Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Whereintheworld?]

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.

[BiggestProblem]

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.

[Whereintheworld?]

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.

[Whereintheworld?]

I'm interested in that information.

@BiggestProblem

I sent you a pm

[sashawiak]

Eager for an update. What does your daily routine normally consist of now that you're post-op?

[Whereintheworld?]

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.

[Whereintheworld?]

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.

[KrP1]

Does Dr.Pili do LON? Or only external?

[Whereintheworld?]

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

[Whereintheworld?]

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.

[onemorefoot]

Sent you  a PM

[onemorefoot]

wouldnt you wanted double osteotomy to make it faster or is very risky?

[Whereintheworld?]

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).

[randomguy]

@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.

[Whereintheworld?]

@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.

[Whimsical]

I know Dr Pili does externals and internals but does he do LON?

[onemorefoot]

Yes he does LON with monorials and the price is 37000 eur

[Whereintheworld?]

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.

[Whereintheworld?]

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.

[randomguy]

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?

[Zenithian]

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

[M]

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

[onemorefoot]

How often do you take a shower? Is it tough?

[Whereintheworld?]

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.

[Whereintheworld?]

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).

[Whereintheworld?]

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.

[Whereintheworld?]

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.

[onemorefoot]

Thanks

[Whereintheworld?]

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.

[Whereintheworld?]

Thanks

No problem

[Zenithian]

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)