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Author Topic: journey of bi-lateral derotational osteotomies of tibias for my daughter  (Read 52866 times)

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Offline vl7007

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journey of bi-lateral derotational osteotomies of tibias for my daughter
« Reply #45 on: July 22, 2010, 01:58:52 PM »
Hey everybody,

I didn't want to post anything until I saw how kat went with this lot of surgery.  This time, in sunny Queenlsand, Australia, our Dr.T, and his wonderful team removed the internal fixation pin and locking bolts, realigned her tibia and fibula again and put a T plate on the outside of her tibia to attempt to hold the bone in alignment again.  This time kat is to remain with her leg elevated so that there is no pressure on the bone until it has healed.  Her father bought kat a frog/alien hat to cheer her up in hospital, and we suggested due to the wonderful pain relief concoction she was on  (katamine and fentanyl) that she wear the hat and pull the sheet up to cover her mouth when the acute pain team come in to review her in the morning, as the med's are meant to make her hullicinate, and we thought they would have a laugh at kat morphing.  see pic below.

On the evening of the 5 day post op, kat was allowed to come home, so long as she could use her transfer board and mobilize with her wheelchair.  So home we came, and I must say, she had the biggest smile, although that may also be due to the increase in pain med's on discharge.  Whilst in hospital her endocrinolgist came in and said that she didn't feel there was enough medical evidence to prove that hormones impact on ligament laxity, so she wasn't much help, although she did discover that kat was vitamin D deficent, so now kat is on vitamin D tablets as well.

The neurologist has decided to do some tests on kat's autonomic system after noting a possible problem with kats blood pressure being low and possibly affected by posture, to see whether this is also impacting on her hypermobility, and if so what can be done.  Also the gyno came in and suggested that kat trial the pill to control her menstrual problems, and that we keep a details journal about the daily impact on kats body functions, ie: blood pressure, body temp, hydration levels, joint laxity, abilty to move, food intake, spot bleeding, pain, etc.  So that they can see if over the next couple of months whether this medication will impact on kats condition is a positive or negative way, then they can hopefully work out where to look next.

The orthotic team did a leg casting last month, on kats right leg, and so today, kat went for her first Kafo fitting.  Kafo stands for knee/ankle/foot orthotic, and looks like a modern day enclosed calipher.  see atached pic of kat trying it on.  It took two people holding kat up, one on either side along with crutches for her to manage to try and stand on her right leg, but she couldn't really manage it as she is too unstable even with the orthotic on.   Her orthotic is red with monkeys and bananas on it, and will look slightly different when finished as they need to make a front plate for the shin and adjust the sides and back abit yet.  Once the stitches and staples are out of her left leg and the swelling isn't too bad, they will cast her left leg and make another one so that she has them on both legs.  Then she will hopefully be able to stand and do some physiotherapy using a gutterarm rollator.  The rollator arrived yesterday, so kat is looking forward to trying it out. 

Another positive, was that finally a trial roho cushion came yesterday, so that kat can hopefully be more comfortable sitting in her wheelchair.  Sitting is also quite painful for her, due to problems in her hips now.  Here's hoping that this works, otherwise she will be still stuck in bed which is not good long term.  On the 2nd August,  kat will see the phsio team who will hopefully have an idea of when she can start hydro or rehab post surgery.  then on the 3rd, she will return to ortho to have a review and the stitches and staples removed.  fingers crossed it works/lasts a bit longer.  Anyhow thats where kat is at right now.  So I will check in again when we know more. 

Bye for now

kats mum vicki
« Last Edit: May 29, 2011, 02:35:17 PM by vl7007 »

Offline crankerchick

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Vicki it's so great to hear from you! I've seen your few updates in other threads, but was waiting patiently for your full update here and I'm so glad to read it now. I'm super stoked that Kat seems to be coming along well following the surgery and is now at home and everything.

Prayers sent and fingers crossed that the roho cushion works and that the T plate holds the bone in alignment. It's nice to read that so many of the other doctors are also paying attention to see if there is anything they can do to help Kat.

I'm glad to read Kat's spirits are up and that she is looking forward to the physio. This is undoubtedly a long journey for you all but you brave it so well. Please tell Kat to keep pushing and stay positive. Give it her all ! As we say in sports, give it your all, leave it all on the field. No regrets otherwise.

Looking forward to more positive updates like this one :-)
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 Snowy

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Hi Vicki,

I've been following your thread for a little while now, and I just wanted to add my voice to those wishing Kat the best possible recovery from her surgery. I can't believe how much your family has been through, and I have so much admiration for the courage and determination that both you and Kat have shown in the face of such overwhelming circumstances. I do hope that this surgery and the new orthotics will improve Kat's day-to-day life. I'll be thinking of you as you take your next steps on this long journey.

Take care,

Kay
Mar 11: R Biceps femoris tear (skiing)
Jul 10: ACLr (hamstring autograft)
Mar 10: L ACL rupture (skiing)
Feb 06: L partial ACL tear (kickboxing)
Dec 03: R bone edema (motorbike)
Jan 01: R patellar chip (motorbike)
May 93: R ACL sprain (hockey)
Ongoing: bilateral PFS and OA

Offline vl7007

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hey everyone,

Just wanted to say thanks for your wonderful suport and kind words of encouragement towards my daughter and me.  Kat really appreciates your messages of hope, and this site has been so invaluable to me as a place to communicate our feelings and concerns, as well as to be able to communicate other people who truely understand the hardship of fellow kneegeeks.  Without this site I truely believe I would go bonkers, reading multiple peoples problems and the responses they get from one another helps bring clarity to our own situation and allows me the privilage of realization that there are so many others out in this world doing it so much tougher than us.

 We are fortunate that we live in a country where by medical treatment is an entitlement for all people, although if one wishes to go private you have to pay then.   The only problem is the timeframe for treatment is sometimes lenghty.  But in truth it is still a good system, and does help those who need it.

I am also glad that through this site we have had the opportunity to communicate with some many twisted sisters, as this is also a difficult thing to find here in Australia, as there doesn't seem to be many here.  I enjoy sharing my daughters story with you all, and if you don't mind will continue to do so as this is a journey that we are taking together.  I hope one day to find another story similar so that either i can help them or they could in turn help us understand what is happening.  For this alone I wish to thank you all for taking the time to read our posts and respond in kind.

 I thought I would attach some pics of kats legs before the first lot of surgery, and post 2nd lot and at her graduation when she managed a few steps with crutches, and then the last one is prior to the latest lot of surgery. Catch you when we next have an update. 

kats mum  vicki
« Last Edit: July 23, 2010, 01:49:10 PM by vl7007 »

Offline vl7007

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Back again with another update,

Kat went to have her staples out today, and Dr.T was delighted with her new kafo, we found that in order to keep the ligaments in the back of her knee from bulging and collasping out the back of the orthotic and she required a heavy duty below knee gel suspension sleeve, this this works a bit like a soft knee brace, and is used with prosthesis for amputees.  This is the only thing we could find that would hold her ligaments in place and amazingly it also holds her patella in a much better alignment when used in conjunction with the kafo.

 Kat was so pleased at being able to stand on her right leg leaning on her gutter arm rollator, whilst both the physio and I helped support her on either side.  This time though she isn't feeling as confident as she did with the previous surgeries.  Kat doesn't think her leg can support her as her ligaments are really way to loose, and she feels them slipping even with all the orthotic hardware.  As for her left leg, that is still a no go zone, Dr.T wants her to wait another 6 weeks with it elevated prior to making a decision as to when she can resume any physio other than core muscle bed exercises. Also he will decide when we can get her left leg cast for a kafo at that next visit. 

On a postive note, we went to look at an inhospital talk on riding for the disabled and sporting wheelies, which are 2 sporting groups at are willing to support her when the doc's and physio's decide kat is ready to try some activities.  Kat is thinking about taking up horse riding as it is meant to help with the core muscles, and help work her upper limbs, and hips better than she can.  They suggested that she would be supported on the horse by foam cutouts, that would hold her in an upright postition, and she would be supported by a physiotherapist and an occupational therapist and the  horse handler who specializes in physical disabilities. 

I suggested to kat that this may be an option in the next 6 months, and that it is a great goal to aim for.  With sporting wheelies, kat is signed up to start wheelchair ballroom dancing, again when she is ready, as this was organised and a block of 6 sessions were paid for prior to the last round of surgery.  So for now, more rest in bed is on the cards, which goes with kats territory anyway, as she really does find it difficult to sit up all day, and is only managing it at the moment due to being on such a high level of pain meds.   Atleast we get a 4 week break from hospital, before kat has any other appointments, which is lovely.  the road traffic has been really bad lately, today it took almost 3 hours to travel 35 kilometres, which isn't very far really, and should only take us about 30 minutes when the traffic isn't heavy. 

kats mum vicki
« Last Edit: August 04, 2010, 02:57:52 AM by vl7007 »

Offline vl7007

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 :) Hey Everyone,

Just wanted to give an update on kat's situation.  Not much has happened since I last posted, but have definatedly noted that her pain levels and ability to move seems to flutuates with her monthly hormone cycle.  Also her hips hurt more later in the month rather than early, her knees tend to increase their swelling within a couple of days post period, and she tends to fatigue more mid cycle to late cycle when in the last week of her cycle she is unable to independantly transfer, as she has to hold her legs up and I pull her across the transfer board onto her wheelchair or bed/shower/in-out of car.  It is only a problem with the transfers in and out of the car at the moment, as I can't touch her legs without kat crying. Also her feet then to flop more to the sides as the month progresses and she has difficultly holding then straight and upright.  Kat also has difficulty controlling the position of her feet when she is sitting towards the end of the month. The swelling in both of her knees seems to increase during the day until they are around twice to three times the size they would normally be, and usually happens with her patella slipping sideways.  This is without moving from the bed, except to toilet or shower at present, as kat is becoming more fatigued, and having greater difficulty sleeping at night when her legs are swollen and even more painful.  Her kafo and standing is not happening at the moment until the Ortho sees her next, and the physio is limited to what ever she can handle. 

kat is still having problems with her feeling faint when she moves too much, and her neurologist as arranged a barage of cardiovasular tests next week, to work out whether this is part of her problem with fatigue, etc.  My goal for this week is to try and encourage kat to come with me to Riverfire, which is a festival held each year here in Brisbane, which starts with a syncronized firework/music display that covers an area of around 4 kilometres up our main river, which snakes around the city,  and the fireworks start and finish with an display of F1-11's doing a dump and burn through the firework display.  It is really beautiful and lasts for around 45 minutes.  For the past 4 years we have gone and watched it on the cliffs overlooking our city, with a support group called Starlight, which organizes escape/outings for children and teenagers with high medical/disability needs here in Australia.   However this year she doesn't want to go, she says that she would rather watch it in bed on television.  Ironically last year she went to the firework display the day before her first lot of ortho surgery, to celebrate with friends that she was going to get her legs fixed.

So any suggestions on how I achieve this, on how to encourage her to try would be greatly appreicated.  As I know part of her reluctance is her pain with sitting for extended periods.  But it would really be good to try.  I have attached pic's of last year at the fireworks when she went as a modern day vampire.

Catch you all later 
« Last Edit: August 28, 2010, 02:38:31 AM by vl7007 »

Offline vl7007

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #51 on: September 12, 2010, 04:25:38 AM »
Hey everyone,

Well we managed to go to Riverfire again, it was really good to see kat enjoy herself.  The organizers even arranged for a disabled portaloo to be on site, however it wasn't really wheelchair friendly as you couldn't reach the flush if there was a wheel chair inside to portaloo.  Still it was better than no toilet. 

Kat had the cardiovasular studies done, and the result meant that yes she does have a problem with her autonomic system, which basically causes her to faint when she tries to stand, or move into an upright position.  However the Neurologist decided that it related more closer to a heart problem, and has referred kat to a Cardiac specialist who deals with regulatory function, and pacemakers, to see if he can resolve this issue.   It should help with her fatigue, and collasping, as well as kats tachycardia, and breathing irregularities.  So I guess it is a step in the right direction, and atleast it explains part of kats difficulty in being able to mobilize.  We just have to wait and see. 

Due to this development, we have been able to define the type of wheelchair Kat needs to a tilt and space style, so with letter in arm, I will get the Ortho team to review the new information and make arrangements for further modifications at her next visit on Tuesday.  As a negative this now means that hydro may not be a viable option at present, so rehab is going to take another step backwards.  Which is a shame, however I ensure that kat does what she can in bed, and have started building a garden outside and hope over the next few months to put in paving and plenty of high planters filled with roses (kats favorite), so that kat can wheel around outside and create an interest for her.  I am hoping that this will be a positive thing for her.

Despite everything kat goes through, she still strives to achieve things, even if it is only to be able to shower herself independently, although I do have to help her transfer in and out of  the shower, and help her dry and dress as she fatigues too much.  Her ligaments haven't seems to have gotten any worse lately which is good, but then she isn't moveing around much, and we haven't had the usual amount of hospital visits as none of her medical team have wanted to do anything until we have this autonomic problem sorted out. 

One big positive, is that you can barely notice the scars on kat's right leg now, however her left one looks like she has been attacked by a crocodile. Not much else to say, for now.  So I will post again, when Kat reaches another plateau, or we get some more understanding of her condition.

kats mum, vicki

Offline crankerchick

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #52 on: September 12, 2010, 05:45:26 AM »
Hi Vicki, sorry I haven't posted much, been kind of caught up with my own advances with my now-straight-but-once-twisted-now-metal-free leg LOL. But I have been reading and following Kat's progress. Thanks for keeping us up on what is going on.

Glad to read that Kat's spirits are up and that she is still focused on achieving things on her own. It's so good to read that she is keeping the fighting spirit. And how awesome of you to make the garden for her to be able to navigate. I too hope it will be a positive thing for her. And super glad to read Kat enjoyed herself at Riverfire again. Every little bit counts!

Hope things with the cardiac specialist are deal with quickly so that she can be more mobile without fainting. It's like its one thing after another, but you guys keep pressing on. Way to go. I admire your spirit and grit. Looking forward to more positive news.
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 #53 on: October 06, 2010, 03:05:51 AM »
Hi everyone,

Thanks cranderchick for your kind support.  Kat and I have been busy with visiting young teenager relatives these past couple of weeks, it was great to see kat enjoy herself with her younger cousin, playing catch ball and willing to go to her sisters 21st birthday party in the park, (kat didn't want to go until she found out her cousin was flying up to go to it). This was chosen for the venue as alcohol is banned there, so the party would be more enjoyable for the younger ones there.  The theme was fanasty/alice in wonderland high tea, everyone came dressed up.  Kat went as the mad hatter ( Johnny Depp version ) and her cousin went as Alice.  Paul (kat's other cousin) went as a rotting zombie corspe, and kat's brother kris went as the grim reaper, they spent most of the time wheeling kat around the park scarring all the little children there who were also having parties.  Rochelle (my birthday daughter) went as a medival maiden, there were faries, princesses, knights, etc.  The rotunta (large garden arbour) that the tables and chairs were postioned under was wraped in rose flower fairy lights that were battery operated so that when it got darker, it would light up. 

But back to our normal life, and kat and I both have bronchitis at the moment, so we don't feel that great.  It also didn't help that the hospital had lost kats chart, so on her last visit the ortho doctor he asked how long since surgery, then said, okay start fully weightbearing.  He had forgotten that she didn't have a weightbearing plate in and that she needed the other kafo to be made before she is allowed to try standing again.  He then said that she only needed the wheelchair for her heart that her legs were healing well now.  When I asked him to look at her legs he commented that her left leg looked to be malaligned by around 15 degrees, and the right one around 10 degrees, but thats okay, come back for review in another 3 months.  He had forgotten that he had her left leg straighten to 2 degrees back in July, and that they realized back in May, that Kat's bones keep derotating.  However I think it is because of the femurs, as they haven't been done yet.   

When I got home, I phoned the Hospital Administrator and made a formal complaint about the hospital losing kats chart.  In the past they had only lost part of the chart, volume one or two or three, but to lose all of it meant that the doctors had no records to review, they couldn't even find her xrays on computer.  To say that I was disappointed was an understatment.  I informed the administrator that by not having access to her charts and records the hospital risks neglicence, as that as kat now needs to see a cardiologist for a pacemaker, that if they can't find the charts, they won't know what to do.  So the hospital is causing delays in kat's rehabiliation, which I am not happy about.  Amazingly they managed to find the entire chart within the day, volume 3 was still in the ortho ward from when Kat had her operation back in July, Volume 1 was in Endocrinology Department, and Volume 2 was misfiled in the Records Department.

 Then about a week later I realized that we were going to run out of some of Kat's medications which if I get them prescribed through the hospital they are alot cheaper for us, so I phoned the ortho clinic and spoke to to nurse, who managed to pull kats chart, and said sorry we made the wrong appointment date for kat, she is meant to be seen very 6 weeks, as her bones keep twisting, not in 3 months, can we come back in 2 weeks, and they will arrange for the scripts then, and also discuss kats future rehab options, and not to try weightbearing until she has been fitted for her kafo, and has been shown what to do by the PT. 

I don't blame the doctor for forgetting kat's case, as he sees so many patients, however, I do feel that the hospital needs to take more care to ensure the doctors have access to the files. It didn't help when the Neurologist suggested that I keep copies of all attendence notes, as she also only got access to part of kats chart and didn't know what was happening, so she had to request kats child chart from the childrens hospital to get a more clear picture.  It did help her by doing this as then she realized that different tests were needed, and that kat had an autonomic dysfunction issue as well.

Kat and I went to see the local doctor again on Tuesday about our bronchitis, when I asked him to document kats pain in her lower back and hip, and also to look at her legs.  He was shocked as he watche d her patella dislocate when kat straighten her left leg and start to dislocate on the right leg.  I said to him I don't think that the surgery is working, and he agreed, but said he had no idea what to do, and asked when do we go back to the ortho team again.  I explained the problems with the charts, so I wanted him to also keep records for us, he agreed to look at kats legs each week and document changes for us. 

Anyhow enough of moaning.  I know tomorrow is another day, and things can only improve.

Catch you later


kat's mum vicki

« Last Edit: October 06, 2010, 01:12:47 PM by vl7007 »

Offline vl7007

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #54 on: November 24, 2010, 01:08:22 PM »
 :-\Hey everyone,

I haven't writen for a while now, as I was waiting to see how whether kat would improve.  We have managed to confirm that at certain specific times of Kats monthly hormone cycle, kat has definate difficulities with her ligament laxity.  Also now she is finally getting an electric hoist for the bad days, and and electric wheelchair to enable her more independence in moving around freely.  Unfortunately this means that the bathroom needs to be modified again, along with her bedroom and laundry to allow access.

I also managed to find a community service that would assist with hydrotherapy so that kat can get so physiotherapy happening, as the hospital was too worried about occupational health and safety, so they weren't prepared to risk her safety in the pool, in case she lost conciousness, and drowned in the pool.  However without the hydro, kat can't improve, so it was a catch 22.

Had an interesting visit with her surgeon yesterday though, and was hoping that someone out there can clear up something for us.  The surgeon claimed that he compared her CTscan with one done prior to kats original surgery Sept, 2009, and noted that he had corrected her malalignment in the left leg by over 80 degrees in total, and the right tibia by over 60 degrees,  however her Q angle for the left leg was still at 47 degrees and the right tibia was around the 38 degree of angle, Also that her femurs were at 23 degrees for the right and 28 degrees for the left leg.  I was wondering do these angles sound okay to anyone one else. as both her knees are still malaligned when her legs are straight, and both knees still swell. 

Having stated this there is nothing the ortho surgeon can do anyway, until kat has her heart sorted out, which will hopefully be be achieved sometime next month.  Then we should find out about the pacemaker.

Not much else to add except we had a great 4 day break up at Noosa last week, and kat even when into the sea using a beach wheelchair  and got wet.  It was good to see a smile on her face even if it was only for a short spell.

Catch you all later.

Kats mum vicki

Offline vl7007

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #55 on: January 04, 2011, 06:27:55 AM »
Hey Everyone,

Well another year has started, here hoping it's better for everyone.  Kat and I have been going with the flow of the festive season, which will continue for the next couple of weeks here, whilst we have more visitors from interstate, and celebrate belated xmas/new year along with birthdays.  Kat's 19th is coming up quickly, and she has decided that she needs a new handbag, so I guess we will be going shopping in the next week to get one. 

Not much as progressed here on the medical side of things, hydrotherapy sizzled out when the  ortho physiotherapist wanted a Cardiologist on-site before they would let her into the pool. Yes you guessed it, we saw the regulartory specialist, he did an ecg on-site which was abnormal, and an ecg holster test at home for 24 hours.  This is after the Cardiac team decided to list Kat with the Cardiac Failure Group, so now Kat has yet another clinic to attend.  Now she has to see 3 different Cardiologists, one for regulartory system, one for aneurysms, and one to co-ordinate between them and the Cardiac Failure Group.  We don't know what the implications are yet other than a message on voice mail from the co-ordinator saying they look forward to meeting Kat, and are going to try and see if they can help her?  They have also put kat on to 4 sports drinks a day, to help with her electrolyte levels.  They have also arranged for another echocardiogram and some other studies in the next couple of months.  This also means kat can't go to rehab for life skills until her heart is dealt with now.

Kat got her other KAFO a week before xmas, but was not allowed to stand in case she collasped or lost consciousness.  So we didn't realize until we got home that it was rubbing  where the plate and screws are and caused burising.  I guess that means another appointment to orthotics yet.  It can wait, as she can't stand now without collasping within a minute.

The ortho team have referred her to the Scolosis Clinic, as they noticed that her sacral vertebrae is not fused properly, and with the liagment and muscle laxity that is occuring, it is causing excessive pain, and also bowel issues, so they are hoping that the scoliosis team can look at her spina bifida occutla.  Beside this Kat has also been referred to a Rheumatologist for additional support with her hip pain, which we are waiting for an appointment with. 

Not much else can happen now from an ortho point of view until Kat is deemed stable, so we won't be going to that clinic for another couple of months yet.  Anyhow, here hoping everything is going well for everyone out there. 

Catch you all later.

Kat's mum Vicki
« Last Edit: January 05, 2011, 03:14:04 AM by vl7007 »

Offline vl7007

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #56 on: January 08, 2011, 12:57:21 AM »
Hey Again,

Well the Scoliosis Clinic had no answers. Other than making Kat feel bad about herself, the specialist wanted to know who was the doctor that butchered her legs, as he doesn't agree with derotational surgery, and that bones don't rotate like during puberty, who said they did, etc.  To which I reminded him of her last appointment with him over a year ago in, when Kat still attended his clinic at the Childrens Hosptial and he had called in other colleagues to look at her scars, and suggested that they send her upstairs to a patient who wanted to be taller and show them what can happen if things go wrong to talk the patient out of the surgery.  At the time we were horrified by his statment, as at the time the surgery looked good, and for a little while kat was able to walk again.  So we were glad that Kat was old enough to be transferred to the adults hospital.  However we didn't know he was the presenting specialist there as well.  He responded with his option on this type of treatment hasn't changed.  The upshot of this was that Kat was really upset by his comments, (as she didn't remember him from last year one of the benefits of her memory issues) she felt like he implied that she had imagined her leg problems.  Back to this visit, the specialist felt that her spinal deformities weren't responsible for her back pain, that it must be coming from the hips, and have suggested we see a hip specialist.  They also wanted to do a bone scan on her lower spine to rule out nerve impingement, gave kat the paperwork for it and said that they will review her if she decided to have the scan done.  Both Kat and I responded that if they don't think its the spine, then there is no point at this stage in doing yet more scans as she has had so many xrays, CT's, MRI's, in the past 2 years that we are certain she could set off a geiger counter now. He also suggested that she do some hydrotherapy to help with her muscles, and that he couldn't comment on her heart as that was out of his field completely, but we need to find another way of achieving hydro if the therapists at the hospital won't do it. Also that she was becoming a drug addicit, as she had been on the pain meds for over a year, to which I replied that we were weaning the pain killers down, and hope to be off the worst ones within the next 2 months.  However as her bones are twisting again, it is difficult,  Kat is trying different stratigies to cope with this constant pain and learning to suppress it.  Also she doesn't seem to have any problems with the way I am reducing the pain relief, as I have been doing it gradually, and it only gets increased when she has further surgeries. My understanding of Drug Addicits, is that they eventually need to increase the dosage to get the relief or high sensation. Kat isn't wanting it, and she says that she is only a little uncomfortable for a day or so after each reduction, until she adjusts to to pain. All of Kats other doctors are delighted with the progress that she has made withthe reduction ofpain relief and the pain team is amazed and impressed at how strong Kat is and what she has been able to deal with so far. so far.  Needless to say Kat felt it was a wasted visit, and I reminded her that atleast we know now that the pain shouldn't be from the back and that doctors aren't God although sometimes they may act like they either believe they are or behave like they are.  Also that whilst this doctor had his opinion, it was completely different from every other ortho she had seen, and he isn't a lower limb specialist, nor did he remember what her legs were like and what pain she was in prior to the initial surgery Sept, '09, or what happened to the left leg prior to each subsequent operation.  So we came home again, a bit defeated. Sorry about this moan, I know that doctors all have their own opinions, but somehow I feel that there is more to this.  As this  doctor always makes negative comments about the other doctors surgical skills, and he shouldn't say this to the patient.  Anyhow as Rhett says in  Gone with the Wind, "Tommorrow is another Day". 

Offline crankerchick

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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #57 on: January 08, 2011, 02:31:37 AM »
Hi Vicki. Don't apologize for the moan, you are certainly entitled to a moan or two or 100 with all that you and Kat are going through. What a douchebag doctor to make Kat feel bad about herself! Just because he doesn't agree with derotation surgery! There are plenty of doctors and people around here that say the same thing. All I can say is my legs didn't even look twisted, yet they were, and the one that is now straight definitely doesn't hurt like before nor is it unstable like before so I like to think my doctor is dead on in his belief that twisted bones exist and can be responsible for knee pain and instability. If Kat's legs are even a little better now than before then you have to believe the derotation surgery was helpful for her. She has so many other things going on that for him to imply that her surgery wasn't helpful--that it was butchering her legs--well, heck, what a jackass indeed.

I say, use this guy for the expertise he can offer in the area that he specializes in, and as for her lower leg issues, as you said, he's not a lower limb specialist so his opinion on the matter means nothing!

You're right, tomorrow is another day. I hope you and Kat both will keep fighting to get her a better quality of life and not let doctors like this guy get you down!
« Last Edit: January 08, 2011, 02:33:27 AM 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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Re: i am worried about my derotational tibial/fibula osteotomy in 12 days time
« Reply #58 on: January 08, 2011, 04:14:04 AM »
Hey Crankerchick,

Thanks I really appreciate your comment.  I know that doctors don't always agree, and there are a lot out there who don't understand that everyone is different, and  the possibility of an individual having something unusual happening whilst logical is difficult for them to accept.   Unfortunately in life we come across people who just believe they know everything, that they are right and everyone else is wrong.  I know that it is truely his problem, not ours.  But it was great to see as usual we are not alone. 

by the way how are you going?  Haven't seen your posts lately, as I haven't been on site much, while we try to work out where we need to move to, so that we are closer to the hospital now.  Although it may take a while to find the right place that can fit all Kats equipment.  The hospital we go to is in an older part of the city, where most of the housing is around 100 years old and high-set as it is in a flood area, which is not great when one is in a wheelchair.  At the moment parts of Qld are having the worst floods on record. so I may be looking for a while yet.

Offline vl7007

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Hey everyone,

It has been a while since I last posted here.  So much has happened in the world, and with all the global environmental changes, it helped us realize that kats problems are nothing compared with what else is happening around the place.  However I thought I would log on and give a further update on kats progress.

Kat hit a stalemate with the hospital, as nothing could progress without the Cardiac Approval, all her clinics had basically come to a halt for the past few months.  So she started Tilt table therapy to help her with her postural hypo tension issues.  This seems to help a bit combined with her KAFO's,  compression stockings, prosthetic knee sleeves, a stomach binder and hydro lyte drinks throughout the day.

 After 4 months of therapy (where kat can only attend twice a month due to swelling, and fatigue), they were finally able to get kat up and able to walk about 10 metres with a person either side of her holding her up with a special brace with handles and parallel bars to lean on as she went forward.  We found out at this session that kat is now definately 6 foot 4 inches now, as she was as tall as her support person (he is this height).  The only problem was that it made both of her legs swell up so much so,  that even after resting in bed for 4 days she  still couldn't get her compression stockings, KAFO's, or prosthetic sleeves on as her legs were still too swollen.  It took about a week to reduce, and we noticed that even with resting in bed with her legs elevated, they still swell around 2 cm all over, during the night.

So now the Cardiac failure team and the spinal rehab unit have both slowed down her treatment, as they don't want to create further problems.  When she went in last Thursday, after about 20 minutes of treatment, kat started crying about the pain she was in out loud, so they lowered her down, and after seeing how her legs were swelling up through the braces and compressive garments, they elevated them on multiple pillows for an hour until kat could bear to move and get back into her wheelchair.  When I got her into the car, she peeled off the compression stockings and the prosthetic sleeves only to find the the prosthetic sleeve had made her skin tissue/tear.  I will tell the Cardiac failure team tomorrow when we see them prior to Orthopedics Clinic. 

I forgot to mention that the Cardiac team decided to arrange some of her physio through the spinal unit as kat doesn't seem to fit any ones criteria for treatment.  So in order to help support her, they enlisted the spinal rehab team to do some of the therapy as well.  The only down side with this is that we have to attend another hospital for the rehab therapy, but they stated kat can continue to go there for years if required.

Another thing the Cardiac team noticed was that they felt kat was presenting with additional symptoms of autonomic neuropathy rather than just an autonomic dysfunction.  So they have referred her to a General Physician/Internal Medicine, to see if they can work out what is happening, as everything the doctors try, seems to cause additional problems.

We also went to see the genetist with her brother a couple of weeks again, he feels that her condition warrants further investigating, agreeing that her presentation of Marfans is atypical, and that she has additional connective tissue issues happening here.  So he has invited kat and her brother (and the rest of the family) to be part of a research program that he is involved in where his colleagues (rheaumetologists, genetists and endocrinologists) will map their entire DNA in order to see interconnecting conditions.  Whilst it may not help fix kats problems, it can help the doctors in how they treat her condition in the future.  So we see it as positive.

So whilst it seems like not much has happened, kat is very positive at present, and happy in how her life is going forward although it is a slower process than others.  Her current goal is to be able to progress into hydrotherapy sessions again.  We will see, how long it takes.  Tomorrow she goes back to orthopedics for review of her legs, where they will see additional rotation in both of them again, and will say that there is nothing they can do until the Cardiac Team have resolved her heart issues.

My suprise for them is that I want them to do a letter about kat benefitting from an adjustable bed which can raise her legs when needed to reduce swelling, and have built in Trendlenburg tilt to allow her physiotherapy to be applied at home, so that she gets more regular therapy.  Then we could do therapy every day instead of twice a month.  That should help alleviate some of her symptoms and make her more comfortable.  I need a letter from both a treating specialist and the physiotherapists to hopefully get some funding support towards a custom made bed that allows for progessive changes. 

The Genetist also suggested that kat have a bone density scan done, as he is concerned about osteoporsis. As far as pain relief goes, kat has gotten down to 15 mg of oxycontin over 2 days now,  I can't reduce it any further than this as her bones are still moving/rotating slowly and the pain is too much for her when she has to get up and go to the hospital for therapy or appointments.  It takes around 1 1/2 - 2 hours to get to the hospital by public transport at present.

We haven't moved yet, so we will look at modifying the bathroom and laundry to make it more accessible for kat.  I had better get some sleep now as we have an early start to be at the hospital by 8 am tomorrow, Kat and I will be up around 5 am.  Hope everyone else is doing well, I am sooooo pleased for crankerchick and lysney, things are definately improving for you both. 

Catch you later

Kats mum   Vicki
« Last Edit: May 29, 2011, 02:41:55 PM by vl7007 »















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