It took a week to get some surgery dates. We were given 4 choices and Mary selected the soonest date which is less than a month away.
Her priority is to be fully recovered for 6th grade and volleyball in the Fall.
The surgery will be at a new hospital for us because Dr. Scott doesn't have an opening at the hospital we prefer until the middle of July which wouldn't allow enough time for Mary to be recovered for 6th grade in the Fall. This hospital is also a children's hospital which is a requirement for us but it is further from our house. We can't really complain because we live in an area with 3 Children's hospitals within an hour from our house.
Mary is handling these surgeries with such maturity. Mary has a lot of events this spring but we think she can attend most in a modified way but she is ok if she has to skip some completely. It's not what she prefers but such maturity in prioritizing and accepting the situation!
Her parents are so much more casual about the upcoming procedures too. The ex-fix does require so much prep but for these two procedures we can just use all the stuff we still have from the fixator. I did review the tips page on my blog to make sure we weren't being too casual and I think we are ok.
We have pre-op next week. The surgery date will be here very quickly. I hope there are no surprises involving the amount of pain, length of recovery, etc.
Mary has started thinking about colors for her cast...currently leaning towards pink, yellow, etc. -Spring colors.
Tuesday, March 25, 2014
Friday, March 14, 2014
Phase 2: final plan and info, waiting on surgery date
We had our appt. with Dr. Scott on Tuesday. It was very similar to the last appt. in December other than we took x-rays to verify what Phase 2 will consist of.
Mary's (FH) left leg is knocked knee'd so Dr. Scott will put in an "8 Plate". This is a very common procedure with FH kids. A professional explanation can be found at:
http://us.orthofix.com/ftp/assets/Product/Product_Files/eight-plate/8P-PE.pdf
My explanation is it stops the bone it is attached to from growing so the whole leg straightens as the leg grows then the 8 plate is removed. If we were doing this alone it would be a 1 hour outpatient surgery, with a 3 week recovery. There is a minor 2nd surgery to remove the 8 plate when the leg is straight which is usually months later.
But...Dr. Scott will be doing a 2nd procedure at the same time. Mary's metatarsals are crooked in her left foot. He will add a bone wedge to her (FH) left foot with a pin to help straighten it. The good thing is this should make her foot larger which is the big benefit for Mary. Her feet are currently 4 sizes different.When examining the foot x-ray he had an idea for the base of the metatarsals but he kept it a secret. I am pretty sure that means he didn't want to freak Mary out with it. This is the procedure that requires non-weight bearing and makes recovery time 2-3 months.
Once again he offered to work on any scars but Mary is hesitant. He wants to make them "more like a line than a moon." I need to ask her if she doesn't want to because she likes them or if she is concerned about the procedure to "fix" them. She has no concern showing them to the world still which I love.
I did verify other than not having an ACL and having a shorter fibula (80% of normal) she does seem to have all other bones, etc. The last 2 metatarsals in her left foot are fused together. The bones in the back of the foot are aligned well but they are also fused together. Her arch is flatter than normal so he wouldn't do anything to it.
Dr. Scott took a hand x-ray to determine her "bone age" meaning how much more growing she has left in her. She is older than her birth age, but the growth centers are still open, so she appears to be "12" not 11. This means since we are only trying to get 1 more cm. to make her legs more even we are still fine on time but he wouldn't go beyond next summer.
Dr. Scott talked about either doing an 8 plate on the "regular" right leg now with the other two procedures on her left leg, or the operation where you stop the growth in the regular leg next summer (it's too early to do this procedure now based on her bone age). He offered to do both legs at once which sounds appealing to get it all behind you but Mary had a great question, "How will I walk if we do both legs at once?" To which he responded "You can walk on right leg but you won't want to."
Stopping the growth is a quicker process but there is a chance of over correcting. The con to the 8 plate is it takes longer and requires 2 procedures to put it in and to remove it. Oh yeah, and the problem of mobility.
He wants to "fix" the left leg sooner rather than later because if the 8 plate on the left (FH) leg doesn't work now then we can do another fixator next year.
Dr. Scott predicts that as an adult the current callus near her left pinky toe will be a problem. It is caused by her bones not being at the same level. Its an "easy" fix, essentially you break the bone and it will heal at the "normal" level.
Dr. Scott, Mom, Dad, and Mary are all leaning towards only doing the procedures on the left now, not both legs at once. My main reason is although it sounds great to get it all behind her, there is no promise it will be all behind her. This is more art than exact science. It sounds like it would be miserable doing both legs at once and if the left 8 plate doesn't work, it wouldn't be the last procedure anyway. We need to try it then go from there.
When we do the left leg only the process is:
So we have all reacted to the news of these additional procedures that we didn't know were coming in a much calmer way than with the fixator- especially Mary! However, we have been waiting for a surgery date since Tuesday and I have to admit I am starting to lose my Zen attitude and my obsessed planning gear is kicking in.
When I called to schedule the surgery on Tuesday he was already booked into July. Mary's only request is that she is ready for the beginning of the next school year or at least for when volleyball starts at the beginning of October. The last week of June would be ideal. The 2nd week of May would be my 2nd choice. However, it is looking like it will be a random day in April...he is trying to find more OR time.
Mary's (FH) left leg is knocked knee'd so Dr. Scott will put in an "8 Plate". This is a very common procedure with FH kids. A professional explanation can be found at:
http://us.orthofix.com/ftp/assets/Product/Product_Files/eight-plate/8P-PE.pdf
My explanation is it stops the bone it is attached to from growing so the whole leg straightens as the leg grows then the 8 plate is removed. If we were doing this alone it would be a 1 hour outpatient surgery, with a 3 week recovery. There is a minor 2nd surgery to remove the 8 plate when the leg is straight which is usually months later.
 |
| Knock-Knee |
But...Dr. Scott will be doing a 2nd procedure at the same time. Mary's metatarsals are crooked in her left foot. He will add a bone wedge to her (FH) left foot with a pin to help straighten it. The good thing is this should make her foot larger which is the big benefit for Mary. Her feet are currently 4 sizes different.When examining the foot x-ray he had an idea for the base of the metatarsals but he kept it a secret. I am pretty sure that means he didn't want to freak Mary out with it. This is the procedure that requires non-weight bearing and makes recovery time 2-3 months.
Once again he offered to work on any scars but Mary is hesitant. He wants to make them "more like a line than a moon." I need to ask her if she doesn't want to because she likes them or if she is concerned about the procedure to "fix" them. She has no concern showing them to the world still which I love.
I did verify other than not having an ACL and having a shorter fibula (80% of normal) she does seem to have all other bones, etc. The last 2 metatarsals in her left foot are fused together. The bones in the back of the foot are aligned well but they are also fused together. Her arch is flatter than normal so he wouldn't do anything to it.
Dr. Scott took a hand x-ray to determine her "bone age" meaning how much more growing she has left in her. She is older than her birth age, but the growth centers are still open, so she appears to be "12" not 11. This means since we are only trying to get 1 more cm. to make her legs more even we are still fine on time but he wouldn't go beyond next summer.
 |
| x-ray of hand determined "bone" age of 12 |
Dr. Scott talked about either doing an 8 plate on the "regular" right leg now with the other two procedures on her left leg, or the operation where you stop the growth in the regular leg next summer (it's too early to do this procedure now based on her bone age). He offered to do both legs at once which sounds appealing to get it all behind you but Mary had a great question, "How will I walk if we do both legs at once?" To which he responded "You can walk on right leg but you won't want to."
Stopping the growth is a quicker process but there is a chance of over correcting. The con to the 8 plate is it takes longer and requires 2 procedures to put it in and to remove it. Oh yeah, and the problem of mobility.
He wants to "fix" the left leg sooner rather than later because if the 8 plate on the left (FH) leg doesn't work now then we can do another fixator next year.
Dr. Scott, Mom, Dad, and Mary are all leaning towards only doing the procedures on the left now, not both legs at once. My main reason is although it sounds great to get it all behind her, there is no promise it will be all behind her. This is more art than exact science. It sounds like it would be miserable doing both legs at once and if the left 8 plate doesn't work, it wouldn't be the last procedure anyway. We need to try it then go from there.
When we do the left leg only the process is:
- Inpatient for one night for pain control,
- Out of school for 10 days (it would be a month if we did both legs at once)
- Short cast initially with a brace on her knee for a week or two,
- Then get her knee moving for a week or 2,
- Take out the pin in the foot after 4 weeks, (in his office which freaked Mary out),
- Then she would move into a walking cast for 2-4 weeks
- So by 8 weeks, she is completely free -out of casts and would start regaining mobility.
- he said to plan for 3 months to be conservative.
- Office visits are less frequent than with a fixator: after 1-2 weeks, then another 2 weeks, then a month
- There is a much lower chance of infection than with a fixator
- She would have a wheelchair initially and to use with long distance but could mainly use crutches.
So we have all reacted to the news of these additional procedures that we didn't know were coming in a much calmer way than with the fixator- especially Mary! However, we have been waiting for a surgery date since Tuesday and I have to admit I am starting to lose my Zen attitude and my obsessed planning gear is kicking in.
When I called to schedule the surgery on Tuesday he was already booked into July. Mary's only request is that she is ready for the beginning of the next school year or at least for when volleyball starts at the beginning of October. The last week of June would be ideal. The 2nd week of May would be my 2nd choice. However, it is looking like it will be a random day in April...he is trying to find more OR time.
Wednesday, December 18, 2013
Phase 2
We had an appt. with Dr. Scott yesterday. It has been 1 year after getting the cast off after the external fixator.
It was a very thorough exam and he took a lot of time with us.
A quick summary is she is looking good but he would like to do 3 additional procedures to help her but none of them are as major as the leg lengthening.
1. Her left foot is C-shaped. So he will go in, cut the bone, add a "wedge" to her foot and hold it in with a pin. This will straighten her foot, make it a little longer and more comfortable in shoes. (I assume it will reduce her shoe size discrepancy which is currently 3 sizes.)
The foot procedure slows you down. It would require 4-6 weeks in a non-weight bearing cast below her knee. A second procedure is required to take the pin out around week 4.
2. She is becoming "knock-knee'd" again. So he will do an "8 plate" which essentially is going in and stopping one side of the knee from growing so as the leg continues to grow the leg will straightening out. This procedure is very common among kids with FH.
An 8 plate is an outpatient procedure that requires 3-4 weeks to get her range of motion back and a second procedure to remove the 8 plate at some point. From what I have seen that is months later. The 8 plate procedure is "easier" than the foot because of mobility and length of time it slows you down.
3. Mary currently has a 12 mm. difference and it is projected to be 14 mm. (It was originally projected to be 7.5 cm. so we did achieve a lot (6cm.) with the leg lengthening.
As a result he will stop the growth on the right side. This procedure we did know would be coming at some point. The first two (foot and 8 plate) were new to us.
His goal is not to make her exactly even but closer to 10 mm because 10 mm seems to be more comfortable in the long run than 14 mm.
Timing: He will see us in 3 months to see how she is doing and take a x-ray of her hand and foot. Since the hand has 30 points, there is a lot of data in one place to determine her "bone age"- meaning how much more growing does she have in her. Is she close to her mature height and the growth plates are closing or are they open because she has a lot more growth ahead of her? He would like to do the procedure on her "normal" leg when her bone age is 12.
He would do the foot and knee procedures at one time - most likely this summer but we will confirm at the next visit in 3 months. These procedures should be done sooner than later.
He would do the procedure on the "normal" leg a year later. The later the better for this procedure.
He will also be considering removing a bunion that has developed on her left foot as a result of the curved foot at the same time as he adds the wedge to the foot to remove the curved shape.
Unfortunately, he said to continue PT (we haven't stopped since June of 2012!!!) and to do what we did when we noticed she was backsliding in October as a result of a growth spurt- increase the PT.
He did say he would throw in fixing some of the deeper scars for "free". You know that means you have paid too much when a surgeon starts throwing things in for free. :-)
The positive of the visit is he did officially say we won't even have to consider a 2nd lengthening. That would have been hard to decide. It was successful but not sure I would sign up to do that again.
Pictures from a CT scan on December 6:
It was a very thorough exam and he took a lot of time with us.
A quick summary is she is looking good but he would like to do 3 additional procedures to help her but none of them are as major as the leg lengthening.
1. Her left foot is C-shaped. So he will go in, cut the bone, add a "wedge" to her foot and hold it in with a pin. This will straighten her foot, make it a little longer and more comfortable in shoes. (I assume it will reduce her shoe size discrepancy which is currently 3 sizes.)
The foot procedure slows you down. It would require 4-6 weeks in a non-weight bearing cast below her knee. A second procedure is required to take the pin out around week 4.
2. She is becoming "knock-knee'd" again. So he will do an "8 plate" which essentially is going in and stopping one side of the knee from growing so as the leg continues to grow the leg will straightening out. This procedure is very common among kids with FH.
An 8 plate is an outpatient procedure that requires 3-4 weeks to get her range of motion back and a second procedure to remove the 8 plate at some point. From what I have seen that is months later. The 8 plate procedure is "easier" than the foot because of mobility and length of time it slows you down.
3. Mary currently has a 12 mm. difference and it is projected to be 14 mm. (It was originally projected to be 7.5 cm. so we did achieve a lot (6cm.) with the leg lengthening.
As a result he will stop the growth on the right side. This procedure we did know would be coming at some point. The first two (foot and 8 plate) were new to us.
His goal is not to make her exactly even but closer to 10 mm because 10 mm seems to be more comfortable in the long run than 14 mm.
Timing: He will see us in 3 months to see how she is doing and take a x-ray of her hand and foot. Since the hand has 30 points, there is a lot of data in one place to determine her "bone age"- meaning how much more growing does she have in her. Is she close to her mature height and the growth plates are closing or are they open because she has a lot more growth ahead of her? He would like to do the procedure on her "normal" leg when her bone age is 12.
He would do the foot and knee procedures at one time - most likely this summer but we will confirm at the next visit in 3 months. These procedures should be done sooner than later.
He would do the procedure on the "normal" leg a year later. The later the better for this procedure.
He will also be considering removing a bunion that has developed on her left foot as a result of the curved foot at the same time as he adds the wedge to the foot to remove the curved shape.
Unfortunately, he said to continue PT (we haven't stopped since June of 2012!!!) and to do what we did when we noticed she was backsliding in October as a result of a growth spurt- increase the PT.
He did say he would throw in fixing some of the deeper scars for "free". You know that means you have paid too much when a surgeon starts throwing things in for free. :-)
The positive of the visit is he did officially say we won't even have to consider a 2nd lengthening. That would have been hard to decide. It was successful but not sure I would sign up to do that again.
Pictures from a CT scan on December 6:
Monday, November 4, 2013
Still recovering and always will be...
This month (Nov. 2013) marks a year since Mary had her fixator completely removed. This was the time frame Dr. Scott said she would probably be completely recovered from the leg lengthening that starting in May of 2012.
Once school started this Fall we started spacing PT out every two weeks and I assumed we would be completely done at the end of this year. Lately we have had some scheduling conflicts so it probably has been a month since Mary has been to PT- although she still does PT at home every night. A week ago we started noticing Mary returning to "toe walking" on her left leg. We thought she hurt it or something. She finally admitted her Achilles is really tight.
She saw her Physical Therapist today and he said her Achilles will always be tight because of the leg lengthening and she may have had a growth spurt exasperating it. We just need to go back to the nightly hamstring and Achilles stretching and he gave her some stretches to do in the morning too.
We are going back to more frequent PT visits to help her regain flexibility.
We see Dr. Scott again in December.
I am getting better at accepting that this is a lifelong situation for Mary- not the one big procedure and then it's all fixed situation that I mistook it to be.
Once school started this Fall we started spacing PT out every two weeks and I assumed we would be completely done at the end of this year. Lately we have had some scheduling conflicts so it probably has been a month since Mary has been to PT- although she still does PT at home every night. A week ago we started noticing Mary returning to "toe walking" on her left leg. We thought she hurt it or something. She finally admitted her Achilles is really tight.
She saw her Physical Therapist today and he said her Achilles will always be tight because of the leg lengthening and she may have had a growth spurt exasperating it. We just need to go back to the nightly hamstring and Achilles stretching and he gave her some stretches to do in the morning too.
We are going back to more frequent PT visits to help her regain flexibility.
We see Dr. Scott again in December.
I am getting better at accepting that this is a lifelong situation for Mary- not the one big procedure and then it's all fixed situation that I mistook it to be.
Sunday, October 13, 2013
Saturday, September 14, 2013
Yoga
We have started taking yoga again from the same teacher from before Mary's leg lengthening and she was so excited to see how much Mary has improved: strength, flexibility, etc.
Friday, July 26, 2013
Dr. Appt. 8 months after removal
- She had a standing X-ray and the current rough estimated difference is 2 cm.
- Dr. Scott said the difference doesn't grow much at this age. (Unlike from baby to age 9 where it grew from 1.5 cm to 5 cm.)
- She will have a CT scan in 6 months which will give a much more accurate measurement of her actual difference.
- He mentioned for the 4th visit in a row that in "a year or two" we can slow the growth of her right leg to make her legs even closer in length. That is a MUCH more simple process than growing the shorter leg.
- He said she can wear a lift on her shoe if it makes her "feel or function" better.
- He likes the way her foot looks.
- He thinks we are close to the end of PT and had a good suggestion of starting to space out our visits more.
- Next visit is in 6 months. WooHoo!
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| CT Scan Right before leg lengthening (laying down, not standing) |
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| Standing X-Ray 8 months after removal |
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