Re: Thanks for the information

[Guest guest]

Dear Tina,

I just wanted to say welcome and good luck at the appt. I have a 7 yr.

old daughter with severe polyarticular jra. She's currently getting

over a cold virus and ear infection so haven't been on as much. This is

a really great group and we've all " been there and done that " so to

speak. I know they've all been a very great support for us. This is

definetly the place to laugh, cry, talk or vent!

and Kate

[Guest guest]

Hello Tina and ..welcome!

I have a daughter who has poly jra. She was diagnosed back in 89'at the age

4 and a half. We have had a long road..with lots of bad but also good..there

has been tears, anger, and gladness with this ugly disease. But with the

right meds and a good rheumy it will be okay.

She does have pain in her back sometimes..she has a touch of

cirosis(sp)which was found in 2000 when she was having her hips replaced.

But her doctor felt that is was something that wouldn't get worse for she

has stopped growing at 4ft.8in. but i am sure the pain goes along with the

jra..with polyarticular it is in all joints. She also has had both knees

replaced.

Anyways this is a great list..i wish it would of been around when Tab was

little..i had family support but knew no-one with the same thing Tab had..it

would of helped alot..especially when i was sad and blaming myself but now i

realize I was not at fault.

Sorry to ramble on..

Good luck

karen(tab16.5..poly)

From: " jramom2002 " <jramom2002@...>

Reply-

Subject: Thanks for the information

Date: Fri, 08 Mar 2002 06:31:17 -0000

Hi to all,

Thank you all so much for responding to my e-mail with my concerns.

Everyone has been so helpful. This site is great, and I feel so

relieved, 3 days ago I felt like I was alone, and its nice to know

that I have the support of everyone here. Again, thanks for all the

information, I will let you all know what the rheumy says on the 18th

when I take for his first appt. God bless, you are all in my

prayers.

Tina

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[Guest guest]

Alice,

Obviously, it's your choice. But you have to know that the cortizone shots, though helping in the short term, will cause long term damage to your bone and cartilage. I had some cortizone shots before my TKR and they would help for a week or two but did nothing for long term relief of pain and disability.

I'm not sure how old you are, but I was 43 (now 44) when I hade my TKR done. And sure, it's a pain and a bit scary but now, 8 months out, I'm so thrilled I've done it. People constantly remark how I walk without a limp and look not in pain anymore. It's true. I'm no longer in pain. I can walk freely and have the grace back that I used to with walking.

Go with your decision for now, but I think you are just putting off the inevitable and would rather be on the other side of the TKR than spending more time walking in pain.

-----Original Message-----From: Joint Replacement [mailto:Joint Replacement ]On Behalf Of AliceSent: Monday, August 13, 2007 7:27 AMJoint Replacement Subject: Thanks for the information

My doctor suggested that I get a TLKR amoung other treatments. But from reading the post in this group I have decieded not to do it.I chose to have cortizone shots every 3 months and get a new brace. So, thanks to you all for helping me to deceide.

[Guest guest]

very well said ...

On 8/14/07, DeRouen <asd@...> wrote:

Alice,

Obviously, it's your choice. But you have to know that the cortizone shots, though helping in the short term, will cause long term damage to your bone and cartilage. I had some cortizone shots before my TKR and they would help for a week or two but did nothing for long term relief of pain and disability.

I'm not sure how old you are, but I was 43 (now 44) when I hade my TKR done. And sure, it's a pain and a bit scary but now, 8 months out, I'm so thrilled I've done it. People constantly remark how I walk without a limp and look not in pain anymore. It's true. I'm no longer in pain. I can walk freely and have the grace back that I used to with walking.

Go with your decision for now, but I think you are just putting off the inevitable and would rather be on the other side of the TKR than spending more time walking in pain.

-----Original Message-----From: Joint Replacement [mailto:

Joint Replacement ]On Behalf Of AliceSent: Monday, August 13, 2007 7:27 AM

Joint Replacement Subject: Thanks for the information

My doctor suggested that I get a TLKR amoung other treatments. But from reading the post in this group I have decieded not to do it.I chose to have cortizone shots every 3 months and get a new brace. So, thanks to you all for helping me to deceide.

[Guest guest]

Obviously you OS suggested the TKR for a very good reason, as the

decision to do this type of surgery is not taken lightly.

I was due to have a partial knee replacement in July 2006 but the knee

was too damaged once they went in (not all the damage had shown on the

MRI scan) so they just did a really thorough arthroscope hoping to get

me a few more years down the line before having to have a full knee

replacement.

However this didnt happen, as my knee just went from bad to worse and

when they did another MRI scan after 4 months, they said that the

damage had gone into overdrive and I had very bad damage to all areas

and cysts growing in the joint. I ended up having LTKR as soon as they

could get me a hospital bed, before any more damage could occur.

What I am trying to say here is, if you do decide to go down the road

you have, please get them to keep a very close eye out for any further

damage, as this might, as mine did, happen rather rapidly and that

makes it harder for the OS when he does eventually do the surgery.

I have also had steroid shots in my wrist/thumb, as I also have a

problem there and from what I have experienced this is only a short

term measure and not always successful in dealing with the problem. I

hope whatever you finally decide on works for you, but do think very

long and hard which way is the right way to go. Best of luck

Marilyn (UK)

>

> My doctor suggested that I get a TLKR amoung other treatments. But

from

> reading the post in this group I have decieded not to do it.

> I chose to have cortizone shots every 3 months and get a new brace.

So,

> thanks to you all for helping me to deceide.

>

[Guest guest]

Well here is some additional information about me. I am 70 years old and was in an automobile accident when I was 17. I got a compound fracture of my left leg and one regular fracture of my ankle as well as two compound fractures of the same ankle. I was told at that time I would probably never walk again. Ha ha I fooled them. Then on October 12, 2001 I had an accident at work where my car got parked on my knee. It was at about 2:00 am. I know that is hard to believe, but I put my car in park and got out to check equipment in the yard. The car slipped out of park and the door hit me knocking me to the ground. My left knee got pinned under the drivers tire. I was not found until about one half an hour later. I did not break it, but had damage done to the ligament. I went through physical therapy and had a full leg brace, but the knee never completely healed. So, now I have bone on bone in my knee. I am not so afraid of the pain because I had a lot of pain after my liver transplant, but because I am active in advocacy I dread having to go through a fairly long recovery. On Monday the sixth I had a cortisone shot in my knee and the doctor wrote a Rx for a brace which I got last Monday. It keeps my knee straight and I am walking with out pain there, but the best thing it has helped my posture so that I don't have pain in the small of my back because I am able to walk without a bent left knee. Alice Knowlton Massachusetts Life is what's happening while you are making other plans.