Re: Re: replacement joints.

[Guest guest]

I'm in the same boat as you . I'm only 29 years old and need a hip

replacement and no one wants to do it because it will have to be done at least

twice in my lifetime then and from what I am told the second surgery is a lot

harder on your body than the first one.

<jennidbug@...> wrote: I am only affected in my right elbow

joint as of now. It started

around 6 years ago. My doc said replacement surgery isn't practical

for me, as I'm only 32 years old and the joint wouldn't last my

lifetime without being replaced again. He did go in and

athroscopically remove some inflammation and a bone spur, but now

I've developed scar tissue and they are going to have to do open

surgery on my elbow this time. In the meantime, I'm coping best I

can by taking MTX, Mobic and trying to get on Enbrel or Humira. Good

luck to you.

Jenni

[Guest guest]

i should have had a hip replacement when I was 44 years old . instead I was

made to wait 10 agonizing years . By that time i needed them both done . they

were so bad . . I was in agony for years . I wish I hadnt waited . I needed

the right one done twice because I had untreated hip dysplasia . I was foolish

to wait and if I had it to do over again . I would not wait . I can now walk

without pain and I have my life back You are young . Dont waste your young

Years in agony . You will favor your good hip and damage that one too .

Haveyour hip fixed and aviod all that medication like enbrel . the doctors think

I have ms . I was on enbrel for years to relieve pain . also arava and mtx .

everything . I have an enlarged liver also from prolonged medication. I had

no choice but to take these drugs because I was in agony and the doctors

would not give me pain medication . [ I am also a registered nurse .] take my

advice The doctors are giving you bad advice. At least consider having the hip

replaced so you can walk without pain and enjoy your young years , I was in

pain from age 38 until 53 . I suffered all those years FOR NOTHING. My

children would have benifited from having a mother who was " t suffering all the

time . By the time Ihad my hips replaced they were fused and I was in a

wheelchair . I can now walk and travel and do what i want . Just my thoughts .

cathy

from massachusetts

[Guest guest]

I was in pain for years but because I had somewhat of a stoic personality

the doctor did not seem to think there was any serious damage . I looked like

the picture of health in the respect that I did " nt look sick . my doctor was

the chief of rhematology at a large boston hospital . he was wrong . no xrays

ever . so when he finally did them . Oh boy ..what a surprize .... needed

hip replacements ..had them done 1 week apart .!! that's how bad they were .

.. I kept asking for xrays . [made me feel like a hypochondriac ] but doctors

insisted that i would be fine. maybe thought I was exagerrating my pain.

we all know now that some people don " t show pain on their face or in there

personality . I was one who suffered in silence. Just my personality . It

doesn " t mean I ws " t in pain . I verbally announced that I was in pain but They

didn " t listen . when i was at home i stayed in bed most of the time . My hands

though are really crippled up . they should have investigated further . Too

little too late. cathy from massachusetts.

[Guest guest]

How did you learn you had hip damage? Did x-rays show the deteriation?

Thanks,

Rhonda

-- Re: [ ] Re: replacement joints.

i should have had a hip replacement when I was 44 years old . instead I was

made to wait 10 agonizing years . By that time i needed them both done .

they

were so bad . . I was in agony for years . I wish I hadnt waited . I needed

the right one done twice because I had untreated hip dysplasia . I was

foolish

to wait and if I had it to do over again . I would not wait . I can now

walk

without pain and I have my life back You are young . Dont waste your

young

Years in agony . You will favor your good hip and damage that one too .

Haveyour hip fixed and aviod all that medication like enbrel . the doctors

think

I have ms . I was on enbrel for years to relieve pain . also arava and mtx .

everything . I have an enlarged liver also from prolonged medication. I

had

no choice but to take these drugs because I was in agony and the doctors

would not give me pain medication . [ I am also a registered nurse .] take

my

advice The doctors are giving you bad advice. At least consider having the

hip

replaced so you can walk without pain and enjoy your young years , I was

in

pain from age 38 until 53 . I suffered all those years FOR NOTHING. My

children would have benifited from having a mother who was " t suffering all

the

time . By the time Ihad my hips replaced they were fused and I was in a

wheelchair . I can now walk and travel and do what i want . Just my

thoughts . cathy

from massachusetts

[Guest guest]

I found out about my from getting a bone scan done. Although I knew it because I

limp and have really bad pain in my hip.

~

Crane Family <cranefamily6@...> wrote:

How did you learn you had hip damage? Did x-rays show the deteriation?

Thanks,

Rhonda

[Guest guest]

Well I wish I could find a doctor to agree with you, that is the problem. So far

everyone has told me they wouldn't touch it until I can't walk anymore. And I

have three little girls to run after!

P.S. I'm not Jeff by the way, LOL, I'm Mrs. Jeff, I tried to change my name on

but it won't work!

~

math_nawi <math_nawi@...> wrote:

- thanks for a strong message! Very well written!

and Jeff - I don't need joint replacement at this time, but I

worked with a lot of folks who got new knees and hips. IMHO is

right on the money. Get your new joint and enjoy your life. Depending

on who you speak to joint life is 10-15 years. So what! In 10 or 15

years they may be growing us new legs for all we know. Things are

advancing very quickly. Besides, the 2nd hip replacements aren't too

bad, it's the 3rd that can be tough because of previous scarring. But

by then I am sure medicine will think current hip surgery as

antequated and will have something better to offer.

Good luck on your journey! -

[Guest guest]

I'm like that too, I tell the doctors I'm in pain but I handle it well and they

don't seem to listen. In regards to my hip though they have seen a bone scan

with it and even told me that I have almost no cartilidge left in the joint but

still will not operate. I even have one leg an inch longer than the other, and I

wasn't born that way. I had to point that out to them, they didn't even notice.

I'll keep trying and maybe eventually someone will listen to me about my hip.

~

pretzelb3@... wrote:

I was in pain for years but because I had somewhat of a stoic personality

the doctor did not seem to think there was any serious damage . I looked like

the picture of health in the respect that I did " nt look sick . my doctor was

the chief of rhematology at a large boston hospital . he was wrong . no xrays

ever . so when he finally did them . Oh boy ..what a surprize .... needed

hip replacements ..had them done 1 week apart .!! that's how bad they were .

.. I kept asking for xrays . [made me feel like a hypochondriac ] but doctors

insisted that i would be fine. maybe thought I was exagerrating my pain.

we all know now that some people don " t show pain on their face or in there

personality . I was one who suffered in silence. Just my personality . It

doesn " t mean I ws " t in pain . I verbally announced that I was in pain but They

didn " t listen . when i was at home i stayed in bed most of the time . My hands

though are really crippled up . they should have investigated further . Too

little too late. cathy from massachusetts.

[Guest guest]

,

I absolutely know what you mean about voicing your pain. I wondered if

maybe they were afraid of showing compassion or what. I was made to feel

guilty

for mentioning pain in several joints at once because my rheumy always said I

had a good range of movement in all those joints. Well yeah, with him moving

them I did. He finally ordered a body scan and that was the end of his

looking at me like I was nuts and also, my Social Security Disability was

approved almost immediately after hearing I had those xrays. I have finally

come to

realize that maybe they see so many patients in pain that they have become a

little complacent, while to us it is all too personal. It hurt me most at

the beginning of my diagnosis when my family treated me as if I were faking

the pain. At almost 60 years old, I couldn't quite under-stand why I would go

to the trouble of faking it, because as you say people react differently to

pain, I only want to be left alone when I hurt. Hope this finds everything

doing well for you.

Janet

[Guest guest]

shannon ' what state do you live in?? if you live near boston I can give you

the name of a great doctor [. probably one of the best in the country,] dr.

donald reilly at new england baptist hospital and also works at brigham and

womens hospital in boston. cathy from ma.

[Guest guest]

Dear ,

Have you considered seeing a pain specialist for your hip pain? Regardless

if you handle the pain well, you are still in pain and they still should be

listening to you. A lot of rheumatologists don’t prescribe pain medication

because they have so many patients in pain, they feel they would go crazy

trying to keep tract of all of them. Finding a pain clinic is what saved me

and at the time I didn’t’ even know I had PA, everyone just thought I had a

bad TMJ joint. With the advances in pain control, you shouldn’t have to

suffer needlessly. I hope you can find someone who will listen to you, and

you can live your life with your pain under control. Good luck, Fran from

Florida

PS. from Massachusetts proves a great point. It’s a shame her

doctor never “heard” her pain, and she ended up suffering more because of

it.

..

I'm like that too, I tell the doctors I'm in pain but I handle it well and

they don't seem to listen. In regards to my hip though they have seen a bone

scan with it and even told me that I have almost no cartilidge left in the

joint but still will not operate. I even have one leg an inch longer than

the other, and I wasn't born that way. I had to point that out to them, they

didn't even notice. I'll keep trying and maybe eventually someone will

listen to me about my hip.

~

pretzelb3@... wrote:

I was in pain for years but because I had somewhat of a stoic personality

the doctor did not seem to think there was any serious damage . I looked

like

the picture of health in the respect that I did " nt look sick . my doctor

was

the chief of rhematology at a large boston hospital . he was wrong . no

xrays

ever . so when he finally did them . Oh boy ..what a surprize .... needed

hip replacements ..had them done 1 week apart .!! that's how bad they were

..

.. I kept asking for xrays . [made me feel like a hypochondriac ] but

doctors

insisted that i would be fine. maybe thought I was exagerrating my pain.

we all know now that some people don " t show pain on their face or in there

personality . I was one who suffered in silence. Just my personality . It

doesn " t mean I ws " t in pain . I verbally announced that I was in pain but

They

didn " t listen . when i was at home i stayed in bed most of the time . My

hands

though are really crippled up . they should have investigated further . Too

little too late. cathy from massachusetts.

[Guest guest]

Yes Janet . I agree with you . I always wondered . everyone is so afraid

we " re going to ask for pain medication . I went 18 years without pain med's .

and lets face it if we can' get medication then who is pain medication for . It

seems the drug addicts don't have a problem getting it from doctors . this

does " T even make sense does it? I am 56 and have had 3 hip replacements,hand

surgery and other stuff and I was turned down for soc sec. because the ay

decided I really wasn't all that sick . just crazy isn:t it? cathy from ma.

[Guest guest]

Hi ,

Hope today is a good day for you. The rain here in California is depressing

everyone, not just me. A fact I found out years ago about drug addicts is

that they know how to work people, not just doctors, to get what they want.

My mother, God bless her, was hooked on pers-cription pain medications for 10

years after she had a bout of shingles. She was also a cancer survivor so

she saw many different doctors. I worked with her neurologist after she had a

brain anheurism (spell???) to take her off them. We had to search her

entire house and every purse and every pocket in her closet for Tylox and

Atavan.

I went to see her pimary doctor and her pharmacist also. So, that is just a

glimpse of the other side. They say they have proven that chronic pain

sufferers such as we are should be given the med-ication we need because the

brain has a pain memory. If pain is allowed to linger without easing, the

brain

remembers it where it was and lets it stay. I believe this is what happened

with my Mother. Even though she lived another 20 years, she was never the

same.

Janet

[Guest guest]

I think you are right. I'm going to a new doctor the end of April, it's my own

problem, I am not aggressive enough. I'm going to work on it.

Thanks!

math_nawi <math_nawi@...> wrote:

I hope I'm not out of place here, but I think you need to find a new

doc. The decision on joint replacement at this point should ultimately

be up to you. They can suggest, but should not dictate in this case.

In the past I've given anesthesia for knee and hip replacements on

young adults, so I know it is done. Although being conservative is a

good quality to have in a doctor, some docs can be too conservative

for particular patients.

I would politely take a strong stand with your doc and if he doesn't

relent look for another who will be more considerate of your wishes.

Wishing you the best of luck on your journey -

[Guest guest]

Don't worry about the name mixup, that's my fault with the email address coming

up as Jeff. Anyway there is a University in the city, maybe I should look into

that. I really would like to get this fixed while I'm still young and able to

enjoy my daughters. As it is now I don't have any good pain medication and I end

up popping 6-8 OTC pills a day and if that doesn't work I drink wine by the end

of the day. It's a vicious cycle that I'm in and really bad for my poor liver

and stomache. But, this group has been a godsend in giving me the insight I need

so I can be prepared when I go to the doctor. We'll see what this new doctor

says.

~

math_nawi <math_nawi@...> wrote:

Hi again

Sorry for the name mixup! And also that you can't find a doc to agree

with the joint replacement.

Is there a University Medical Center nearby? Sometimes the academic

centers are more agreeable to this than doctors in a community practice.

Either way, I am sorry you are caught in such a frustrating situation,

and hope you can find a way through.

I hate it when docs say you have to tough it out with the pain - if

they were in pain I wonder if their treatment opinions would

change...( arrrggght! )

[Guest guest]

Dear Fran,

I never heard of a pain clinic, can you tell me how you go about finding one?

Thanks!

Fran Mishler <fran@...> wrote:

Dear ,

Have you considered seeing a pain specialist for your hip pain? Regardless

if you handle the pain well, you are still in pain and they still should be

listening to you. A lot of rheumatologists don’t prescribe pain medication

because they have so many patients in pain, they feel they would go crazy

trying to keep tract of all of them. Finding a pain clinic is what saved me

and at the time I didn’t’ even know I had PA, everyone just thought I had a

bad TMJ joint. With the advances in pain control, you shouldn’t have to

suffer needlessly. I hope you can find someone who will listen to you, and

you can live your life with your pain under control. Good luck, Fran from

Florida

PS. from Massachusetts proves a great point. It’s a shame her

doctor never “heard” her pain, and she ended up suffering more because of

it.

[Guest guest]

Gosh I wish I live in MA, I love it there, I would live there in a heartbeat,

but unfortunately I live in Illinois.

~

pretzelb3@... wrote:

shannon ' what state do you live in?? if you live near boston I can give you

the name of a great doctor [. probably one of the best in the country,] dr.

donald reilly at new england baptist hospital and also works at brigham and

womens hospital in boston. cathy from ma.

[Guest guest]

also shannon .. whenthe doctors tell you you are too young . then you must

say to them .there are children who have hip replacements who have arthritis so

they won't be in wheelchairs all their growing years . also if necessary

call a childrens hospital and talk to a rhematologist there to get some answers

to your questions . then ask for a referral to an adult rhematologist or

surgeonfrom him [or her] . when I was in the hospital there was a 20 year old

woman who was having both hips replaced . also what about kids or young people

who are in car accidents and wreck their hips ..the doctors fix those ! . keep

looking for answers and just be cautious . you will find a doctor . ask

around . cathy from ma.

[Guest guest]

,

You are so right! I'm going to go in to this new doctor's office with a whole

new perspective! Although I'm sitting here thinking to myself I never thought

I'd be trying to talk the doctor's into giving me major surgery. It's scary but

I want to enjoy my life now, and I'm tired of everyone looking at me and asking

me questions. One of my five year old twins once told me that I walk like a

penguin. She was trying to be nice but I was devastated! Thank you so so much

for all your help. I will definetely let you know what the doctor tells me.

Thanks!

pretzelb3@... wrote:

also shannon .. whenthe doctors tell you you are too young . then you must

say to them .there are children who have hip replacements who have arthritis so

they won't be in wheelchairs all their growing years . also if necessary

call a childrens hospital and talk to a rhematologist there to get some answers

to your questions . then ask for a referral to an adult rhematologist or

surgeonfrom him [or her] . when I was in the hospital there was a 20 year old

woman who was having both hips replaced . also what about kids or young people

who are in car accidents and wreck their hips ..the doctors fix those ! . keep

looking for answers and just be cautious . you will find a doctor . ask

around . cathy from ma.

[Guest guest]

i wish you luck . Just think everything out and don " t rush . get several

opinions if you have to m. my children were 6 years old and eight years old

when

I got sick . so it was most of their growing years that i was incapacitated

and just about bedridden. . any kind of surgery can be a risk but find out

and research doctors get opinions from their patients . I wish you luck .

keep in touch . cathy from mass