paley institute's costs. is it way more than written?

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i am intending to discuss about costs of potential complications from LL and you are stuck with my personal initial estimate. my circumstances are different from yours. fine, assume i will manage everything in $10k on top of the operation.

and 4% is not high in itself, but you have to magnify it according to the outcome. is there a 4% risk of having complications and being unable to pay for it? would that mean you end up disabled? that is high risk. that is different from a 4% risk of losing a game of tennis with your friend in which case you have nothing much to lose.

you will walk on your legs every single day of the rest of your life. anything that doesn't go well, you live with for the rest of your life. there is way too much at stake.

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Quote from: fivetenneeded2016 on May 29, 2018, 07:16:15 PMUnicorn and MasterHY were special cases. Both were old, no offense(late 30s). The complications were not dealt with well, correct. But Dr Betz has the most number of diaries and Guichet after him(check on old forum) and most of them did well, if they did their femurs atleast. Assuming there were so many Dr M/Parihar diaries we would definitely have some bad cases too. Every doctor's(assuming he has more than 10-20 diaries, most have just 1 or 2) statistics have a few outliers, but here on the forum, it is those outliers that decide the doctors skills :/. Most docs have just one or two diaries which turn out good and they drift turns towards them -__- or some new doc with better offer without any diaries and people go like "yes the greek doc is the next paley" LOL
Besides most f**k up happen under a good doc when:
1. the patient discontinues the treatment with a doctor and pursues another alternative doc due to trust/money issues.
2. patient not listening carefully to the doc
3. patient not too fit(age/genetics) etc. Some of it is unpredictable.

Besides skill wise, I see most Guichet/Betz patients do fine an year(No X-Legs, people can run or jog at least) post op after lengthening good amounts. Their oesteotomies are near perfect.

No one would look at constantines results or LLsouthamericas. Coz they are not the majority of their patients .

With so much stories, I really feel if Monegal/Sarin is that bad, or its just the forum playing its wave. :PDITTO! BULLS EYE

Dude, I know for a fact that Betz had a lot of bad cases. His worst cases were tibia patients who had compartment syndromes and permanent nerve damage. That's besides all the other problems which are well known here.MasterHY stands out only because he is probably dead.
As a general advice I would only recommend doctors who use Precice. Why? Because it is now the only standardized method. The doctors don't need to bring their own "creativity". With Precice they have to follow the manufacturer's instructions.

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Which hotel do you have in mind? I thought these look pretty good and affordable.

https://www.booking.com/hotel/us/hampton-inn-west-palm-beach-central-airport.en-gb.html?aid=304142&label=gen173nr-1FCAEoggJCAlhYSDNYBGhoiAEBmAEuuAEGyAEV2AEB6AEB-AELkgIBeagCAw&sid=b00969a28cd3c393e275fdde786b89dd&checkin=2018-09-03&checkout=2018-09-04&ucfs=1&srpvid=80418433cf7503ae&srepoch=1527792489&highlighted_blocks=4408414_105812863_2_1_0&all_sr_blocks=4408414_105812863_2_1_0&bshb=2&room1=A,A&nflt=pri%3D2&hpos=1&hapos=1&dest_type=city&dest_id=20024490&srfid=45744c0cf2e196f5c872b81a2162c6549839cb36X1&from=searchresults;highlight_room=#hotelTmpl

https://www.booking.com/hotel/us/comfort-inn-amp-suites-lantana.en-gb.html?aid=304142&label=gen173nr-1FCAEoggJCAlhYSDNYBGhoiAEBmAEuuAEGyAEV2AEB6AEB-AELkgIBeagCAw&sid=b00969a28cd3c393e275fdde786b89dd&checkin=2018-09-03&checkout=2018-09-04&ucfs=1&aer=1&srpvid=80418433cf7503ae&srepoch=1527792489&highlighted_blocks=45730201_94469983_2_1_0&all_sr_blocks=45730201_94469983_2_1_0&bshb=2&room1=A,A&nflt=pri%3D2&hpos=24&hapos=24&dest_type=city&dest_id=20024490&srfid=45744c0cf2e196f5c872b81a2162c6549839cb36X24&from=searchresults;highlight_room=;spdest=;spdist=15.9#hotelTmpl

https://www.booking.com/hotel/us/days-inn-west-palm-beach.en-gb.html?aid=304142&label=gen173nr-1FCAEoggJCAlhYSDNYBGhoiAEBmAEuuAEGyAEV2AEB6AEB-AELkgIBeagCAw&sid=b00969a28cd3c393e275fdde786b89dd&checkin=2018-09-03&checkout=2018-09-04&ucfs=1&srpvid=e0208424672300e2&srepoch=1527792458&highlighted_blocks=28875110_118491776_2_0_0&all_sr_blocks=28875110_118491776_2_0_0&bshb=2&room1=A,A&hpos=1&hapos=1&dest_type=city&dest_id=20024490&srfid=3e41ae3ed14264d0adf89ad42d98bf09db5f4a66X1&from=searchresults;highlight_room=#hotelTmpl

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i am looking at homewood suites because they get a lot of LL patients. i can meet other patients and i get free shuttle service to and from physical therapy and check-ups.

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Quote from: fokid on May 31, 2018, 07:14:22 PMi am looking at homewood suites because they get a lot of LL patients. i can meet other patients and i get free shuttle service to and from physical therapy and check-ups.

Isn't that like USD150/night? Who recommended you?

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Quote from: fokid on May 30, 2018, 12:27:43 PManyway, we digress. my point of this thread was to think about how much complications might cost and whether we should just believe dr paley's 'keep $30k extra for complications' advice.

fokid, you're better off discussing this over e-mail/in consultation with Paley.

Numerous complications can occur from CLL, but the incidence and the types of complications should vary by doctor. Paley should be able to tell you what those complications are, how many times he had to deal with them, the level of incidence under his team, and estimate a cost for their treatment. You could probably plan from there if he is your main option.

This is also assuming Paley would answer honestly and reliably.

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Quote from: Bruce Wayne on May 31, 2018, 07:36:39 PMIsn't that like USD150/night? Who recommended you?

no. https://paleyinstitute.org/wp-content/uploads/Lodging-Sheet-May-2017.pdf

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Quote from: fokid on May 31, 2018, 08:04:24 PMno. https://paleyinstitute.org/wp-content/uploads/Lodging-Sheet-May-2017.pdf

Wow, when I emailed Paley Institute regarding accomodation, they didn't even give me this. Thanks man!

Quote from: Oh So Arrogant on May 30, 2018, 12:40:39 PMWhy in God's name would you...

1. Spend $7k for a hotel instead of just renting a short stay apartment or a cheap Airbnb for less than $1,000 per month and Uber it to physical therapy.

2. Spend $2k on medication. You don't take blood thinners with Stryde except for the first month, the rest can be handled with a bottle of Tylenol.

3. Spend $5k for an international flight, don't know where you are coming from but round trip coach from anywhere in the world wouldn't be more than $1,200 into Miami. Business class is totally unnecessary.

4. Spend $7k for a caretaker with Stryde. Waste of money.


If 96% of patients don't develop complications that require additional surgery, then 96 out of every 100 patients will spend no more than $100K. You over estimated your likely expenses by $55,000.

How is it no more than 100K? The surgery itself already costs that much.

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Quote from: myloginacc on May 31, 2018, 07:38:57 PMfokid, you're better off discussing this over e-mail/in consultation with Paley.

Numerous complications can occur from CLL, but the incidence and the types of complications should vary by doctor. Paley should be able to tell you what those complications are, how many times he had to deal with them, the level of incidence under his team, and estimate a cost for their treatment. You could probably plan from there if he is your main option.

This is also assuming Paley would answer honestly and reliably.

you are right. i am just trying to figure out if paley institute is for people like me. they don't reply to emails, so i will have to make a trip there i guess. i am wishing i can talk to some patient of theirs.

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Quote from: Bruce Wayne on May 31, 2018, 08:13:47 PMWow, when I emailed Paley Institute regarding accomodation, they didn't even give me this. Thanks man!

no worries. i think the prices get cheaper when booked for a long period.