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Author Topic: Mgibson77 - Internal Femurs - Dr. Mahboubian - 2016 - My PRECICE Journey  (Read 15503 times)
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kneehowguys
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« Reply #20 on: March 30, 2016, 05:51:40 AM »

1. Are you doing anything to earn money during your lengthening? What do you think an electrical engineer could do to earn money during lengthening?

2. What are you doing for entertainment?

3. Anything you wished you had brought with you?
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Frenetic
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« Reply #21 on: March 31, 2016, 01:41:54 AM »

So at no point during your lengthening did you have pain above a 2-3? our of 10?

Also, do you move around with a walker or can you walk normally with the PRECISE nail?


By the way to all the oldtimers I'm Kidrobot from a long time ago so I've read many many diaries,
I used to waste too much time reading the site so I quit for a couple of years and have come back as
FRENETIC.  Back in like 2014 there was so much talk that a FULL WeIGht BEARING PRECISE nail
was just around the corner and did not require clicking but just some sort of external magnet application
to lengthen.  Is that still the case? Was that ever achieved? Fill me in on what's been going on!
fuc* back then Syria wasn't chaos zone, what happened with all the patients down there?
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mgibson77
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« Reply #22 on: April 17, 2016, 11:51:28 PM »

Updating after a while. I visited Dr Mahboubian on Friday 4/15/16 and we saw that I'm now at 5.84CM which is about 2.3 inches.

Difficulties experienced so far
 - knee pains
 - nerve pain in muscles around knee
 - painful tightness in right quads
 - muscle spasm at night - in the quads.

These are not major difficulties - they are associated with your legs stretching and can go away later.
Dr. Mahboubia gave me medicine for the nerve pain and muscle spasm and I've been able to sleep just fine.

I have about 3 more weeks to go but its getting more a more stiff so I'm thinking about stopping at 7CM as recommended by Mahboubian. If i'm able to go more, I'll try getting to the 8CM mark.

stay tuned for more update later.
 
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mgibson77
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« Reply #23 on: May 01, 2016, 07:21:20 AM »

Hey kneehowguys and Frenetic I'm so sorry my last update didn't answer your questions/concerns.
I can't tell exactly how I missed them;I must have been in a hurry.

I'll answer them below.

Answers for 'kneehowguys' - answer below your questions.
1. Are you doing anything to earn money during your lengthening? What do you think an electrical engineer could do to earn money during lengthening?

Before the surgery I saved about $100, 000. I used just about $75K total for the surgery so I had a bit more money saved. Also, just before I did the surgery, my company eliminated my position and put me on severance pay for 6 months so I"m still getting paid regularly till August this year even though I'm no longer with my company.


2. What are you doing for entertainment?
Not very much. My girlfriend and I live together so she takes care of me and keeps my company. Hey no dirty minds...that cannot happen yet :-).
I'm into politics and sports so I watch CNN for hours, Soccer for many more hours and then some Basketball and NFL (when the season was still on). I get bored sometimes but between all those things and traveling to and from physical therapy as well as doing PT at home, the days aren't very long, they go by pretty fast.


3. Anything you wished you had brought with you?
After two weeks in LA, I went back to my house in the Bay Area. I only come to see the doctor every 3 weeks to check me up and take some x-rays to make sure I'm not running into any issues.



Now for Frenetic, I'll answer your last question first.

C. Back in like 2014 there was so much talk that a FULL WeIGht BEARING PRECISE nail
was just around the corner and did not require clicking but just some sort of external magnet application
to lengthen.  Is that still the case?

I'm using the PRECICE 2 device. I don't know much about older devices but with this one, you fell no pain at all when lengthening. Now please read that sentence carefully. It doesn't mean during the lengthening phase, you'll not feel pain. It means when you put the magnetic lengthener on your legs (or arm) to lengthen for the .33mm for each session, you dont feel any pain doing it  but of course your legs/arms will still be in pain from time to time since its still broken till you complete the lengthening phase.

As for weight-bearing, the doctor instructed to put only 73lbs on each leg while lengthening. After that, he'll tell you how much weight to bear gradually.

A. So at no point during your lengthening did you have pain above a 2-3? our of 10?
No, at times there will be pain in your leg so severe that you need pain killers. I take NORCO three times a day to minimize the pain as prescribed by the doctor. But as stated in C above, when you do the actual distraction with the device, you don't feel any pain.


B.Also, do you move around with a walker or can you walk normally with the PRECISE nail?
I move around with a wheelchair or a walker, you can only bear 73lbs on each leg while lengthening.


Pleas feel free to ask more questions.



My own updates.

I'm just about 6 days away from completing the full 8CM (80mm).
By my calculations, I should be at 74.24mm at the moment. My girlfriend made some markings on the wall in our apartment and she was able to measure me to be 5feet 8.5 inches.

My starting height was 5 feet 5.5 inches. So I guess her measurment was not quite accurate but at least I should be a bit above 5feet 8 inches now - the doctor will confirm on Friday 5/6/16 when I see him.


There's been a lot of challenges but you have to keep fighting. My right leg is generally tighter than the left one and that right one has had also sorts of muscle and bone pains.
I'm very excited though to be reaching the fully 8cm and when I look in the mirror standing, I'm quite taller than the 5'5'' 1/2 I used to see.
Looking forward to being able to bear full weight.


Note: Its absolutely important to have your physical therapist be able to give great messages in order to release the tension in your quads muscles and hamstrings otherwise they will tighten and prevent you from reaching your full 8cm. You also have to do PT at home on days that you aren't schedule to visit your PT office. I go to PT twice a week but in between, I repeat most of the exercises at home on the other 5 days of the week.






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a1_z1
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« Reply #24 on: May 01, 2016, 06:31:58 PM »

Oh so the issues that you were having on 17th - they went away enough that the Dr told you that you can now go to fulll 8 cm ?....when did that happen....in your next doctor visit ?  Do you feel that PT had a role to play in it or was it just luck ?Thx
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mgibson77
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« Reply #25 on: May 03, 2016, 07:56:06 AM »

Yes. After he gave me medications for muscle spasm and nerve pain, I was able to sleep well since these pains didn't wake me up in the middle of the night anymore. Also he told me to stop lengthening 4 times a day and instead do 3 times a day.

The reason he asked me earlier to do 4 times a day for 3 weeks is because my bone was growing too fast and he didnt' want it to harden before reaching the desired height which would prevent me from lengthening further. He tells you straight up without sugar quoting it.
So since April 15th, I've been lengthening only three times a day. I'm around 7.6cm now and will see Dr. M on 5/6/16 (this Friday) at which time I'm expected to be done.

Oh yes, physical therapy has a huge role to play otherwise you may not even get halfway with lengthening. After about 1 inch of lengthening, you'll begin so feel noticeable tightness. And as stated in one of my earlier replies, its extremely important for your PT to find hard knots in your muscles and massage them which releases tension and help relax the muscles.

Looking forward to completing the last few days of lengthening.

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mgibson77
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« Reply #26 on: May 08, 2016, 07:40:09 PM »

So I stopped lengthening on Friday 5/6/16.
The result for me was somewhat bitter-sweet.

7-10 days before my visit on 5/6/16, I started noticing that my left leg was not having any pain or tightness at all while the right one was in pain and tighter then the left.

Then five days before that visit, I started noticing that my right femur was longer than the left one but I had no definitive way of measuring it. When I went to PT, the lady there confirmed that the right was slightly longer but she had no definite way of confirming because she didn't take an x-ray of my bone. It was a Tuesday so I called the dr.'s office as he's in on Tuesdays. He had already left for the day and his assistant promised to call me back as she was with another patient - she never called back.  The PT lady said she wasn't sure of the leg difference but since I had an appointment with the doctor in 4 days, I should just wait and see him then rather than buying a flight and flying there that same Tuesday.


At the dr's on that Friday 5/6/16, we took my x-ray and result came back that my right femur was longer than the left one. Reason: the bone in the left one had solidified so the device was no longer lengthening while the right one was still lengthening. Funny thing is that when the bone solidifies, you have no way of knowing except through x-ray.

According to dr. Mahboubian's measurement from the x-ray, my left femur was at 6.8cm while the right one was at 7.6cm.
I was totally shocked but I managed to calm myself down. The doctor advised me to just leave it as is because .8cm or 10mm difference was not so significant. But I could clearly feel the difference when standing on the walker so I asked if he could re-break the left leg to continue lengthening and he said it was not a good idea for just .8cm. Then I asked if we could shorten the right one and bring it to 6.8cm so its equal to the left one. He said the right one had also harden according to the x-ray. I suggested that it had been hurting recently as I lengthen so it may not have completely hardened.

We moved to another room in his office building and luckily for me, an expert from Eclipse ( the company that makes the lengthening device) was at the doctor's office that afternoon so he reprogrammed the device to shorten my right femur but we could only do it in bits and pieces.
We did four sessions of 2.5mm, 2.5mm, 2.5mm and .5mm for a total of 8mm.
After the first 2.5mm, the tightness reduced a bit but I couldn't clearly tell but I had a bit of hope.
Then I did the second 2.5mm and I could clearly tell the tightness had gone down quite well and I could see that my femur muscles were coming together so I told them that for sure it was shortening. But by that time, I was feeling a lot of pain around my hip. The Eclipse expert told me that it was due to the device pulling inward and therefore a good sign. I went through the pain, taking breaks on and of and did the complete 8mm of shortening or contraction on the right femur only.

When we took the next x-ray, the doctor confirmed that the legs were now equal.
So my lengthening ended with 6.8cm which is 2.677 inches.
I was happy that I didn't come away with a leg lengthen discrepancy but sad that I didn't get to the full 8cm or 3.1-inches.
Theoretically, my final height will be 5feet-8inches, I would have been 5feet, 8.5inches.
Yes, I know .5inches is not much to miss out but the excitement I had thinking of the whole 3.1 inches is now diminished.

Overall, I think limb-lengthening is not so difficult or dangerous and I'd encourage folks to go ahead with it. Its just that for your first time, you'll have a lot of fears and doubts and may make mistakes but with careful planning, observation and execution,  you should be good.


Here's why I think I experienced premature consolidation.
The three weeks before my last three weeks of lengthening, dr. Mahboubian told me that my bones were growing too fast so I needed to lengthen 4 times a day and I did. But it means I had to do more physical therapy because my legs kept getting tighter and more painful- which scared me.
Then I started experiencing muscle spasm in my quad muscles and nerve pain around my right knee. Which also scared the hell out of me. These difficulties started happening during the last week of the three weeks of 4 times a day lengthening so when I called the doctor, we spoke and he told me he would address them when I meet him for my next visit which was within a week's time.
When I saw the doctor, he gave me medications for muscle spasm and nerve pain and suggested I continue lengthening at 4 times a day for the last 3 weeks of lengthening. But due to the pain and suffering experienced during those difficult 3 weeks described(without spasm and nerve medications), I got scared and didn't want to cause any damage to my legs so I told the doctor I was more comfortable doing 3 times a week and he agreed.  I then went home to complete the last three weeks by lengthening only 3 times a day. This is where I think my bone consolidated earlier.

Maybe if I hadn't been afraid of the tightness, spasm and nerve pain, I would have done 4 times during those last three weeks and achieve the complete 8cm but like I said, its easy to make mistakes the first time.
I would do this surgery again in my tibia if I had money because now I have the experience.

What do folks think. Do you think getting 2.6 inches out of a possible 3.1 inches is a good result?
If you were in my position, would you have chosen to continue 4 times a day during the last 3 weeks?


Since 5/6/16, there is no pain in either leg at all except when I walk and put more weight on my legs and even then the pain is very minimum like 1 or 2 on a scale of 1-10 and usually goes away after a little while. I don't need pain meds. I'm working on getting my legs stronger and walking again.
The doctor says I can go from the walker to crutches after 3 weeks from 5/6/16 and my next appointment with him is 6 weeks from that same date.



 
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kneehowguys
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« Reply #27 on: May 15, 2016, 05:00:37 AM »

1. Congrats on your new height!

2. Is there anything you wish you knew before you started?

3. Whats is your thought + your doctor's thought on stretching beforehand? Seems some are quiet religious about it (Guichet) and some are like meh becoming flexible beforehand is a waste of time, you can always be safely lengthened 6.5 cm regardless (Paley I think said this?)
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Yardbird
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« Reply #28 on: May 15, 2016, 07:44:52 AM »

Mgibson,

Thank you for sharing your journey with the forum.  You did good.  I had a similar experience during my femur lengthening and had to cut my 8 cm goal short.  Of course, if you decide you need more, you have the option of doing tibias as well.  In my opinion, lengthening both bone segments produces the best aesthetic.  Over five years after lengthening my femurs with Dr.  Guichet in Marseille, my tibia lengthening is this coming Thursday with Dr.  Mahboubian! I am encouraged by the very positive results I have seen from the Precice device and am curious as to how it will compare with the Albizzia.  Best to you.  I wish you a full and speedy recovery.

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mgibson77
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« Reply #29 on: May 19, 2016, 02:35:25 AM »

@kneehowguys:
1.  thanks.
2. I had a lot of info. Maybe I could have done things a bit differently to enable me get to the complete 8cm but no regrets. I'll work on doing my tibias in two years time.

3. Its difficult to tell whether pre-stretching makes a big difference. I thought it did before my surgery so I did stretch a lot. After the surgery, you're very stiff and you start to develop scar tissues in your thighs even away from places where incisions were made. Those big internal scar tissues (not visible unless at incision sites) make it hard to be flexible immediately. But as the scar tissues heal over time, your flexibility returns - of course with good PT.
One good reason to pre-stretch would be so that you know where your flexibility is so you can work toward it during recovery.

A guy I met at Dr. Mahboubian's office is doing his femurs on 6/17/16 and unlike me, he isn't able to bend down and touch his toes so the dr. asked him to work on doing just that.
Verdict is then that its better to be flexible going in as opposed to not being. The level of flexibility will probably depend on the individual - everybody can't be at the same level.


@Yardbird, congrats on your second attempt.
Yes, I have strongly thought about the tibias and I'm already working towards raising money to do it in about 2 years from now so naturally I'm very interested in your tibia journey with dr. M.
I have no experience with Albizzia so you'll be the first guy on here to adequately compare the two methods for us. I can say for sure that the PRECICE is remarkable with both lengthening and recovery. I'll be transitioning from Wheelchair+walker to crutches on 5/27/16. My last day of lengthening was on 5/6/16 so that's just about three weeks from lengthening to crutches. At the moment, I'm able to put almost full weight when using the walker. I did 30 squads yesterday during PT while holding onto the walker and bearing about 80 to 90 percent of body weight.

I know you'll be sedated a lot most of today and tonight following the surgery so you'll probably be back here by Saturday when you discharge from the hospital.
Let us know how it goes.
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Yardbird
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« Reply #30 on: May 22, 2016, 08:31:29 PM »

Moderators . . .  can you open a diary for me? I have just returned home following my tibia surgery with D.  Mahboubian, and would like to share my experience.
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mgibson77
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« Reply #31 on: May 28, 2016, 10:16:00 PM »


Started slowly using crutches from Wednesday 5/25/16 and I've been increasing more time on it since.
I feel some minor - moderate  pain in the femur muscles and knees. Also some fatigue in left hamstring. Everything else look good. I was able to drive the first time yesterday 5/27/16. Felt a bit weird but became normal as I drove some more.

I'm still using all three devices: walker, crutches and wheelchair as and when convenient. The doctor said to go on crutches on 5/27/16 which is not very clear as to whether to completely get raid of the walker and wheelchair so I'm combining all three devices in order to avoid putting way too much wait on my legs than necessary. During my next visit on 6/17/16, we'll clear things up.

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nextinline34
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« Reply #32 on: May 29, 2016, 12:26:34 AM »

Are your rods still in?
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a1_z1
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« Reply #33 on: May 29, 2016, 12:40:36 PM »

Started slowly using crutches from Wednesday 5/25/16 and I've been increasing more time on it since.
I feel some minor - moderate  pain in the femur muscles and knees. Also some fatigue in left hamstring. Everything else look good. I was able to drive the first time yesterday 5/27/16. Felt a bit weird but became normal as I drove some more.

I'm still using all three devices: walker, crutches and wheelchair as and when convenient. The doctor said to go on crutches on 5/27/16 which is not very clear as to whether to completely get raid of the walker and wheelchair so I'm combining all three devices in order to avoid putting way too much wait on my legs than necessary. During my next visit on 6/17/16, we'll clear things up.



2.6 is great bro. tell me the visit BEFORE the one where the x rays showed that your bone was growing too fast, was there even a hint that bone growth was too good...or was it that one day you went to your regular visit and suddenly the doctor said your bone consolidation is too fast so you should lengthen 4 times instead of 3  ?   I am just curious if there are any pre warning signs since I think the visits are just 2 weeks apart right !.....(but than,maybe, it should not really matter cause the doctor told you that all  you have to do is take the nerve pain meds and increase to 4 times a day and that should take care of it ...!
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Yardbird
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« Reply #34 on: May 29, 2016, 07:28:55 PM »

As you say ... be on the safe side and stick with the walker until 6/17. You've gotten a nice gain for yourself. Don't risk anything!
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mgibson77
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« Reply #35 on: May 29, 2016, 11:13:46 PM »

@nextinline34,  yes, rods are still in. I think they stay in for about a year and then get removed through a minor procedure.

@a1_z1, thanks for the encouragement on 2.6 inches.
I think the doctor may schedule your visits depending on how far away you live from him but this is something others have to chip in with based on their own visit time or we can ask the doctor directly to clarify. My visits were scheduled for every three weeks. After lengthening was completed on 5/6/16, he scheduled me to see him 6 weeks later which will be on 6/17/16.
At each visit, he takes x-rays to examine different conditions on your legs and can then tell you whether your bones are growing too fast or too slow and adjusts your lengthening rate accordingly if necessary.

Your concern, though, is very real. You do not know at all whether new bone is growing or not till you visit him and take x-rays. Also, you do not even know whether the device is actually lengthening or not till you visit and have your x-rays taken. True, when you lengthen each time, the device will read .33mm, for example, but you do not know whether the.33mm  length actually happened to your bones. In my case, when I consolidated prematurely during the last 3 weeks, I didn't know it. I was still applying the device and having it read .33mm each time  but those .33mms weren't, in reality, happening to my legs anymore because the bones had hardened.

During the mid stages of my lengthening, there were two things that made me to have some sort of vague idea that my legs were still being lengthened as detailed below: 
1. When I lied down on my bed to lengthen, I could feel some very small movements in my legs.
Note that I did call Eclipse, the manufacturer of the device, and asked whether it was better to lengthen sitting up or lying down and they said either way was fine.
However, just from my experience alone, I don't think its a good idea to lie down and lengthen when you're doing so on your femurs, especially during the mid to later stages. The reason is that during the mid-later stages, everything (muscles, tendons etc) is stretched and under tension so its probably better to not stretch your legs out like that when lengthening. Its better to sit with your knees bend and do the lengthening.  I do feel strongly that its because I was lying down lengthening that I started experiencing too much tightness and nerve pain around my right knee because during such times, the device was stretching muscles, tendons and skin that were already under tension as a result of me having my legs stretched out while lying down on the the bed. Of course, the tightness is gone but since I've been using the crutches as of 5/25, I'm still experiencing a bit of the nerve pain after I walk around for a while. I expect this too to fade away gradually.

2. As in my previous posts, there was more pain in the right leg than the left one during, especially, the mid-later stages of lengthening. Consequently, I could feel some minor, but not unbearable, pain in the right leg while distracting/lengthening.

These two observations were ways I was able to have some idea as to whether my legs were actually getting distracted/elongated each time I applied the device. Of course, you have to discuss all these things with the doctor if you're too concerned about them.


Overall, this lack of exact insight into what's happening to your legs on a daily basis got me a bit nervous so perhaps its something we can push to have improved.
Elsewhere on the site,  I think I remember folks doing their own x-rays (at other hospitals) before their visits but, as always, its best to not do too much outside of what the doctor is already doing with you since you may not know what consequences are there - if any.


@Yardbird, I think that's the best thing to do.
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Frenetic
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« Reply #36 on: June 09, 2016, 10:56:47 PM »

Congrats man, this is just incredible you friggin breezed through this!!!

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« Reply #37 on: June 09, 2016, 10:58:50 PM »

So basically the whole shebang took you five months.  Now the crucial question about the Precise 2.  When will you return to fully walking again (somewhat normally) I'm assuming.  You just friggin hacked your height dude! So happy for you.  So let us know when you're back to full weight bearing.  Will be interesting to know. 
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mgibson77
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« Reply #38 on: June 12, 2016, 11:26:33 PM »

HeyFrenetic,
yeah, it went pretty fast. But folks have to remember its a bit challenging especially as you get to and beyond the 2-inch mark. Challenging because tendons and muscles get tighter but if you're determine, you can pull it off.

I"m visiting the doctor on 6/17 which is about six weeks from 5/6. There and then, we'll see how much the bone has solidified and can can tell me how much more time I should spend on crutches. My physical therapist tells me that bone fractures/breaks normally take about 3 monhts (12 weeks) so we are hoping on that timeline starting from 5/6/16 which was my last day of lengthening. So about another 6 weeks from 6/17/16, I expect to do full weight bearing, if not earlier. At the moment, I can actually stand without holding anything but I don't want to start bearing weight too early to avoid accidents so I only do that to test my legs, not stand on them too long.
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mgibson77
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« Reply #39 on: June 18, 2016, 10:19:15 PM »

I did my next visit on 6/17/16 and, voila, I'm allowed to bear full weight just like that.
Dr. Mahboubian told me I can get raid of the crutches and start walking unaided which was the sweetest news in many years.

I tried it in his office but my legs didn't feel quite strong so I only went a few yards to avoid any injuries.
Today, 6/18/16, I've been walking around pretty well in my house and I use the crutches only when my legs feel tired.

Just a bit of pain here in there in the muscle which is expected. I hoping that after another week or two, I should start walking faster and trying to run. Right leg is stronger (can bear full body weight) than the left one but things should even out over the coming weeks.
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