Re: ?Replacements?

[Guest guest]

well Sylvia I can answer part of that question. About why the docs wait

so long to do surgery. It's this way - no man made joint is ever as good

as the original. And everytime a person is opened up for a surgery,

there is a risk of infection. Anytime any joint is replaced there is the

risk of rejection. So, I would suspect that docs like to do the least

invasive procedures first, then work their way up. I know my rheumy is

doing that. Surgery is the last resort. It's painful, expensive, risky

and a gamble. Will you actually be better off or worse off? It's always

a question.

I just recently had cataract surgery and now wish I hadn't. I think I

could have lived a little longer with those cataracts now that I am using

implanted lenses. I have to go back into surgery again and have the new

lenses lazared. They are already clouded over, and it's been only 2

months. I have a glare that I can't get rid of so being out in the

sunlight is a really interesting experience, as is being under

flourescent lights at the stores.

Plus, I now need glasses to see anything up close which makes it hard to

read, write, use the computer, etc. I can't thread a needle now without

magnifying glasses. And I can't see distance that well without the help

of glasses. Was I better off before? I think so. I mean, the cataracts

were small, but dead center and very dense. I couldn't drive at night in

the rain, and I was beginning to not be able to see things when they were

against a bright light. Occasionally I had to wear two pairs of

sunglasses. At night I had to wear amber sunglasses to stop the glare

from the headlights. I really don't see much improvement. *sigh*

So, maybe that's why they wait so long.

Jenna

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[Guest guest]

Sylvia

I am not one of the above, but I do know the reason the Physical

Therapist gave me. Mine is to point of excruciating pain. I literally

grit my teeth, and gasp in air with each breath causing pain IN KNEES.

It hurts and rubs when still, it wakes me up on fire, swollen, shooting

pains, dull pains, gripping pains.Then the feeling of being hit with

fist in knees. I want to just throw up... pain, pain. Then the muscles

above knee (the FM) just go berserk! All body parts rebel.

When I was going to therapist, I asked her about replacements. She said

HER point of view... WAIT as long as you can stand it. I told her I just

about could not stand it now. She said... oh, it WILL get worse...you

will look back on this day, as a good day.

She says that the replacements are SUPPOSE to last about 15 years. But

that in her years of therapy, she had NEVER seen one last more than

several years. And she says that in her opinion it is FAR FROM

SUCCESSFUL. (her knees are getting this way also, she said!) And in

those years the surgery gains you, there was STILL considerable pain off

and on, and complications. It is not done to give you complete renewed

USE. It is done, to just let you walk without pain, and get a little

movement. She said that me being 45 (oops...I turned 46 yesterday!)

that if I had it done now, it would be about like it is now again,

before I was 60. (depending on activity level, or not...) She said that

in her OPINION this surgery is not a miracle cure for those ol knees.

Exercising and strengthening, and strengthening muscles do outstanding

amount of good...wether we think it does or not.

She said she has patients that would not understand this SURGERY did not

CURE anything... it only made it feel as if it had, in the beginning.

And so they went out and resumed activities they did when they were

young! Results? WORSE off that before surgery.

Now my opinion... I think the surgery is one of those iffy things. And

IF it is not successful, it will cause worse problems than what you

started with. I am not a gambler...and if I was, I would want to see

odds greater...much greater, than failure.

Have you typed in KNEE REPLACEMENT PRO CON SURGERY in a search engine

yet and read all info? It will make you stop and think.

Yes, I am in severe pain with mine. I can not even go to the grocery

store and finish buying groceries, I have to STOP part way through, and

go out and sit on bench then go back and get basket and resume. If I

stand for more than 5-10 minutes, I literally want to die. I just suck

in deep breaths, and try to grit teeth through the pain. When I go

shopping, if I stay more than 30 minutes in a store, the FM flares up so

bad I am sick to stomach, and knee is so gimpy, I about can't make it to

the car fast enough! I have to wear a brace just to hold it together

well enough to not " give way " . This is why I fell in May. The knee did

not do what it was suppose to do. And when I try to drive back home, I

can hardly hold my arm UP to steering wheel to drive, my neck feels like

it will not hold my head up. I am pitiful mess. But thank God, not as

bad off as others. One day, when I am ready to do it, I will send you

all a LINK to my Web Pages, and let you SEE what all I was capable of

just a short 1 1/2 to 2 years ago. You would be amazed. That is why I am

having such hard time coping with this. I look in mirror, and I do not

even know who this person is now.

Also, if I did KNEE replacement, I have wondered what effect it would

have on my Fibromyalgia... would I have tremendous flare while

recouping? I could not take all this. And how would my other ailments be

able to cope with any infections that could arise from knee surgery?

What would my immune system do with all this extra work of healing from

a surgery? I do have Osteo bad. Osteo Arthritis, osteoporosis. Bad

disc... woe is me! (but one good thing... do not have PMS! Went through

change around 40!!! Lucky me!)

My next visit to doctor I will ask for some pain relief. I can no longer

suffer needlessly.

It may not help much, but will a little. I will also ask (no, TELL)

him to change other meds for the arthritis. The ones now have been

totally unsuccessful.

And I still say, " I don't know how the ones of you that have suffered

with all this for years and years, keep going! You are truly amazing

personalities. I think I whine more than any of you, and I have piddly

symptoms compared to all of you out there. "

Shoot! I would go through childbirth again, with no medication... if I

could have one day with no hurting. I really would. Childbirth was a

piece of cake compared to this. How about you all?

Susie

booper51@... wrote:

>

>

[eGroups] My Groups | Main Page | Start a new

group!

>

> Rainy, , Jenna, Jeanette, , Terry, & a.

> I hope you don't mind me addressing this to all of you at once. This

> way it

> is less overwhelming in the beginning. You said it!! The email is

> coming in

> like crazy. But I take comfort in it and have read a lot and already

> learned

> a great deal.

> Thanks for your comforting and kind words of support. It is both

> wonderful

> and sad at the same time that we have this group. Wonderful that

> everyone is

> supportive, understanding and listens. Sad that there is a real need

> for

> this group.

>

> I have several questions for everyone that I would be most interested

> in

> hearing the reasons their Dr's give them.

>

> If the joint is degenerating and there is no known cure, then why do

> Dr's

> wait so long to do successful (keyword) prosthetic replacements for

> patients

> with RA? Why do they make us suffer with this horrendous pain for

> years and

> years? Why must we wait until the cartiledge is completely worn out

> and the

> bones are rubbing together? Even if they find a cure, will it

> re-generate

> the bones? Are the Dr's that prescribe these drugs along with the

> pharmaceutical companies making tons of money... at our expense? If

> joints

> were replaced at onset of RA, how much money would they be losing? Do

> you

> think that Dr's diagnosis Fibromyalgia because it's too much trouble

> to look

> any further and use this as a catch-all diagnoses? These questions

> have

> haunted me for a long time and will probably continue to haunt me.

> You can

> all tell that I'm not a Dr lover these days.

>

> My thoughts and prayers go out to all those that are hurting.

> Sylvia

>

> PS to Rainy, What about " Sylvia's Mother said.. " I hear that one

> almost as

> much as " how do you call your lover boy? "

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

[Guest guest]

Sylvia, I am not one of the above that you posed the question to, either, but I

wanted to add my quick 2 cents. I haven't written much lately for personal

reasons, but I've been on the list for about as long as it as been around (2

years) and I can assure you that all the advice you receive here is out of

genuine concern and compassion for your situation based on our many, diversified

experiences. That's what makes this group so special.

With that in mind, I want to say that Jenna and both have some very valid

points to consider in direct response to your question about why most physicians

want patients to wait until " they just can't take it anymore. " I'll try and

keep this brief (I can get a little long-winded!) since my neck really hurts

tonight and I've been up most of the night, but I really felt compelled to

respond.

I am by no means an expert on this subject, I just wanted to share my experience

with you. My brief bio: I am a 32-year-old female diagnosed with severe,

aggressive, RA 14 years ago. Been through the same meds a lot of people on the

list have had. I have had both hips replaced, right knee replaced, and right

shoulder replaced and I know there will be more in the future. I say this to

you because I want to get one thing across to you, if I do nothing else, and

that is the decision " to replace...or not to replace " is a purely personal one

between you and your doctor(s),

While it has been my experience that NO doctor in his right mind is going to

perform joint replacement surgery if the clinical and radiographic evidence

isn't there to support significant enough joint damage that the benefits

outweigh the risks in his/her professional opinion. ( I had to wait 2 years on

my left hip because the darn x-rays didn't show enough damage.)

I'm not sure how long you've had arthritis, or at what state your joints have

deteriorated, but it is true that MUCH of the pain I have endured with RA

occurred early in the disease, long before joint destruction was obvious.

Therefore, as long as the clinical evidence doesn't reveal significant

deterioration, the doctors make an *ethical* (term used loosely) decision (not

to perform surgery) that the risks outweigh the benefits based on all the

excellent reasons you've already heard from Jenna and .

Once the medical evidence is there that enough damage has occurred that you

*could* benefit from replacement surgery, the decision then becomes a personal

decision for you based solely on quality of life. In each of my replacements, I

had to weigh the risks against what I want out of life. I have a 4 and a half

year old son and a husband, so for me my decision was 90% based on the quality

of life for the " here and now. " I want to enjoy him NOW and deal with the

consequences 10-15 years from now, or hopefully later. Not everyone would make

this decision or even think my decisions were remotely sane, but bottom line, by

then it was MY decision. And for me, I truly believe the right decision.

FYI, although I know the risks I face every day with the replacements, in 6

years since my first replacement, I have not had a single problem with my

replacements, although I know others have not been so fortunate.

I hope this just helps to give you another perspective and wish you luck in

trying to resolve the issues of this disease that we have all had to deal with.

Kim (from Kansas)

-----Original Message-----

From: booper51@... <booper51@...>

egroups < egroups>

Date: Friday, September 01, 2000 8:59 PM

Subject: [ ] ?Replacements?

>

>Rainy, , Jenna, Jeanette, , Terry, & a.

>I hope you don't mind me addressing this to all of you at once. This way it

>is less overwhelming in the beginning. You said it!! The email is coming in

>like crazy. But I take comfort in it and have read a lot and already learned

>a great deal.

>Thanks for your comforting and kind words of support. It is both wonderful

>and sad at the same time that we have this group. Wonderful that everyone is

>supportive, understanding and listens. Sad that there is a real need for

>this group.

>

>I have several questions for everyone that I would be most interested in

>hearing the reasons their Dr's give them.

>

>If the joint is degenerating and there is no known cure, then why do Dr's

>wait so long to do successful (keyword) prosthetic replacements for patients

>with RA? Why do they make us suffer with this horrendous pain for years and

>years? Why must we wait until the cartiledge is completely worn out and the

>bones are rubbing together? Even if they find a cure, will it re-generate

>the bones? Are the Dr's that prescribe these drugs along with the

>pharmaceutical companies making tons of money... at our expense? If joints

>were replaced at onset of RA, how much money would they be losing? Do you

>think that Dr's diagnosis Fibromyalgia because it's too much trouble to look

>any further and use this as a catch-all diagnoses? These questions have

>haunted me for a long time and will probably continue to haunt me. You can

>all tell that I'm not a Dr lover these days.

>

>My thoughts and prayers go out to all those that are hurting.

>Sylvia

>

>PS to Rainy, What about " Sylvia's Mother said.. " I hear that one almost as

>much as " how do you call your lover boy? "

>

>Our websites: http://rheumatoid.arthritis.freehosting.net/

>http://www.rasupport.webprovider.com/

>Our chat room: www.delphi.com/RheumatoidArth1/start

>

[Guest guest]

Sylvia,

You have many very good questions. My doctor told me to wait as long as I

could because the replacements life span is about 15 years. I was 44 when I

had my knees done, so at 60 I may need them again, and then 75 etc. My MIL

has had her knees for over 20 years now, and is doing fantastic. The 15

years is just an average. One of my knees was completely gone when I

replaced it, the other one I did not wait. I could have had a synovectomy

and maybe it would have given me a few years. Sometimes I think I should

have done that, but I can't go back. A synovectomy cleans out the joint and

may give several more years before replacement. It helped one knee for

several years. I also had it done on my ankles. Just replacing the joint

right from the start is like pulling a tooth before filling it. It is not

an easy surgery, and should be done after all other options are tried.

I don't regret for one minute having mine done. I had the choice between a

wheelchair and replacements. For me it took 20 years to get to this point.

For others, the erosion is quicker. Finding meds that will slow the

progression is the best we have right now. Some of us are lucky enough to

go into remission, but I find not many do. But there are many meds that can

lessen the severity. Enbrel has done that for me. I though it was going to

be a cure for me, but it isn't. I am still very happy that it gives me pain

relief.

I go through anger periods with the doctors too, but I think they are just

as frustrated as we are.

FM is hard to diagnose because it is relatively new. Actually the symptoms

are described all the way back to Biblical times, but it is only in the last

10 years that they have found clinical proof of it's existence. Still there

are doctors that don't believe it is a real medical problem. Because there

is no black and white blood test, they only have a wide range of symptoms to

deal with. Most doctors don't know what to look for. My own RD of 15 years

never mentioned the possibility, and I only was diagnosed when going to a

doctor that specialized in FM.

I share your frustration with the field of science that they can clone a

calf but can't find out what is eating our joints.

a

----- Original Message -----

From: <booper51@...>

< egroups>

Sent: Friday, September 01, 2000 11:59 PM

Subject: [ ] ?Replacements?

>

> Rainy, , Jenna, Jeanette, , Terry, & a.

> I hope you don't mind me addressing this to all of you at once. This way

it

> is less overwhelming in the beginning. You said it!! The email is coming

in

> like crazy. But I take comfort in it and have read a lot and already

learned

> a great deal.

> Thanks for your comforting and kind words of support. It is both

wonderful

> and sad at the same time that we have this group. Wonderful that everyone

is

> supportive, understanding and listens. Sad that there is a real need for

> this group.

>

> I have several questions for everyone that I would be most interested in

> hearing the reasons their Dr's give them.

>

> If the joint is degenerating and there is no known cure, then why do Dr's

> wait so long to do successful (keyword) prosthetic replacements for

patients

> with RA? Why do they make us suffer with this horrendous pain for years

and

> years? Why must we wait until the cartiledge is completely worn out and

the

> bones are rubbing together? Even if they find a cure, will it

re-generate

> the bones? Are the Dr's that prescribe these drugs along with the

> pharmaceutical companies making tons of money... at our expense? If

joints

> were replaced at onset of RA, how much money would they be losing? Do you

> think that Dr's diagnosis Fibromyalgia because it's too much trouble to

look

> any further and use this as a catch-all diagnoses? These questions have

> haunted me for a long time and will probably continue to haunt me. You

can

> all tell that I'm not a Dr lover these days.

>

> My thoughts and prayers go out to all those that are hurting.

> Sylvia

>

> PS to Rainy, What about " Sylvia's Mother said.. " I hear that one almost

as

> much as " how do you call your lover boy? "

>

[Guest guest]

In jesse's case he is so young and still growing that doing a replacement is

not good. we would have to replace the joints every few years to fit his grow

or it could stunt his growth in the area more then it already is. in a

couple of years his dr wants to put him on growth hormones (his dr. is big on

getting jra kids to grow at a more normal rate). i asked more or less that

same question at his last visit and this is the answer i got. i know its

different for adults but for a child this is the best route to go. kind of

like a lesser of two evils. with this illness there is always a trade off. i

would rather wait until he is done growing before doing any replacements.

pins i can handle they won't stop his growth.

[Guest guest]

Hi Sylvia,

Regarding replacements.........first a little background on Esther.

When she

was 8 years old she was diagnosed with Juvenile Rheumatoid Arthritis/

Still's

Disease. By the time she was 13 she was completely bedridden and in such

terrible pain that I remember that even a sheet would hurt her. We went to

Children's Hospital in Philadelphia and her orthopaedic surgeon wanted us to

take her to New York City for a second opinion regarding joint replacements.

Well, the dr. in NYC looked at her MRI's, X-Rays and said that she needed

two hips, two knees, and a shoulder replacement aspa. That started her

series of joint replacements. At the age of 13 she had bi-lateral hips

done,

by the age of 19 had bilateral knees, a shoulder fusion, wrist fusion, ankle

fusion. By the age of 25 had a shoulder replacement and by 29 had cervical

neck fusions done. Eventually they want to do an elbow replacement.

She is 31 now and since having replacements she has lost one hip to

infection,

had another hip revised, lost one knee to infection and right now her

second

knee is loose and they are not sure they can give her another one. I think

the

doctors like to wait as long as possible because of the length of time the

replacements last. One thing we can honestly say is that the joint

replacements

.......after getting over the surgical healings.......definitely took away

the pain and

if we had to go back in time we would have done it again. You are kind of

damn if you do and damn if you don't. Man's replacements certainly are not

as good as God's original. I once asked the doctor why don't they do

cadaver joint replacements? He never really gave me a good reason but I

figure heck, they do heart, liver, kidney transplants why not joints?

Hope this answer makes some sense LOL.

~ Esther & Carol ~

----- Original Message -----

From: <booper51@...>

< egroups>

Sent: Friday, September 01, 2000 11:59 PM

Subject: [ ] ?Replacements?

>

> Rainy, , Jenna, Jeanette, , Terry, & a.

> I hope you don't mind me addressing this to all of you at once. This way

it

> is less overwhelming in the beginning. You said it!! The email is coming

in

> like crazy. But I take comfort in it and have read a lot and already

learned

> a great deal.

> Thanks for your comforting and kind words of support. It is both

wonderful

> and sad at the same time that we have this group. Wonderful that everyone

is

> supportive, understanding and listens. Sad that there is a real need for

> this group.

>

> I have several questions for everyone that I would be most interested in

> hearing the reasons their Dr's give them.

>

> If the joint is degenerating and there is no known cure, then why do Dr's

> wait so long to do successful (keyword) prosthetic replacements for

patients

> with RA? Why do they make us suffer with this horrendous pain for years

and

> years? Why must we wait until the cartiledge is completely worn out and

the

> bones are rubbing together? Even if they find a cure, will it

re-generate

> the bones? Are the Dr's that prescribe these drugs along with the

> pharmaceutical companies making tons of money... at our expense? If

joints

> were replaced at onset of RA, how much money would they be losing? Do you

> think that Dr's diagnosis Fibromyalgia because it's too much trouble to

look

> any further and use this as a catch-all diagnoses? These questions have

> haunted me for a long time and will probably continue to haunt me. You

can

> all tell that I'm not a Dr lover these days.

>

> My thoughts and prayers go out to all those that are hurting.

> Sylvia

>

> PS to Rainy, What about " Sylvia's Mother said.. " I hear that one almost

as

> much as " how do you call your lover boy? "

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

[Guest guest]

Thanks for your input. Everyone has been telling me just about the same

thing. I guess I don't know enough about all this RA stuff to really

understand. However, you all are getting me there. I never knew about

infections and rejecting of the artificial joints. I am definitely

enlightened now, thanks to everyone in this group.

Sylvia

[Guest guest]

Hey, Sylvia!

You've got a ton of good questions in your post. You've also received

several excellent responses. Many of us wonder about the very same things.

As others have said, the docs don't jump right in and replace the joint

because it is far from foolproof. I, like a, think about the issue of

joint replacement as similar to the tooth salvage operations that most

dentists try first before extracting it and giving you an artificial

replacement. I've had many dental procedures in the last five years and have

wished many times that they could just yank the dang things out and give me

an implant. It's not that easy unfortunately.

As Carol wondered, too, why don't they use joint transplants? Well, they do

use donors for some tissues in certain procedures (especially for hip and

knee surgeries), but then you add to the list of problems the risk of

disease transmission and immune system disruption. Also, compatibility,

timing, and cost can be prohibitive.

The good news is that, yes, bone and connective tissue regeneration

techniques do exist and continue to improve. That is something that is very

exciting and offers much hope to RA patients and those who suffer from many

other conditions.

Check out these links for some interesting information regarding

replacements and bone regeneration:

http://www.vigormagazine.com/lib/Med/Med-Joint_Replacement.htm

http://www.nidr.nih.gov/slavkin/bodypart.htm

http://www8.techmall.com/techdocs/TS981008-9.html

http://health.upenn.edu/ortho/oj/1999/html/oj12sp99p1.html

I have a healthy skepticism about the way the AMA, the pharmaceutical

giants, and the insurance companies operate, but I do think, that in the

end, good will triumph over evil. And there is much good being done out

there.

Some doctors are quite lazy and do slap an inappropriate diagnosis on people

at times. I think it's generally a good sign if a doc even considers

fibromyalgia to be a genuine illness. I know what you mean though. I think

they tend to say it's just stress, depression, or in one's head way too

often. That way they can throw the blame back on you and not have to play

detective. It saves them a lot of time, money, and energy!

Can you tell that I'm not really a doctor lover either, LOL?

Hope today is a good day for you,

----- Original Message -----

From: <booper51@...>

< egroups>

Sent: Friday, September 01, 2000 10:59 PM

Subject: [ ] ?Replacements?

> Rainy, , Jenna, Jeanette, , Terry, & a.

> I hope you don't mind me addressing this to all of you at once. This way

it

> is less overwhelming in the beginning. You said it!! The email is coming

in

> like crazy. But I take comfort in it and have read a lot and already

learned

> a great deal.

> Thanks for your comforting and kind words of support. It is both

wonderful

> and sad at the same time that we have this group. Wonderful that everyone

is

> supportive, understanding and listens. Sad that there is a real need for

> this group.

>

> I have several questions for everyone that I would be most interested in

> hearing the reasons their Dr's give them.

>

> If the joint is degenerating and there is no known cure, then why do Dr's

> wait so long to do successful (keyword) prosthetic replacements for

patients

> with RA? Why do they make us suffer with this horrendous pain for years

and

> years? Why must we wait until the cartiledge is completely worn out and

the

> bones are rubbing together? Even if they find a cure, will it

re-generate

> the bones? Are the Dr's that prescribe these drugs along with the

> pharmaceutical companies making tons of money... at our expense? If

joints

> were replaced at onset of RA, how much money would they be losing? Do you

> think that Dr's diagnosis Fibromyalgia because it's too much trouble to

look

> any further and use this as a catch-all diagnoses? These questions have

> haunted me for a long time and will probably continue to haunt me. You

can

> all tell that I'm not a Dr lover these days.

>

> My thoughts and prayers go out to all those that are hurting.

> Sylvia

>

> PS to Rainy, What about " Sylvia's Mother said.. " I hear that one almost

as

> much as " how do you call your lover boy? "