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Author Topic: journey of bi-lateral derotational osteotomies of tibias for my daughter  (Read 51795 times)

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Offline vl7007

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Hi i am katheryn Lyons and i am having my bottom legs operated on in 12 days i am at the end and just wanted it all to stop I was at the breaking point of just grabbing an axe and chopping my legs off the pain was that much.. morphine wouldn't help or any normal painkillers not even take an edge off.. i am in my final year of school i am grade 12 and am focusing on graduating this yr in 2 months  I'm hoping to get in to creative arts and Law.. I have had leg pain since grade 8 i could walk and my legs were straight my legs have rapidly turned since December beginning this year. The top half of my legs above the knee has turned over 65 degrees left and the lower half of my legs have turned a rapid 85 degree inwards.. I cant sleep any more painkillers they do nothing any more because of the Marfans this has sped though since puberty last year.  I am not at the stage of depression but have been on that thin line i feel like i am the only with this pain but i know i am not .. but the bones just keep turning and all i want to do is cry.. i cant go to school any more because its too painful so i do it from home now... I used to be able to Figure skate ,run , skip, dance, climb trees, any thing and now i cant its depressing just thinking of what i used to be able to do and now just being stuck in a wheel chair or bed bound.. All i want to do is cry my Boyfriend is rather supportive but i am finding it hard to cope now i break down emotionally and i cant even stand for 2 minutes before my legs give in.. I feel like no one understands the pain and i found this site.. i still wasn't sure but I hope there is some one here who understands what i am going though... I'm only 17 i don't know why this happened but i guess that's life...
« Last Edit: May 29, 2011, 02:43:28 PM by vl7007 »

Offline solstice M

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #1 on: September 11, 2009, 08:37:38 PM »
Hi Catherine,
I have just seen your post and hope that you see this message before you have your operation.  I felt so sad when I read about you, especially when you are so young you have been very brave and STRONG with how you have coped so far with all the pain and lack of mobility in your life.  I completely understand how you feel about all the things that you have lost.  Things you used to be able to do at times it does become unbearable to think that you may never do them again but YOU WILL improve and in time regain some of the life that you have so cruelly lost. I am really sorry that you are having to suffer all that pain.  It must be heartbreaking for you not to be able to go to school and to live the life that you should be living at your age.  Reading your post has made me feel guilty because many times I have felt really down about how my life has changed and been really sad about all the things that I miss and still can't do but to be as young as you and so brave and you are.  I know you must be feeling really scared as your operation is near.  Wondering what the outcome will be, will it improve your life and how much pain there will be but you will get through it I know you will.  I will be thinking of you and I will say a little prayer for you.  Hopefully  you will soon be turning a corner.  Would like to know how you got on when you feel able.
Stay strong as you have been, you will come through this and I know it seems like things will never get better, they will.  Will be thinking of you God Bless. x
6/07 TibPlat fracts 3 + Fracts knee fib & humerus(Plate in then remvd infect more surgeries 3mths in hosp.chronic infect. in tibia
2/08 /rotational skn flp skin & bone grfts 6 wks hosp
1/09 Knee remvd Antibiotic cement spacers in situ5mths NWB+IV antibio 6wks
6/09 2nd stage KR Lng stem WB crutchs

Offline solstice M

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #2 on: September 15, 2009, 02:09:39 PM »
Hi Catherine,
I have been thinking about you and your family a lot since the weekend. I think you may have had your surgery yesterday, if not then any time now, either way I wish you the very Best of Luck with your surgery.  I hope that your recovery goes smoothly without any major complications, (the Surgeons always scare you to death with telling you about all the things that can go wrong and it really worrys you but they have to do that I suppose to cover themselves it doesn't mean that they are going to happen.)  Hoping that this surgery puts you on the road to regaining your mobility and with time ease the pain that you have been suffering.  I know it is not going to be easy for you and that you will have a long period of rehab ahead of you but at least you know that something is now being done to try and help you and to rectify the problems rather than laying on your bed suffering with things getting worse with nothing being done ,this surgery does give you hope for the future.  Thoughts are with your Mum and family also, it is very difficult for them seeing someone they love go through so much but I know their love, strength and support will see you through. 

Sending Best Wishes for your recovery and healing and hoping that you will have a good outcome from the surgery.   
6/07 TibPlat fracts 3 + Fracts knee fib & humerus(Plate in then remvd infect more surgeries 3mths in hosp.chronic infect. in tibia
2/08 /rotational skn flp skin & bone grfts 6 wks hosp
1/09 Knee remvd Antibiotic cement spacers in situ5mths NWB+IV antibio 6wks
6/09 2nd stage KR Lng stem WB crutchs

Offline vl7007

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #3 on: September 17, 2009, 02:27:19 PM »
 :'( hey everyone, I'm posting an update on my daughter kat who had derotational surgery on both legs on monday 14th september.  She is doing as well as can be expected. but the doctors seems to think he can turn back the bones over a 4 day period, he is moving them up to 1 cm per day, and hopes to take the metal frames off next week and screw the rods in place then.  so hopefully she will be able to come home from hospital in about another 2 weeks.  this is day 3 post surgery, and she still can't sit up, in bed.  any messages of hope and encouragement at the moment will really help her.

Offline crankerchick

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #4 on: September 17, 2009, 02:46:42 PM »
Glad the surgery went well and that things are progressing positively to the doctors. Please tell her to hang in there and try to stay positive. She doesn't look like her spirits are doing too well in that picture. i hope it's just the meds and sleep deprivation and not really that her spirits are down. She has people rooting for her to see brighter days, hpefully that helps lift her spirits a bit.

Hang in there and happy healing :-)

Latise
Mar '07 - plica excision
Oct '09 - femoral + tibial derotational osteotomy & TTT
Aug '10 - hardware removal
"You control your leg. Don't let it control you." -Smart trainer
"Get your a$$ in gear and go for it! Nothing will happen until you make it!" -Smart doctor

Offline vl7007

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #5 on: September 18, 2009, 12:08:39 AM »
thanks solsticeM for the kind words. :)   she really needs them right now.  mind you kat is startring to tell the nurses and doc's to back off when they come near, she has a teeshirt that states " my mood rings say BACK OFF NOW".  she feels like a pin cushion being attacked  like a cat with a mouse.  that they don't mean to hurt her but everything they do does.  you're right thelack of sleep is not helping the situation much, each night kat has spiked temps of around 104f/39.8c and the doc's can't work out why, but it means that the nurses spend most of the night sponging her and put fans around her to cool her down.   also her epidural is leaking, she every hour or so the nurses and the pain team come in to check it which means they either roll her over/ or try to sit her up, then her knees swell from the movement, and it takes another hours for the pain to die down. 

hopefully she will start smiling soon.

vicki

Offline SuzanneT

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #6 on: September 18, 2009, 02:44:14 AM »
Hi Kat, my heart goes out to you.  You're so very brave.  I only wish you the best.  You will be in our prayers.  Kneegeeks loves you & you can always come here for advice & encouragement.   Take good care, Suzanne
12/31/06 tibial plateau fracture (medial)
              fibula fracture
              patella fracture
              (no surgery, long, slow recovery)
   8/1/07  7 months, beginning FWB
   8/1/08  more physical therapy to develop
               calf & quads
   8/21/08 climbing stairs

Offline solstice M

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #7 on: September 18, 2009, 01:40:46 PM »
Hi Kat, It was great to see the post from your Mum today saying that you have come through your operation without any extra major complications and that there is a lot of optimism about the outcome (although I'm sure at the moment you are feeling anything but optimistic) You are probably wondering how you are going to get through the time in hospital, what with the pain, the lack of sleep (from personal experience that can really get you down) but the time does pass and it really won't be long before you are back home and not being woken at 6a.m. with clattering trolleys, pills, washing etc.  It was nice to see your picture to be able to put a face to your name and I was actually surprised to see how good you looked after all that you had done and it only being day 3.  This time will pass, it is natural if you start to feel a bit depressed at this stage the anaesthetic quite apart from pain and lack of sleep can make this worse.  Just try to do what they ask of you however draining at times that can be, it will get you gome quicker!  Hang on to the positive news they have given you that they will be able to correct and alter the growth of your bones.  I understand everything must be very painful for you but try to think of this pain as a different pain, your surgery pain, the surgery that is going to eventually improve your quality of life.  You have now begun the journey of recovery, you are now over the hurdle of making the decision to have the surgery, which must have been difficult, the surgery has now been done,and the surgeons comments are VERY positive.  Well done, you are doing great, although you probably don't feel it!  You really are.  Take care,  Hoping that you continue to do well, don't worry though if you have days were you think and feel that you are going backwards, thats normal.  You have been very brave and strong  Kat I know that you will get there!
You will be in my thoughts.  Sending you Good Wishes for your recovery and that you continue to improve daily.   
6/07 TibPlat fracts 3 + Fracts knee fib & humerus(Plate in then remvd infect more surgeries 3mths in hosp.chronic infect. in tibia
2/08 /rotational skn flp skin & bone grfts 6 wks hosp
1/09 Knee remvd Antibiotic cement spacers in situ5mths NWB+IV antibio 6wks
6/09 2nd stage KR Lng stem WB crutchs

Offline vl7007

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #8 on: September 25, 2009, 01:55:29 PM »
 :-\Well everyone, alot has happened since I last posted for my daughter.  Kat has has temps ever since surgery on 13th sept. the doc's removed the epidural day 4 thinking that that was the cause to no avail. for a week post op they derotated the bones upto 1 cm per day, then they reoperated on the 21st sept with kat having a temp of 38.5c, where they tweeked the derotation further so they were satisfied.  then they released the nerves in her right leg I don't know whether this was done in the left one as well, but the right one was very swollen and bruised and now she has half casts on both legs.  due to her temps, they decided against another epidural, this time using IV combined with PCA, injections and oral pain relief.  4 days post-op 2nd surgery or day11 after first op, they finally decided to try transferring her to a comode so kat could have a shower and go to the toilet.  her feet turned purple, her blood pressure dropped further, and her pulse increase well above 110 which is where it normally sits since surgery.  She is still very pale, and they have run out of sites to draw blood from, so now they are considering a long line or picc.  the physio and ot are organising a mobile shower comode, patient transfer board and wheelchair where the sides are removable, so that as kat stabilizes better, she will be able to come home.  They think in another week or two, once the equipment arrives.  on the down side, her pain levels are still quite high, and the feeling in her right foots toes are half or less of the feeling of the left, and the sensations are reducing as the swelling goes down.  still it is early days, and it will be nice to eventually get kat home again. Thanks again to all for your kind words of encouragement.

Offline solstice M

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #9 on: September 28, 2009, 01:06:40 PM »
Sorry to hear that Kat had to undergo another operation but if it is helping her to have a better long term outcome then that is what you all have to focus on. I know that is easy to say and at the moment probably not much consolation to Kat who will just want it all to be over and to be back home.  Try not to worry too much about the temperatures.  I was the same throughtout most of my surgeries, they never knew why this was happening. Sometimes its just the bodys way of reacting to all that is going on with it.  I too had problems with them getting access to veins (most had packed up after months of attack in hospital!)  I know it sounds scary having a picc line, but honestly it didn't hurt having it put in and it was nice not having to worry about whether they would be able to get a vein and saves the poor bruised arm.  Again the low blood pressure when having to move after being immobile or laying down for a while is quite normal.  She will probably experience this on and off for a while particularly when she tries to move or do something that she hasn't done before.  A combination of pain and faintness will make the blood pressure drop. Also just lying in the bed and the medications can make your blood pressure low, that was my experience anyway.  The foot numbness is quite frightening but it does come back.  Sometimes the blocks they give for painkilling purposes can cause this as well as all the trauma that the leg has undergone it will eventually pass.  Keep wiggling those toes Kat, if you can!

It is good that the hospital are trying to get all the equipment necessary to make it possible for Kat to go home when they feel the time is right.  Getting the toileting situation sorted, commode and the aids etc. for use at home, knowing that these will be in place willl ease some of your worries and hopefully make it sooner that Kat will be able to come home.

Sending Kat very best wishes and hoping that it won't be too long before she is back home.  Hoping you, Kat's Mum are holding up O.k. I'm sure you are.  It must be very difficult for you seeing your daughter in so much pain and going through so much.  You will get through this together.  Best Wishes also to you and your family.
6/07 TibPlat fracts 3 + Fracts knee fib & humerus(Plate in then remvd infect more surgeries 3mths in hosp.chronic infect. in tibia
2/08 /rotational skn flp skin & bone grfts 6 wks hosp
1/09 Knee remvd Antibiotic cement spacers in situ5mths NWB+IV antibio 6wks
6/09 2nd stage KR Lng stem WB crutchs

Offline vl7007

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Hey everyone.   8)

It has been a while since i have been on this site, so much has happened since last entry. Kats final school exams were done in her hospital bed, whilst on a lovely cocktail of  I.V. pain killers, suprisingly she did quite well passing every subject with no special consideration other than the exams were not done at school.  Kat finally got out of hospital just in time for her formal, we were prepared to have the limo take her from the hospital ward if necessary, 2 days later kat graduated from school where she got up and walked 3 steps to receive her certificates in a standing ovation from the entire assembly, the local paper did a front page article on her achievements and everyone including the principal cried.  The poor student who received his certificate after Kat had to wait for the Principal and staff control themselves, and the hall to quiten down, around 10 minutes later.

By December, it was apparent that all was not going quite to plan for kat,  the wounds still weren't healing, and her left foot had turned again, and the specialists thought that with hydro things might improve.  Unfortunately this wasn't the case, and by February, they were ready to realign the derotation in the left leg again.  This time the operation wasn't so bad, however they found that her ligaments in the ankle had deterorated and that further surgery to adjust these bones would not be benefical if this didn't work.  3 weeks post surgery, Kat is now having trouble sitting in her wheelchair, or anywhere for more than an hour, although she can now walk with crutches to the toilet once a day, (which is about 30 steps) that is a major improvement in mobility, but the hips are now an issue.  Quality of life issues with the hips are an issue that the doctors are now considering operating on both hips to realign them.  Her knees still turn in are 45 degrees each, and this is because they still need to operate on her femurs,  we will find out next visit whether they will combine the femurs with the hip operation at the same time, or whether it is too much at once. 

Kat has not been able to get off any of her pain meds, and we are trialling patches now.  The las operation, she had a reaction to Morphine, which gave her menegitis symptoms.  So this is no longer an option for her.  Seeing a counsellor has become a priority, however finding one who is prepared to take on her case has been difficult.  We are hoping to start back at hydrotherapy next week. 

On a positive, her friends have been supportive, and visit her every couple of weeks.  Kat has also started communicating with a couple of members from kneegeeks via msn which helps alot.  Education wise kat has returned part time to studies doing what we call TAFE and americans call College, one night a week, attempting to do a business administration course.  one class at a time.  So she is trying to keep as postivite as possible and really appreciates any messages support the members from kneegeeks give,  to keep her focused on the future, as she is determined to walk and resume her studies in acting  in the future. 

Catch you later vicki

Offline crankerchick

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Wow I'm so glad you came and posted. I actually was thinking about this thread the other day and wondered how things were going. I'm so sorry things aren't going as planned, but happy to hear that Kat's spirits are up and that she is trying to get on with her life in spite of these trials.

Graduating to a standing ovation? Going to senior formal? How awesome and what a great feeling that must have been. Must have sucked to be the kid after her, but with a story like Kat's, who would complain?!

I really do hope things improve for Kat. I don't sign in to MSN too often, but my msn name is the same as my name on here. I would be more than happy to chat with Kat. I'm a bit older than her at 28, but I did have my tibia derotated, along with my femur too (although mine was not with external fixation). My journey has been nothing like hers, I wouldn't even try to compare, but us twisted sisters still have to stick together. I'm always there to offer words of encouragement or listen to a venting session!
« Last Edit: March 09, 2010, 12:57:37 PM by crankerchick »
Mar '07 - plica excision
Oct '09 - femoral + tibial derotational osteotomy & TTT
Aug '10 - hardware removal
"You control your leg. Don't let it control you." -Smart trainer
"Get your a$$ in gear and go for it! Nothing will happen until you make it!" -Smart doctor

Offline vl7007

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i told kat about you. she will try, but at the moment her pain is getting the better of her.  kat is having another growth spurt at the moment.  everytime this happens now, her muscles go tight and the femurs and tibias resume twisting again.  this causes so much distress for her.  the physio suggested carefully massaging down the sides of her thighs but now the calves (this is too painful for kat) to see if this helps but to be careful incase kat develops blood blisters.  the oxycontin, endone, and gabepentin don't seem to be helping much.  the doctors didn't break her growth plates when they derotated her tibias and fibulas in september last year.  In feb this year they re-derotated only her left leg (as it was twisting again), and again didn't touch the growth plates.  so now kat is growing again.  last september she was 190cm, or 6ft 3in tall, but now she is up to her brothers nose and he was 6ft 11in last time they doctors checked his height back in january. physio thinks kat is closer to 6ft 6in now, i only come up to her shoulder, and i am 5ft 6in.  when we see the limb reconstruction team in 2 weeks, i will ask them whether it is plausible to break the growth plates when they look at her hip and femur realignment.  It is getting to the stage where i need to take kat to hospital for IV treatment for pain to give her a break from the intensity of it.  every time she tries to stand with her crutches her left leg cracks audiably and she gets more intense pain.  all the physio can recommend is to stay in bed, take it easy  and reduce her standing to transfers to commode or wheelchair, and only walk with crutches a couple of steps each day.  At least kat sees the pain team next week, so they can hopefully adjust her meds, or talk to the surgeon.  however having said all of this kat is still trying to remain positive about everything and is planning her future, and would like to be able one day to travel overseas again.  I took her to borneo and malaysia about 4 years ago to see the orangutans and probocus monkeys in the wild.  kat loved that and would like to return as well as go to England to visit friends, but knows that this is impossible until her leg issues are resolved.  catch you all later kats mum vicki

Offline solstice M

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Hello Vicki, so glad to hear from you.  Kat has been on my mind a lot since your last post and I have been wondering how things were going for her hoping that the operations had put her on the road to being able to walk again.  I had been scanning the posts just in case you had written and when I didn't see anything I just hoped that things were gradually beginning to improve for Kat and that she wouldn't have to undergo more operations in the near future. I happened to check the section a few days ago and saw your signature.  With a mixture of anticipation and apprehension I read your post.  What spirit, determination and bravery your daughter has.   To go through all of that and complete and be successful in her exams is truly inspirational.  Reading your account of Kat's determination to leave the Hospital to be able to receive her Certificate and her getting up and walking the three steps to be presented with it and the other pupils and staff cheering and clapping her must have been one of your happiest and proudest moments and justifiably there wasn't a dry eye in the building.  (The tears were trickling down my face as well when reading your account).  The memories of that wonderful day will stay with you forever and will sustain you and Kat through the very difficult and sometimes demoralizing days that you have experienced since then and in the future.
It was so, so, sad to then read of all the problems and pain that Kat was again going through.  Very sad to hear of the problems Kat now has with the hips as if she didn't have enough to contend with.  Everything seems to have a knock on effect, doesn't it the longer things go on.  The problems Kat is having with pain relief and all that entails, more hospital appointments, the thought of more operations in the near future.  It must seem never ending for you all.  It is hard enough trying to cope with trying to get one part of your body fixed without having the additional worries and pain regarding the hips.  On a little more positive note Kat has managed to be able to stand and do a few steps with her crutches and having that feeling of standing and walking (albeit a few steps, at the moment!) even though it is painfull, she has had a taste again of being able to get up and walk a little and I know that she won't want to let that go and that WILL fire her on through the sometimes dark and painful days.  Yes, it would be good for her if she could find a Counsellor to talk to after all the 'emotional and mental trauma' that she has gone through over a long period of time and to help her with the enormous 'loss' she is experiencing as she is so young not to mention the anger which I'm sure she must have to deal with.  Also it might be helpful for you to have someone like that to talk to as well.  It must be so hard for you at times to keep your head above water always trying to be strong and supportive for Kat when I'm sure at times you just want to go into a corner and cry. You really do need to offload sometimes.  With Kat's determination and courage and with the support of you and her family I know that Kat will eventually get to where she wants to be.
Kat will continue to be in my thoughts and prayers through the difficult times ahead.  Thankyou for finding the time to let us know how Kat is doing.  It would be good to know how things are going in the future.  I know your time will be taken up with Kat and all that is going on but when you can and when you feel able to it would good to know.  Until then will be thinking of you and Kat, remember to look after yourself as well.
Love Mia X
6/07 TibPlat fracts 3 + Fracts knee fib & humerus(Plate in then remvd infect more surgeries 3mths in hosp.chronic infect. in tibia
2/08 /rotational skn flp skin & bone grfts 6 wks hosp
1/09 Knee remvd Antibiotic cement spacers in situ5mths NWB+IV antibio 6wks
6/09 2nd stage KR Lng stem WB crutchs

Offline crankerchick

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This sucks that she is twisting again and stuck in bed or a wheelchair :-(

Know that lots of people on here are rooting for the positive end to all of this. It may not be in sight just yet, but it's not too far out. And its so great that both of you are trying to spread awareness like you are, not only does it help others, but it also helps to give a sense of purpose and provide distraction. Hopefully things will calm down soon. Kneegeek prayers are definintely with you all!
Mar '07 - plica excision
Oct '09 - femoral + tibial derotational osteotomy & TTT
Aug '10 - hardware removal
"You control your leg. Don't let it control you." -Smart trainer
"Get your a$$ in gear and go for it! Nothing will happen until you make it!" -Smart doctor