Topic: Consultation with Dr. Paley (Read 11730 times)

Cooper · « **on:** April 24, 2014, 06:05:29 PM »

I am meeting dr. Paley next week. If you guys have any questions for him post here. I will post my experience shortly after...

BilateralDamage · « **Reply #1 on:** April 24, 2014, 08:22:56 PM »

If the nail breaks or stops lengthening, what do you do? In other words, what do you have to pay for, will insurance cover anything, will Paley cover anything, etc.

rickybobby · « **Reply #2 on:** April 24, 2014, 08:30:13 PM »

Ask Dr. Paley if he can guarentee going to a full 8cm without having to stop due to complications with the nail not working.

For some reason I have not read any diaries on patients going the full 8cm.

Medium Drink Of Water · « **Reply #3 on:** April 24, 2014, 09:31:44 PM »

I'd like to hear his take on chronic exertional compartment syndrome developing after someone finishes LL. Would this be due to a change in gait? Is it more/less likely to occur depending on which bones are lengthened?

ChrisIsaak · « **Reply #4 on:** April 24, 2014, 10:16:25 PM »

What does he think of the recent failures of Precice? Does he endorse lengthening at a faster rate if necessary to avoid early consolidation?

One more - if a patient has severe ballerina foot problem, could he still lengthen tibiae, given that the doctor will perform a gastrocnemius-soleus recession? Would this be sufficient at all times, or has he seen patients whom he deemed "not suitable to lengthen tibiae at all"?

Thanks a lot

KiloKAHN · « **Reply #5 on:** April 25, 2014, 01:41:51 AM »

Are releases always necessary for femur lengthening if you want to recover fully or does he recommend them because it makes lengthening with the precice easier?

Cooper · « **Reply #6 on:** April 25, 2014, 03:59:27 AM »

Quote from: BilateralDamage on April 24, 2014, 08:22:56 PM

If the nail breaks or stops lengthening, what do you do? In other words, what do you have to pay for, will insurance cover anything, will Paley cover anything, etc.

This will be my #1 question. I am worried as much as you are.

Cooper · « **Reply #7 on:** April 25, 2014, 04:00:17 AM »

Quote from: Kilokahn on April 25, 2014, 01:41:51 AM

Are releases always necessary for femur lengthening if you want to recover fully or does he recommend them because it makes lengthening with the precice easier?

Yes sir. Adding to my list.

Cooper · « **Reply #8 on:** April 25, 2014, 04:00:58 AM »

Quote from: ChrisIsaak on April 24, 2014, 10:16:25 PM

What does he think of the recent failures of Precice? Does he endorse lengthening at a faster rate if necessary to avoid early consolidation?

One more - if a patient has severe ballerina foot problem, could he still lengthen tibiae, given that the doctor will perform a gastrocnemius-soleus recession? Would this be sufficient at all times, or has he seen patients whom he deemed "not suitable to lengthen tibiae at all"?

Thanks a lot

Sure.

Cooper · « **Reply #9 on:** April 25, 2014, 04:01:43 AM »

Quote from: Medium Drink Of Water on April 24, 2014, 09:31:44 PM

I'd like to hear his take on chronic exertional compartment syndrome developing after someone finishes LL. Would this be due to a change in gait? Is it more/less likely to occur depending on which bones are lengthened?

Ok.

Cooper · « **Reply #10 on:** April 25, 2014, 07:47:55 PM »

I emailed rather waiting for consultation on precise malfunction. Dr. Paley have heard the case of Korea. According to him it is unclear until the device is removed and examined. He had inserted about 100 p2 precise and none malfunctioned or broken. Sometime ERC device are not applied correctly in the right location by user hence the nail is not lengthening as should have.

BilateralDamage · « **Reply #11 on:** April 25, 2014, 08:58:23 PM »

So what does he do if he examines the nail and it was faulty? What do you have to pay for? Also, if you pre-consolidate, what would be the cost of additional surgery?

Cooper · « **Reply #12 on:** April 28, 2014, 08:12:35 PM »

I am here at palm beach arrived today. I did the 3D x-rays and looked cool. I will be meeting dr. Paley tomorrow am. I have all the question written on my notepad. Will post shortly.

thanks

Medium Drink Of Water · « **Reply #13 on:** April 28, 2014, 08:34:35 PM »

Awesome. Thanks for including our questions in your consultation, Cooper.

rickybobby · « **Reply #14 on:** April 28, 2014, 09:06:52 PM »

Cooper,

Please ask Paley if you can go the full 8cm without any release surgery? Also ask if ellipse gives a set of extra nails just incase the original nails break.

Cooper · « **Reply #15 on:** April 29, 2014, 12:32:05 AM »

Quote from: rickybobby on April 28, 2014, 09:06:52 PM

Cooper,

Please ask Paley if you can go the full 8cm without any release surgery? Also ask if ellipse gives a set of extra nails just incase the original nails break.

Hey Ricky, I know he does 100% release for 8cm patients. He emailed me few weeks ago but I will check with him. He was doing release on about 50% of patient on first generation precise.

Cooper · « **Reply #16 on:** May 01, 2014, 03:04:48 PM »

I had a good consultation with John and Dr. Paley. John and I spoke about 15-20 minutes. He answered all my questions and he is the go to guy. My first question was Precise malfunction and premature consolidation. I maximize the consultation time. Dr. Paley and I probably talked about 20-30 minutes and he looked at the watch and said he had to run to OR.

Dr. Paley mentioned, out of 100 Precise 2 patient not a single one has a complication. But I insist what if I become the unlucky one

. If the device is not working than Ellipse will cover for additional cost i.e. free device and surgery. I was very relief to hear it.

The premature consolidation is rare and they will monitor very closely. If the bone fused than that will be additional out of pocket expense $15k, insurance WILL NOT COVER. In rare occasion, very rare, the bone might not consolidate again very very rare in femur that might require bone graft. That is about $30k.

The soft release is 100% necessary for 8cm LL. No stretching is required. I asked specifically what should I do from now to date of surgery and the answer was do normal things. I have to take vitamin D supplements. They also asked me take Silical 1, 2 and Boost for bone health. I need to buy from www.bonehealthnow.com.

No one has developed chronic exertional compartment syndrome. On ballerina foot situation, they will access the severity and decide to stop LL.

I think I hit all the questions. I will be posting my 3-d xrays in next few days.

Also, I met a guy who was in 6.5cm distraction. He seems doing really well. We walked together to parking lot. Of course he was using walker. He was driving on his own, going church and etcs. He wants to get 8cm and sees no problem. He was by himself through out and said loneliness was his biggest challenge.

Jean · « **Reply #17 on:** May 02, 2014, 02:49:55 PM »

Quote from: Cooper on May 01, 2014, 03:04:48 PM

I had a good consultation with John and Dr. Paley. John and I spoke about 15-20 minutes. He answered all my questions and he is the go to guy. My first question was Precise malfunction and premature consolidation. I maximize the consultation time. Dr. Paley and I probably talked about 20-30 minutes and he looked at the watch and said he had to run to OR.

Dr. Paley mentioned, out of 100 Precise 2 patient not a single one has a complication. But I insist what if I become the unlucky one . If the device is not working than Ellipse will cover for additional cost i.e. free device and surgery. I was very relief to hear it.

The premature consolidation is rare and they will monitor very closely. If the bone fused than that will be additional out of pocket expense $15k, insurance WILL NOT COVER. In rare occasion, very rare, the bone might not consolidate again very very rare in femur that might require bone graft. That is about $30k.

The soft release is 100% necessary for 8cm LL. No stretching is required. I asked specifically what should I do from now to date of surgery and the answer was do normal things. I have to take vitamin D supplements. They also asked me take Silical 1, 2 and Boost for bone health. I need to buy from www.bonehealthnow.com.

No one has developed chronic exertional compartment syndrome. On ballerina foot situation, they will access the severity and decide to stop LL.

I think I hit all the questions. I will be posting my 3-d xrays in next few days.

Also, I met a guy who was in 6.5cm distraction. He seems doing really well. We walked together to parking lot. Of course he was using walker. He was driving on his own, going church and etcs. He wants to get 8cm and sees no problem. He was by himself through out and said loneliness was his biggest challenge.

Thanks for posting about your consultation Cooper. I had my consultation with Dr. Paley a few weeks ago and he told me that he has not had any complications with the Precice 2 nail. The funny thing is the other American doctors have not had any problems either, it's only Dr. Lee in Korea. Do you plan on staying in Florida for your entire lengthening or will you return home after a few weeks and come back for your check ups and x-rays?

TRS · « **Reply #18 on:** May 02, 2014, 03:07:07 PM »

Thank you very much for posting this Cooper! It is reassuring to hear that Ellipse will cover the cost of the device and the additional surgery. I am following Wolverine's diary and it will be interesting to see the final outcome of his case with Ellipse.
BTW are you planning on lengthening 8cm and what soft release surgery did he suggest? (Only ITB or other release surgeries too?)

alps · « **Reply #19 on:** May 02, 2014, 03:53:47 PM »

Quote from: Jean on May 02, 2014, 02:45:25 PM

Why would you ask Cooper who just had a face to face consultation with Dr. Paley to confirm via email what he was told in person when you can email Dr. Paley yourself? Now that's hard to believe

Email is proof that he said it.
Otherwise he can just deny having said it.

Anyway, I'm not questioning the truth of the statement Paley made.

Cooper · « **Reply #20 on:** May 04, 2014, 02:27:36 AM »

I have it on writing on not a single complication. However, I do not need to prove anyone and please do not ask me to post. Sorry guys if you do not believe than I cannot help. Pigs can fly, but, unfortunately pigs does not do limb lengthening surgeries

. Dr. Paley does about one CLL per week. There were some complications in Precise 1 but not with Precise 2. I trust wholeheartedly Dr. Paley until I see otherwise personally.

I felt dump asking the same question to Dr. Paley when he already answered on email and John reiterated. I moved onto other questions.

I do not know how much I will lengthen. I am shooting for 7 to 7.5cm but I will see how that goes. I am still planning for 5cm tibia (LON/LATN) with Dr. Birkholtz, Lee, Salmeh or Russia. I am planning to stay through out and perhaps even more. I work remotely most time and staying in Florida is not a problem for me.

I am counting my days...apprehensive but mostly excited!

Please feel free to ask me any questions.

KiloKAHN · « **Reply #21 on:** May 04, 2014, 03:29:08 AM »

From what I understand, Dr Paley said that he hasn't had a single complication regarding the Precice 2 device malfunctioning. I don't think he's saying that not a single patient using Precice 2 has had a complication related to lengthening itself.

Cooper · « **Reply #22 on:** May 05, 2014, 06:29:41 PM »

I appreciate follow up and discussion. I am no way offended and this is what we want to discuss on this forum anyway. Curiosity and general Q&A helps all of us in some way. Please keep it coming.

BilateralDamage · « **Reply #23 on:** May 05, 2014, 06:54:25 PM »

Quote from: Cooper on May 01, 2014, 03:04:48 PM

If the device is not working than Ellipse will cover for additional cost i.e. free device and surgery. I was very relief to hear it.

Such a relief to hear that. Thanks for finding that out Cooper!!

Limb Lengthening Forum

Author Topic: Consultation with Dr. Paley (Read 11730 times)