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[insearchofanswers]

You said you used to do gymnastics. Were you flexible before that due to your EDS? Does EDS benefit in fact people doing LL?

[Unicorn888 by Elaine Foo]

You said you used to do gymnastics. Were you flexible before that due to your EDS? Does EDS benefit in fact people doing LL?

Yeah, it's a cause and effect.  I did gymnastics because I found it easy, and it was easy because in fact, I had hypermobility issues.  I found that out later in life when I saw doctors for loose joints and double jointedness.

So yes, according to my osteopath and Guichet, it helps that I am hypermobile because I don't suffer from tissue stretching pains, I am able to recover my flexibility in knee/hip extensions/flexions and finally, it prevents me from duck ass because I'm more flexible.

[insearchofanswers]

EDS is good then

[Lubak]

I hope everything is going well for you Unicorn. I know you are busy and trying to heal so when you have a moment please respond. 

I'm trying to figure out how much money I need to have saved for surgery with Dr. Guichet. I keep coming up with the figure of $90,000+ U.S. Dollars. Im basing this a lot on what you said plus my own calculations. 

I would say at least 65,000 euros for the surgery + post-op PT + Guichet time, EXCLUDING all I had listed before.

Expect to pay between £500-1,000 per week for a helper.

-  Blood tests (serology, coagulation, blood group, blood count, ESR, CRP, liver tests, CTX, Alc Phosphatases £180/NHS)
-  Pre-op cardiological ECG report (NHS)
-  Pre-op dental report (£60)
-  Bone densitometry (full body, hip and spine) £450
-  EOS 3D Body xray (anterior-posterior, lower limbs) £330
-  Psychiatric consultation (1hr) £350
-  Daily supplements of folic acid and ferrous sulphate
-  Motivation essay (yes!)
-  Surgery understanding questionnaire (where he asks me to lists all the possible complications/risks by each category like bone, venal, arterial, tendon, ligament, muscular, blood, possible infections, scarring, limping, amputation, septicaemia, bone grafting, non-consolidation...etc.  It was like studying for my driver's license albeit for a guaranteed car crash/hospitalisation/rehab!!!)
-  Daily 2hr personal training (1hr cardio, 1hr alternate upper body and lower body muscle training)
-  Daily practice usage of crutches £36

So as of today....

65,000 Euros = $70,500 U.S. Dollars for Surgery+PT+Check Ups
500-1,000 British Pounds = $630-1,250 U.S. Dollars Per Week for a helper

If I stay in London for 3-4 months (12-16 weeks) thats an extra $7,000-$15,000 U.S. Dollars for a helper on top of the $70,500 U.S. Dollars for surgery and PT.

This is where I really would like your input. How much more money should I factor in for accommodation, food, transportation, medication, and other miscellaneous items for 3-4 months living in London?

[Whimsical]

I would choose Guichet in Milan. I think it's expensive but less expensive than London. Can anybody confirm please?

[apoxyomenos]

After 2 years you should also consider the costs for nails removal. How much is this nowadays Unicorns?

[apoxyomenos]

In the old forum, at the end of the diary of Adidas2001 who lengthened 7cm with dr. Guichet, it's reported that the cost for nails removal is 13k-15k Euro. Is this cost still the same?

[YourSpaceBoyfriend]

In the old forum, at the end of the diary of Adidas2001 who lengthened 7cm with dr. Guichet, it's reported that the cost for nails removal is 13k-15k Euro. Is this cost still the same?

Are you serious?

[apoxyomenos]

Yes I'm serious and curious to know the updated price

[YourSpaceBoyfriend]

I know Paley charges like 15k usd for nail removal but damn... like they aren't expensive enough.

[apoxyomenos]

Yeah YourSpaceBoyfriend, it seems like that some doctors, when they meet you, have a sort glitter in their eyes, and if you come close to that glitter there are perhaps probabilities that you could glimpse a shape of a cash cow reflected. But this is the way it is.

[Whimsical]

LOL

[Unicorn888 by Elaine Foo]

After 2 years you should also consider the costs for nails removal. How much is this nowadays Unicorns?

LOL We don't know, I think it's between £7k to £10k

[Unicorn888 by Elaine Foo]

I would choose Guichet in Milan. I think it's expensive but less expensive than London. Can anybody confirm please?

Yes, that's right!  London is just MAD EXPENSIVE in every way from accommodation, food, transport, xrays, carer etc.  I think while Milan is not English speaking, it'll be cheaper in the long run.  Guichet is planning to live in London permanently from January onwards   So he does plan to set up base in London over time and the hospital where he is at, Princess Grace, is one of the best.

[Unicorn888 by Elaine Foo]

I hope everything is going well for you Unicorn. I know you are busy and trying to heal so when you have a moment please respond. 

I'm trying to figure out how much money I need to have saved for surgery with Dr. Guichet. I keep coming up with the figure of $90,000+ U.S. Dollars. Im basing this a lot on what you said plus my own calculations. 

So as of today....

65,000 Euros = $70,500 U.S. Dollars for Surgery+PT+Check Ups
500-1,000 British Pounds = $630-1,250 U.S. Dollars Per Week for a helper

If I stay in London for 3-4 months (12-16 weeks) thats an extra $7,000-$15,000 U.S. Dollars for a helper on top of the $70,500 U.S. Dollars for surgery and PT.

This is where I really would like your input. How much more money should I factor in for accommodation, food, transportation, medication, and other miscellaneous items for 3-4 months living in London?

Hi there,

Yes, lemme try to do the math as closely as possible. 

£55k for Guichet surgery, deposit, pre-op training and pre-op tests (if he doesn't change prices in 2017 that is)
£6k (£2k min per month) for 3 months' accommodation
£5k for transport, food, post-op tests, supplements and supplies (you'll be using Amazon a lot)
£1k for 2-3 first weeks' carer (should be enough)
Flight tickets

To save more money, come only 2 weeks before your surgery and do all your training and tests in your home town.  You'll undoubtedly run into some compliance issues with Guichet since he's such a stickler for standardized everything but you'll save a bit there from coming later.

Most overseas people come 1 month before to do pre-op training and all their tests with Guichet.  But that really adds up.  Also, if you live closer to the gym and Harley St, you'll save more on transportation (but that's central London and it can get very expensive).  There's a hotel on top of the gym called St Giles Hotel on Great Russell Street, it's £99 rack rate but if you can strike a deal with them for about 2 months, you might get away with saving on transport and possible food too if board can be included   And you'll be less stressed out about getting to the gym every morning in office traffic.  Living a little far away could add £50 to your taxi fare each day due to the traffic)

So $90k should be way adequate, that is without any complications and further surgeries like grand old me    Let me know if I can help you fine tune your costs better, ok?

[Lubak]

£55k for Guichet surgery, deposit, pre-op training and pre-op tests (if he doesn't change prices in 2017 that is)
£6k (£2k min per month) for 3 months' accommodation
£5k for transport, food, post-op tests, supplements and supplies (you'll be using Amazon a lot)
£1k for 2-3 first weeks' carer (should be enough)
£7k to £10k nail removal

Thank you so much for breaking this down Unicorn! I hope Guichet doesn't increase his prices in 2017!

£75,000-£77,000 British Pounds = $94,000-$96,500 U.S. Dollars

I'm going to focus on having at least $100,000 U.S. Dollars just to be safe!

[Annalisa]

Hi, Unicorn. You have not been written for a while now, I was wondering if you're well. Hope you are. Write some updates when you can. Happy new year.

[alps]

+1. Where are you Unicorn888?

[assa13ssin]

hello unicorn!

are you ok??
did you finish your other leg??

[helloworld]

Hello Unicorn,
I loved reading your diary, as your writing style makes it informative and fun.
Now, me and many other readers are concerned about your state of health, as the latest news was not too positive and you have not been writing much lately :-)

[Unicorn888 by Elaine Foo]

Hi everyone,

Apologies for the disappearance.  I couldn't log into the site as I was banned indefinitely 
Must be caches & cookies I've not managed to clear, manage, bake, eat etc etc etc

Now back to business...  yes, I was trying to convince Dr. G to operate on me in late November before I left for vacation but he was adamant.  "Non!  Your bonz are not sthrong enuff!!!" 

In fact, I didn't have any bones.  My left fractured leg is fully healed but my right lengthened leg has zero bones.  Nothing, not even calluses.  Apparently whatever I had before, had receded.  It's like my bone army leapt out to build a bridge, realised it's over 7.5cm long and decided to call it a day.  You lazy bonz!!!

He says it's extremely rare for someone to have one leg that heals and another that doesn't.  He's only had one other patient who suffered the same symptom (and that patient was taking anti-inflammatories in secret).  My only conclusion is I only use my left leg, all the time and the right leg, well it's a bit too long to be useful, really.  Ironic, isn't it?  It feels like being a pole jumper on one leg, hence, leg to be avoided at all times.

So off I went on a 5-week vacation by the beach.  I was determined... I'll walk 2 hours per day on my boneless right leg on the beach and grow bones etc etc etc....  Well...  my daily routine ended up looking like breakfast in bed, lunch in bed and dinner in bed, almost. 

Except for the trips to the shopping mall (YEE HAH!) and restaurants.  I even managed to go to a local hospital with the nicest modern facilities to do my monthly X-rays for 1/10th the price of London.  This set of X-rays now show that my right leg is growing bones again.  Yippee, a little retail therapy does go a loooooong way... 

I (being the pro cripple now) can safely conclude that we have to use our legs, add pressure or stress them to grow bones (Guichet's theory as well).  Being an experienced cripple now, I'm the first to slash tyres and burn cars should anyone dare violate a handicap parking, in my presence.  I'm now the self appointed ayatollah to handicap facilities around the world.  I don't hesitate to come bearing down on you with my 2-ton crutches, hell hath no fury... I shall defend the weak and the immobile... until I grow taller.

I've since been in touch with Guichet and he says he can operate on me first week of February.  Apparently, it's an outpatient procedure.  He's going to remove my left leg rod, reset, re-insert.  My right leg, he's contemplating extracting some marrow from moi, and violently injecting it into my right leg (kinda being violated by a staple gun maybe???).  He says that will stir up new healing and for soft tissue, veins, to reconnect.  He thinks non-fusion can happen when one lengthens too fast and the ends of my bones are no longer active in trying to join.  Maybe I've to bribe my bones £60k?  That's a good motivator, right?

So there's where I am.  Taking all the same supplements and more.  I'm still not resigned or depressed because here's a little dirty secret...  I've clicked (BY ACCIDENT) over 3mm since I stopped lengthening (it's like 45x since mid September - I plead not guilty, your honour!).  So I actually made it to 5'6" and foolhardy as I am, I'm still living the dream.  Please note, DO NOT ATTEMPT THIS AT HOME...  I click by accident because I'm overly flexible, don't click without your doc's supervision.

My other conclusion (girls, listen up!) is girls tend to heal much slower, especially older hens like me (missing steroids, testosterone, essentially all the guy stuff...).  Guys and those under 20 tend to heal overly fast, to the point of excruciating consolidation.  Whereas my lengthening, while painless in the process, was also not generating cells fast enough.

That said, I did see friends and family.  HAHA.  My mum & dad's like, why are you so tall (suspicious)...  No mum, it's your osteoporosis... you're shrinking with age, better take some glucosamine... come come!  Let's go to the pharmacy..."  PHEW!  Close call!

My friends didn't let me off that easily...  everyone started measuring themselves to me, yikes...  so I came up with a new disease... bow legged in the thighs...  I had it straightened out and gained 6cm.  Everyone's like...  really?  I didn't know that... HEE HEE!

I'll keep you guys posted when I'm closer to my surgery date.  In the meantime, lots and lots of good news, I'll report all as they're confirmed, ok?  Can't wait to enjoy 2017!

And yes, I can get up, walk around without crutches now...  but like a zombie, because one little pig has been too lazy to go to physio or work her glutes.  But hey!  I'm a pre-menopausal candidate, nobody's perfect, eh?

xoxoxoxo

[fujitora]

Thanks for posting this update. You are so resilient and optimistic !!! I wish I could borrow some. I hope you have a much safer second phase of this journey.

[Antonio]

Happy to hear you are OK. Stay positive

[TIBIKE200]

So you have non union and need to do a bone graft... Hows that good news?

[helloworld]

Thanks for the detailed update!
Stay strong!

About increasing testoterone,you could ask your doctor about Clomid:

[Unicorn888 by Elaine Foo]

So you have non union and need to do a bone graft... Hows that good news?

Niiiiiiice!  Let's bash 'em while they're down, why don't you?

[Auron]

Niiiiiiice!  Let's bash 'em while they're down, why don't you?

Just ignore him like most of us all do.

It's great to see you posting again, I was worried for a while. Get your bone army back to work so you can finally enjoy your new height 

[TIBIKE200]

Niiiiiiice!  Let's bash 'em while they're down, why don't you?

 bashing? You said you have non union and you might need a bone graft. How's stating my opinion about having what's considered a complication bashing? Should I tell you I am happy for you for suffering a non union that could potentially result in the loss of some of the height you gained? Should I clap for you for this? I am sorry that unlike the monegal patients (at least the new duo) I am not overly enthusiastic for having a complication.

 anyway, hope you will get better.

[RealTrump]

bashing? You said you have non union and you might need a bone graft. How's stating my opinion about having what's considered a complication bashing? Should I tell you I am happy for you for suffering a non union that could potentially result in the loss of some of the height you gained? Should I clap for you for this? I am sorry that unlike the monegal patients (at least the new duo) I am not overly enthusiastic for having a complication.

 anyway, hope you will get better.

This guy TIBIKE200 is still here? I thought he made some fake user with fake story to convince himself that doing LL was a bad idea. Zero credibility whatsoever, in addition to being a know it all pseudo medical student.

[YourSpaceBoyfriend]

Just ignore him like most of us all.

This guy TIBIKE200 is still here? I thought he made some fake user with fake story to convince himself that doing LL was a bad idea. Zero credibility whatsoever, in addition to being a know it all pseudo medical student.

Wohoho, someone is upset awww.

Good to finally hear from you, i guess being 5'5 now is dope af.
I hope you will get your leg fixed asap, cheers.

[Unicorn888 by Elaine Foo]

bashing? You said you have non union and you might need a bone graft. How's stating my opinion about having what's considered a complication bashing? Should I tell you I am happy for you for suffering a non union that could potentially result in the loss of some of the height you gained? Should I clap for you for this? I am sorry that unlike the monegal patients (at least the new duo) I am not overly enthusiastic for having a complication.

 anyway, hope you will get better.

Wow!  "...could result in loss of height that you gained"
REALLY?   I'm not even undergoing a bone graft, how did you decide that for me?

Making fear mongering comments to people who are struggling to heal and make the best of their situation - is just a new LOW.

It is because of people like YOU that real folks who brave and survive this procedure SHY AWAY from sharing their experiences and help others on this forum.  Real shame.