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Author Topic: New Year - renewed fight against knees....  (Read 1390 times)

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Offline lululocket

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New Year - renewed fight against knees....
« on: December 31, 2010, 12:49:03 AM »
Dear all,

After years of dislocations, I had a TTT on my left leg in March, need to have the right done as soon as I'm strong enough.

Despite 9 months passing, and the surgery technically being a success, my muscles are way behind. I'm on my 4th physiotherapist, I'm still unable to walk down stairs, run, squat, jump, or relax about my knees at all. I'm totally exhausted from this fight, I've realised that I've actually been almost continually pretty unhappy the past two months in particular, with ice and snow everywhere making me terrified whenever I go out. I'm knackered. My worst ever dislocation was on New Years Eve in 2006-7, and another anniversary of that horrible day is making me squirm, especially as I feel that I'm just going in circles. I just tried to do my physio and it hurts again, which means i'm meant to stop so no progress today.

I'd love some kneegeek pulling together/kicking me into shape. There's a new year coming, I'd love peoples thoughts on staying energised and positive when happy things like dancing seems a million miles away.

Lucy
2003 RK dislocation
multiple sublaxations (10+), both knees
2007 LK dislocation
03/2010 TTT on RK
03/2012 TTT on LK

Offline Rknees4

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Re: New Year - renewed fight against knees....
« Reply #1 on: December 31, 2010, 03:18:57 AM »
Lululocket,
Best advice I can give you is get lots of rest, do as many of the things you can that make you happy, keep posting here when you are down or hurting.  We all get IT. The pain the immobility the frustrations the anxiety about slips falls and reinjury.  You have to do your best to remember this is as much a mind thing as well as a knee thing.  I have found the further out from my TTT/LR/clean up I am the, post op knee continues to improve get stronger and think about it less.  Now if I can get my left knee to co operate it would be great.
Hang in there,
Rknees4
Knee pain since teens
06/09 Patella mal-alignment grade 3/4 chondromalasia both knees, PFS
09/11/09 patella realignment,Trillat/LR/scope cleanupRK
10/02/11 patella realignment,Trillat/LR/scope cleanupLK
Cortisone LK 04/06/11
Scope LK,/RK HW removed 28/06/12
Chin up keep hobbling!

Offline caroline889

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Re: New Year - renewed fight against knees....
« Reply #2 on: January 01, 2011, 09:09:18 PM »
Hi Lcuy
Like you i have suffered years of dislocations in both knees. I'm 38 now and have had various procedures done. They have stopped the dislocations but now i have grade 4 arthritis after all the dislocations. So my battle with that continues with more surgery planned for 2011 to change the postiion of my bones to try and delay  knee replacements.  Good luck with your recovery, my quad muscles are still really weak after my last surgery ( 20mths ago).  I feel really depressed about it. It is so unfair, it is always there with you dragging you down. Just keep battling. What keeps me postive is that orthopaedics is one of the fastest moving areas being researched so hang on in there.

Best wishes

Caroline
Dislocations since 1986
Lateral Release RK June 2008
Diagnosed trochlea dysplasia RK & LK 2008
MPFL Recon. &  microfractures LK & RK April  2009
Diagnosed grade 4 arthritis RK & LK 2009
Scopes  & microfractures RK & LK Nov  2011
Fulk'n osteotomy, mpfl recon& trochleoplasty RK March 2012 LK Feb 2013

Offline fischbein

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Re: New Year - renewed fight against knees....
« Reply #3 on: January 08, 2011, 10:43:06 PM »
WHEN IT GETS SO BAD YOU FEEL YOU CAN'T GO ON, JUST GO ON.  THIS MIGHT SOUND FOOLISH BUT AFTER 12 KNEE SURGERIES, AND A FAILED TOTAL KNEE REPLACEMENT, I HAVE LIVED WITH CHRONIC OFF THE CHART PAIN FOR YEARS.  BEEN IN PAIN MANAGEMENT AND WAS TAKING UP TO 300MG MORPHINE A DAY AND IT USUALLY DID NOTHING.  I AM NOW WAITING ABOUT 2 WEEKS FROM TODAY, JAN 25, FOR MY 13TH MAJOR KNEE SURGERY, THIS TIME A COMPLEX REVISION AND POSSIBLE BONE GRAFT.  THE PAIN GETS SO BAD I DON'T KNOW HOW I GO ON.  LAST YEARS I SUFFERED AN INTERCRANIAL HEMORRHAGE FROM THE LARGE AMOUT OF PERSCRIBED MORPHINE I WAS TAKING.  AFTER ALMOST FOUR MONTHS IN HOSPITAL SIX WEEKS IN COMA IN I.C.S., I HAVE HAD TO SPEND THE LAST YEAR USING ONLY SMALL DOSES OF MORPHINE, 30MG THREE TIMES A DAY UNTIL ONE YEAR PASSED FROM THE DATE OF THE BRAIN HEMORRHAGE SO I WOULD BE ALLOWED TO GO THROUGH THE REVISION SURGERY.  THE SURGEONS AT THE WELL KNOWN ADNERSON ORTHOPEDIC INSTITUTE WOULD NOT OPERATE ON ME UNTIL I HAD BEEN BRAIN STABLE FOR ONE YEAR.  SO THERE I WAS, VIRTUALLY NO PAIN MED'S ALLOWED, AND THE BEST DOC'S IN THREE MAJOR UNIVERSITY MEDICAL CENTERS UNWILLING TO DO SURGERY FOR ONE YEAR POST HEMORRHAGE.  WHOEVER SAID THAT KNEE PAIN CAN'T KILL YOU NEVER READ MY MEDICAL RECORDS, AS I HAD TO BE PUT ON LIFE SUPPORT TO PULL THROUGH THE BRAIN BLEED.
FROM ONE WHO HAS SUFFERED, ALL I CAN DO IS USE MASSIVE AMOUNTS OF ICE TO NUMB THE KNEE FOR A SHORT TIME.  I GAVE UP DRIVING AND MUST USE A POWER WHEELCHAIR TO GET AROUND MY HOUSE.  HOWEVER I KEEP GOING, ENJOING TALKING TO MY CHILDREN, GETTING DRIVEN TO THEIR HOMES ON THOSE FEW TIMES THE PAIN WILL NOT KEEP ME IN BED.  I HAVE BEGUN TO TAKE AN ONLINE UNIVERSITY COIURSE TO GET MY MIND OFF THINS, AND WILL BE WORKING ON MY SECOND UNIVERSITY DEGREE IN MUSIC EDUCATION EVEN IN HOSPITAL WHILE RECOVERING FROM THE REVISION THE END OF THIS MONTH.
I GUESS YOU CAN GIVE UP OR GO ON, IT SOUNDS CRAZY TO SAY BUT WHEN THE PAIN IS SO BAD IN THE PRESENT I CANNOT RECALL HOW BAD IT WAS IN THE PAST, AND I JUST CONTINUE.  AS SOMEONE WHO TRAVELLED THE WORLD AS A CLASSICAL MUSICIAN, I HAVE HAD TO MAKE MY BEDROOM MOST OF MY WORLD WHEN I AM NOT GOING TO APPOINTMENTS AT PAIN MANAGEMENT DOC'S OR UNIVERSITY BONE AND JOINT CENTERS.  I HAVE FOCUSED ON FINDING THE BEST ORTHOPEDIC SURGEON I COULD, AND MOST HONEST, AND ALTHOUGH THE ONE WHO IS DOING THE SURGERY IN ABOUT TWO WEEKS, HAS SAID THERE IS ONLY ABOUT A 60% CHANCE THINGS WILL IMPROVE WITH THE SURGERY AND A SMALL CHANCE THINGS COULD GET WORSE, I HAVE NO OTHER CHOICE TO PRAY THAT THE DOCTOR HAS THE SKILL AND ABILITY TO MAKE ME FEEL BETTER AND GET MY LIFE BACK

SO WHAT I CAN SAY IS KEEP BUSY, DON'T DWELL ON THE PAIN IF YOU ARE REALLY FOCUSED ON SOMETHING OTHER THAN THE PAIN EVEN WHEN IT GETS OFF THE CHART AND NEVER GOES AWAY, AND YOU CAN STILL GO ON.  THE FACT THAT YOU ARE STILL WITH US AND ASKING FOR HELP SHOWS THAT YOU HAVE FAITH SO HOLD ON TO THAT FAITH AND FIND THE BEST DOCTORS YOU CAN.  IF I HAD NOT ALLOWED A FEMALE ORTHOPEDIC SURGEON WHO I WAS ACTUALLY IN A RELATIONSHIP WITH DO MY FIRST KNEE REPLACEMENT 9 YEARS AGO I WOULD NOT BE IN THE POSITION I AM NOW.  SHE SHOULD NEVER HAVE DONE THE SURGERY ON ME SINCE WE WERE INVOLVED, AND I BECAUSE WE WERE IN LOVE COULD NOT SEE HER FRALTIES AS SHE DRANK A BIT TOO MUCH AND RUSHED THROUGH HER SURGERIES.  IN THE HOSPITAL SHE USED TO WORK IN, SHE WAS SINCE LET GO, SHE WAS KNOW AS THE HURRICANE, BECAUSE SURGERIES THAT WOULD TAKE OTHER DOC'S THREE HOURS SHE WOULD RUSH THROUGH IN AN HOUR AND A HALF.
BUT THAT IS DONE AND OVER SO ONLY WHEN YOU WANT TO GIVE PEOPLE YOUIR HISTORY, STAY AWAY FROM THE PAST, AND KEEP BUSY, EVEN IF HOMEBOUND LIKE I AM NOW I FIND THAT I CAN MAKE MY BEDROOM INTO MY WORLD, WITH L;ARGE SCREEN TELEVISION, A LAPTOP COMPUTER AND PHONE AND MY OPERA COLLECTION IT IS NOT GOOD BUT I REMIND MYSELF THAT AFTER SEEING SO MANY PEOPLE WITH DEBILITATING STROKES, DOUBLE AMPUTEES AND BRAIN TUMORS WHO I WERE WITH ION MY BRAIN BLEED REHAB THAT THERE ARE PEOPLE FAR WORSE OFF THAN YOU OR I WHO GET UP EVERY DAY AND MAKE IT THROUGH.  SO KEEP UP THE FIGHT AND BE AWARE THAT NO MATTER HOW BAD YOU FEEL THERE ARE OTHERS NOT AS BLESSED WHO FEEL WORSE AND HAVE NOWHERE TO TURN.  ONE LAST STORY IF I CAN GO ON.  THE DOCTOR I CHOSE FOR MY REVISION STARTED A PROGRAM CALLED "OPERATION WALK" EVERY YEAR HE SPENDS TEN DAY'S WITH A COMPLETE STAFF OF TWO ORTHOPEDIC RESIDENTS ONE OTHER MASTER SURGEON, FIVE NURSES GIVE PHYSICAL THERAPISTS AND GENERAL ANESTHEISA DOCTORS AND THEY GO TO GUATAMALA, AND LAST YEAR AND THIS YEAR WILL PERFORM AT LEAST 60 TOTAL KNEE REPLACEMENTS, REVISIONS, AND HIP REPLACEMENTS FOR NO COST TO PEOPLE WHO HAD NO WHERE TO TURN.  COULD YOU IMAGIN WHAT IT WOULD BE LIKE TO HAVE THE TYPE OF KNEE PAIN WE HAVE AND NOT HAVE ANYONE BUT DOCTORS WITH JUST A GENERAL MEDICAL BACKGROUND AND NO SURGERY EXPERIENCE TO TURN TOO.  THESE NATIVE INDIANS FROM THE DEEP JUNGLES AND FORESTS OF GUATAMALS HAD NEVER HAD THE OPPORTUNITY TO EXPERIENCE MODERN ORTHOPEDIC MEDICINE WE TAKE FOR GRANTED, AND THE PEOPLE AT THE ANDERSON ORTHOPEDIC INSTITUTE, WHERE I AM HAVING MY REVISION, NEAR WASHINGTON D.C. SHOWED UP AND GAVE THEM A CHANCE AT A NEW LIFE, THEY NEVER THOUGHT THEY HAD A CHANCE AT LEAST WE DO.  IT WAS THE INFORMATION OF THE ANDERSON INSTITUTES OPERATION WALK PROGRAM, THAT MADE ME CHOOSE ONE OF THEIR OPERATION WALK VOLUNTEERS AND THEIR LEAD KNEE SURGEON TO DO MY REVISION.
I HOPE THIS TUIME I MADE A GOOD DECISION.  THE BEST TO YOU.