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Please can anyone help me.

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Topic Title: Please can anyone help me.
Created On: 05/31/2009 07:10 PM

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 06/19/2009 08:16 PM
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vlc549

Posts: 220

Oh my dear sweet friend, Becky
HOOORAAAAAAAAYYYYYYYYYYYY....to you. They finally got it right this time
after all you have been through I am so HAPPY for you. You were always in my
thoughts and prayers. Going back to college would be wonderful for you.
You have so much wonderful spirit and have helped me many times when
I felt like giving up.

If you go back to college see if you can study what is wrong with the 1% of
us that fell through the cracks and no one cares.

I guess I will be like this the rest of my life...but maybe someday I will wake
up and there will be the light at the end of the tunnel.

You take care and dont ever leave the forum
You are our inspiration and I wish you the VERY BEST.
Your still in my thoughts and prayers.

Love ya, Vicki
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 06/19/2009 05:11 PM
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gammawbecky

Posts: 319

My heart just breaks for you, my dearest Eleanor and Vic. Everytime I read of your conditions which cannot be changed, I am thankful for every one of my 15 surgeries that finally got me to my goal - to walk again without pain. Yes, it even took the Mayo Clinic four tries at it, but since I was willing to be a test subject (who wouldn't after all we have been thru) they kept on trying. My Surgeon told me at one point, "We NEVER give up", and they didn't. I have a knee that is like only four others in the World and I count it a priviledge to be one of these. The fact is, however, is that we won't know for sure if this surgery truly worked for years since the tendon can still stretch out and become useless.....and then I won't be able to extend my leg again. I don't even spend one minute of worry about it because it feels so right - balanced, strong and PAIN FREE! Oh, how pain shadows everything in your life and I feel like I have been at a standstill for 10 years. Now, I'm even considering going back to college and study Psycology with an focus on catistrophic medical events in a person's life. It just seems like a field that no one has touched. And, who would know more than someone who has been there?

Anyway, you all are deep in my prayers, yes, you, too pipe-dreams.

Love, Becky
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 06/18/2009 05:09 PM
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pipe-dreams

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I am in a similar situation. I am 51 and had RTKR in Dec 2007 and a revision in 2008. Life is miserable and I wish I had never done it. My knee is constantly swollen and the pain is as bad as it was with the arthritis before the surgery. I do not have enough range of motion to walk a flight of stairs and I can't even walk my dog because it is too painful. My ability to work at my job is compromised. I can barely walk and when I do, I have a pronounced limp. I tried to go back to the ortho for help, but I can't get in to see him. I only get his P.A. who told me there is nothing more they can do for me and not to come back.

I was very active before the knee replacement and now I can barely walk. I was not one of those bad, lazy patients - I did everything I was told to do and did physical therapy at least 3 x week for over a year - it was like having a second job. Now all I can do is go to work in pain, do a portion of my job (I have had to delegate the part that requires significant activity) and go home to recover to do it again the next day. My boss told me that they are becomming impatient with my inability to perform the job tasks and any hope of promotion is gone. It's all very depressing.
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 06/03/2009 05:33 PM
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vlc549

Posts: 220

Eleanor, thank you so much for answering my questions.

We are more alike than I thought. My husband just retired and we had
big hopes of traveling and doing things we wanted. Your right..that did
not happen here either. What a bitter disappointment. We worked all
our lifes for the retirement day. He retired I got my knees done and
we have not been able to go anywhere since. He has helped take
care of me .... I cannot stand and cook....and kills me too if I sit too long.
I cannot ride very long or far at all.

I quit using ice because it numbs the knees and back but I think it
stiffens up the whole situation. Whenever I am sitting in my chair I
always have the moist heating pad on. I dont put it on in bed because
I am afraid I will burn myself. At the end of the day and even in the middle
of the day my back is killing me. So glad you brought that up. I have to
walk stiff legged alot and that really kills my back. I sure think they should
research some of the problems some of us are having. I have spent alot of
money and still dont know what to do. Isnt it amazing how when you see
some people who have had BKTR walk just fine and can do anything. I still
cannot sleep an entire night without waking up with the knees.

I ask myself everyday why did I have to be in that 1% that knee replacements
did not work on. Just gave me more problems...and health problems.

I try to think positive but pain takes its toll on us.
Email me at bearcatsvlc@comcast.net if you ever want to talk more or
find a solution for our problem.
Thanks so much, Hugs and Prayers Vicki
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 06/03/2009 05:48 AM
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Eleanor15709

Posts: 16

Dear Vicki: I wanted to answer some of your questions. Yes, I am fortunate now that I can sleep at night thanks to Tylenol PM or Advil PM. I don't have to take it every night but it does help. The problem is getting into a comfortable position to sleep. I do have trouble standing or even sitting for any length of time. I had my surgery after my husband and I both retired and hoped to travel. Well, that did not happen. You do get bitter and depressed because this was something we had worked for all our lives.
The good old hot water bottle is my best friend. It relaxes those muscles and I use it every night.
I do not like ice and I do not have swelling anymore at this point. By the end of the day my back
is killing me too because of the unnatural way I have to walk. I use a cane except in the house where I know where all the walls and furniture are in case I may fall. The other day I ran into a lady that I had been to PT with when we had our knee's done. She did so well and told me that last year she had the other knee done and is doing well again. From the way she walks you would never know she had a problem. I only had my right knee done and will NEVER have the other one done. I will just sit in a wheelchair if it comes to that. I just went to a new OS and he told me that because this is such a rare condition that no money or time is spent in researching this and those of us that it happens to will just fall through the cracks! At least he was honest. This forum is a great way to vent. You know what they say, if life hands you lemons, make lemonade!
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 06/02/2009 10:44 AM
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starlady

Posts: 24

I am right there with you! Had my RTKR on 1/2/08 and it has been hell ever since! Had 4 manipulations and they wanted to go back in again and I said NO WAY!! Since my knee operation I have had nothing but trouble...severe arthritis pain, hyperparathyrodism, blockage in my heart, hemangioma in my back--plus bulding discs,....the list goes on...My left knee is messed up too....I torn my meniscus last year and had arthoscpic surgery and it is still hurting plus it "buckles" when I walk too far. Feel like I have aged 20 years since then. The depression meds that I am on causes me to gain weight which makes me more depressed! Not to mention the fact that I am going through menopause! I will say a prayer that something good happens to us!! PM me if you want to talk more.....I am here for you!
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 06/01/2009 11:44 PM
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vlc549

Posts: 220

Hi Eleanor, thank you so much for replying to my question.

The calcification you have sounds exactly what I have. I have never ever been able
to drive again since I had the knees done. They are both so stiff I cannot acclerate
or brake if I had too. I cannot get in that situation. I can hardly get in and out of the
car. I just cannot bend my knees much.

I bought me a small scooter we carry in the back of the car. It is a small one and just
fits me...so when I go anywhere my hubby can get it out of the car trunk with one hand
and put the seat on and battery in and I am ready to go. This is the only way I can get
around now. As far as the inside of the house, I am back to using my cane. It hurts me
to ride in the car very long.

I cry alot because no one knows until they have been thru this pain 24/7. Sounds like you
know exactly what I am talking about. Can you stand at the stove and cook ??
I cannot stand at the stove and my kitchen is carpeted. I am trying to hang in there but
it isnt easy. I hate going to bed and I hate getting up in the morning due to the pain both
times and during the day. I still take pain meds and guess I will always have too. Do you use
any ice or heat to help you ?? Can you sleep all night?? I go to bed about midnite and wake up
about 2 am ...in so much pain. Did you have both knees done at the same time ??
I did and sure wish I hadnt.

Again thank you so much for replying to me. If you think of anything at all to help please
let me know. I JUST WANT MY LIFE BACK and sure you do too.
Lots of Hugs and Prayers, Vlc Vicki
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 06/01/2009 05:59 PM
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Eleanor15709

Posts: 16

Dear Vic. I just read your posting. I have not seen this site in awhile and was sorry to hear of your troubles. Yes, TKR's do not always turn out right. I had mine nearly 12, yes, twelve years ago and I am still in pain because of heterotopic ossification. Now that is a mouthful and I had to find out for myself what it was. The doctor who did my surgery at the BEST hospital in NYC goofed big time. I went back to him for six months complaining I was not making progess and was still in great pain. He never took an xray to see what was wrong but just told me I wasn't exercising enough!! I finally went to another doctor who immediately took an xray and told me I had calcium build up and no amount of exercising
can fix that. I have been to a few other doctors after that looking for relief but they all know that
surgery will not work because I am the 1 % that will just develop more bone again. It can be treated at the onset by medication or radiation. Mine was never diagnosed in time. So in a nutshell that is my story.
I, like you live in chronic pain. I am not familiar with your condition but I just wanted you to know that you are not alone out there. I am sure there are a lot of fellow sufferers.. I was happy to read that our Becky is doing so well. I had followed her story for awhile and she is just a great person to have in your corner. All I can say is that you just have to hang in there and try and make each day as comfortable as possible. I cannot walk far going from the house to the car is a challenge. I still drive and only go to stores where there is a cart I can hang onto. Not a great life but I have learned to adapt. I have to say I cannot find it in my heart to forgive the doctor who put me in this position by his neglect!! A hex on him!
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 05/31/2009 07:10 PM
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vlc549

Posts: 220

Hi All,
It has been awhile since I have been on the forum but I check it everyday.

I have major problems and wonder if anyone else has had anything like this.

I had my BKTR on May 06...yes 3 years ago. Mine didnt turn out like everyone elses did.
I have been in constant pain since Nov 06. I have very many health problems, Fibromyalgia,
Diabetes Type 2, Neuropathy, Arthritis. I have been checked out by many specialists and
was told the surgery should never been done in the first place because of some of my health
problems...these people dont heal well. Thats me. !! I went to see my OS in Oct. and he even
admitted looking back we should never have done the surgeries. He is lucky he is still walking around.
He also came highly recommended and most all the people he has done came by with flying colors.
I have been on pain meds for almost 2 years now not just for the knees but mostly the knees.
Now all the sudden I have something on the outside of both my knees. Not the inside. I cannot sleep
on either side of my knees and am in constant pain all night. I ice but I think that maybe causing them
to be stiff. I use moist heat..and it seems to do better. I just cannot walk after all these years. Cant
tell ice or heat does anything.

I was told it could be ARTHROFIBROSIS...which I know I have major SCAR TISSUE around each knee
cap. All the specialists I have seen said DO NOT let anyone open the knees back up. The SCAR TISSUE will come back so fast ...it will be alot worse. I am just heart sick. This surgeon has ruined my LIFE for GOOD. I almost died on the table when I had the BKTR done in May 06 and they had a
terrible time bringing me back. So...I know arthrofibrosis is major scarring around the knees after BKTR. Only 1 to 17% get this condition. Has anyone else had a problem like this ?? I am now back walkng with my cane. I still do my exercises here at home and always have. It hurts it I do and hurts if I
dont. MY LIFE IS A LIVING HELL RIGHT NOW. Even my cardiologist said he has never seen anyone have so much trouble with the BKTR. I am coming here today to see if any of you can please help me and if you have had any type condition like this. Sweet Becky, I know you are out there and hope and pray you are doing well. Finally got it right this time.

You all are in my thoughts and prayers daily. I JUST NEED MY LIFE BACK.....and cant seem to get it back. Believe me I have been to so many specialists in knee replacements.
Please Please can anyone help me here. Surgery IS NOT an OPTION.

Hugs and prayers to you all, Vlc Vicki
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