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Author Topic: Kikau - Internal Tibias - Dr. Mahboubian - 2012 - Bilateral PRECISE  (Read 39872 times)
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goal15cm
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« Reply #20 on: October 11, 2012, 06:31:47 AM »

Hi! Kusop and Kidrobot,

Here is the run down.....
1. The L.L. surgery on May 3rd.  2. The distraction started on the 10th.
3. It ended on July 2nd.   4. Started taking Forteo on July 31st.   5. Finished 28days of Forteo on August 27.  6. Surgery to take out the screw from both ankles on August 30th.  7. 3 days of rest after the surgery.   8. Started walking on my walker and crutches on September 2nd for the first time.   As I said before, standing up felt never that great!!!

So it was altogether 4 months of sitting in my wheelchair.  Yep, It was rough but survived with some help from friends, good books, writing, TV and going to beaches and parks.   

Hope I answered your question!
Take care,
Kikau


Hi Kikau
Congratulations on completing your lengthening. I am planning my surgery with Dr. M in the first week of June 2013. I am planning 7.5 cm in femurs bilaterally. Were you able to walk even short distances inside the house with a walker during the distraction phase?
Thanks
Goal15cm
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Kikau
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« Reply #21 on: October 11, 2012, 07:14:17 AM »

Hi Kikau
Congratulations on completing your lengthening. I am planning my surgery with Dr. M in the first week of June 2013. I am planning 7.5 cm in femurs bilaterally. Were you able to walk even short distances inside the house with a walker during the distraction phase?
Thanks
Goal15cm

Goal15cm,

I was not advised to walk not even short distances with a walker during the distraction phase.  Only transfer purposes to the toilet, bed and etc.  Precice nail is not strong enough to hold your whole body weight and of course the leg bones were already broken...

Wow, so you are going to bilateral femur surgery next June!  Prepare yourself mentally and physically for the wheelchair bound life of at least 4 months or more although I hear femur bones heal faster than tibia.   Have a list of friends who can take you out to shopping and other places that you like!   It's so important that you get out of the house.    Let me know when the time comes close.   I could suggest some tips how to survive during the immobile period.
I wish you all the best and good luck!
Kikau  Smiley
« Last Edit: October 11, 2012, 08:09:38 AM by Kikau » Logged
kusop
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« Reply #22 on: October 11, 2012, 12:54:34 PM »

Thanks for the reply Kikau. When I think about it, you spent 4 months from surgery to walking on crutches and another month to walk without (right?), that is impressive. Well done and good luck with your life.

@goal15cm, hey I will probably do femur with Dr. M one day too. Kikau did lengthening at 0.83 mm apparently, I reckon we femur patients can lengthen at 1.00 mm. So we will probably spend like 2 months on lengthening.

Kikau spent 4 months from lengthening to walking on crutches. We should be able to emulate that even if we do 7.5cm due to faster lengthening with femur. 
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6ftby2014
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« Reply #23 on: October 11, 2012, 03:32:34 PM »

Had to give you another Karma nod. Even though you initially did not want the notoriety of a journal, your insight is invaluable to this community. Grin
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« Reply #24 on: October 11, 2012, 05:06:51 PM »

Congrats and good luck Kikau! Have you spoken to/have insurance covering any part of the procedure? If it could subsidize the cost in some way, it would make Dr.  M an amazing alternative to going overseas
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goal15cm
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« Reply #25 on: October 11, 2012, 06:22:50 PM »

Goal15cm,

I was not advised to walk not even short distances with a walker during the distraction phase.  Only transfer purposes to the toilet, bed and etc.  Precice nail is not strong enough to hold your whole body weight and of course the leg bones were already broken...

Wow, so you are going to bilateral femur surgery next June!  Prepare yourself mentally and physically for the wheelchair bound life of at least 4 months or more although I hear femur bones heal faster than tibia.   Have a list of friends who can take you out to shopping and other places that you like!   It's so important that you get out of the house.    Let me know when the time comes close.   I could suggest some tips how to survive during the immobile period.
I wish you all the best and good luck!
Kikau  Smiley

Thanks Kikau for the reply. 4 months in a wheelchair is a long time. I intend to take up my old hobby of oil painting and playing the guitar when I am wheelchair bound. I will likely rent a place in LA for a couple of months while lengthening. This will allow me to do some sightseeing. My parents and my wife will be there with me the whole time to help me with the wheelchair.
I have a few more questions. Did you have any muscle atrophy and did you walk in a pool to help prevent it or reduce it? Did Dr. M recommend a physical therapist to you? Are you allowed to choose your own PT if you wish to not complete the distraction phase in LA but back home? Does Dr. M allow you to take the ERC remote unit with you so that you can do the distraction part at home under your doctor's supervision perhaps?
Did you have much pain while distracting?
Sorry for asking so many questions. I hope to get a lot of these answered by Dr. M when I see him for consultation also.
I will keep you posted on my date of surgery and when I will be visiting LA. Do you live in So Cal?
Thanks again for your reply
Goal15cm

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Kikau
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« Reply #26 on: October 11, 2012, 06:54:56 PM »

Congrats and good luck Kikau! Have you spoken to/have insurance covering any part of the procedure? If it could subsidize the cost in some way, it would make Dr.  M an amazing alternative to going overseas

Hi! 177orbust,

I know for sure that some of the medications can be purchased through your insurance (depends on which company). This is a sensitive issue so you need to work it out with Dr. M.  Straight L.L. is not covered since it is a cosmetic elective surgery but if you have other issues then Dr. M is the best person to talk to.  I am not helping you much on this but what can you do?  It differs from case to case.

Good Luck to you!
Kikau
« Last Edit: October 11, 2012, 07:16:37 PM by Kikau » Logged
Kikau
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« Reply #27 on: October 11, 2012, 07:15:29 PM »

Thanks Kikau for the reply. 4 months in a wheelchair is a long time. I intend to take up my old hobby of oil painting and playing the guitar when I am wheelchair bound. I will likely rent a place in LA for a couple of months while lengthening. This will allow me to do some sightseeing. My parents and my wife will be there with me the whole time to help me with the wheelchair.
I have a few more questions. Did you have any muscle atrophy and did you walk in a pool to help prevent it or reduce it? Did Dr. M recommend a physical therapist to you? Are you allowed to choose your own PT if you wish to not complete the distraction phase in LA but back home? Does Dr. M allow you to take the ERC remote unit with you so that you can do the distraction part at home under your doctor's supervision perhaps?
Did you have much pain while distracting?
Sorry for asking so many questions. I hope to get a lot of these answered by Dr. M when I see him for consultation also.
I will keep you posted on my date of surgery and when I will be visiting LA. Do you live in So Cal?
Thanks again for your reply
Goal15cm



Hi goal15cm,

You are lucky to have your wife and parents with you when you are going through this.   See, I was alone and there is a huge difference!!!!!!!  You will be just fine!!!  Taking up your old oil painting and playing guitar sound really great...... you are going to have a wonderful time!
I am not certain but think Dr. M will let you take ERC device with you.  He would like to see you every 4 weeks or so.   I am sure you will fly back for the post-op appointment at which time he will take the x-ray to see the progress.  Or even x-ray, you can do it there and send the results and talk to him on the phone......but you really need to talk to him about it.
Did I have pain when I was distracting?   Only one leg...yes severely but that stopped about two thirds way through.    I still have an issue with that leg which lags in healing behind the other.  Every one is different so it might not happen to you.   

You are going to be really fine now that I know you will have your family with you and all.  Great!
Take it easy,
Kikau  Smiley
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Kikau
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« Reply #28 on: October 11, 2012, 07:28:09 PM »

Thanks for the reply Kikau. When I think about it, you spent 4 months from surgery to walking on crutches and another month to walk without (right?), that is impressive. Well done and good luck with your life.

@goal15cm, hey I will probably do femur with Dr. M one day too. Kikau did lengthening at 0.83 mm apparently, I reckon we femur patients can lengthen at 1.00 mm. So we will probably spend like 2 months on lengthening.

Kikau spent 4 months from lengthening to walking on crutches. We should be able to emulate that even if we do 7.5cm due to faster lengthening with femur. 

Kusop,

Your intelligent calculation is right on the mark.   You guys will be done in no time since doing femur!    Just make sure you are covered mentally and emotionally during those months in the wheelchair.  Wish you all the best!

Take it easy,
Kikau  Smiley
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Kidrobot
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« Reply #29 on: October 11, 2012, 07:53:59 PM »

Congratulations, you must be so happy!
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Kikau
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« Reply #30 on: October 12, 2012, 01:32:08 AM »

Congratulations, you must be so happy!

Thank you Kidrobot!

I am still feeling the stiffness when I walk but in general happy that I'm walking!

Wish you a great success!
Kikau  Smiley
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Kikau
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« Reply #31 on: October 13, 2012, 10:24:52 PM »

Just want to share this with you guys.  Even during and after the Full WB with crutches and without, there are going to be a lot of different places that will hurt.... from the lost muscle mass during the wheelchair to newly stretched soft skin, tendon, joints, ankles and etc.  It will be some time before your body to get used to walk using different muscles.  Of course, It's temporary and eventually all will settle down.   I would say the rehabilitation takes time until the precice nail is out of your body and fully healed from it.   
Good Luck,
Kikau   Smiley
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« Reply #32 on: October 13, 2012, 11:53:03 PM »

Quote from: Kikau link=topic=5364. msg66399#msg66399 date=1350167092
Just want to share this with you guys.   Even during and after the Full WB with crutches and without, there are going to be a lot of different places that will hurt. . . .  from the lost muscle mass during the wheelchair to newly stretched soft skin, tendon, joints, ankles and etc.   It will be some time before your body to get used to walk using different muscles.   Of course, It's temporary and eventually all will settle down.    I would say the rehabilitation takes time until the precice nail is out of your body and fully healed from it.    
Good Luck,
Kikau   :)

Hello Kikau

Can you please share us about the pain after Operation ?  I know that there is no painless LL method but  precise seems the less painful than any other method out there at least as I know.   I'm I wrong ?  I'm asking because I'm not high tolerant to pain an I'm not sure If I will make it with external device.   

thanks  :)   
Best Regards SHingo


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Kikau
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« Reply #33 on: October 14, 2012, 08:59:06 AM »

Hello Kikau

Can you please share us about the pain after Operation ?  I know that there is no painless LL method but  precise seems the less painful than any other method out there at least as I know.   I'm I wrong ?  I'm asking because I'm not high tolerant to pain an I'm not sure If I will make it with external device.  

thanks  Smiley  
Best Regards SHingo

Hi! shingo27,

I had tremendous pain after the operation from the broken bones and my legs in general.  I had Percoset for pain and Ambien for sleep prescribed for me. With Precice Nail, the distraction itself is not painful but the ERC machine bruised my legs from it's heavy weight.  I don't know whether it is an isolated case but I was in pain for the whole time until the distraction was over.  Took Percoset for the pain 4 times a day but got a terrible adverse reaction from the pills so quit after taking them for a month and a half.  I did go through a severe withdrawal symptom after quitting.  Took Ambien instead so that could sleep through the pain at night...at least my body could rest vs. waking up from pain every 5 minutes.  Been free from even Ambien ever since started walking on Sept. 2nd.   Just walking around during the day gets me really tired at night, I just fall a sleep naturally and that's the best way!

Hope this helps you.
Take it easy,
Kikau  Smiley



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shingo27
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« Reply #34 on: October 14, 2012, 10:29:57 AM »

Quote from: Kikau link=topic=5364. msg66437#msg66437 date=1350205146
Hi! shingo27,

I had tremendous pain after the operation from the broken bones and my legs in general.   I had Percoset for pain and Ambien for sleep prescribed for me.  With Precice Nail, the distraction itself is not painful but the ERC machine bruised my legs from it's heavy weight.   I don't know whether it is an isolated case but I was in pain for the whole time until the distraction was over.   Took Percoset for the pain 4 times a day but got a terrible adverse reaction from the pills so quit after taking them for a month and a half.   I did go through a severe withdrawal symptom after quitting.   Took Ambien instead so that could sleep through the pain at night. . . at least my body could rest vs.  waking up from pain every 5 minutes.   Been free from even Ambien ever since started walking on Sept.  2nd.    Just walking around during the day gets me really tired at night, I just fall a sleep naturally and that's the best way!

Hope this helps you.
Take it easy,
Kikau  :)

Wow I didn't know precise was so painful. 
after seeing this video an youtube I thought wow this method should be really awesome because this guy doesn't seem to be under pain maybe he is on painkillers . . .
<a href="http://www.youtube.com/watch?v=1PVQBR0Zxvg" target="_blank">http://www.youtube.com/watch?v=1PVQBR0Zxvg</a>

Thanks for your reply your post was very helpful :))









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Kikau
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« Reply #35 on: October 14, 2012, 03:35:39 PM »



Hi! shingo27,

No!!!  The distraction with the Precice Nail is NOT painful at all and really NOT!!!   My pain came from the issues with the broken bones and etc.

Thank  you!
Kikau  Smiley
« Last Edit: October 14, 2012, 03:42:46 PM by Kikau » Logged
around7
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« Reply #36 on: October 14, 2012, 05:47:34 PM »

Hi! shingo27,

I had tremendous pain after the operation from the broken bones and my legs in general.  I had Percoset for pain and Ambien for sleep prescribed for me. With Precice Nail, the distraction itself is not painful but the ERC machine bruised my legs from it's heavy weight.  I don't know whether it is an isolated case but I was in pain for the whole time until the distraction was over.  Took Percoset for the pain 4 times a day but got a terrible adverse reaction from the pills so quit after taking them for a month and a half.  I did go through a severe withdrawal symptom after quitting.  Took Ambien instead so that could sleep through the pain at night...at least my body could rest vs. waking up from pain every 5 minutes.  Been free from even Ambien ever since started walking on Sept. 2nd.   Just walking around during the day gets me really tired at night, I just fall a sleep naturally and that's the best way!

Hope this helps you.
Take it easy,
Kikau  Smiley




A friend of mine who did femur LL with Albizzia, and now is doing tibias with Precise, told me Precise was much more painful to him the first days after surgery than albizzia. However he was comparing different bones...
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« Reply #37 on: October 14, 2012, 08:16:25 PM »

Hey Kikau,

Can you please provide us with some info regarding your physical preparation before surgery. Did you do an intense stretching regimen 2-3 months before surgery?

Thanks a lot


Leonard
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Kikau
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« Reply #38 on: October 14, 2012, 10:21:56 PM »

A friend of mine who did femur LL with Albizzia, and now is doing tibias with Precise, told me Precise was much more painful to him the first days after surgery than albizzia. However he was comparing different bones...

around7,

I understand your friend totally! 

 Smiley
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Kikau
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« Reply #39 on: October 14, 2012, 10:56:38 PM »

Hey Kikau,

Can you please provide us with some info regarding your physical preparation before surgery. Did you do an intense stretching regimen 2-3 months before surgery?

Thanks a lot


Leonard

Hi! Leonard,

I did a lot of stretching exercises on my Achilles tendon and ankles also fast walking, riding a real bike and a stationery bike every day as well.  If you are into swimming, it will be a good one to add!  Massaging the calf muscles vigorously (almost squeezing) for 10 minutes every day is great. Actually I still do it.  

Good Luck!
Kikau  Smiley
« Last Edit: October 14, 2012, 11:04:02 PM by Kikau » Logged
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