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[fokid]

on the website they quote $95,000 for femur surgery with stryde. i estimate a complication free procedure and 3 month stay in florida to cost a total of $125,000 if i am not really frugal.

for complications they quote $30,000. however this is from mere anecdotal data.

"We had two patients in the past 50 that experienced unexpected complications that required additional unplanned surgery to fix. This lead to additional costs of about $30,000 each to fix the complication. This risk is about 4%. It is therefore our recommendation to keep about $30,000 in reserve."

but according to paley institute, it seems to be safe to do this with them if you have $155,000 of money.

however, i am suspicious of the $30,000 complication reserve. what complications are we staring at?

1) nerve decompression
2) nail breaking / fracture (will nuvasive pay for the nail replacements? how many days of hospital stay are we looking at? would it not be to the tune of the original surgery?)
3) complications after initial surgery (fat embolism for ex.) and we need to be monitored in an ICU for a few extra days. how much extra might this cost?
4) any other emergency care visit from a panic attack (your leg has swollen up like crazy, would you call an ambulance and go to emergency care? or would you just wait for a week more until your appointment with dr paley?) various radiology tests they make you do?

remember that no insurance will cover you for anything here. would insurance at least cover an unrelated illness like a strep throat? i hope so.


people on the forum seem to celebrate the fact that doctors in the US do their job right from the fear of lawsuits. but fear of lawsuits make doctors act super paranoid while taking care of you leading to unnecessary tests, protocols, medications, etc. good if you are rich or have insurance. but insurance doesn't cover CLL.

here are some crazy american hospital bills i dug up on the internet https://imgur.com/a/WIfeN https://imgur.com/a/UhGdH8r

i really don't know if getting CLL in an american hospital is really for anyone who is not a millionaire.

[Johnson1111]

on the website they quote $95,000 for femur surgery with stryde. i estimate a complication free procedure and 3 month stay in florida to cost a total of $125,000 if i am not really frugal.

for complications they quote $30,000. however this is from mere anecdotal data.

"We had two patients in the past 50 that experienced unexpected complications that required additional unplanned surgery to fix. This lead to additional costs of about $30,000 each to fix the complication. This risk is about 4%. It is therefore our recommendation to keep about $30,000 in reserve."

but according to paley institute, it seems to be safe to do this with them if you have $155,000 of money.

however, i am suspicious of the $30,000 complication reserve. what complications are we staring at?

1) nerve decompression
2) nail breaking / fracture (will nuvasive pay for the nail replacements? how many days of hospital stay are we looking at? would it not be to the tune of the original surgery?)
3) complications after initial surgery (fat embolism for ex.) and we need to be monitored in an ICU for a few extra days. how much extra might this cost?
4) any other emergency care visit from a panic attack (your leg has swollen up like crazy, would you call an ambulance and go to emergency care? or would you just wait for a week more until your appointment with dr paley?) various radiology tests they make you do?

remember that no insurance will cover you for anything here. would insurance at least cover an unrelated illness like a strep throat? i hope so.


people on the forum seem to celebrate the fact that doctors in the US do their job right from the fear of lawsuits. but fear of lawsuits make doctors act super paranoid while taking care of you leading to unnecessary tests, protocols, medications, etc. good if you are rich or have insurance. but insurance doesn't cover CLL.

here are some crazy american hospital bills i dug up on the internet https://imgur.com/a/WIfeN https://imgur.com/a/UhGdH8r

i really don't know if getting CLL in an american hospital is really for anyone who is not a millionaire.

Paley is strictly for people with a ton of money.

Rozbruch is more affordable because of insurance we've had people on here go for anywhere from 40-70k which isn't too bad for someone of his caliber.

Dr. M is also more affordable and his cost is most likely half that in total of Paley.

This is at least what i've gathered from reading diaries and asking people about their experiences.

[:Captain America:]

Since I am from USA, I think I should get insurance to get a surgery with Rozbruch. Do you know what kind of insurance is it? Can anyone drop me  a link or info?

Thank you!

[fokid]

could you please make a separate thread for it?

[Johnson1111]

Since I am from USA, I think I should get insurance to get a surgery with Rozbruch. Do you know what kind of insurance is it? Can anyone drop me  a link or info?

Thank you!

From my understand you'd need an underlying problem that is directly/closely correlated for insurance to cover it however

[fivetenneeded2016]

Paley is strictly for people with a ton of money.

Rozbruch is more affordable because of insurance we've had people on here go for anywhere from 40-70k which isn't too bad for someone of his caliber.

Dr. M is also more affordable and his cost is most likely half that in total of Paley.

This is at least what i've gathered from reading diaries and asking people about their experiences.

Why do people consider Dr Mahboubian better than Betz/Guichet?

[Johnson1111]

Why do people consider Dr Mahboubian better than Betz/Guichet?

Seems to be that there are some negative logs here about both doctors. In particular Unicorn's thread with Guichet where he encouraged her to lengthen extremely large amounts at a time despite poor bone regeneration.

There are also bad logs on Betz.

There are no particular horror stories with Dr M and the last few logs of him have been successful here.

However people have a short memory and this could change if Dr M has one bad log and two unknown doctors that are cheaper have a couple good ones. So the tide is just turned in this direction at this time.

The opinions tend to change often. This is why individual consultations and individual research and conversation is the most important.

[fivetenneeded2016]

Seems to be that there are some negative logs here about both doctors. In particular Unicorn's thread with Guichet where he encouraged her to lengthen extremely large amounts at a time despite poor bone regeneration.

There are also bad logs on Betz.
There are no particular horror stories with Dr M and the last few logs of him have been successful here.

Unicorn 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.

However people have a short memory and this could change if Dr M has one bad log and two unknown doctors that are cheaper have a couple good ones. So the tide is just turned in this direction at this time.

The opinions tend to change often. This is why individual consultations and individual research and conversation is the most important.

DITTO! BULLS EYE

[fivetenneeded2016]

Paley and Parihar both do mention a few bad cases under them, however they claim they recovered fully post that. I am sure even Betz and Guichet would have claimed had we not had Unicorn and MasterHY(he is a mystery though).
Now imagine we had in the current time with us a Paley or Parihar patient with not so good outcomes, who just decided to stop posting, or is not able to afford the doctor, and going with some other doctor and thereby delaying the course of treatment. Forget Parihar, would Paley still be considered the best? I GUESS NOT..and the word would have been "Hmm, I guess Paley isnt a good surgeon, terrible person and super greedy for money. AVOID.." or change in drift "Hey, Paley wasnt good enough afterall, I heard more failure cases from his former patients...I think the new Nigerian doc is the best. Zero bad cases, and costs a lot cheaper".

-----------------------------------------------------------------------------------------
I am sorry to spam this thread...could it be moved to a different topic?

[fokid]

mods please move these replies to another thread. all i wanted to know was finances at paley institute. 

[Oh So Arrogant]

on the website they quote $95,000 for femur surgery with stryde. i estimate a complication free procedure and 3 month stay in florida to cost a total of $125,000 if i am not really frugal.

So you think it costs $30,000 to stay in Florida for 3 months if you are not really frugal and have a complication free procedure. Break down your expenses to show everyone how you came up with that amount. This should be interesting.

[fokid]

$7k for hotel
$2k for medications
$5k for international flight (including a business class return flight back because you are in pain)
$2k for food and supplements
$1k for transportation
$7k for a care taker for a month ($240 a day. one month isn't necessary for everyone, but might be for some)

that is $24k, but i left some space for miscellaneous expenses. it most probably will not be more than $20k for most. i was just being conservative.

anyway, 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.

[Oh So Arrogant]

Why 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.

[fokid]

Why 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.

ok thanks for your input. please refrain from participating in the thread. i am hoping to hear from paley's patients or people who are seriously considering him.

[Oh So Arrogant]

You did just hear from someone who is seriously considering Dr. Paley. You heard from me, and i'm telling you that your budget estimate is $55,000 over any realistic expenses. I then broke it down for you as to why your expense estimates are outrageous. Try to learn something.

[fokid]

do i have to explain to you how 4% is high odds? if you disagree then we have little value in interacting. you come off as an optimistic person who believes everything will go alright and i am not like that. i wish you good luck in saving your $100k, getting stryde with dr paley and achieving your goals.

[Oh So Arrogant]

do i have to explain to you how 4% is high odds?

Yes, I can't wait to hear this. Mathematicians will have to rewrite all the worlds textbooks if you can do it.

[lemonade311]

do i have to explain to you how 4% is high odds? if you disagree then we have little value in interacting. you come off as an optimistic person who believes everything will go alright and i am not like that. i wish you good luck in saving your $100k, getting stryde with dr paley and achieving your goals.

1/22 is high odds? Wtf ha. Your estimates seem way too high.

[Android]

Better to be over-prepared than not, this isn't a surgery you want to go through if you have just enough money for the procedure and not much else.

That being said, I wouldn't categorize 4% as a high rate of complication. Conversely I wouldn't say that 96% is a poor success rate.

Don't forget nail removal, which is much more of a certainty:

The cost of removal is separate and is not included in the cost estimate. The cost of removal is $17,500 for two femurs and $22,500 for two tibias, and $27,500 for simultaneous bilateral femur and tibia removal.

[lemonade311]

Better to be over-prepared than not, this isn't a surgery you want to go through if you have just enough money for the procedure and not much else.

Absolutely. It's just OP's estimates are in the wrong places, like $5k on business can seats is pretty insane if you are tight on money.

[fokid]

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.

[hanshi]

Unicorn 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.

[..]

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

[fokid]

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.

[..]

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.

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

[myloginacc]

anyway, 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.

[fokid]

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

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

[..]

no. 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!

Why 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.

[fokid]

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.

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.

[fokid]

Wow, 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.

[..]

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

That looks great. 150k is not unrealistic to get.