causes the pain, the direction of your feet, the tilt, your gait

so I think this is why they often blame our pain on alignment. My PT told me

the same thing. I do think a PT gets a better understanding of your pain

than a doctor does, since they spend more time with you.... too bad they

don't speak direclty to the doctors we are seeing.

I was also told aleve and advil, or my favorite was that I could take aleve

and advil but to mix it up with tylenol and motrin so they would not cause

stomach ulcers, oh and to take my aleve with a full meal... a glass of milk

would not be enough. So at 3 am I am supposed to bake some chicken??

My first plan is a pain management specialist (I have a 6 month old so I

cannot go on any medication for several more months). I am not sure how to

go about seeing one, if I have to be sent to one from my ortho, but aleve

does not help me at all. So I guess my only advice is maybe see someone

strictly for the pain, once that is managed a bit and you are sleeping

better, work on the PT.

Best of luck to you!!

wildwest <wildwestnwi (DOT) <mailto:wildwest%40nwi.net> net> wrote:

I had my visit with the new doc this week (Tuesday). He was very thorough

and took a lot of x-rays of my knees and hip. The x-rays were much better

and more complete than the other guy did. As for my hip.he said that with

the knee problems I have (CP) it is common to have hip problems. Since my

right side has always gone downhill first, my right hip has problems first.

He saw some narrowing of the hip joint and said it's in the early stages of

arthritis. Since it snaps and such and he saw the difference between the two

and with the symptoms, he said the bursitis is common to have. He gave me a

cortisone shot for the bursitis. It's still sore, but does feel a little

better. I'm sure I'll be going back for cortisone shots.he said I can have

3-4 per year. As for the knees.he said right now, the gap between the

patella and femur look ok. He said he could see arthritis in my knees as

well, but there was no surgical intervention that could be done right now.

He wants me to go to the PT and do water therapy and see how that works. I

think if I can get rid of the hip pain, the knee pain can be managed at

least for awhile. He offered no injectable therapy for my knees (Synvisc,

supartz, or whatever they are called). It seems to me that the docs here

don't think they help much so none are willing to try them. He checked my

alignment and said it was good. My question is if the PT says I'm out of

alignment why doesn't the doc say I'm out of alignment? Could the PT be just

taking in to consideration my feet and not my knees? When I wear or don't

wear the orthotics, I really don't notice any improvement or difference with

my knees. Why does there have to be so many different ways to measure

something (like alignment) and each person measures them differently?

Shouldn't there be a standard way to measure? My other question is (and I

know this is not a bursitis group, but since it seems to be related somewhat

I'll go ahead and ask) if I'm supposed to exercise and strengthen my knees,

but am supposed to rest my hip, how can I get my knees better and not make

the hip hurt so bad that I can't move? I asked this of the doc and he said

to work through the hip pain. Well.I'd hate to wish this hip pain on anyone,

but it seems the only way to get it through their heads how much it hurts.

He said to take Advil or Aleve for it but I've tried those and they simply

do not work. He gave no other options for pain. What I still want is to be

able to sleep through the night. I haven't been able to do that for 4 years

now. When I'm tired, I hurt more and it makes it much harder to " work

through the pain " as I have been told to do. I like this doc, just didn't

get much real help other than the cortisone shot and a RX for water

therapy.

Joi & fids

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Where does you hip pain seem to come from? If it is coming from the outside

(just below where pants ride), you most likely have ITB pain, and not arthritis.

This is what I had. PT will do much more than cortisone shots or NSAIDS for

this type of pain. It is also not true arthritis, but can be VERY painful. ITB

pain is very common to CP sufferers. I am not making a diagnosis, but simply

offering a solution to a very common problem. This was after years of NSAIDS

for the problem and several cortisone shots. True hip arthritis pain originates

in the groin area.

Mike

MT

Re: Dr Visit

I am a bit suprised he offered you cortizone shots several times a year, my

first few doctors seemed to think cortizone was a big bandaid and with the

area numb I could be doing more damage to it. Supartz was very painful for

me and no help at all. A physical therapist spends more time looking at you

to see what causes the pain, the direction of your feet, the tilt, your gait

so I think this is why they often blame our pain on alignment. My PT told me

the same thing. I do think a PT gets a better understanding of your pain

than a doctor does, since they spend more time with you.... too bad they

don't speak direclty to the doctors we are seeing.

I was also told aleve and advil, or my favorite was that I could take aleve

and advil but to mix it up with tylenol and motrin so they would not cause

stomach ulcers, oh and to take my aleve with a full meal... a glass of milk

would not be enough. So at 3 am I am supposed to bake some chicken??

My first plan is a pain management specialist (I have a 6 month old so I

cannot go on any medication for several more months). I am not sure how to

go about seeing one, if I have to be sent to one from my ortho, but aleve

does not help me at all. So I guess my only advice is maybe see someone

strictly for the pain, once that is managed a bit and you are sleeping

better, work on the PT.

Best of luck to you!!

wildwest <wildwestnwi (DOT) <mailto:wildwest%40nwi.net> net> wrote:

I had my visit with the new doc this week (Tuesday). He was very thorough

and took a lot of x-rays of my knees and hip. The x-rays were much better

and more complete than the other guy did. As for my hip.he said that with

the knee problems I have (CP) it is common to have hip problems. Since my

right side has always gone downhill first, my right hip has problems first.

He saw some narrowing of the hip joint and said it's in the early stages of

arthritis. Since it snaps and such and he saw the difference between the two

and with the symptoms, he said the bursitis is common to have. He gave me a

cortisone shot for the bursitis. It's still sore, but does feel a little

better. I'm sure I'll be going back for cortisone shots.he said I can have

3-4 per year. As for the knees.he said right now, the gap between the

patella and femur look ok. He said he could see arthritis in my knees as

well, but there was no surgical intervention that could be done right now.

He wants me to go to the PT and do water therapy and see how that works. I

think if I can get rid of the hip pain, the knee pain can be managed at

least for awhile. He offered no injectable therapy for my knees (Synvisc,

supartz, or whatever they are called). It seems to me that the docs here

don't think they help much so none are willing to try them. He checked my

alignment and said it was good. My question is if the PT says I'm out of

alignment why doesn't the doc say I'm out of alignment? Could the PT be just

taking in to consideration my feet and not my knees? When I wear or don't

wear the orthotics, I really don't notice any improvement or difference with

my knees. Why does there have to be so many different ways to measure

something (like alignment) and each person measures them differently?

Shouldn't there be a standard way to measure? My other question is (and I

know this is not a bursitis group, but since it seems to be related somewhat

I'll go ahead and ask) if I'm supposed to exercise and strengthen my knees,

but am supposed to rest my hip, how can I get my knees better and not make

the hip hurt so bad that I can't move? I asked this of the doc and he said

to work through the hip pain. Well.I'd hate to wish this hip pain on anyone,

but it seems the only way to get it through their heads how much it hurts.

He said to take Advil or Aleve for it but I've tried those and they simply

do not work. He gave no other options for pain. What I still want is to be

able to sleep through the night. I haven't been able to do that for 4 years

now. When I'm tired, I hurt more and it makes it much harder to " work

through the pain " as I have been told to do. I like this doc, just didn't

get much real help other than the cortisone shot and a RX for water

therapy.

Joi & fids

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Share on other sites

Thanks Marilyn. It helps to know there is this community of co-CP’ers that

totally understand the pain and frustration in dealing with this

degenerative problem of the knees. I’m not the one with the youngster at

home…my kids (thankfully) are 10 and 14 years old. I may try to call my

regular doc and see if she will prescribe me something. I don’t want

something that is habit forming and I don’t want to have to take something

long-range. Just something that will get me through the winter and wet

spring when it really hurts badly. I generally do pretty well in the late

spring through early fall, so wouldn’t need anything for that time of year.

I doubt I’d be very good at getting hooked on meds…I forget to take them all

the time. LOL I do plan to try the water therapy…if it will work, I can do

the exercises at the local Y where we are members.

Joi

_____

From: chondromalacia treatment

[mailto:chondromalacia treatment ] On Behalf Of marilyn

langley

Sent: Saturday, January 20, 2007 11:45 AM

chondromalacia treatment

Subject: RE: Dr Visit

Joi &

I feel for you ladies. I was on naprosyn until my gut just couldn't take it

anymore, plus the increase in bruising. I live if FL and spend a lot of time

in shorts, bathing suits and my legs were so bruised it looked like I had

been abused.

My OA switched me to Celebrex in 1999 and I took it until they put out the

warning on the increased risk of HTN and Heart attacks. I tolerated the drug

well and it controlled the swelling and pain in my knee pretty good. (I have

a job in health care and am on my feet for a lot of hours.)

Well, as things go, with the threat of legal action, my good ole OA who has

been taking care of me since 1991 stopped prescibing it. I ask him what I

was supposed to do since I couldn't take Alieve, and the other naprosyn

based products.

As sympathetic as he was, (he has had two knee surgeries over the years he

has been my doctor.) Funny story, initially he didn't seem to understand the

pain his patients were in, but boy ole boy, did we all get a more

understanding OA after he had his ACL reconstruction.

So he put me on darvocet prn and fortunately I took another position which

required less time on my feet and for about a year my pain level was

something I could manage with ice packs, rest, etc and just plain used to it

cause I had lived with it so long.

In 2001 my knee filled with fluid and no matter what I did I couldn't get it

to go down. I walked around like that for about six months until finally I

broke wheat and went to see the doc. He pulled the fluid off my knee, and my

xrays showed a significant change in the advancement of my OA and CP. So

since then, he had put me on Lortab and it has worked pretty well. I know

Joi with you having a baby it makes it difficult to take meds.

I have functioned normally and have no problems in performing my daily

activities. (I am a nuclear medicine technologist.) My employer knows I have

been perscribed the med so that is not an issue.

I guess I'm rambling, but I don't know if it is possible for you to get

another opinion. Also, the water PT works well, except if you don't have

acess to a pool or other water source. I have to agree with you, I don't

think I would like to have to do myTX at a nursing home either.

About the cortisone injections. Over the last two years I had them twice a

year.

I just started on the supartz injections. Initially my OA was skeptical that

they would work until his partners in the group saw that in the younger

patients who were not totally bone on bone the overall outcome was good.

I resisted until finally based upon the trust that I have with my doc from

having him for almost twenty years I caved. Like he said, what do you have

to lose? I ask him about the number of cortisone shots a person could have

and at this stage in my condition (end stage knee) he said in my case it

really wouldn't matter since I will eventually have to have a total knee

replacement.

You know, I appreaciate that frankness. I really hurt for you and everyone

who are truly suffering and the stubborn docs don't get it when it comes to

the pain management aspect.

(Here's a funny! My chart at the OA is now in volume 2 and it is almost

full.) When I moved and changed family doctors I gave her all the records

pertiniet to my knee problem. I ask her if she would write my script for

Lortab and her reply was " You don't have a diagnosis that is relevant for

the drug. But I can refer you to an OA for evaluation.) I reminded her to

review my medical records and she would see that I had helped send my OA's

kids to college over the years.

I just don't get it, but then I do. So many people abuse drugs and the docs

are scared to death of a lawsuit. I know I have been blessed to have had the

same OA all along and since he knows me, it isn't an issue.

Sometimes in health care we forget to see that what works for the majority

may not work for one. How can anyone judge anothers physical pain? We can't

and I pray that you will find a Doc that is compassonate and caring.

Marilyn,

wildwest <wildwestnwi (DOT) <mailto:wildwest%40nwi.net> net> wrote:

Thanks . The cortisone was for the hip bursitis. He said they don’t

do much else for that. My big concern for the hip is now that the cortisone

has helped the bursitis, the hip joint hurts a lot more. More like an

arthritic joint. So, for that, I’m supposed to do PT in the water. The only

place here that does that is associated with a nursing home and I really do

not want to go there for PT, water or otherwise. I’ll go once to get the

info on what I need to do, but I’ll do the rest of it on my own. I’m not old

enough to go to a place like that, outpatient or not. I might be stubborn or

whatever you want to call it, but I just don’t want to go there! I used to

work in a nursing home and I hope I never end up in one.

He said the same thing about the Aleve…I’m not going to eat a meal in the

middle of the night either. That’s not going to help my weight disappear!

Joi

_____

From: chondromalaciacommu <mailto:chondromalacia treatment%40>

nity

[mailto:chondromalaciacommu

<mailto:chondromalacia treatment%40> nity ] On

Behalf Of shannon webb

Sent: Saturday, January 20, 2007 10:30 AM

chondromalaciacommu <mailto:chondromalacia treatment%40>

nity

Subject: Re: Dr Visit

I am a bit suprised he offered you cortizone shots several times a year, my

first few doctors seemed to think cortizone was a big bandaid and with the

area numb I could be doing more damage to it. Supartz was very painful for

me and no help at all. A physical therapist spends more time looking at you

to see what causes the pain, the direction of your feet, the tilt, your gait

so I think this is why they often blame our pain on alignment. My PT told me

the same thing. I do think a PT gets a better understanding of your pain

than a doctor does, since they spend more time with you.... too bad they

don't speak direclty to the doctors we are seeing.

I was also told aleve and advil, or my favorite was that I could take aleve

and advil but to mix it up with tylenol and motrin so they would not cause

stomach ulcers, oh and to take my aleve with a full meal... a glass of milk

would not be enough. So at 3 am I am supposed to bake some chicken??

My first plan is a pain management specialist (I have a 6 month old so I

cannot go on any medication for several more months). I am not sure how to

go about seeing one, if I have to be sent to one from my ortho, but aleve

does not help me at all. So I guess my only advice is maybe see someone

strictly for the pain, once that is managed a bit and you are sleeping

better, work on the PT.

Best of luck to you!!

wildwest <wildwestnwi (DOT) <mailto:wildwest%40nwi.net> net> wrote:

I had my visit with the new doc this week (Tuesday). He was very thorough

and took a lot of x-rays of my knees and hip. The x-rays were much better

and more complete than the other guy did. As for my hip.he said that with

the knee problems I have (CP) it is common to have hip problems. Since my

right side has always gone downhill first, my right hip has problems first.

He saw some narrowing of the hip joint and said it's in the early stages of

arthritis. Since it snaps and such and he saw the difference between the two

and with the symptoms, he said the bursitis is common to have. He gave me a

cortisone shot for the bursitis. It's still sore, but does feel a little

better. I'm sure I'll be going back for cortisone shots.he said I can have

3-4 per year. As for the knees.he said right now, the gap between the

patella and femur look ok. He said he could see arthritis in my knees as

well, but there was no surgical intervention that could be done right now.

He wants me to go to the PT and do water therapy and see how that works. I

think if I can get rid of the hip pain, the knee pain can be managed at

least for awhile. He offered no injectable therapy for my knees (Synvisc,

supartz, or whatever they are called). It seems to me that the docs here

don't think they help much so none are willing to try them. He checked my

alignment and said it was good. My question is if the PT says I'm out of

alignment why doesn't the doc say I'm out of alignment? Could the PT be just

taking in to consideration my feet and not my knees? When I wear or don't

wear the orthotics, I really don't notice any improvement or difference with

my knees. Why does there have to be so many different ways to measure

something (like alignment) and each person measures them differently?

Shouldn't there be a standard way to measure? My other question is (and I

know this is not a bursitis group, but since it seems to be related somewhat

I'll go ahead and ask) if I'm supposed to exercise and strengthen my knees,

but am supposed to rest my hip, how can I get my knees better and not make

the hip hurt so bad that I can't move? I asked this of the doc and he said

to work through the hip pain. Well.I'd hate to wish this hip pain on anyone,

but it seems the only way to get it through their heads how much it hurts.

He said to take Advil or Aleve for it but I've tried those and they simply

do not work. He gave no other options for pain. What I still want is to be

able to sleep through the night. I haven't been able to do that for 4 years

now. When I'm tired, I hurt more and it makes it much harder to " work

through the pain " as I have been told to do. I like this doc, just didn't

get much real help other than the cortisone shot and a RX for water

therapy.

Joi & fids

Link to comment
Share on other sites

I had that too, but since I’ve been maintaining the stretching, it’s not

been a problem. The pain was bursitis pain, right where the bursa is on the

outside of the hip, but I also have pain in the groin right where my femur

bends at the top. That plus the x-ray indicated the early onset of OA. No

fun. It also pops there and can be sore when I bring my leg forward to walk

or lift it up.

Joi

_____

From: chondromalacia treatment

[mailto:chondromalacia treatment ] On Behalf Of Mike Bernhardt

Sent: Saturday, January 20, 2007 12:06 PM

chondromalacia treatment

Subject: Re: Dr Visit

Where does you hip pain seem to come from? If it is coming from the outside

(just below where pants ride), you most likely have ITB pain, and not

arthritis. This is what I had. PT will do much more than cortisone shots or

NSAIDS for this type of pain. It is also not true arthritis, but can be VERY

painful. ITB pain is very common to CP sufferers. I am not making a

diagnosis, but simply offering a solution to a very common problem. This was

after years of NSAIDS for the problem and several cortisone shots. True hip

arthritis pain originates in the groin area.

Mike

MT

Re: Dr Visit

I am a bit suprised he offered you cortizone shots several times a year, my

first few doctors seemed to think cortizone was a big bandaid and with the

area numb I could be doing more damage to it. Supartz was very painful for

me and no help at all. A physical therapist spends more time looking at you

to see what causes the pain, the direction of your feet, the tilt, your gait

so I think this is why they often blame our pain on alignment. My PT told me

the same thing. I do think a PT gets a better understanding of your pain

than a doctor does, since they spend more time with you.... too bad they

don't speak direclty to the doctors we are seeing.

I was also told aleve and advil, or my favorite was that I could take aleve

and advil but to mix it up with tylenol and motrin so they would not cause

stomach ulcers, oh and to take my aleve with a full meal... a glass of milk

would not be enough. So at 3 am I am supposed to bake some chicken??

My first plan is a pain management specialist (I have a 6 month old so I

cannot go on any medication for several more months). I am not sure how to

go about seeing one, if I have to be sent to one from my ortho, but aleve

does not help me at all. So I guess my only advice is maybe see someone

strictly for the pain, once that is managed a bit and you are sleeping

better, work on the PT.

Best of luck to you!!

wildwest <wildwestnwi (DOT) <mailto:wildwest%40nwi.net> net> wrote:

I had my visit with the new doc this week (Tuesday). He was very thorough

and took a lot of x-rays of my knees and hip. The x-rays were much better

and more complete than the other guy did. As for my hip.he said that with

the knee problems I have (CP) it is common to have hip problems. Since my

right side has always gone downhill first, my right hip has problems first.

He saw some narrowing of the hip joint and said it's in the early stages of

arthritis. Since it snaps and such and he saw the difference between the two

and with the symptoms, he said the bursitis is common to have. He gave me a

cortisone shot for the bursitis. It's still sore, but does feel a little

better. I'm sure I'll be going back for cortisone shots.he said I can have

3-4 per year. As for the knees.he said right now, the gap between the

patella and femur look ok. He said he could see arthritis in my knees as

well, but there was no surgical intervention that could be done right now.

He wants me to go to the PT and do water therapy and see how that works. I

think if I can get rid of the hip pain, the knee pain can be managed at

least for awhile. He offered no injectable therapy for my knees (Synvisc,

supartz, or whatever they are called). It seems to me that the docs here

don't think they help much so none are willing to try them. He checked my

alignment and said it was good. My question is if the PT says I'm out of

alignment why doesn't the doc say I'm out of alignment? Could the PT be just

taking in to consideration my feet and not my knees? When I wear or don't

wear the orthotics, I really don't notice any improvement or difference with

my knees. Why does there have to be so many different ways to measure

something (like alignment) and each person measures them differently?

Shouldn't there be a standard way to measure? My other question is (and I

know this is not a bursitis group, but since it seems to be related somewhat

I'll go ahead and ask) if I'm supposed to exercise and strengthen my knees,

but am supposed to rest my hip, how can I get my knees better and not make

the hip hurt so bad that I can't move? I asked this of the doc and he said

to work through the hip pain. Well.I'd hate to wish this hip pain on anyone,

but it seems the only way to get it through their heads how much it hurts.

He said to take Advil or Aleve for it but I've tried those and they simply

do not work. He gave no other options for pain. What I still want is to be

able to sleep through the night. I haven't been able to do that for 4 years

now. When I'm tired, I hurt more and it makes it much harder to " work

through the pain " as I have been told to do. I like this doc, just didn't

get much real help other than the cortisone shot and a RX for water

therapy.

Joi & fids

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Share on other sites

Mike, did you mean " ITBS is not true arthritis " ? That's how I read it. ITBS is

not even related to arthritis. It's a shrinking of the wide, thick, and long

band of connective tissue that runs from the glutes to the tibia and can pull

the kneecap laterally. I have problems with it tightening up in response to

pain from my CP. And you may really be onto something w/r/t/ Joi's hip pain.

Good idea -- really jumped out of the box with that one.

I was thinking, since Joi had had a bunch of cortisone shots for her hip

bursitis, the cortisone may have caused arthritis, since it does destroy bone

over time. It's another possibility to look into. An X-ray should show whether

the hip joint has arthritis.

BTW when I was looking into TKR, I was in the TJR group, and hip

replacement is WAY more successful than knee replacement -- a lot easier to do.

How's everyone's winter coming along? Weird?

Ann

Re: Dr Visit

I am a bit suprised he offered you cortizone shots several times a year, my

first few doctors seemed to think cortizone was a big bandaid and with the

area numb I could be doing more damage to it. Supartz was very painful for

me and no help at all. A physical therapist spends more time looking at you

to see what causes the pain, the direction of your feet, the tilt, your gait

so I think this is why they often blame our pain on alignment. My PT told me

the same thing. I do think a PT gets a better understanding of your pain

than a doctor does, since they spend more time with you.... too bad they

don't speak direclty to the doctors we are seeing.

I was also told aleve and advil, or my favorite was that I could take aleve

and advil but to mix it up with tylenol and motrin so they would not cause

stomach ulcers, oh and to take my aleve with a full meal... a glass of milk

would not be enough. So at 3 am I am supposed to bake some chicken??

My first plan is a pain management specialist (I have a 6 month old so I

cannot go on any medication for several more months). I am not sure how to

go about seeing one, if I have to be sent to one from my ortho, but aleve

does not help me at all. So I guess my only advice is maybe see someone

strictly for the pain, once that is managed a bit and you are sleeping

better, work on the PT.

Best of luck to you!!

wildwest <wildwestnwi (DOT) <mailto:wildwest%40nwi.net> net> wrote:

I had my visit with the new doc this week (Tuesday). He was very thorough

and took a lot of x-rays of my knees and hip. The x-rays were much better

and more complete than the other guy did. As for my hip.he said that with

the knee problems I have (CP) it is common to have hip problems. Since my

right side has always gone downhill first, my right hip has problems first.

He saw some narrowing of the hip joint and said it's in the early stages of

arthritis. Since it snaps and such and he saw the difference between the two

and with the symptoms, he said the bursitis is common to have. He gave me a

cortisone shot for the bursitis. It's still sore, but does feel a little

better. I'm sure I'll be going back for cortisone shots.he said I can have

3-4 per year. As for the knees.he said right now, the gap between the

patella and femur look ok. He said he could see arthritis in my knees as

well, but there was no surgical intervention that could be done right now.

He wants me to go to the PT and do water therapy and see how that works. I

think if I can get rid of the hip pain, the knee pain can be managed at

least for awhile. He offered no injectable therapy for my knees (Synvisc,

supartz, or whatever they are called). It seems to me that the docs here

don't think they help much so none are willing to try them. He checked my

alignment and said it was good. My question is if the PT says I'm out of

alignment why doesn't the doc say I'm out of alignment? Could the PT be just

taking in to consideration my feet and not my knees? When I wear or don't

wear the orthotics, I really don't notice any improvement or difference with

my knees. Why does there have to be so many different ways to measure

something (like alignment) and each person measures them differently?

Shouldn't there be a standard way to measure? My other question is (and I

know this is not a bursitis group, but since it seems to be related somewhat

I'll go ahead and ask) if I'm supposed to exercise and strengthen my knees,

but am supposed to rest my hip, how can I get my knees better and not make

the hip hurt so bad that I can't move? I asked this of the doc and he said

to work through the hip pain. Well.I'd hate to wish this hip pain on anyone,

but it seems the only way to get it through their heads how much it hurts.

He said to take Advil or Aleve for it but I've tried those and they simply

do not work. He gave no other options for pain. What I still want is to be

able to sleep through the night. I haven't been able to do that for 4 years

now. When I'm tired, I hurt more and it makes it much harder to " work

through the pain " as I have been told to do. I like this doc, just didn't

get much real help other than the cortisone shot and a RX for water

therapy.

Joi & fids

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Share on other sites

Ann,

In my original post I had stated that x-rays did show some early stage hip

arthritis. This is only my second cortisone shot for the bursitis, so not a

lot of shots have been given. Once the hip bursitis pain had lessened I

noticed the joint/groin area hurting more. The Dr said that the hip problem

can exacerbate the bursitis in the hip, which it has. The bursitis was

hurting so much; I hadn't really noticed the joint pain in my hip as it's

not really terrible at this point. My IT band was causing some problems, but

I immediately stretched it and that tightening has gone away. That was the

initial treatment for the hip pain but since it's still hurting so bad, the

Dr took better x-rays (different Dr too) and it's easily seen on the x-ray

that the hip joint is quite different than the other one.

I'm sick of winter.I want an early warm dry spring!!! Anytime would be good

for me.

Joi

And you may really be onto something w/r/t/ Joi's hip pain. Good idea --

really jumped out of the box with that one.

I was thinking, since Joi had had a bunch of cortisone shots for her hip

bursitis, the cortisone may have caused arthritis, since it does destroy

bone over time. It's another possibility to look into. An X-ray should show

whether the hip joint has arthritis.

BTW when I was looking into TKR, I was in the TJR group, and hip

replacement is WAY more successful than knee replacement -- a lot easier to

do.

How's everyone's winter coming along? Weird?

Ann

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Share on other sites

>

> Mike, did you mean " ITBS is not true arthritis " ? That's how I read

it. ITBS is not even related to arthritis.

That's correct. It sounds like Joi is right on top of it though. I

guess as much as anything I was hoping to save others some of the pain

I was in for the last few years. I should have consulted with Joi when

she joined the group ;). It's funny my doctors recommended cortisone

first. PT was the real solution. I " think " they might have suspected

bursitis also as a possible problem in my case.

Mike

MT

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The bursitis and ITBS can go hand in hand too. Often you’ll have some

bursitis with the ITBS. My IT band wasn’t all that bad so a little

stretching was all it needed. I only wish the bursitis went away with it.

Joi

_____

From: chondromalacia treatment

[mailto:chondromalacia treatment ] On Behalf Of mike_bernhardt

Sent: Saturday, January 20, 2007 5:20 PM

chondromalacia treatment

Subject: Re: Dr Visit

>

> Mike, did you mean " ITBS is not true arthritis " ? That's how I read

it. ITBS is not even related to arthritis.

That's correct. It sounds like Joi is right on top of it though. I

guess as much as anything I was hoping to save others some of the pain

I was in for the last few years. I should have consulted with Joi when

she joined the group ;). It's funny my doctors recommended cortisone

first. PT was the real solution. I " think " they might have suspected

bursitis also as a possible problem in my case.

Mike

MT

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Try this for knee-related hip pain (or vice versa):

Stand sideways to a bed or something else you can lean on. Put the foot of your

good leg behind the foot of your bad leg. Point the toe of the bad leg outward.

Point the toe of the " good " foot toward the heel of the " bad " foot (they should

make a V). Bend over sideways away from the bad side and a little forward (say,

like a 3/4 view of a face). Can you feel a nice pull in the muscle(s) behind

the greater trochanter? Hold for 20-30 sec. Do 3 times. Do often during the

day. I get tremendous relief from this (tight ITBS caused by CP sub-pain) and

eventually the tissues loosen up.

Also, if this doesn't hurt your back, same stance, bend over directly sideways

away from the bad side. This might work better near a wall, resting your

shoulder on the wall. This one directly stretches the IT band right over the

greater trochanter, giving more pull to the IT band. I think this is better

than the exercise where you lie on your back & the PT pulls your bad leg up &

over the good leg to stretch the IT band. In fact, based on what a lot of

people have said in the ITBS forum, I think the PT exercise might irritate the

band & make it tighter.

If any of you get a chance to see " Bodies: The Exhibition " , do. Body parts

could use more labelling, but one of the bodies shows the IT band really well --

it's a lot bigger than I thought. And also, some people in the ITBS group have

had their surgeons find a lot of scar tissue where it rubs over the lateral

femoral epicondyle (if ITBS is a problem for you).

Ann

Dr Visit

I had my visit with the new doc this week (Tuesday). He was very thorough

and took a lot of x-rays of my knees and hip. The x-rays were much better

and more complete than the other guy did. As for my hip.he said that with

the knee problems I have (CP) it is common to have hip problems. Since my

right side has always gone downhill first, my right hip has problems first.

He saw some narrowing of the hip joint and said it's in the early stages of

arthritis. Since it snaps and such and he saw the difference between the two

and with the symptoms, he said the bursitis is common to have. He gave me a

cortisone shot for the bursitis. It's still sore, but does feel a little

better. I'm sure I'll be going back for cortisone shots.he said I can have

3-4 per year. As for the knees.he said right now, the gap between the

patella and femur look ok. He said he could see arthritis in my knees as

well, but there was no surgical intervention that could be done right now.

He wants me to go to the PT and do water therapy and see how that works. I

think if I can get rid of the hip pain, the knee pain can be managed at

least for awhile. He offered no injectable therapy for my knees (Synvisc,

supartz, or whatever they are called). It seems to me that the docs here

don't think they help much so none are willing to try them. He checked my

alignment and said it was good. My question is if the PT says I'm out of

alignment why doesn't the doc say I'm out of alignment? Could the PT be just

taking in to consideration my feet and not my knees? When I wear or don't

wear the orthotics, I really don't notice any improvement or difference with

my knees. Why does there have to be so many different ways to measure

something (like alignment) and each person measures them differently?

Shouldn't there be a standard way to measure? My other question is (and I

know this is not a bursitis group, but since it seems to be related somewhat

I'll go ahead and ask) if I'm supposed to exercise and strengthen my knees,

but am supposed to rest my hip, how can I get my knees better and not make

the hip hurt so bad that I can't move? I asked this of the doc and he said

to work through the hip pain. Well.I'd hate to wish this hip pain on anyone,

but it seems the only way to get it through their heads how much it hurts.

He said to take Advil or Aleve for it but I've tried those and they simply

do not work. He gave no other options for pain. What I still want is to be

able to sleep through the night. I haven't been able to do that for 4 years

now. When I'm tired, I hurt more and it makes it much harder to " work

through the pain " as I have been told to do. I like this doc, just didn't

get much real help other than the cortisone shot and a RX for water

therapy.

Joi & fids

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Cortisone is a bandaid in that it rarely heals the problem. There actually are

some inflammatory conditions that cortisone will heal, but in this case, since

the patella would still rub on the femur, all the cortisone would do is reduce

the inflammation caused by that. You'd still get damage from rubbing, but

inflammatory particles can also do damage, so that part would stop. OTOH,

cortisone itself destroys bone over time, so that's a wash.

I agree that PTs know WAY better than docs do what's probably wrong with you.

That's been my experience.

And there's always knee tape, as I usually say. Sometimes if I use my knee too

much, it bothers me at night, and I have to tape the kneecap over so it's not

touching the femur where it's not supposed to so I can sleep. Better than

meds.

Ann

I am a bit suprised he offered you cortizone shots several times a year, my

first few doctors seemed to think cortizone was a big bandaid and with the area

numb I could be doing more damage to it. Supartz was very painful for me and no

help at all. A physical therapist spends more time looking at you to see what

causes the pain, the direction of your feet, the tilt, your gait so I think this

is why they often blame our pain on alignment. My PT told me the same thing. I

do think a PT gets a better understanding of your pain than a doctor does, since

they spend more time with you.... too bad they don't speak direclty to the

doctors we are seeing.

I was also told aleve and advil, or my favorite was that I could take aleve

and advil but to mix it up with tylenol and motrin so they would not cause

stomach ulcers, oh and to take my aleve with a full meal... a glass of milk

would not be enough. So at 3 am I am supposed to bake some chicken??

My first plan is a pain management specialist (I have a 6 month old so I

cannot go on any medication for several more months). I am not sure how to go

about seeing one, if I have to be sent to one from my ortho, but aleve does not

help me at all. So I guess my only advice is maybe see someone strictly for the

pain, once that is managed a bit and you are sleeping better, work on the PT.

Best of luck to you!!

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I had groin pain and popping in my hip several years ago and a PT had me do this

exercise, which totally cured it:

Stand next to something so you can hold onto it. Get in a sort of lunge

position with the bent knee being on the nonaffected leg. The leg extended

backwards would be the one with the groin pain. Sink down or slide your foot

back to stretch whatever tendon or muscle is in there that's tender. You can

experiment with having the toes of your extended leg pointing forward & pointing

outward. I couldn't believe how much this helped me. I thought I was going to

be crippled forever, but after doing those exercises (and not for very long --

I'm not real good at keeping up w/exercises forever) not there (yet).

Ann

Re: Dr Visit

I am a bit suprised he offered you cortizone shots several times a year, my

first few doctors seemed to think cortizone was a big bandaid and with the

area numb I could be doing more damage to it. Supartz was very painful for

me and no help at all. A physical therapist spends more time looking at you

to see what causes the pain, the direction of your feet, the tilt, your gait

so I think this is why they often blame our pain on alignment. My PT told me

the same thing. I do think a PT gets a better understanding of your pain

than a doctor does, since they spend more time with you.... too bad they

don't speak direclty to the doctors we are seeing.

I was also told aleve and advil, or my favorite was that I could take aleve

and advil but to mix it up with tylenol and motrin so they would not cause

stomach ulcers, oh and to take my aleve with a full meal... a glass of milk

would not be enough. So at 3 am I am supposed to bake some chicken??

My first plan is a pain management specialist (I have a 6 month old so I

cannot go on any medication for several more months). I am not sure how to

go about seeing one, if I have to be sent to one from my ortho, but aleve

does not help me at all. So I guess my only advice is maybe see someone

strictly for the pain, once that is managed a bit and you are sleeping

better, work on the PT.

Best of luck to you!!

wildwest <wildwestnwi (DOT) <mailto:wildwest%40nwi.net> net> wrote:

I had my visit with the new doc this week (Tuesday). He was very thorough

and took a lot of x-rays of my knees and hip. The x-rays were much better

and more complete than the other guy did. As for my hip.he said that with

the knee problems I have (CP) it is common to have hip problems. Since my

right side has always gone downhill first, my right hip has problems first.

He saw some narrowing of the hip joint and said it's in the early stages of

arthritis. Since it snaps and such and he saw the difference between the two

and with the symptoms, he said the bursitis is common to have. He gave me a

cortisone shot for the bursitis. It's still sore, but does feel a little

better. I'm sure I'll be going back for cortisone shots.he said I can have

3-4 per year. As for the knees.he said right now, the gap between the

patella and femur look ok. He said he could see arthritis in my knees as

well, but there was no surgical intervention that could be done right now.

He wants me to go to the PT and do water therapy and see how that works. I

think if I can get rid of the hip pain, the knee pain can be managed at

least for awhile. He offered no injectable therapy for my knees (Synvisc,

supartz, or whatever they are called). It seems to me that the docs here

don't think they help much so none are willing to try them. He checked my

alignment and said it was good. My question is if the PT says I'm out of

alignment why doesn't the doc say I'm out of alignment? Could the PT be just

taking in to consideration my feet and not my knees? When I wear or don't

wear the orthotics, I really don't notice any improvement or difference with

my knees. Why does there have to be so many different ways to measure

something (like alignment) and each person measures them differently?

Shouldn't there be a standard way to measure? My other question is (and I

know this is not a bursitis group, but since it seems to be related somewhat

I'll go ahead and ask) if I'm supposed to exercise and strengthen my knees,

but am supposed to rest my hip, how can I get my knees better and not make

the hip hurt so bad that I can't move? I asked this of the doc and he said

to work through the hip pain. Well.I'd hate to wish this hip pain on anyone,

but it seems the only way to get it through their heads how much it hurts.

He said to take Advil or Aleve for it but I've tried those and they simply

do not work. He gave no other options for pain. What I still want is to be

able to sleep through the night. I haven't been able to do that for 4 years

now. When I'm tired, I hurt more and it makes it much harder to " work

through the pain " as I have been told to do. I like this doc, just didn't

get much real help other than the cortisone shot and a RX for water

therapy.

Joi & fids

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The cortisone was NOT for the knee…it was put directly INTO the bursa on my

hip.

joi

_____

From: chondromalacia treatment

[mailto:chondromalacia treatment ] On Behalf Of Ann

Sent: Saturday, January 20, 2007 8:20 PM

chondromalacia treatment

Subject: Re: Dr Visit

Cortisone is a bandaid in that it rarely heals the problem. There actually

are some inflammatory conditions that cortisone will heal, but in this case,

since the patella would still rub on the femur, all the cortisone would do

is reduce the inflammation caused by that. You'd still get damage from

rubbing, but inflammatory particles can also do damage, so that part would

stop. OTOH, cortisone itself destroys bone over time, so that's a wash.

I agree that PTs know WAY better than docs do what's probably wrong with

you. That's been my experience.

And there's always knee tape, as I usually say. Sometimes if I use my knee

too much, it bothers me at night, and I have to tape the kneecap over so

it's not touching the femur where it's not supposed to so I can sleep.

Better than meds.

Ann

I am a bit suprised he offered you cortizone shots several times a year, my

first few doctors seemed to think cortizone was a big bandaid and with the

area numb I could be doing more damage to it. Supartz was very painful for

me and no help at all. A physical therapist spends more time looking at you

to see what causes the pain, the direction of your feet, the tilt, your gait

so I think this is why they often blame our pain on alignment. My PT told me

the same thing. I do think a PT gets a better understanding of your pain

than a doctor does, since they spend more time with you.... too bad they

don't speak direclty to the doctors we are seeing.

I was also told aleve and advil, or my favorite was that I could take aleve

and advil but to mix it up with tylenol and motrin so they would not cause

stomach ulcers, oh and to take my aleve with a full meal... a glass of milk

would not be enough. So at 3 am I am supposed to bake some chicken??

My first plan is a pain management specialist (I have a 6 month old so I

cannot go on any medication for several more months). I am not sure how to

go about seeing one, if I have to be sent to one from my ortho, but aleve

does not help me at all. So I guess my only advice is maybe see someone

strictly for the pain, once that is managed a bit and you are sleeping

better, work on the PT.

Best of luck to you!!

Recent Activity

a.. 2New Members

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Oh. Good. Only 2 shots. I don't think that would damage your bone.

I'm enjoying our winter, although I've gotten really lazy. The weather here

(Olympia WA) has gone from sunny to rainy, to real rainy, to snowy, to one night

when I could swear a small tornado hit my house (we don't have those big

midwestern tornados here, but funnels have been reported), now today back to

sunny. Unfortunately, being retired, I tend to go to bed late and get up late,

so I miss half the day when the weather's good. I'm NOT looking forward to

summer heat. Last May it hit 101 here(!), and we had several days in the low

90's. If I'm doing any physical work at all, it needs to be in the 60's. You'd

think with all the heat I generate when I do move around, I'd lose weight ...

Ann

Ann,

In my original post I had stated that x-rays did show some early stage hip

arthritis. This is only my second cortisone shot for the bursitis, so not a

lot of shots have been given. Once the hip bursitis pain had lessened I

noticed the joint/groin area hurting more. The Dr said that the hip problem

can exacerbate the bursitis in the hip, which it has. The bursitis was

hurting so much; I hadn't really noticed the joint pain in my hip as it's

not really terrible at this point. My IT band was causing some problems, but

I immediately stretched it and that tightening has gone away. That was the

initial treatment for the hip pain but since it's still hurting so bad, the

Dr took better x-rays (different Dr too) and it's easily seen on the x-ray

that the hip joint is quite different than the other one.

I'm sick of winter.I want an early warm dry spring!!! Anytime would be good

for me.

Joi

And you may really be onto something w/r/t/ Joi's hip pain. Good idea --

really jumped out of the box with that one.

I was thinking, since Joi had had a bunch of cortisone shots for her hip

bursitis, the cortisone may have caused arthritis, since it does destroy

bone over time. It's another possibility to look into. An X-ray should show

whether the hip joint has arthritis.

BTW when I was looking into TKR, I was in the TJR group, and hip

replacement is WAY more successful than knee replacement -- a lot easier to

do.

How's everyone's winter coming along? Weird?

Ann

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I’ll give that a try. The groin area does not hurt all the time, mostly in

the winter or when it’s really humid (fortunately, we don’t live in a very

humid area). The popping happens occasionally and hurts for awhile when it

does happen, but I get over it ok. The hip arthritis is very early stage, so

that is good to know so I can actually do something about it now.

Joi

_____

From: chondromalacia treatment

[mailto:chondromalacia treatment ] On Behalf Of Ann

Sent: Saturday, January 20, 2007 8:25 PM

chondromalacia treatment

Subject: Re: Dr Visit

I had groin pain and popping in my hip several years ago and a PT had me do

this exercise, which totally cured it:

Stand next to something so you can hold onto it. Get in a sort of lunge

position with the bent knee being on the nonaffected leg. The leg extended

backwards would be the one with the groin pain. Sink down or slide your foot

back to stretch whatever tendon or muscle is in there that's tender. You can

experiment with having the toes of your extended leg pointing forward &

pointing outward. I couldn't believe how much this helped me. I thought I

was going to be crippled forever, but after doing those exercises (and not

for very long -- I'm not real good at keeping up w/exercises forever) not

there (yet).

Ann

Re: Dr Visit

I am a bit suprised he offered you cortizone shots several times a year, my

first few doctors seemed to think cortizone was a big bandaid and with the

area numb I could be doing more damage to it. Supartz was very painful for

me and no help at all. A physical therapist spends more time looking at you

to see what causes the pain, the direction of your feet, the tilt, your gait

so I think this is why they often blame our pain on alignment. My PT told me

the same thing. I do think a PT gets a better understanding of your pain

than a doctor does, since they spend more time with you.... too bad they

don't speak direclty to the doctors we are seeing.

I was also told aleve and advil, or my favorite was that I could take aleve

and advil but to mix it up with tylenol and motrin so they would not cause

stomach ulcers, oh and to take my aleve with a full meal... a glass of milk

would not be enough. So at 3 am I am supposed to bake some chicken??

My first plan is a pain management specialist (I have a 6 month old so I

cannot go on any medication for several more months). I am not sure how to

go about seeing one, if I have to be sent to one from my ortho, but aleve

does not help me at all. So I guess my only advice is maybe see someone

strictly for the pain, once that is managed a bit and you are sleeping

better, work on the PT.

Best of luck to you!!

wildwest <wildwestnwi (DOT) <mailto:wildwest%40nwi.net> net> wrote:

I had my visit with the new doc this week (Tuesday). He was very thorough

and took a lot of x-rays of my knees and hip. The x-rays were much better

and more complete than the other guy did. As for my hip.he said that with

the knee problems I have (CP) it is common to have hip problems. Since my

right side has always gone downhill first, my right hip has problems first.

He saw some narrowing of the hip joint and said it's in the early stages of

arthritis. Since it snaps and such and he saw the difference between the two

and with the symptoms, he said the bursitis is common to have. He gave me a

cortisone shot for the bursitis. It's still sore, but does feel a little

better. I'm sure I'll be going back for cortisone shots.he said I can have

3-4 per year. As for the knees.he said right now, the gap between the

patella and femur look ok. He said he could see arthritis in my knees as

well, but there was no surgical intervention that could be done right now.

He wants me to go to the PT and do water therapy and see how that works. I

think if I can get rid of the hip pain, the knee pain can be managed at

least for awhile. He offered no injectable therapy for my knees (Synvisc,

supartz, or whatever they are called). It seems to me that the docs here

don't think they help much so none are willing to try them. He checked my

alignment and said it was good. My question is if the PT says I'm out of

alignment why doesn't the doc say I'm out of alignment? Could the PT be just

taking in to consideration my feet and not my knees? When I wear or don't

wear the orthotics, I really don't notice any improvement or difference with

my knees. Why does there have to be so many different ways to measure

something (like alignment) and each person measures them differently?

Shouldn't there be a standard way to measure? My other question is (and I

know this is not a bursitis group, but since it seems to be related somewhat

I'll go ahead and ask) if I'm supposed to exercise and strengthen my knees,

but am supposed to rest my hip, how can I get my knees better and not make

the hip hurt so bad that I can't move? I asked this of the doc and he said

to work through the hip pain. Well.I'd hate to wish this hip pain on anyone,

but it seems the only way to get it through their heads how much it hurts.

He said to take Advil or Aleve for it but I've tried those and they simply

do not work. He gave no other options for pain. What I still want is to be

able to sleep through the night. I haven't been able to do that for 4 years

now. When I'm tired, I hurt more and it makes it much harder to " work

through the pain " as I have been told to do. I like this doc, just didn't

get much real help other than the cortisone shot and a RX for water

therapy.

Joi & fids

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Share on other sites

I’m in Eastern WA and grew up in western WA! We are pretty much neighbors!

We’ve had a really, really cold winter…we are just today above 30. Our high

has been in the upper teens to about 20-22 max, with lows in the single

digits. Then there’s the snow…I don’t mind some, but too much and the cold

on top of that makes it hard like ice and hard to walk on! I haven’t fallen

yet, but have been close! That’s hard on the knees and hip for sure.

As for the cortisone shots…I’m hoping for only a total of four, but if it

takes more, I’m willing. He already said I’d need a new hip eventually, so

I’m looking at least one hip replacement and two knee replacements. I just

want to postpone it for as long as possible yet still have quality of

life…my kids are only 10 and 14, so we want to do stuff as a family!

Joi

_____

From: chondromalacia treatment

[mailto:chondromalacia treatment ] On Behalf Of Ann

Sent: Saturday, January 20, 2007 8:30 PM

chondromalacia treatment

Subject: Re: Dr Visit

Oh. Good. Only 2 shots. I don't think that would damage your bone.

I'm enjoying our winter, although I've gotten really lazy. The weather here

(Olympia WA) has gone from sunny to rainy, to real rainy, to snowy, to one

night when I could swear a small tornado hit my house (we don't have those

big midwestern tornados here, but funnels have been reported), now today

back to sunny. Unfortunately, being retired, I tend to go to bed late and

get up late, so I miss half the day when the weather's good. I'm NOT looking

forward to summer heat. Last May it hit 101 here(!), and we had several days

in the low 90's. If I'm doing any physical work at all, it needs to be in

the 60's. You'd think with all the heat I generate when I do move around,

I'd lose weight ...

Ann

Ann,

In my original post I had stated that x-rays did show some early stage hip

arthritis. This is only my second cortisone shot for the bursitis, so not a

lot of shots have been given. Once the hip bursitis pain had lessened I

noticed the joint/groin area hurting more. The Dr said that the hip problem

can exacerbate the bursitis in the hip, which it has. The bursitis was

hurting so much; I hadn't really noticed the joint pain in my hip as it's

not really terrible at this point. My IT band was causing some problems, but

I immediately stretched it and that tightening has gone away. That was the

initial treatment for the hip pain but since it's still hurting so bad, the

Dr took better x-rays (different Dr too) and it's easily seen on the x-ray

that the hip joint is quite different than the other one.

I'm sick of winter.I want an early warm dry spring!!! Anytime would be good

for me.

Joi

And you may really be onto something w/r/t/ Joi's hip pain. Good idea --

really jumped out of the box with that one.

I was thinking, since Joi had had a bunch of cortisone shots for her hip

bursitis, the cortisone may have caused arthritis, since it does destroy

bone over time. It's another possibility to look into. An X-ray should show

whether the hip joint has arthritis.

BTW when I was looking into TKR, I was in the TJR group, and hip

replacement is WAY more successful than knee replacement -- a lot easier to

do.

How's everyone's winter coming along? Weird?

Ann

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Share on other sites

If there is even a chance of ice or slush I stay in the house, no matter what

strength training I do it seems my knees are not strong enough to catch me if I

start to slip. I fell about 3 years ago and now I have slippery-phobia!!!

wildwest <wildwest@...> wrote: I’m in Eastern WA and grew up in

western WA! We are pretty much neighbors!

We’ve had a really, really cold winter…we are just today above 30. Our high

has been in the upper teens to about 20-22 max, with lows in the single

digits. Then there’s the snow…I don’t mind some, but too much and the cold

on top of that makes it hard like ice and hard to walk on! I haven’t fallen

yet, but have been close! That’s hard on the knees and hip for sure.

As for the cortisone shots…I’m hoping for only a total of four, but if it

takes more, I’m willing. He already said I’d need a new hip eventually, so

I’m looking at least one hip replacement and two knee replacements. I just

want to postpone it for as long as possible yet still have quality of

life…my kids are only 10 and 14, so we want to do stuff as a family!

Joi

_____

From: chondromalacia treatment

[mailto:chondromalacia treatment ] On Behalf Of Ann

Sent: Saturday, January 20, 2007 8:30 PM

chondromalacia treatment

Subject: Re: Dr Visit

Oh. Good. Only 2 shots. I don't think that would damage your bone.

I'm enjoying our winter, although I've gotten really lazy. The weather here

(Olympia WA) has gone from sunny to rainy, to real rainy, to snowy, to one

night when I could swear a small tornado hit my house (we don't have those

big midwestern tornados here, but funnels have been reported), now today

back to sunny. Unfortunately, being retired, I tend to go to bed late and

get up late, so I miss half the day when the weather's good. I'm NOT looking

forward to summer heat. Last May it hit 101 here(!), and we had several days

in the low 90's. If I'm doing any physical work at all, it needs to be in

the 60's. You'd think with all the heat I generate when I do move around,

I'd lose weight ...

Ann

Ann,

In my original post I had stated that x-rays did show some early stage hip

arthritis. This is only my second cortisone shot for the bursitis, so not a

lot of shots have been given. Once the hip bursitis pain had lessened I

noticed the joint/groin area hurting more. The Dr said that the hip problem

can exacerbate the bursitis in the hip, which it has. The bursitis was

hurting so much; I hadn't really noticed the joint pain in my hip as it's

not really terrible at this point. My IT band was causing some problems, but

I immediately stretched it and that tightening has gone away. That was the

initial treatment for the hip pain but since it's still hurting so bad, the

Dr took better x-rays (different Dr too) and it's easily seen on the x-ray

that the hip joint is quite different than the other one.

I'm sick of winter.I want an early warm dry spring!!! Anytime would be good

for me.

Joi

And you may really be onto something w/r/t/ Joi's hip pain. Good idea --

really jumped out of the box with that one.

I was thinking, since Joi had had a bunch of cortisone shots for her hip

bursitis, the cortisone may have caused arthritis, since it does destroy

bone over time. It's another possibility to look into. An X-ray should show

whether the hip joint has arthritis.

BTW when I was looking into TKR, I was in the TJR group, and hip

replacement is WAY more successful than knee replacement -- a lot easier to

do.

How's everyone's winter coming along? Weird?

Ann

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Share on other sites

I don’t blame you there, but I have to outside! I have to go to work…take

the kids where they need to go…church on Sunday…etc…etc…etc…seems to never

end.

Joi

_____

From: chondromalacia treatment

[mailto:chondromalacia treatment ] On Behalf Of shannon webb

Sent: Saturday, January 20, 2007 9:41 PM

chondromalacia treatment

Subject: RE: Dr Visit

If there is even a chance of ice or slush I stay in the house, no matter

what strength training I do it seems my knees are not strong enough to catch

me if I start to slip. I fell about 3 years ago and now I have

slippery-phobia!!!

wildwest <wildwestnwi (DOT) <mailto:wildwest%40nwi.net> net> wrote: I’m in

Eastern WA and grew up in western WA! We are pretty much neighbors!

We’ve had a really, really cold winter…we are just today above 30. Our high

has been in the upper teens to about 20-22 max, with lows in the single

digits. Then there’s the snow…I don’t mind some, but too much and the cold

on top of that makes it hard like ice and hard to walk on! I haven’t fallen

yet, but have been close! That’s hard on the knees and hip for sure.

As for the cortisone shots…I’m hoping for only a total of four, but if it

takes more, I’m willing. He already said I’d need a new hip eventually, so

I’m looking at least one hip replacement and two knee replacements. I just

want to postpone it for as long as possible yet still have quality of

life…my kids are only 10 and 14, so we want to do stuff as a family!

Joi

_____

From: chondromalaciacommu <mailto:chondromalacia treatment%40>

nity

[mailto:chondromalaciacommu

<mailto:chondromalacia treatment%40> nity ] On

Behalf Of Ann

Sent: Saturday, January 20, 2007 8:30 PM

chondromalaciacommu <mailto:chondromalacia treatment%40>

nity

Subject: Re: Dr Visit

Oh. Good. Only 2 shots. I don't think that would damage your bone.

I'm enjoying our winter, although I've gotten really lazy. The weather here

(Olympia WA) has gone from sunny to rainy, to real rainy, to snowy, to one

night when I could swear a small tornado hit my house (we don't have those

big midwestern tornados here, but funnels have been reported), now today

back to sunny. Unfortunately, being retired, I tend to go to bed late and

get up late, so I miss half the day when the weather's good. I'm NOT looking

forward to summer heat. Last May it hit 101 here(!), and we had several days

in the low 90's. If I'm doing any physical work at all, it needs to be in

the 60's. You'd think with all the heat I generate when I do move around,

I'd lose weight ...

Ann

Ann,

In my original post I had stated that x-rays did show some early stage hip

arthritis. This is only my second cortisone shot for the bursitis, so not a

lot of shots have been given. Once the hip bursitis pain had lessened I

noticed the joint/groin area hurting more. The Dr said that the hip problem

can exacerbate the bursitis in the hip, which it has. The bursitis was

hurting so much; I hadn't really noticed the joint pain in my hip as it's

not really terrible at this point. My IT band was causing some problems, but

I immediately stretched it and that tightening has gone away. That was the

initial treatment for the hip pain but since it's still hurting so bad, the

Dr took better x-rays (different Dr too) and it's easily seen on the x-ray

that the hip joint is quite different than the other one.

I'm sick of winter.I want an early warm dry spring!!! Anytime would be good

for me.

Joi

And you may really be onto something w/r/t/ Joi's hip pain. Good idea --

really jumped out of the box with that one.

I was thinking, since Joi had had a bunch of cortisone shots for her hip

bursitis, the cortisone may have caused arthritis, since it does destroy

bone over time. It's another possibility to look into. An X-ray should show

whether the hip joint has arthritis.

BTW when I was looking into TKR, I was in the TJR group, and hip

replacement is WAY more successful than knee replacement -- a lot easier to

do.

How's everyone's winter coming along? Weird?

Ann

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