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Author Topic: journey of bi-lateral derotational osteotomies of tibias for my daughter  (Read 52802 times)

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Offline vl7007

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 ;) hey everyone,

sorry i haven't gotten back sooner. to be honest i've watched everyone elses diaries and haven't been ready to add to this one till now.  kat and i discussed with the pain team the possiblity of reducing her pain relief so they agreed to losing 10mg of oxycondone per day but insisted that she increase her gabapentin by another 200mg per day.  the flow on of this means she is not as drowsy so she can now manage to walk to the toilet without her crutches twice a day.  but it is still too difficult for her to do more.  kat is noticing her right knee turning in now along with the left one when she weight bears.  this causes pain in her hips, knees and down her legs into the ankles and feet.  also her feet turn in again.

we saw the OS who says that this is mainly due to her ligiaments been so loose, and that with her hips we may have to wait until she finishes growing, before they operate.  however as her pain is an issue they have decided to do a MRI to look for an AVN in the hips as they feel this could be an issue.  I don't think so though, i think it is just her growing taller and the bones, muscles and ligaments further torsion.  but we will see what the MRI brings. 

other than this removing the stress of studying for her by withdrawing from college for the next 6 months seems to be making kat more relaxed which is positive. it has been lovely not to have to go to the hospital for appointments over the easter period.  having a week break has been like a holiday for both kat and i. 
but it is back to hydro tomorrow. 

will post more when we get results from MRI.

kats mum vicki

Offline crankerchick

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Vicki, glad you posted! I was wondering how Kat has been doing. I know it sucks to have withrdaw from classes for a while, but if helps Kat be more comfortable and positive then it's a good thing.

Glad you were able to enjoy the easter break a bit and looking forward to hearing more when you have the MRI results.
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 solstice M

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Hi Vicki,
Thanks for posting.  You and Kat have been in my thoughts a lot.  I was going to post just before Easter to wish you a Happy Easter but not sure of how things were didn't know how appropriate that would be and didn't want to bother you, so it was good to hear how Kat is doing.
Glad to hear that you managed to enjoy some moments over Easter.  Having a small break from hospitals and appointments and just being yourselves for a little while is a pleasure in itself. Not having to rush off for a hospital appointment gives you a chance to gather your strength again ready for the 'next round.'
It is good that removing and changing some of Kat's pain medication has enabled her to now be able to walk a couple of times to the toilet a day, unaided, though it s not as much as she obviously would want and I am sure is painful for her it is good for her psychologically. That she is able to do this gives her that bit of encouragement and keeps that focus that she will walk properly again, in spite of all the setbacks she is experiencing.
I am sorry that she now has hip and other problems to contend with. At times I'm sure it must seem like an insurmountable mountain to climb but you will get there.  As you say it will be difficult to sort everything out until Kat stops growing, but that day will come, hopefully in the not too distant future!  Although it must be disappointing for Kat having to postpone her College course for the time being taking away that  extra stress and pressure can only benefit Kat's well-being.
Hope the hydrotherapy session goes well and brings some relief for Kat.  Tell Kat to keep hanging on in there and just keep doing what she is doing. Her strength of character and determination has got her this far and will continue to do so until she reaches her goal of walking properly again.
Sending Best Wishes to you both, take care.
Mia
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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Hi vicki just wondering how Kat is doing. I'm sure things are busy and hectic, but just wanted you and Kat to know we are thinking about you here and hope things are doing better.
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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Thanks Crankerchick.  You are right it has been awhile.  But I have been keeping a watch on your blog you crack me up, you are so encouraging and positive even when it gets tough.  That you are now walking without the cane and up stairs is truely amazing especially as your surgery was just after Kats.  Although Kat did have more surgery on her left leg in Feb.

 Well now for the lastest update on the life of Kat.  Her hip pain is not going away, but Kat is determined that it is not going to stop her although she can't sit for long, about 1 hour max before she has to lay down.   Around 3 weeks ago Kat started having seizures, which I feel are due to the increase in the gabapentin med as this not only reduces nerves pain it is also used as an anti-epilitic drug in others.  Kat had epilespy when she was younger but out grew it by the time she was fourteen.  So to see her collasping and jerking, with her eyes rolling backwards, within a week of the increase after 4 years of no seizures, makes me suspect that the meds may be a factor.  However we have to wait until she sees a nurologist and has a EEG, before we can discuss reducing these meds. As her pain team don't want to reduce it.

The upshot of this meant that Kat had no hospital appointments for 2 weeks as she had no hydro as they can't allow her in the pool incase of seizure.  Whilst this delays her therapy on her legs she is sleeping better. the flow on effects are we have been able to reduce her oxycodine down to 20mg twice daily, and in the next week I am hopefully able to take another 10mg away. If I do this gradually she shouldn't have any major withdrawal problems.  With this reducion Kat is definately more alert and capable to move more freely.

Last week she stopped using the wheelchair comode to get around the house and I gave her one of her brothers adjustable canes to walk around.  This she managed with quite well.  Then last wednesday Kat had an appointment with the orthotics dept to have special insoles made to support her feet and help her walk more easily.  Kat felt so confident and in control that she was able to walk from the carpark into the hospital catch a lift to the 2nd floor and walk to the clinic rooms.  We had to go past the physio dept, and the reception staff stood and clapped, her in-hospital physio Matt came out with the biggest grin and her hydro team came out standing there shouting "no way".    Then Kat sat/layed down and rested for about 2 hours before she managed to walk back to the car.  The smile on her face said it all, plus her comment of "it feels good to be able to look down on people again", as she is 6'3", and taller than most.  When we got home she was in a bit of pain so she used the wheelchair for the rest of the day and the next. 

Unfortunately on friday Kat was feeling more able and decided she could clean and rearrange her bedroom without help.  Vaccuming and turning queen size latex mattress are a NO NO.  Kat hasn't been able to stand for the past 3 days, let alone walk.  So I guess she has learnt there are things she can't do yet.  Yesterday Kats best friend came to visit (she lives about  1 hour away which is an imporvement as 4 months ago she was in living in another country) with her boyfriend and they decided to take Kat out for some fun in the sun.  So Dillon kindly carried Kat at the park across the sand and gave her a swing. Then carried her back to her wheelchair.  Kat had such a good time without me in tow that they have planned to take her to the beach next week with a blow up mattress and take Kat out into the water for a swim.  the beach is about 1 hour further south of where we live. 

Kats goal for the next 6 months whilst her friend finishes high school, is to get off all the major pain relief, and try to be able to move around a bit better so that the 3 of them can spend a month driving around Australia, between our family and Sarahs there are people they can stay with almost everywhere, as Kat has over 30 aunts and uncles and 75 cousins across  the country, and Sarah has 14 aunts and uncles and 23 cousins all in different states, so they intend on visiting as many as they can.

We will see how things progress though as if Kat is still having seizures that may put a dampener on things a bit.   catch you later.

vicki kats mum

Offline crankerchick

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Hey vicki thanks for giving us an update!

It sounds like there have been some ups and downs for you all, but that things are going ok. I'm so proud of Kat being able to walk to the clinic rooms. And how awesome is that to have everyone cheering and clapping for her. That must have felt very rewarding for her.

I know how she feels wanting to do more and challenge herself and push the limit. Only by pushing past the limit do you find the new limit. Of course that means tiring yourself out or potentially hurting yourself more. But I understand that need. Hopefully things will improve for her over the next few days so she can be able to stand and walk again.

Her trip sounds really fun and I hope everything works out for her to do it. I hope the seizures are under control, or if not now, that they will be figured by that time so she can do the trip. Everyone needs some fun and a getaway. Fingers crossed and prayers sent!

Take care!
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 solstice M

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Hi Vicki,
Thanks for updating us on Kat's recovery.  Sorry to hear that there have been some new problems to worry about, I'm sure you are right that the high dosage of the medication probably caused Kat's seizures, it must have been very distressing but when they get the dosage adjusted I'm sure this will be sorted.  How uplifting it was to read about Kat getting out of the car and into the lift and WALKING (without aids) to her hospital appointment.  WOW what an achievement for her!  Great that the physios saw her (I can just imagine the look of amazement on their faces) and having them applaud her as she 'walked' by how good that must have felt.  (All this clapping and applause its becoming a habit, at the School as well!) It was very much deserved and being able to accomplish that must inspire her even more and importantly help her in gaining more confidence with her walking.  Its good that Kat has been able to enjoy some time with her friends, the time spent on the beach in the sun experiencing 'normal' things again and hopefully the forthcoming trip with her friends will help her to feel  that she is getting some of her life back.  It must give you a big lift as well seeing Kat get some enjoyment back into her life. It was nice to see the picture of Kat and her friends. 

Hope things continue to improve for Kat without too many extra complications and that she manages to enjoy more days out with her friends and family.  (Don't you forget to spend some time doing something enjoyable for yourself as well!)

Take care, sending you Best Wishes.
Mia
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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Had an interesting day yesterday.  Kat had volunteered to be a test case for the final trial exams of up and coming Ortho's as this is a way of informing other specialists in the field about the complexities of marfans, and its links to rotational features and problems associated with hypermobility and connective tissue issues. . On the up side of having over 76 different opinions and inputs meant the the examiners were able to identify yet more problems. 

The upside? Or should I say down side of this, Aussie Dr.T came in midway through exam processess to recheck Kat's legs and decided that she needs further surgery on her left leg, as it is bowing more since she started walking.  Now he wants to take out the pin or shaft and locking bolts as it has bent and put in a plate to support the tibia better.  He also is concerned again about the right leg and her bilaterial hip pain and will discuss with us next week Kats options, and organise possible surgery dates.  However I feel the need to be convinced that it will be of benefit to her as she goes through so much pain each time they attempt to resolve this problem, and they admit that this is only slowing down the problems.  That her ligaments are all going kerput and that once this happens there isn't much else that can be done.

Ironically in the past 2 days, kat has  having more trouble standing straight when walking and her whole body curves to the side to try and keep her balance.   So back to no walking again untill we see him next week I guess.    I will give you an update after we see Dr.T next.  But have to go now we are late to yet another appointment, this time with the local doc.  Also have reduced the gabapentin by one tablet  a day, and the seizures seem to have stopped however early days, and we haven't seen the Neuro Specialist yet.  Her EEG is next week, then she sees them.  Catch you later

Offline vl7007

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Can things get any worse.  Just got off the phone from Kat's physiotherapist who wanted to know how everything was going at present.  I mentioned the suprise visit by Dr.T yesterday, to which the physio immediately got on the computer to look up kats MRI results.  Now I know there is a lot more to the story about next weeks appointment.  The MRI shows that her Sacro-illiac Joint is fusing, and that she is  developing bi-lateral hip joints  problems including bone cysts which are larger on her right side.  What this means we won't know until she sees the surgeon next week, but the physio requested that kat shouldn't overdo anything.  Not that it will happen now, assince waking up today kat is back to screaming everytime she tries to weightbare or move from the bed into her wheelchair or transfers into the car.  I haven't told her what the physio has said yet, as I don't know what the options are.

Offline crankerchick

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:-( I hate signing in to see sad posts ::mad::

This is all a bit above my head but doesn't sound too good nonetheless. I'm really sad for Kat that she is in so much pain and I hope you all are at least able to get that under control.

As for what is to come, Vicki you have been so smart and educated through all of this so I know you were go over every option presented and you and Kat will make the best decision for her.

Even still I applaud and commend your's and kat's desire to help others and spread the word about rotational issues, even in the midst of all you all are going through. You are both soldiers!

Keeping you all in my prayers.
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 Crankerchick,
 Thanks for the support.  It's all a bit overwhelming at present, and as I said before, we have to wait and see what is suggested next week.  On a positive note I had a look at your shameless plug (Dr. Sanders), the youtube was great to see, and it was also good to be able to put a face to your name. Latisse you are an amazing person as you help educate people and show them that there is light throughout the journey not just at the end. Keep up the good work.   Catch you later Vicki.

Offline crankerchick

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Thank you for the kind words vicki and super glad you visited the page and the fan group. Fingers crossed and prayers sent for next week!
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 solstice M

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Vicki,

Very, Very sad to read your last 2 posts on Kat. It must be more hard to take this time so soon after her walking into the hospital and there seeming a little light at the end of the tunnel.  The better times don't last long do they?  I really don't know what to say other than hoping that they can at least get the pain under control and that all the people involved in Kat's case agree on doing whatever is best for Kat's future.  I agree with Krankerchick that you are knowledgable and wise enough now and although some very difficult decisions lay ahead for you I know that you will make the best decision you can in the circumstances that will be in Kat's best interest.  Don't be rushed into things and listen to your gut instincts as well.

Will be thinking of you during these very difficult times.

Mia
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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Well we went to see Dr.T here in sunny Queensland today to discuss options for kat.  He doesn't seem too worried about her hips at present, as there is nothing that needs his surgical expertise there yet.  The main concern is for her left tibia which has again moved out of alignment by around another 10 degrees since surgery in Feb. which may not seem like much, but that combined with very loose ligaments in both her knees and ankles are causing her lower leg to bow and cause an even greater vagus deformity which combined with the both knees and femours rotating as well is causing difficulty for kat to balance and walk.  Unfortunately the doc explained today, that this is the very last time they can attempt to correct this tibia, as these surgeries is only delaying the connective tissue problems, in kats presentation of marfans and that they are unable to correct her ligaments as technology is not up to kats needs yet.  Surgical intervention with ligaments is not very sucessful for people with marfans. Up shot of this is that kat will most likely continue to need a wheelchair.

We discussed the surgical options of pin removal and plate attachment verses pin and plate attachment, verses external fixation.  They will decide when in theatre which is the best option.  The other issue is that kat will have to keep off that leg completely until the bone has totally healed as in her case weightbearing is causing faster deterioration of the ligaments and further derotation of tibia.  They have listed kat as a category 1 which is the highest priority for surgical intervention here.  In Australia health care is free unless you wish to pay for private treatment.  Everyone is entitled to free specialist care here, the problem is there is often a delay in treatment, that is why they categorise treatment. Emergency is life threatening, must be done within 1-2 weeks.  Cat 1 is urgent and or life threating should be done within 1 month. Cat 2 is semi-urgent and should be done within 2-4 months. Cat 3 is 6-18months.   The doc wants kats surgery as quickly as possible, however due to the seizures she needs to see the neurologist and have an EEG done first which is booked in for next week.

 So hopefully this will be dealt with fairly quickly. The surgery in feb they listed as emergency and was done within 2 weeks, and the one last September was listed as cat 1 and done within 1 month.  The down side for kat is that she has a special friend she made via internet, who is coming over from Scotland next month to meet her and she will most likely be in hospital.  As her first 2 operations she was in hospital 4 weeks, the one in Feb kat was in hospital just over a week, so as they don't know exactly what is happening they can on guess and say around a week for this time.  We will just have to wait and see. 

Atleast tomorrow I see the Endocrinologist with her brother who also has marfans, with complicating issues, so i will bring up kats surgery, and mention the MRI, he may just be kind enough to look at the MRI and decide if he needs to see her or whether she would benefit by an assessment with Rheumetology.  Then I will get the appropriate referral and save some time about the hips.

The bonus from this was Kats father came in to see the doc's and turned to me saying he is so confused by this and doesn't understand why this is happening.  so I was able to explain things to him better.  The other positive is that this time Kat wanted to ask questions, she is finally wanting to take part in the decision making and understand her condition better.  Which shows me she is growing up fast.  I suppose that this means I can step back a bit, and support kat in her decisions, rather than making them for her.  As solstice M said Knowledge is the key.  But I still need strive to ensure I have done my best to ensure that I give  kat the best chance of still being able to walk again.

I will keep you informed of what happens next. 
« Last Edit: May 29, 2010, 03:15:11 AM by vl7007 »

Offline vl7007

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well some things are happening faster than i imagined.  Today i took kris, kat's brother to the Endocrinologist, as he has osteoporosis, spondyloarthropathy (the doc is sitting on the fence about Ankylosing spondolitsis), platelet disfunction, bronchaectasis, marfans, amongst other weird and wonderful medical problems thanks to living with a mixed connective tissue disorder which require a team of 14 different specialists ranging from ortho, and respiritory/ caridology to maxofacial and haemotology to mention a few.  I think about the only clinics he doesn't attend are burns, and gyne (as he is not female). sorry that is a poor attempt at humor.
As his appointment was 2 hours away during peak hour, we left home early 6am, and John (the kids father) kindly took another day off work to come over (as we don't live together) to care for kat who was fast asleep to that I didn't need to drag her into hospital today with kris.  That was so appreciated as kat cries on the trip due to uneven road surfaces due to road work improvements,  which is something she expeiences on average 3 times a week normally.  so not having to travel today, meant she could rest a bit.  Anyway as i was saying kris saw his professor in Endocrinology, who is happy with everything and offer further testing through the gastro team to check for Chrons, which apparently also goes with this condition.  great nuh.  whilst i was at the hospital the Neurology dept, phoned to say that they could bring kat's EEG forward to tomorrow so that the results would be ready for the anaesthetic and pain team in pre-op clinic next week.  To help reduce the delay in kats surgery.  Then the community occupational therapist and community physiotherapist phoned up to see if kat need any further supports in the home and how she was coping with the lastest changes.  Also to see if we needed a hoist in the house yet or was she still coping with transfers in and out of bed.
So hopefully this is a good omen.  I am thinking about taking some footage of the procedure like crankerchick posted on facebook, but putting it here to help others understand what happens.  however this is something i need to discuss further with kat and the med team to see if they are comfortable with this first.  I feel that it would be good for other to have visual understanding. On this site we are so supportive of one and other, and our procedures may be different or similar depending on the case and when we or our family members are first diagnosed with these complicated conditions it is daunting and difficult to find as much info as possible.  I might be wrong here but I feel it might help ours.  hopefully someone out there can give me some advice as to whether this would be appropriate or not. 
Let me know. thanks vicki















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