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Author Topic: journey of bi-lateral derotational osteotomies of tibias for my daughter  (Read 52557 times)

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Offline crankerchick

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wow, i can't imagine dealing with what you deal with everyday vicki. you are a very strong woman and a great mom!

glad kat could be spared the painful trip to the hospital and glad things are being expedited to get her into surgery sooner.

of course i think a video would be great. even it helps just one person, it is worth it. it still amazes me how many doctors here don't even consider rotational deformities when examining someone with knee problems. any information out there that would help someone be more educated is a good thing.
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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Kat had Preac which is pre admission clinic today where the ortho checks to make certain all the require med work is written up and arranges for any other clinic requirements, ie ECG, blood work, anesthetic clinic, and chronic pain clinic, as well as physio and dietician clinics prior to admission for surgery.  So whilst we were seeing intern, I requested a copy of kat's MRI on her hips so that I could take it to our GP to get refered to a Rhemuotologist if needed.  After reading the report I realised i misheard the physio over the phone, i though she said that the sacorilliac joint was fusing, and that kat had cysts forming in the hip joint.  What the report read was that kat has a focal deformity of right acetabular roof, with bilateral joint effusion (fluid in hip joint), and that she also has subcortical cystic changes on her iliac side of her inferior sacroiliac joints (bilateral).  Also that she has aT2 hyperintense cyst in her pelvis which might explain her stomach pain.   So I shall take this report to the GP to see if we need to address any of this prior to surgery.  tomorrow Kat has orthotic clinic to trial her new feet supports, and in June she will go to anesthetic clinic, however if they call prior to that appointment to bring kat in earlier for surgery on her leg, we are to mention that kat needs to attend both anesthetic and pain clinic, prior to operation, so that they have all the latest info on her.  On top of this i finally took a look at the letter that the ortho wrote for kat to be able to access local community support networks here, and in the letter the doctor stated that Kat will permanently require the use of a wheelchair for support as she has and will have limited mobility due to her connective tissue disorder and how it is impacting on her.  So I guess that really this operation is just to help reduce pain and try to realign the bone to make kat more comfortable as they admit they can't fix the whole problem.  If it gives kat hope then I have to accept it.  I guess i am just rambleling on here so I will close off now.  but it would be nice if someone knew what is meant by the issues in the hip as the ortho surgeons are only interested in what they can operate on and fix. 

Offline vl7007

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Well kat got her foot supports they look like shortened foot splints they stop just below the top of the ankle and velcro over the foot and around the ankle to better support her.  problem with them is that they don't go high enough, and when she tries to stand in them it looks like the tibia slips to the side and over hangs the top of them at the back and inside of her leg and makes it even more painful for her.  so I guess it is back to the drawing board, as these definately don't help.  Kat was in more pain last night and it looked like her foot had slipped sidways to the outside of her leg and the ankle was juting out to the inside of the leg and was almost on the floor, I screamed and jumped when i saw it, and made her sit down immediately. This is happening bi-laterally at the moment but seems to look worse on the right.  I know that it is just the ligaments going in her ankle further loosening, but it looks very wrong, as her right ankle is going out to counter balance the bowing of her left leg so she can stand.  It definately doesn't look good, and i am concerned that they will also need to operate on the right leg again before too long. I wonder if fusing the ankle to the tibia would work in stablising the joint better.  any ideas anyone.  or has anyone else experienced this happening with this type of surgery, and hyperflexibility. Kat has become quite shaken by everything of late, and is having difficulty handling the changes her jonts loosen more and it becomes more painful for her.  She is loosing hope which worries me greatly, as she fears that her future goals may no longer be attainable.  So I took her to our local GP to get some moral support, and also asked about kats MRI and he could only suggest that we leave it all to the pain team to deal with, as it is out of his league.  So I decided to take control of the situation and decided that Kat and I needed some quality girl time, so off we went to the local shopping centre so that kat could have a pedicure, manicure and neck and shoulder massage, whilst I had a reflexology session, then we went to have yum cha at the asian restuarant.  We had such a good time and kat even smiled which was wonderful.  so I think kat needs to do this again prior to surgery, only next time I will arrange for her the have a pamper session with facial and back massage if she can handle lying on her stomach, if not then shoulder and neck massage it is.  I know i just need to keep her focused and occuppied with pleasent things/thoughts/ideas, to take her mind off worrying about the negative concepts of the forthcoming surgery.

Offline crankerchick

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vicki, sorry i haven't posted here in a minute, just wasn't sure what to say. it sucks that her doctors aren't sure how to fix the whole problem and even more sucks that the foot supports don't seem to be right. this is a lot going on for you all right now and i know it seems like it's just one thing after another. but hang tough and just keep pushing through!

good call on the quality girl time. it's nice sometimes to take minute and just do something that allows you to forget about everything else going on. i've been thinking lately about how I can do that for myself. i just need a vacation from my leg! but i'm not sure how to accomplish that as you pretty much need your leg for anything that doesn't involve sitting! And even sitting can get to be uncomfortable sometimes.

i've never experienced ligament loosening or hypermobility issues and i'm sorry to say i can't be of much help in sharing any experience or advice. i just wish there was some better i can help than just saying hang in there. please remind kat that she is built to handle this fight and it's ok to have some time where you feel like giving up, but you can only feel like that for a minute then you have to pick your chin back up and get back on the ride and ride it out till the end. because there is an end and you all will get there eventually and be much better for it.
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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hey latisse,

Thanks for the kind words again. Before i could even tell kat about your message of hope, she was taking back control of the situation.  Kat slept for almost two days and nights solidly only waking up for a couple of hours inbetween, I think it was from exhaustion and feeling overwhelmed by everything that was going on, I was quite worried and managed to get an appointment with another counsellor (for tomorrow) as her previous one had left the area the week before . Then yesterday she woke up hungry and seemed happier, more relaxed about everything, and said that she knows that the doctors are only doing their job and are trying their best for her.  I am so amazed by her strength and proud is an understatement.  I guess my biggest fear is that she will give up trying.  That is something i don't want to see happen.  As like you kat is a fighter.  Remember you are an inspriation to us.

Kats mum vicki

I've attached a pic of kat taken just as her knees were starting to rotate, she did this for a photo shoot as she was wanting to try modelling at the time.  Now she has given up that dream, and has decided to write about her hospital experience.

Offline vl7007

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 ???Well all my updates seem to be negative, I don't mean them to be, it is just that kat's legs and joints keep deteriorating.  Now kat is back in  both moon boots, to help give some stability to her ankles as they keep slipping sidways onto the ground when she tries to weighbare or walk.  Last night her unstable ankle joints caused her to fall badly into a wooden chest of drawers  whilst trying to transfer from her wheelchair commode to her bed.  So we will try moon boots, if it doesn't work then we will have to get a hoist to transfer kat.  I don't know what else to do, even the physio and ortho are at a loss, as kats joints are getting way too loose and she is an unsuitable canditate for any surgical intervention with her soft tissue.

   Any suggestions would be good at present.  On a positive, kat has decided to try wheelchair dancing, as a social outing, if she can manage to sit for long enough in the wheelchair.  I am looking at joining kat in the Sporting wheelies, which is a support group in Australia for people with physical disabilities.  I need to get kat focused into something, to encourage her to try and sit in the wheelchair instead of just laying down most of the time.  I know that it is extremely painful for her, and after an afternoon in the wheelchair she can't move in the bed for a couple of days without crying or screaming from the pain. 

Walking to the toilet is quickly becoming an impossible dream yet again for her.  The difference is that now the doctors have no suggestions in how they can help her further, other than the surgery planned to straighten her left leg.  which they may leave now as her ankles are getting too loose to stand.  Ironically kat still talks about considering further derotational surgery on her femurs, if the pain gets too much for her to tolerate.

However I am starting to question the validity of keeping her legs, if she can't walk or use them.  As her mother I need to know I am doing the right thing for her, I have tried to be well informed, and support my daughter with the decision making about any procedures and treatment, but now I am starting to doubt the benefits of the surgery.  Alright it gave kat some pain relief, (but she is still on opiate medication) the surgery also helped to straighten her tibias, (although they have to re-adjust through surgery again and again), It also enabled her to walk again after three operations, although only for short distances, and for a few weeks at a time, (before she would deteriorate again and require more surgery).

On the postitive Kat feels it all the surgery she has had was worth it, she acknowledges that it has allowed her to walk abit, although she would love to be able to climb a tree, or run again.  Derotational surgery for kat was only part of the big picture with her legs, as her hyperflexibility is now causing major issues with the various joints in both her legs.  So being able to walk again will always be a problem for her. 

I guess I am wondering if things would be better for her if she had artifical legs then the ligaments would no longer be an issue.  However, I may be wrong as she may need the ligaments in her hips to be able to walk.  These are also starting to have problems. I don't seem to have any answers, and it is getting harder for me to be postive for kat, as I can't tell her it is going to be alright.  Kat wants to walk on the beach again sooooooo much.

So if anyone has any suggestions on how I could improve her situation, I would surely appreciate it right about now. 

Kats mum Vicki

Offline crankerchick

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Oh man vicki, not liking the tone of your post :-( you sound defeated. Come on now, pick it up! I can see where you are going though, with the idea that Kat might be better off without her legs. Has this been broached by the doctors at all? I know as a parent you just want to see your child being able to enjoy life, and without pain and you are doing the right thing by trying to consider all possibilities.

It's good that Kat still has the desire to do find things she is capable of doing, and still trying to push herself. That's great to hear.

As always, I don't have any medical answers, I wish I did. Just hope you can cheer up some and get some perspective so you can reclaim the positivity you had just a few posts ago.
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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 :( It's been a couple of days since I last came on.  Kats moon boots needed adjustments, so we had to see the orthotics dept and have arch supports put in to help stop the ankles from slipping over.  On the down side, her knees are getting worse, and the ligaments that hold the patella in place and connect to tibia is loosening and is allowing the tibia to move more out of alignment when she has her leg down on the floor, or tries to weighbare.  This causes additional instability, to the degree that the physio looked at her legs today, and said that kat was too unstable to walk without a walking frame and even then the physio wasn't comfortable with it, and would prefer that kat didn't walk at all now.  The ortho specialist was paged and we were told that she has to go back to wearing knee braces as well as moon boots, however the knee braces need additional metal supports, which we have to wait for the ortho to prescribe. 

Kats surgery date has be allocated for the 12th July, when Dr.T will try once again the straighten her tibia.  This time he will reapply a taylor spatial frame and leave it in place so they can continue to do adjustments as necessary.  The physio has also gotten the okay from the ortho to request a custom pressure reducing cushion  for Kat's wheelchair, and they are looking at a new custom built wheelchair as well.  They are still debating on whether to organise a transfer hoist prior to surgery, or wait until they see what she is like post surgery. 

I also found some more information about Marfans, and found that sometimes the ortho will fuse the ankle to give more stability, however I couldn't find any additional ideas for the knees, once the ligaments deteriorate too far.  The orthotic and physio team didn't have any ideas there at present.  So now I am back to a possible option I don't feel so down about the situation.  Kat seems to be more understanding and content with her situation.  Therefore I too feel all is not lost. 

I am grateful for crankerchick and the person who sent me an email with positive suggestions.  I really appreciate the support.  I needed another prespective on the situation I guess at the time I wrote the previous update.  Emotional and physical tiredness doesn't help much, for the past few months I've averaged 4 hours sleep per night, as I need to do Kats med's at all hours and support both Kat and her brother. Having said this, I wouldn't change being a mother for the world.  I love my young adult offspring and would do anything for them to help them achive their full potential.  I even joked with the orthotists today about kat taking up skygliding post surgery, to which once they got over the shock of the idea, they both quiped that they too would like to do this and would be happy to accompany kat if she did skydive, or absail, or rockclimb, etc.  These are some of the activities that are available under the sporting wheelies program for wheelchair bound people.  Kat is still debating her options and would like to go to the snow and try snow skiing in a chair.  So maybe next year, she will do this after or during her road trip with her friends.

Anyway thats enough for now. 

Kats mum Vicki
« Last Edit: June 26, 2010, 08:41:48 AM by vl7007 »

Offline vl7007

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Well Kat perservered standing, walking and transferring as long as she could with wearing both moon boots even for transfers, but constant falling even when transfering from the bed to the wheelchair, or from the wheelchair to the toilet or car, means that now she needs to use a transfer board until we can afford a hoist for transfers.  Standing is completely out of the question, as kats legs buckle under her the moment she tries too.

 Her surgery is listed for the 12th of next month, but it won't fix this problem now.  They can only straighten the bowing.  Kat's pain from the back of her hips is also radiating down her legs, and it is becoming increasing more difficult for her to lift them and even moving her toes she is losing control of, as she seems to have difficulty in holding her toes downwards they continuely shake when she tries this. and kat can only wiggle the big to and the next one across not any others now. 

Tomorrow she will attend pain clinic, and after that we will see the othropedic team hopefully they will transfer her to another specialist that can deal with her hip pain, and sort out the transfer issues so it is not so difficult for her.  Having said that, kat is trying hard to make an effort and get out of bed every day this week and either visit someone, or go shopping, or go to the library even if it is only for an hour, which is an improvement for her emotional balance, as Kat is demonstrating that she wants to go forward, and not spend most of her life laying down in bed.  Although she is in such pain doing this I am so proud of her for making the effort.

 Any other suggestion of ways transfering would be good at the moment, as getting in and out of a car is a big problem for her.  Seeing her fall into the chair trying to slide across is hard for me, but I know she is trying her hardest. 

Will keep you up to date when i get more information from the doctors. 


Kats mum Vicki
« Last Edit: June 23, 2010, 02:16:36 PM by vl7007 »

Offline SR

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I really wanted to post something deep and meaningful to try and make your day a little better but to be honest everything I thought about seemed a little weak under the circumstances.

I admire your and your daughters determintation. I admire the resolve and I really do believe that no matter what she will find some happiness in this whole process.

I read the thread from start to finish.

Good luck and hang in there!!!!

Offline vl7007

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 :) Wow amazing/hectic past couple of days for kat.  Went and saw the pain team early Thursday morning , they acknowledged there was much more to the picture than just twisting bones, and now realize that kat needs a doctor to co-ordinate all the other doctors and specialists needed to support her as her condition is so complicated, he also felt she could benefit by talking with a psych as this was becoming over whelming for kat and she needed help to cope with everything as the meds were also making her anxious. 

Then we went to orthopedic dept, and they managed to get kat in with the ortho straight off the bat (even though she didn't actually have an appointment and we arrived at the busiest fracture clinic for the week).  The ortho was shocked to see how far kat had deteriorated with her ligaments over the past month, and now even her muscles are becoming overstretched and not retracting properly. 

So I asked whether her hormones were possibly affecting her, as this all started with puberty, and she seems to get worse each month, and this seems to link with her period.  We discussed the connections between hypermobility and contraceptives and pregnancy, then something seemed to click in the doctors brain and she went into meltdown, calling  physio, orthotics, occupational therapy, radiography and medical aids head of departments in to the clinic room to do a joint consult and discuss kats situation. 

Whilst waiting for them to come we discussed gynocology, cardiology, endocrinolgy, rhemuotolgy, respiritory, othomology, haemotology, and neurology, then she started calling them to discuss kat, and arrange in hospital consults when kat comes in for operation on 12th, wanting to know what tests would be needed to be done prior to coming to hospital for the 12th to help reduce her hospital stay. 

Then kat did a standing xray with multiple people holding her up, so they could have a closer look at her spine, and ortho decided that after the next operation, they will need more MRI's done to look at nerve compression, as some of her legs issues appear to be related to this now.

After this, the ortho occupanied kat to have both of her legs cast up from her the soles of her feet up to the top of her thighs, so that they could devise a brace that encompasses her entire leg to support her joints, kat will still be able to bend her knees and move her ankles up and down, but if necessary they will be able to lock the joints as well.  They asked kat what pattern color she would like them to be moulded in to which she picked fire engine red with bananas and monkeys all over them as she said its BANANAS what is happening now, and they didn't have one with crackers all over it. 

The ortho then organised for a transfer board to be sent to our house immediately (which should arrive by monday), and demanded the physio to get kat a standing/walking frame to take home so that she can lean on it with her forearms and still be able to stand or take a few steps once she has the braces on both legs. 

The operation which is to be on the 12th has to be changed now, as they realise now it is too late for them to put on a taylor spatial frame, as it won't help her anymore, so they will only replace the pin and apply a plate to the side, however the left leg will have to be casted again after this as her bones will then be in a different position.

Next we discussed post in hospital rehab, and the physio was told to organise a stay post surgery for kat with a rehab training clinic to help kat learn life skills in a wheelchair, so that she can become independant in the future as she still wants to be able to travel. 

By the end of the day kat was visably shaking and crying it was way too much for her to process in one day and she felt totally overwhelmed by the changes even though it is positive. I really felt for the people who had appointments at clinic though, as this doctor spent around 4 1/2 hours with kat, before she returned to start seeing the patients.  Who were actually booked in for the clinic.  We didn't leave the hospital until well after 5pm, and as that meant there was only one other doctor handling the clinic, it would be going way past closing, there were around 50 people waiting to see the two doctors this afternoon.

The next day kat had to go to the orthodontist to have her braces adjusted, he was amazed when he checked her teeth as they are moving so fast into place that she will only need her braces for about 8 months in total at this rate.  He also realised yesterday that her connective tissue disorder is also affecting the rate of movement in her teeth, making it much easier for adjustment, the down side is that means she will also need a retainer permanently afterwards as her teeth could potentially also move back out of shape when the braces come off.  He was worried that they will want to take off her braces for the next round of MRI's and said that if they need to do her head we have to contact him immediately so he can fit her in to take them off and put on new ones immediately afterward the MRIs.

So like I said a very complicated and busy couple of days, but finally something is clicking with the doctors, and they are starting to see the big picture, instead of just a small part of the puzzle, which has to be positive.  Kat has calmed down, and I took her to a mind, body, and soul convention after the orthodontist appointment, and look at alternative therapies, to see if she would like to relax a bit with a massage or some spiritual healing, etc.  All she saw that excited her was, the handmade chocolate display.  So we went into Brisbane via bus and went to her favorite chocolate shop, she also bought a DS game and had dinner before going back to the hospital to collect the car and go home.  Today she is meant to go to her friends 18th, but somehow I think she will not want to move as she is exhausted.  When she gets her braces/leg splint thingys, i will post a pic so you can see just how funky they are.

Kats mum Vicki
« Last Edit: June 27, 2010, 02:19:42 AM by vl7007 »

Offline crankerchick

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Wow that was an event filled day. So glad to hear the doctors are starting to get on the same page and coordinate. That's great to hear. I'm sure it must be a lot to handle, and some not necessarily what one wants to hear, but still positive happenings for you all.

Glad to hear also that actions are being taken to improve her day to day quality as far as getting upright and moving around.

That's great that the ortho would put that kind of tme into kat's care. 4 1/2 hours?! That's awesome. Sucks for the people waiting though. But it says a lot about a doctor that would put that kind of time in.

Glad there is a good plan and more coordination happening now. Stay positive.
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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Hey everyone,

Well there is less than a week before Kat's next big day.  The transfer board which looks like a stretched out boomarang is bright green and stands out out night not quite glowing but close.  Kat has managed to master it really quickly, and it is much better for her as she doesn't fall now when transferring into the car of off the bed, etc.  On the down side though her left leg is swelling from just below where the ortho cut the bone to derotate, upto and well past the knee now,  it makes the left leg look about twice the size of the right and the knee is puffy as well as the break site and the locking bolt site.  I don't see any redness and that leg is no hotter than then other, so I don't think it is infected, however the bolt definately is sticking out to the side alone with the top of the tibia, if is quite bent from the break upwards.  And feels like it is displaced, but I think it is just the swelling doing this.  Kat also winceds loudly when she tries to move her leg in any way now. So the pain is getting worse. 

Last Friday she had preop anaesethic clinic, and on our way to it we stopped at the newsagency, and trying to turn the wheelchair in a tight space past papers that were in the wrong spot, I bumped her better foot/leg (the right one) into a wooden stand, unfortunately, kat screamed loudly, and said that her foot jarred through to the back of her achilles heel, then she lost all sensation to her foot and ankle.  So I told the anaesethic doctor who sent her to emergency. 

As usual we were told that her case was too complex, and as it didn't look like she had broken her ankle, to leave it until she comes into to hospital for surgery, and mention it to the ortho team prior to the operation.  They then gave her a release to take to the anaesethic clinic, and sent her home.  It took 4 days for most of her sensations to come back, but her ankle is a bit more floppy now, she showed me and her foot wriggles like a rag doll.   So now both ankles as as loose as each other.  Great.(scarcastic overture).

Oh well I have discovered my daughter is definately becoming a fragile flower.  Nothing like the little tomboy that loved to shinny up palm trees to play with the aboriginal children that lived in the property behind us, and go looking for goannas and crocodiles in the NT when she was a wee babe (around 3 years old).  Its okay though as we still have those memories, and she still wants try bungee jumping. Although she knows that is now out of the question, she says nothing will stop her from living her life. which is all that I want to hear.  Don't worry crankerchick I am still positive, I just feel a little guilty for having pushed her foot into the wooden stand, although she did have her foot off the foot rest in front of it instead of on it, and she didn't tell me until after the accident happened,  and I did tell her that I could not see her foot from behind the wheelchair. Oh well it is over now.  Will let you all know what Dr. T ends up doing in surgery, after Monday. 

Keep smiling one and all. 

kats mum
« Last Edit: July 21, 2010, 10:28:20 PM by vl7007 »

Offline Lottiefox

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Hi Vicki

I know I haven't posted on this thread before but I've followed Kat's journey since she first posted back last year. I wondered how her surgery went last week? She is often in my thoughts, despite my lack of input directly to the posts on here. I admire her so much - she seems such a resourceful and determined young woman. I can only imagine how difficult the whole process has been for her, and for those around her who love her. I hope she retains her positivity and strength and I am sure she will achieve some of her goals - albeit in a slightly different way or via a different path.

Wishing Kat a speedy reovery from this last round of surgery and positive thoughts for the next stages.

With hugs from the UK

Lottie x :)
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline tez27

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Dear Vicki and Kat I like Lottie have been reading your posts for quite some time and I have always felt that I had nothing constructive to say to help your situation but decided I needed to say how much I admire both of you, Vicki the stregnth and comitment you are showing to your daughter is amazing and Kat what you have and are going through would prove too much for most people and the fact that you can stay positive throughout everything is also amazing.
Vicki I am a Mother as well as I only have a slight idea of how hard it must be to watch you child [or adult offspring] suffering I count my blessings every day that both my adult offspring are are in good health and are leading full lifes without any major problems.Your stregnth to go through what you do every day just proves what a wonderfull Mother you are.
I hope Kats surgery went alright and will check in soon to hear how it is all going.
Take care and god bless you both
Tez
L K injured 25th June 2008
scope Jan 5th 10
diagnosis ACL rupture
fiberous band excised from acl
ACLr July 19th 2010  scope on 24th Sept 2011
ACL has failed incorrect tunnel placement
23rd July 2012 1st stage of a 2 stage ACL revision
10th May 2013 2nd stage ACL revision