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[KiloKAHN]

Btw how much you were able to squat before LL?

When I was the same weight in college that I am now I never squatted more than 315 lbs for 3 sets of 8. Always went to the gym solo and didn't want to fail a squat rep with nobody to help me out of it. 1-rep max was probably around 395 lbs just by those numbers.

[Polycrates.]

I never squatted weights, but I had good range of motion for the position and I used to regularly perform sets of 15 reps on one legged squats, going all the way down with hands and arms forward and no assistance. It's unfortunate I did not perform the wall test prior to LL. It wasn't something on my mind at the time.

I can do one legged squats holding onto something now, and it is clearly seen that my tibia is completely upright when doing so. There is no forward movement available, due to my limited dorsiflexion, thus inhibiting me from doing the one legged pistol squat.

[Bigpoppapump]

Great effort Kilo

Your legs look great btw

[CCMidwest]

I have the symptoms of CECS and I read that CECS can inhibit dorsiflexion, so if I do end up needing a fasciotomy to treat it I expect my dorsiflexion will improve and squatting will get easier after recovering from it.

Hey Kilo,

Is there a thread on CECS somewhere? Google isn't helping me much. It's one of the LL related issues I don't know much about, and I plan to also talk to the doctor about tibia LL during the consult.

Thanks man.

[KiloKAHN]

Hey Kilo,

Is there a thread on CECS somewhere? Google isn't helping me much. It's one of the LL related issues I don't know much about, and I plan to also talk to the doctor about tibia LL during the consult.

Thanks man.

I don't think there's a whole thread dedicated to the subject, but MDOW ended up with CECS and here's what he had to say about it:

http://www.limblengtheningforum.com/index.php?topic=680.msg10966#msg10966

His CECS developed after CLL but I have a hunch that what I thought was shin splints from being fat before surgery was actually CECS, and now that I'm trying to run a lot more it's just affecting me more than it used to. I'm getting a referral this month to test for it.

[CCMidwest]

I thought it was just an LL thing, didn't know it could just happen anyway. Got it, thanks Kilo.

[KiloKAHN]

I thought it was just an LL thing, didn't know it could just happen anyway. Got it, thanks Kilo.

Yeah, quite a few athletes get it. Here's a really interesting and detailed case report about a special forces soldier who developed CECS.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3811735/

[KiloKAHN]

Update: 8/22/2016
This morning I saw the local orthopedist who removed my frames last year because I wanted to see if I have Chronic Exertional Compartment Syndrome (CECS). I told him about my symptoms of pressure building up on the front and side of my shins whenever I start running, walk up a steep incline for a long time, or carry something heavy for a while.

He checked my dorsiflexion and said I was still a little tight, although that wouldn't account for the pain I've been experiencing. What surprised me is that he said I shouldn't have started high impact activities yet and that with 6 cm of lengthening I should wait for a full year starting from my last set of x-rays taken after frame removal. Since my last set of x-rays was taken January, 2016 he said I need to stop any sort of running starting now and wait until January, 2017. He also told me that doing strength training on my calves will only aggravate the problem and to stop trying to build mass. Instead, he wants me to focus on improving my flexibility and endurance conditioning. The exercises he wants me to focus on are: swimming, elliptical, spinning, and rowing. Ideally he wants me to progress slowly, starting with 15 minutes each exercise, then ice my legs once I'm done. Later on he'll want me to increase the duration. If I see no improvement come January, he said he'll refer me to a foot and ankle specialist who will test for CECS by having me do high intensity exercises for 20 minutes or so and then stick a needle in each compartment to check the pressure. He said the reason he doesn't want to test me for CECS right away is because compared to a lot of lengthening patients he's seen I've had a great result and he doesn't want to set me back by having me go through a surgery and recovery phase once again.

Btw, I have a slight bulge on the  side of each calf that pops up whenever I exercise or have my feet in a neutral position. It's more noticeable on the left leg. My ortho said the reason it's there is because apparently Dr Parihar intentionally cut the fascia to give the muscle more room to expand and prevent CECS from happening. But if it turns out that I do have CECS in a different compartment, he said they'll do the same thing Dr Parihar did but in a different compartment, and I'll have another one of those bumps on each leg. He said that they try as much as possible not to cut the fascia on female patients because women really hate it (a lot of them complain that it looks like they have a cyst).

Took a pic to show you what the legs look like. You'll notice that there's an indentation on my thighs by the knee, and it's the result of muscle loss. Even with tibial lengthening, your thighs take the biggest hit with muscle loss. It's taking a long time to build them back up.

[paco1]

I think swiming with flippers is very good for the recovery in tibias lengthening and walking in the beach are the best exercises for this recovery.

[exmachine]

KiloKAHN, I thought Parihar requires patients to have a caretaker? How come you were able to do it alone?

[KiloKAHN]

I think swiming with flippers is very good for the recovery in tibias lengthening and walking in the beach are the best exercises for this recovery.

I swam at the gym the other day. A great conditioning workout for the muscles, even though I'm not that good at swimming. I really don't want another surgery so I'm doing all I can.

KiloKAHN, I thought Parihar requires patients to have a caretaker? How come you were able to do it alone?

He requires a family member or caretaker present for local Indian patients. For international patients, if you stay in a hotel the staff acts as caretakers since they have room service, cleaning, laundry and the like. So he doesn't make you hire a caretaker (in fact he brought someone in to act as mine for my first week in the hospital), but he does insist that a friend or family member is informed that you will be undergoing surgery at his hospital before he agrees to accept you as a patient.

[KiloKAHN]

I'm graduating soon and I was wondering when should I schedule a surgery with Dr. Parihar? (1 year before or 3 months before etc)

Also, how much money should I save in total for this surgery? Because I read your post that it will cost about 30,000 USD in total, not including food and other stuff. In your case, how much did you spend in total?

Lastly, how many months after surgery were you able to go back to work? Was it after you got your frames removed?

Answering your message here so others can see.

I sent an email to Dr Parihar in May, 2014 requesting a consultation and told him that my flight was confirmed for June 10. He replied with dates that were open for him and after I picked he told me what time of day to come in. I recommend deciding on a month that you think works best for you and then asking him if he's avaliable then for consultation plus surgery at the time you picked before you buy a plane ticket. There are times when he has a lot of reconstructive patients and won't take any new CLL ones until his schedule is more open and it would suck if you flew out there only to be told that he wasn't taking new CLL patients for a while. So you could get lucky and he'll be available within a week or you might be told to schedule for months down the line.

Here's the list of expenses I put together after I returned home (2014 exchange rate):

Surgery   -  $14,977 / 900,000 INR

X-Rays & Appointment  -  $240.00 (charges at front desk ranged between 1,000 - 3,000 INR. I think it depended on how much time I spent in Dr's office)

Physiotherapy at Hotel -  $17.00 / 1,000 INR per session (Mr Chaudhary's rate)

Medications      -  $40.00

Zimmer Frame  -   $60.00

Wheelchair through Mr Shringare  -   $434.00 / 26,000 INR (I bought the most expensive wheelchair in the catalog but there were many cheaper options available)

Mr Shringare's Custom Splints  -   $55.00 (I recommend each patient to get splints made through him. The splints from local carpenters would eventually break from tension but Mr Shringare's were very sturdy and never did)

Dressings  -   $265.00 (each box cost 600 INR and had enough gauze for 2.5 changes)

Hotel Stay  -   $1,500 per month (at Hotel Maharana Inn)

It only goes up to $30,000+ expenses when you factor in lost income from not working while lengthening.  I was able to go to work a week after I returned with frames on and in a wheelchair with a blanket covering my legs. I had a desk job though and my position was one in the company where I didn't have to move a lot. I can't imagine any other scenario where I could work in frames though. If you have to move around a lot for work then I don't see a way to go back until you get your frames removed, which could mean a year of unemployment.

[Penguinn]

It'll be cheaper now. The rupee has gone down. For example, $14,977 isn't 900,000INR.. it's 1,005,555.

[exmachine]

I swam at the gym the other day. A great conditioning workout for the muscles, even though I'm not that good at swimming. I really don't want another surgery so I'm doing all I can.

He requires a family member or caretaker present for local Indian patients. For international patients, if you stay in a hotel the staff acts as caretakers since they have room service, cleaning, laundry and the like. So he doesn't make you hire a caretaker (in fact he brought someone in to act as mine for my first week in the hospital), but he does insist that a friend or family member is informed that you will be undergoing surgery at his hospital before he agrees to accept you as a patient.

Whaat, so he has to talk to a friend or a relative before the surgery? I live with a friend so he will know about it, but does he really have to talk to Dr. Parihar?

[KiloKAHN]

It'll be cheaper now. The rupee has gone down. For example, $14,977 isn't 900,000INR.. it's 1,005,555.

Yea it should be roughly $1,500 cheaper now. Sucked in 2009 when the USD was weak and surgery alone was $20,000.

Whaat, so he has to talk to a friend or a relative before the surgery? I live with a friend so he will know about it, but does he really have to talk to Dr. Parihar?

Probably whoever you put as your emergency contact. But yea, he spoke to my mom before surgery, and he had a prospective patient who ended up going to Dr Dhawan because Dr Parihar said he had to inform his parents what he was going to do and he didn't want them finding out.

[exmachine]

Yea it should be roughly $1,500 cheaper now. Sucked in 2009 when the USD was weak and surgery alone was $20,000.


Probably whoever you put as your emergency contact. But yea, he spoke to my mom before surgery, and he had a prospective patient who ended up going to Dr Dhawan because Dr Parihar said he had to inform his parents what he was going to do and he didn't want them finding out.

Awww, but I've been living on my own since forever lol. I even paid for my own tuition in college. Do you think this would disqualify me? 

I'm 23 years old btw.

[KiloKAHN]

Awww, but I've been living on my own since forever lol. I even paid for my own tuition in college. Do you think this would disqualify me? 

I'm 23 years old btw.

I was living on my own for a while and at 24 I still had to inform a relative. No harm asking him about it through email though. Maybe he'll make exceptions in certain cases based on individual circumstances.

[exmachine]

I was living on my own for a while and at 24 I still had to inform a relative. No harm asking him about it through email though. Maybe he'll make exceptions in certain cases based on individual circumstances.

Sorry if I ask a lot of questions, its just that it has always been my dream to be taller.

Last question please, did he talk to your mom in person or over the phone. Also did he required her to sign some documents etc?

[KiloKAHN]

Sorry if I ask a lot of questions, its just that it has always been my dream to be taller.

Last question please, did he talk to your mom in person or over the phone. Also did he required her to sign some documents etc?

He talked to her on the phone. After surgery she called him again all hysterical wanting to know if I was still alive and he spent some time explaining to her that everything was fine, even sending a pic to her of me smiling on the operating table.

I was the only one who needed to sign anything.

[alps]

But yea, he spoke to my mom before surgery,

this was really nice and ethical of him I'd say.

[Arch]

Your last x ray looked very promising tho.
It has been over a year and half, you should be able to do normal activities tho.
I hope its normal and you dont have CECS.

Try slowing things down and wait untill 2017

[EndGame]

Your legs look like you have some muscle not thin sticks like some people get at all. Always sucks when rehab takes a long time. I'm hoping that does not happen to me. I've enjoyed your diary. thanks for doing it! Good luck and hang in there.

[KiloKAHN]

Took another set of x-rays when I went to get checked out for CECS on August 22. Figured I'd post the images so you can see what the bones look like more than 2 years after the initial surgery.

[KiloKAHN]

For those telling others that my x-rays are proof that people should avoid Dr Parihar for CLL, what do you see is the issue with them? According to my US trained and based traumatologist, and multiple radiologists who reviewed my x-rays each time they were taken, my bones and alignment are fine.

The latest radiology report said the following:

No acute fracture is identified. The alignment is normal. Stable postsurgical changes are seen along the tibial shaft and fibular shaft related to previous limb lengthening procedures. Joint spaces are grossly intact.

If you're concerned over the fact that my tibias are not stick straight like a lot of other people's tibias, that's been addressed in an earlier post in the diary. It's a normal variation in the shape of the tibia shaft and when looking at my pre-op standing x-ray it's seen that they were shaped that way before surgery. It's because of this variation that some people are not suitable for LON and can only do externals.

[YourSpaceBoyfriend]

For those telling others that my x-rays are proof that people should avoid Dr Parihar for CLL, what do you see is the issue with them?

Someone actually did that?

Looks fine for me aswell.

[KiloKAHN]

Someone actually did that?

Looks fine for me aswell.

Yeah, someone's scaring people through PM over this latest batch it seems. Would prefer any concerns to be laid out in the open.

[Penguinn]

Must be the user calling him a novice cause he won't let patients do 25cm in one bone.

[onemorefoot]

It is envy, you are fine and you feel good, that is the prove.

[applesandoranges]

Thanks for sharing the x-ray pics. How is it walking, running, and moving around now? Would you say you are back to pre-LL levels in mobility? Are there any chronic aches?

[KiloKAHN]

Thanks for sharing the x-ray pics. How is it walking, running, and moving around now? Would you say you are back to pre-LL levels in mobility? Are there any chronic aches?

Walking and moving around are completely normal.

Running would feel normal now if it wasn't for the pressure that builds up. My ortho believes I need to do conditioning until January before he sends me to a foot and ankle specialist to test for CECS. But he said being in frames for so long would make it so my muscles aren't used to the impact that comes with running, so I need to try that out first before looking to correct it with surgery.

Other differences are:

1) Not as much ankle dorsiflexion as I had prior.

2) Whenever my legs fall asleep and I move them around to get the blood flowing again, my legs feel a lot heavier than they did before surgery, almost as if a weight were attached to them. I think it's because my shins are actually a little heavier due to being elongated and because my quad muscles are weaker.

[applesandoranges]

Awesome. The best diary I've read for tibias yet. Have you considered femurs in the beginning? If cost wasn't an issue, would you have done that instead?