Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: Whereintheworld? on June 25, 2016, 05:22:52 PM
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Hey everyone, I'm not usually a 'forum' type of guy but here I am, looking for both support and hopefully to help others if I can.
I'm American, mid 20's, and just returned to my apartment in Lecco after having surgery with Dr. Pili in Milan.
I should clarify- I had surgery on Thursday morning, stayed two nights in the hospital, and am now currently sitting on the bed that I occupied as an able-bodied person just a few days back.
I feel a little bit anxious at the moment, as I noticed a 'clicking' type of feeling below by knee at the top of the device- I'm worried I may have walked too aggressively with my crutches from the cab to the elevator, from the elevator to my front door.
I just emailed Dr. Pili, expressing my concerns, and am awaiting his reply.
***Here's my sob story...
Being short, you're never allowed to be the man you really are. Aside from the opportunities we are denied in this world due to our height(I'm 5'7), there have been countless opportunities (women,jobs,etc.) that I chose to walk away from because I could not handle the thought of further embarrassment. As I've read through the forum here (and the old one), I see that we all know these experiences: the disappointed expression of a girl you were sharing eye contact with before as she walks past you and sees your height: comparing your height to every other person you walk by in the streets--taking outrageous paths to make certain you don't have to pass a tall guy: just a general feeling of worthlessness.
Despite all of that, if I could go back in time to Thursday morning when I arrived at the hospital, I would turn around and book a ticket home. This is probably just the anxiety from the "clicking' I keep feeling but I'm kind of having a WTF moment. Too late though, I've got braces on my legs and even if I tell Dr. Pili to just take them off, I'm still looking at several months in casts.
Dr. Pili by the way is a very kind, straight forward man. He and his assistant have gone out of their ways to arrange things for my stay here.
I think I'm just going to chalk this up as a bad day.
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Be srtong man
Wish you best of luck
Did u do any reseaches before operation?
Then how did u know dr pili with out reseach?
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This WTF moment is normal from stories of patients I have spoken to. Stay strong and PATIENT!
Btw, how much you planned to lengthen before you got your frames on?
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Be srtong man
Wish you best of luck
Did u do any reseaches before operation?
Then how did u know dr pili with out reseach?
I appreciate it.
I've been lurking around this, and the old board, for years. I had narrowed it down to Pili and China, but decided on Pili after having a consultation with him a few months back.
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This WTF moment is normal from stories of patients I have spoken to. Stay strong and PATIENT!
Btw, how much you planned to lengthen before you got your frames on?
I had planned on 8 cm, but even before the surgery I had started to think that I would be satisfied with 4 cm.
Thanks for your words guys, they really do help.
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my advice to you is to set the goal high, and just stop when you think enough is enough proportionally speaking. Pain should not be a reason to stop because you dont want afterwards to regret not doing enough.
Btw I reside in Italy. If you wanna talk via whatssup, e-mail or skype let me know through pm
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I think you're right, I'll just play it by ear.
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Dr. Pili got back to me this morning-he assured me these 'clicking' feelings are quite normal and just to make sure the bolts on the device are kept tight.
-If you're not going to be staying in a clinic during your lengthening, you need to make certain you have thought everything out, in terms of what you will need in your apartment as well as the state you will be in after surgery. For example, I bought several cases of water before surgery, but had not thought of how I was going to access them afterwards. Eventually, I ended up balancing myself against a cabinet as I found a seat on top of an air conditioner next to the water. I was able to pull one out at a time and throw them across the room onto my bed. I would advice setting up 'stations' across your apartment prior to surgery to make things easier on yourself later on.
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I don't have much to add at this point, only that Dr. Pili has stopped by my apartment a couple of times, making sure I have what I need as well as introducing me to a man who will be 'supervising' my pin site cleanings for a while.
No pain as of yet and I'm set to start lengthening next week.
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how is your overall feeling? Did the "what the fk have I done" thought calmed down a bit?
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how is your overall feeling? Did the "what the fk have I done" thought calmed down a bit?
Definitely. When I got back from the hospital everything sort of hit me at once and I just panicked. I'm not sure if there's any way I could have prepared myself mentally- it might just be one of those things you have to get through. Still, it really helped to have a forum like this to come to.
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I started lengthening about a week ago at .75/day
Things were going pretty smooth, no pain, until yesterday afternoon when I stepped quite a bit harder than I meant to with my left foot. The pain came and left quickly but the muscle around my shin felt uncomfortable for the rest of the day.
Even now, I have a very slight throbbing pain that comes and goes located on either the osteotomy site or else a nearby screw (can't pinpoint it).
Aside from that, I'm doing pretty good.
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Hey Whereintheworld
You seems to be doing pretty well man!
I wish I had your straight and manage to have surgery like you did. I envy you for this.
Keep strong and keep us up to dated.
Pictures are welcome
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Dude, 5'7 to 5'10 is an awesome gain. All the best.
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Hey Whereintheworld
You seems to be doing pretty well man!
I wish I had your straight and manage to have surgery like you did. I envy you for this.
Keep strong and keep us up to dated.
Pictures are welcome
I heard about ll surgery ten years ago and it's only just now that I'm here. It takes time to line everything up.
Dude, 5'7 to 5'10 is an awesome gain. All the best.
I appreciate it-same to you.
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It's hard to believe but I'm already over 3 weeks post op, lengthening for about 11 days at .75mm.
I met with Dr. P today and went over my x-rays(he says they look good). He also gave me a thorough explanation as to what caused the 'pain' I felt when I stepped too hard with my foot last weekend.
No problems with the pin/screw sites with the exception being the fibula/tibia fix point, which is a little redder than the rest, but still ok.
Dr. Catagni was in the hospital as well and stopped by for a moment, telling me to bear in mind that I'm already 1/10 of the way done (8cm).
I have a pretty good setup here. My apartment is by no means large but it suits me well enough. The chef from the restaurant upstairs brings me lunch everyday and also stops by the grocery store for me if I need anything.
Still, it was nice to get out of the apartment today, even if it was only a cab ride to the hospital and back to my apartment.
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So you're looking at 107 days or so of lengthening, wow. Happy to hear the pain is manageable.
You guys that do external tibia are some brave souls...I know I could never do it.
Are you staying in frames until full consolidation?
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So you're looking at 107 days or so of lengthening, wow. Happy to hear the pain is manageable.
You guys that do external tibia are some brave souls...I know I could never do it.
Are you staying in frames until full consolidation?
Seems like a long time, I know, but the time I've been here so far has flown by.
Yea, the frames stay on until full consolidation, but a few of the pieces come out when lengthening is complete.
Dr. P said that for 8 cm, count on 10-12 months. It's all individual though.
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I've been lengthening now for almost 3 weeks and am a little over 1.5 cm.
For a couple of days I've experience a slight 'tingling' sensation on the ball of my foot when I start my knee exercises, but this goes away after bending my knee two or three times. Still no pain to speak of thank God, but I have pain killers ready to go if they're needed.
Aside from that, I'm going to start trying to limit myself to 2-3 hours a day on my computer, as I've been practically living on it up to now.
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Whereintheworld stay strong brother we believe in you . Take care my man ! your decision is right and atleast I am always there to support you I feel you !
TC
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Whereintheworld stay strong brother we believe in you . Take care my man ! your decision is right and atleast I am always there to support you I feel you !
TC
Thanks a lot Max
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From what I've read, sleep seems to be a problem regardless of which doctor/method one chooses. While I've been getting in 6-8 hours every night, I've yet to come by more than 3 in a given block- most nights consist of several 1 and 2 hour naps. As I've mentioned, pain has not been an issue for me, so I'm not exactly sure what is causing the problem. Sitting here at 4am, I think that I'm going to abandon my traditional sleep schedule and instead just sleep whenever I feel the need, be it morning, afternoon, or night.
I suppose I could ask my doctor for sleeping pills but I'd rather go through this whole process as 'naturally' as I can.
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At the end of today I will have reached nearly 2.8 cm after 37 days of lengthening. Time is going by very quickly but still, not quickly enough.
I just returned from meeting with Dr. Pili who told me that my x-rays look good on the whole, but did mention that my right leg has a slight curvature that may indicate future bending (so minimal at the moment that it does not require correction) and that I have slightly less callus formation (though still within normal range) in the front of my bones.
While neither one is yet an 'issue', he said we'll keep a close eye on both.
In the years leading up to this, I was of the mindset that I was going to lengthen as much as possible and what's more, I thought people who did 6.5cm or less were foolish. Though now that I'm here, I would actually be satisfied with 5cm (turning 6cm so as to assure a legitimate 5cm gain). Whether or not this will come to pass I can't say- I've not had any pain or tightness so far but I'm a little nervous now that I'm at the 3cm mark. Dr. Pili has several patients who go well beyond 6 cm, but the majority required achilles lengthening, which I really don't want to do. Still, if I get stuck at 4 cm, I'll probably go through with it.
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It's been a while since I've updated so here goes...
I reached 5.4 cm during the middle of September, took a week off, then turned to 6.4.
Since I decided to stop, Dr. Pili told me to work on my dorsiflexion during the next two weeks and see him afterwards to determine whether or not we'll do achilles lengthening (no pain or ballerina foot exactly, but I'm stiff). He says chances are that physical therapy will be enough, but we'll see.
Up to this point I still haven't experienced the pain that is suppose to come with tibia lengthening (although Dr. Pili told me that I'll be in for a rough two weeks should we proceed with the achilles lengthening), but once or twice a month I'll have a wire bother me for a few days.
I'll let you guys know how it turns out.
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Seems like a long time, I know, but the time I've been here so far has flown by.
Yea, the frames stay on until full consolidation, but a few of the pieces come out when lengthening is complete.
Dr. P said that for 8 cm, count on 10-12 months. It's all individual though.
10-12 months for full recovery or walking normal?
wish you the best......,
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Thanks Kaiser.
I'm not exactly sure, I assume walking normal since the rule of them is 10-12 months in frames for 8cm, so it'd probably be a little longer past that before you're back to 'full recovery'.
There are a couple of Pili/Catagni patients on the old forum-
one did around 6.5 and was in was in frames 8 months total, while another did 9 cm at roughly 11 months.
Since I've been here, there was yet another patient who did 7 cm and was in frames for 7 months - his was an exceptionally rare case though.
I like to plan for worst case scenario (barring the terrible), so I'm looking at a May/June removal.
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Thanks Kaiser.
I'm not exactly sure, I assume walking normal since the rule of them is 10-12 months in frames for 8cm, so it'd probably be a little longer past that before you're back to 'full recovery'.
There are a couple of Pili/Catagni patients on the old forum-
one did around 6.5 and was in was in frames 8 months total, while another did 9 cm at roughly 11 months.
Since I've been here, there was yet another patient who did 7 cm and was in frames for 7 months - his was an exceptionally rare case though.
I like to plan for worst case scenario (barring the terrible), so I'm looking at a May/June removal.
what method did Dr Pili use with you?
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Awesome diary! Would you be able to share the cost of the procedure?
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what method did Dr Pili use with you?
It's a hybrid external device, about 7 or 8 inches in diameter
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Awesome diary! Would you be able to share the cost of the procedure?
It's roughly 20k Euro for the initial surgery- roughly because the Hospital price may fluctuate a few hundred euro.
You'll also need to factor in a few thousand for removal and achilles lengthening (if you need it).
Dr. Pili can give you exact figures- he usually responds pretty quickly
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Hey Whereintheworld, I'm glad things are going good for you. I plan on going to Dr. Pili and plan on lengthening around the same length as you. From everything I've read I think he's a really good doctor with a reasonable price.
If you don't mind me asking are you staying by yourself throughout the whole thing? Do you plan on staying in Italy until frame removal?
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Hey Zeo,
I've been staying by myself so far (almost 4 months), but I've had help. Dr. Pili's assistant gave me a variety of different apartment options and offered to set up a grocery delivery service for me. I ultimately didn't go that route, but if you want I can send you a pm detailing the specifics so you can have an idea of what you might be looking at cost wise (groceries,help,etc.).
As far as staying here all the way through, I'm not sure. I was actually going to leave in a few days but have decided to stay longer since I might need achilles lengthening. If it gets to that point, I might just stick it out here.
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Hey Zeo,
I've been staying by myself so far (almost 4 months), but I've had help. Dr. Pili's assistant gave me a variety of different apartment options and offered to set up a grocery delivery service for me. I ultimately didn't go that route, but if you want I can send you a pm detailing the specifics so you can have an idea of what you might be looking at cost wise (groceries,help,etc.).
As far as staying here all the way through, I'm not sure. I was actually going to leave in a few days but have decided to stay longer since I might need achilles lengthening. If it gets to that point, I might just stick it out here.
I'm interested in that information.
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Update
I met with Dr. Pili today and the good news is that I do not need to have achilles lengthening surgery. As an added bonus, he took out some of the wires.
Although the x-rays looked fine to me, he spent about 20 minutes measuring and adjusting to make sure the alignment was absolutely perfect. We'll meet again in two weeks time so he can tweak it a little more yet and then we'll check the alignment once more a week or two past then just to be certain. As a patient, I really appreciate how thorough he is.
I'll also add that many of the ilizarov diaries I've read mention how their gains are much less than what they turned. For example, if they turned 7cm on their device, they actually only gain around 5.5.
The HEF device is far more accurate, I turned 6.4cm and gained 6.
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I'm interested in that information.
@BiggestProblem
I sent you a pm
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Eager for an update. What does your daily routine normally consist of now that you're post-op?
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Since about a week post lengthening, I've felt my strength slowly returning.
Dr. Pili told me I could start working towards walking unaided, so I've been trying to minimize the amount of weight I put on my crutches, using them more for balance. I've been getting out of my apartment a little more often as well, checking out for the first time parts of the neighborhood I've been living in for several months.
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Quick Update-
I had the last wires removed today and can really feel a difference in my legs.
I guess this is the home stretch.
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Does Dr.Pili do LON? Or only external?
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Does Dr.Pili do LON? Or only external?
I think he's mentioned that he does internals as well, but I've never really discussed it with him.
The info page on this site lists him for - intramedullary (internal) nail Precice I/II or ISKD and External Hybrid
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Update
I stopped turning about 6 weeks ago (at the moment I am a few days short of 5 months post op) and have started walking without crutches.
About a week ago I started taking long walks (3-4 km WITH CRUTCHES) around town and back to my apartment. A couple days ago, I started walking around my apartment with the crutches dangling at my side. Today, I was able to walk around the grocery store unassisted.
I'll post another update when I have something worth mentioning.
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Sent you a PM
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wouldnt you wanted double osteotomy to make it faster or is very risky?
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The doctor mentioned the double osteotomy but said the single was better (I forget the exact reasons he gave me).
While doing the double may have saved me a month, I'm satisfied with the recovery rate I'm currently at as I'm about 5 months post op and have been walking unassisted for a few days now(although I keep a crutch with me just in case).
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@Whereintheworld?
Sorry if I missed something but do Pili and Catagni operate together? I contacted Catagni by email a week ago but no response. Now thinking of sending the same email to Pili.
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@Whereintheworld?
Sorry if I missed something but do Pili and Catagni operate together? I contacted Catagni by email a week ago but no response. Now thinking of sending the same email to Pili.
Yes, they usually do operate together. In fact, during most of my postop check ups , both doctors were there as well.
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I know Dr Pili does externals and internals but does he do LON?
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Yes he does LON with monorials and the price is 37000 eur
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Update
So, I've been walking unassisted now for almost 5 weeks and I've seen major improvement during the last 2 (walking much more smoothly). When I first stand up after sitting down for a while things are a little stiff, but quickly loosen up once I take a few steps.
The most painful part of this whole experience was during the first couple of weeks after I started walking unassisted, as my feet were extremely sore afterwards and would remain so for a couple of hours. I think this pain was more than likely the result of my muscles not being used for so long. While I did make it a point to stretch and walk during lengthening, it was not until about the 3.5 cm mark that I was serious about it. I'm having x-rays done next week and will update again once the doctor tells me what he thinks.
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Just got back from meeting with Dr. Pili. My left leg has consolidated to the point where I can have the frame removed, while the right leg needs a few more weeks to be on the safe side. The plan is for removal next month, which will be a little under 8 months (6cm) post op and about 4 months into consolidation. Of course, I'll take another x-ray before surgery so it's possible removal may be postponed.
My walking is normal in appearance(once I get going), but I would rate it at about 75% because I'm still a little stiff when walking on uneven surfaces and walking down stairs (up is no problem) is still difficult.
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Hey Whereintheworld?. Good to hear you're doing well!
I have a few more questions to you:
Have you stayed in Lecco all this time?
How did you cope with loneliness? Have you met any other LLers? Did you live by yourself?
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Good work so far sir,
I have some questions too.
As I am an American also, I'd like to know some more about your experience getting a visa.
What kind of visa is it? Tourist, Business, student, schengen?
I've emailed the team of Pili but they have not responded on this point, only giving me a link to find out on my own. I'm just curious about your experience.
Thanks
-zen
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Whereintheworld?,
Thanks for this great diary. I am interested in using the HEF also. Can I ask ... did you experience any pin tract or wire infections during your several months in the frames?
Best to you,
M
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How often do you take a shower? Is it tough?
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Hey Whereintheworld?. Good to hear you're doing well!
I have a few more questions to you:
Have you stayed in Lecco all this time?
How did you cope with loneliness? Have you met any other LLers? Did you live by yourself?
Thank you.
Yes, I lived in Lecco the entire time. When I took all things into consideration, it just seemed easier to stay until the process was finished. Loneliness was not too much of an issue as every day I would have someone bring me food or drop off a few groceries, so it was not total isolation. Plus, the internet really helps a lot in this regard.
I did not meet any other patients, although I saw a few outside of the doctors office a few times when I went for an appointment.
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Good work so far sir,
I have some questions too.
As I am an American also, I'd like to know some more about your experience getting a visa.
What kind of visa is it? Tourist, Business, student, schengen?
I've emailed the team of Pili but they have not responded on this point, only giving me a link to find out on my own. I'm just curious about your experience.
Thanks
-zen
I appreciate it.
As an American, you're allowed a 3 month visa free visit. During this time you can file for an extension with the local police department. As easy as it would have been to do this, I never did (I simply forgot). I'm leaving tomorrow and am hoping for an indifferent customs officer at the airport, although with all of the immigration problems they have here at the moment, I don' think they'll care about me anyway(I'll post how it turns out).
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Whereintheworld?,
Thanks for this great diary. I am interested in using the HEF also. Can I ask ... did you experience any pin tract or wire infections during your several months in the frames?
Best to you,
M
Thank you.
During lengthening, I had the sites cleaned every 4 days (3 days in between).
I paid another, separate doctor who actually ended up being my friend, so I don't regret it at all, but you can actually do it yourself if you want to. It may vary with other devices, but with the HEF I would-
-Rub some peroxide around each site
-Rub the disinfectant
-Apply new gauze
The doctor told me at the beginning that I would more than likely get at least one infection- I never did. However, the screw on each leg that went into the 'meatier' part of the leg both flared up once or twice. When this happened, I was instructed to clean those particular sites every other day for a week. After doing this they went back to normal, although they were still a little 'uglier' than the other sites. The pin sites (I may be wrong on my wording, but when I say pin sites I mean the skinny rods that go through to fix the fibula in place, while I say 'screws' to refer to the actual screws/bolts) would occasionally become a little irritated as well, but would return to normal after a few days. This irritation was usually related to the skin around them being tugged too roughly one way or the other.
***If you decide to clean them yourself, I would recommend someone doing it for you the first couple of times to put you at ease. It's not complicated, but can seem a little intimidating when you first start.
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How often do you take a shower? Is it tough?
After the first two weeks, I would shower every day.
At the beginning, I would remove the gauze from the pin/screw sites and sit on a plastic chair (make sure it is VERY STURDY!!!). Afterwards, you do not need to do a 'full cleaning' but just squirt peroxide on each site once they have dried.
Occasionally I would get lazy and just wash from the waist up so I didn't get my legs wet.
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Thanks
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Update (Long Post)
So, the doctors asked me not to mention how early they removed my frames because other patients may read this and insist that their frames should removed early as well. However, I had already posted last month before they asked me not to, so I will not 'officially' say when my frames were removed but will only say that everyone is different. There are cases on this forum of people who have run into major problems because their frames were removed too early and/or they did not listen to their doctors. With all external devices (even HEF), you're signing up for the better part of a year, so do not assume you will get lucky. Your doctor takes no pleasure in having you in frames, he is in fact keeping you in them to make sure you are safe and reach full recovery.
LISTEN TO YOUR DOCTOR!!!
My frames were removed and I had to wear shin guards (like those used in soccer/football) for 3 weeks. I also had to start using crutches again. This period was probably the most difficult of the entire process. I had been walking unassisted for nearly 3 months, so it was difficult (mentally) to go back to crutches again. However, the time flew by and I met with my doctor this week who gave me the green light.
The doctor said my consolidation was unbelievable, in the top 5% of what he has seen. Much of this may have been genetic, but I will say that the doctor gave me two major instructions when I stopped lengthening.
1. Walk, walk, walk (I did, about 3-5 km everyday)
2. Eat yogurt/ calcium foods (Every day I drank 1 Liter of milk AND ate 500 grams of yogurt)
Again, I'm not sure if this made the difference or not, but I think it definitely helped.
To conclude this post, understand that with external devices you may be in frames for 1 year. Prior to surgery, the doctor told me that it would be anywhere from 9-10 months before my frames would be removed (this is the case with 90% of people).
I got lucky, it's as simple as that. Do not go into this hoping for the best, be mentally/financially prepared for a year.
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Thanks
No problem
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Thank you for the great advice.
So you gained 6 cm in total, and went from about 5' 7" to 5' 9.5" I think?
please if you have any photos, (legs, before/after, frames, apartment, anything you feel comfortable sharing) :)
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Your diary is really inspiring!
Do you think your success is due to Pili's HEF method? It seems most people having LL with HEF get the best results.
Did you drink milk and yogurt just for consolidation or also during lengthening?
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What was the cost of the apartment in Lecco?
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Does anyone know what happened to this guy ?
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Hey everyone, I'm not usually a 'forum' type of guy but here I am, looking for both support and hopefully to help others if I can.
***Here's my sob story...
Being short, you're never allowed to be the man you really are. Aside from the opportunities we are denied in this world due to our height(I'm 5'7), there have been countless opportunities (women,jobs,etc.) that I chose to walk away from because I could not handle the thought of further embarrassment. As I've read through the forum here (and the old one), I see that we all know these experiences: the disappointed expression of a girl you were sharing eye contact with before as she walks past you and sees your height: comparing your height to every other person you walk by in the streets--taking outrageous paths to make certain you don't have to pass a tall guy: just a general feeling of worthlessness.
Dr. Pili by the way is a very kind, straight forward man. He and his assistant have gone out of their ways to arrange things for my stay here.
I think I'm just going to chalk this up as a bad day.
Didn't expect 5'7 to be that bad in the US. Well, depending on the area. But it's been a long time, and I hope everything has changed for the better for you now.
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Damn he seemed to do fine, I wonder how is it going for him today :)
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Hey man, how are you doing nowadays? It always worries me to see people just hop off their diaries near the home stretch. As someone who's considering LL with Dr. Pili, I'd love to know how you're doing now almost a year and a half getting your frames removed. Hope you're doing well and are happy with your new height :)
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Are you serious you think 5'7 Is bad? its not at all. Its a great height. You are probably around very shallow people. But its not like five one etc. If you walk away from jobs ...its your fault. People who are way below 5'7 don't even get the opportunity in the first place.