Everyone, as I have posted, I am considering Dr. Paley and Dr. Guichet for my surgery. For those considering these doctors, I hope you find the information of interest. This is my accounting of my visit with Dr. Paley, I will post a similar accounting of my visit with Dr. Guichet in 3 weeks or so.
Caveat Emptor: aside from what I got from Q/A, exams and visits, these are my opinions only, I am not a doctor, this is only for informational purposes and not intended to provide medical advice, everything you do is at your own risk.
Overall9.5/10 stars. Everything at the Paley Institute is orderly, there is a prescribed process and rigor and the institute seems to run like a NASA control center. The staff is incredibly friendly and not judgmental. The doctors I met (Dr. Packer and Dr. Paley) are very nice, knowledgeable and transparent. They don't try to sell you anything and are frank in their answers and what you can expect. Dr. Paley is the genuine article, and the reasons behind his reputation as one of the top surgeons in this field are all around you when you enter the Paley Institute. He has done this for a LONG time, and has pioneered a lot of what is now being used. An entire wing of the hospital is basically his and dedicated to limb lengthening, and he has a lot of patients to treat limb deformities of all types for people of all ages, as well as CLL. The half star ding is only for West Palm Beach (the location) which I didn't really care for.
Arrival:I arrived the night before my consultation. I did not stay in one of the nearby facilities, but I visited one (more on this later).
AppointmentI arrived at my appointment about 15 minutes late (it was scheduled for 8AM) due to Lyft being late and Uber being completely unavailable. When I walked in, I was greeted by Dr. Paley's front desk staff who asked me to sign in (they mask the name and signature afterwards with privacy stickers). They have a nice lounge with coffee, tea and water while you wait. They hand you a very nice informational packet that contains everything that is sent in the email when you make the initial appointment.
I had already filled out my paperwork and was told to wait for a bit for the EOS scan (this was indeed the extra $300). They have guest WiFi at the institute, so I checked my email. I didn't wait long. Someone took me to another area, where I was given a gown and a heart-shaped protector that I stuck on my boxers over my nether region
. The X-ray technician indicated that since this is a low-dose radiation X-ray, it's not really needed, but they give it to you anyway. You do the EOS scan in a hospital gown (underwear stays on), and they take two images (one standing, feet together, and another one with one foot in front of the other). You stand in an open yellow box for 25 seconds or so for each image and that's it. Once I was done I returned to the lobby.
Visit with Dr. PackerI was then taken to a patient room where my weight and height were taken. Surprisingly, I measured 1 cm shorter than my own measurements or that of my primary care doctor, who takes them rigorously with each annual. Blood pressure was also taken, and then Dr. Packer came in. She had a transparent femur prop with a Precise implanted as a prop, and she thoroughly explained how that works. They had my EOS scan on 2 screens in the room, and Dr. Packer measured my dimensions to obtain my ratio.
The good news: I'm a perfect candidate for femoral lengthening due to my proportions. I am "femur short" and have long arms (my wingspan is a little over 2 inches longer than my current height) so my proportions will be extremely close to perfect when I lengthen. The bad news: one of my legs is shorter than the other by over 1 CM!! (which explains the constant lower back pain in that region, especially after running). My spine has scoliosis and looked like a snake. She told me to begin wearing a prosthetic in the shoe for the shorter leg and start doing specific PT to correct that.
I found Dr. Packer to be very knowledgeable and forthright. I asked a ton of questions, and felt like I got very transparent and realistic answers. Below:
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Procedure time. 2.5 hours on average
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Complications. Minimized over the years, especially with the Precise 2.2. No major complications seen with Precise 2.2. What is seen from time to time is delayed consolidation and patients who just heal slower. They have had one case of non-union several years ago, which also resolved.
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Blood transfusions. 25-50% of patients require them. You can either donate blood or they use a blood bank.
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Are blood transfusions safe? Statistically yes, very. Risk of infection is one in 30 million
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What can you do to minimize risk? Follow Dr.'s instructions to the letter. The people that do the best with this surgery have a very regimented plan that they stick to (PT at x time, stretching at y time, etc.) and do not weight bear on the nail until told that it's safe to do so.
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Is extra PT worth the cost? During the latter parts of the lengthening process it can make a huge difference. Some people will go through 2-a-day towards the end and they just "rock" their recovery
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What about pain? The first few days are tough. Even though your bones have been broken under very controlled circumstances (not like when someone comes in with a shattered bone where there are damaged muscles, etc), the area of the surgery will still hurt. You're given pain medications to cope. Most patients go off pain meds after 3 weeks or so completely, some will take Tylenol.
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How much weight can you bear? None, initially. The Dr. will tell you when it's OK to go from non-weight bearing to walker to crutches. It all depends on how you heal. Most nails break when you're twisting and weight bearing, and they are most vulnerable to breaking at full extension (8cm for Precise 2.2).
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Returning to sports. I don't have Olympic games ambitions, but am very active in several sports. Dr. Packer cited an example of a (then) 52 year-old patient who lengthened all 4 segments with Dr. Paley. This patient was also a physician, and very athletic. He resumed all activities with no degradation in performance and runs with Dr. Paley in the annual charity run for Dr. Paley's foundation. She said most patients return to full activity and as they get back into their workout regimen, regain what they have lost in terms of athletic ability. Also take into account some diminishing returns with age.
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IT band and biceps femoris tendon release The IT band grows back. Some patients who return for a second round of surgery have to have it re-released. The biceps femoris tendon that gets released does not. There is no impact to sports from these surgeries, except for high jumpers, where the biceps femoris tendon release has a very fractional negative impact.
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Will you need someone to assist you? Absolutely, during the first 2-3 weeks. There are several facilities nearby where patients stay, and helpers can be hired to do grocery shopping, etc.
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May I meet patients who are undergoing the procedure? Yes, if they would like to meet you.
(This is all I remember asking Dr. Packer, I may have left some stuff out that I'll probably remember later)
Tour of the PT centerDr. Packer told me to wait and then someone came by to take me by the PT center. I was shown what I would start on (some stationary bikes and horizontal steppers with zero resistance, then other equipment. It's a well equipped facility. I met some of the Physical Therapists, they were all very nice and friendly. Lots of kids doing PT.
Existing CLL patientsNone had PT scheduled for the morning. The place was packed with children who were undergoing limb lengthening for a variety of reasons, all non-cosmetic. Dr. Paley does not accept anyone under 18 for CLL. All the kids were smiling and some if not all were all in external fixators. I have never seen an external fixator, I thought I would be in shocking pain after wearing one.
Visit with Dr. PaleyI had to wait a while for Dr. Paley, he was in a procedure that was running long and an emergency consult. He came in, looked over the EOS scan, and asked me a bunch of questions about myself and what I knew about the procedure. I explained that I didn't even know IM nails existed until recently and while happy with my height, was glad to find out that something like this had been invented and a procedure, while invasive, had been refined over the years to make CLL available. He corrected me and said that what seems invasive to me is "minimally invasive" to him and his staff - the break is done under very controlled conditions, and everything is closely monitored for patient safety.
Safety is pretty much a theme at Paley, it seems. He explained that his goal is to "get you out the same way you came in, just taller", and if he does not do that, he has failed. He will absolutely not lengthen you beyond what your body can safely accept or tolerate. I had already asked Dr. Packer so many questions, but asked Dr. Paley about the IT band and biceps femoris tendon release. He told me that a lot of what he does is to prevent complications, and these 2 surgeries are done for that reason for longer lengthening. He told me he has had to re-release the IT band for repeated surgeries. Dr. Packer added later that the only time they did not consider an IT band release was for a lengthening done for a master yogi, who was incredibly flexible, and wanted to lengthen 8 cm, and that person still required the release.
I asked about the Precise nail. Apparently (and Dr. Packer also told me this), Dr. Paley is involved with the development of the nail. He said he has used every nail there is, and this is the best one to date given the strength and rate control. I asked about other doctors who perform this surgery and talked about the notion that no nail is fully weight bearing. He stated that that is correct. He said that the Guichet nail is indeed stronger than the Precise 2.2. The Precise is made out of titanium, and the Guichet nail is made of another metal (I forgot what). He also said that the disadvantage of the Guichet nail and the Fitbone are the rotations necessary (the ratcheting), and the fact that they do not offer the precision of the Precise, something that Dr. Paley deems critical to this procedure. Dr. Paley said the Fitbone and Guichet nails are also very painful to patients when they rachet. He said a fully weight-bearing Precise will emerge at some point, but he doesn't know when. No nails have been broken with the Precise 2.2, apparently.
He did not speak ill of other doctors, at all, which I really liked. He mentioned Dr. Guichet and Dr. Betz as other doctors of note in Europe who perform this procedure that are well known and of well repute, and said he has know both for many years. He did say he has corrected and corrects quite a few surgeries done overseas, including European doctors.
He went over what I can expect (which Dr. Packer also covered) and went over the medications I am taking (I wanted to know if there would be any contraindications with the surgery - there would not be). Same opinion on my proportions. He told me to think about whether I wanted to do this and if I did, be prepared to make this my full-time job for a few months, and I would be successful. Having a strict routine, adhering to Dr.'s orders, and taking my PT and stretching seriously would be my keys to success. Dr. Paley told me to email him if I had any questions. Then he shook my hand and left because he was paged and needed in an operating theater. Not pushy at all, just friendly and radio-instructions type answers to my questions, no hyperbole that I could detect.
Dr. Packer, part 2Dr. Packer performed a series of flexibility tests afterwards. Turns out I'm
very flexible
, which I already knew, except for my IT band, because of running. Since I had time, she recommended I visit one or several of the hotels, and one of the drivers was even kind enough to drive me there one one of his patient runs. They shuttle back and forth to several nearby hotels that he sends lots of patients to and they all have a "Paley Rate" for extended stay.
I visited some of the hotels. They are what you would expect. The rooms are nice and clean, and they all have pools to use, which Dr. Packer recommended as part of the PT. I won't name the hotels because of below (I want to maintain privacy for patients to the maximum possible extent)
Meeting a patientBy happenstance, I met a patient at one of the hotels as I was leaving. This person was headed for PT. I saw the scars and hesitantly introduced myself and asked whether this person was a Paley patient - they were. I asked about the overall experience and they said from a clinical standpoint, everything was excellent, though they had some issues with PT scheduling which were in the process of getting fixed. Something in the pool was also not working, so they reached out to someone at the Paley Institute, who reached out to the hotel, who fixed the issue the next day. I asked about pain, and they more or less confirmed what Dr. Packer said. For someone in the middle of the process, this person looked great, and I actually told them that
. I gave them my email address but did not ask for theirs in case they were amenable to connecting. I did not ask their name or forum handle - I really wanted to be as minimally intrusive as possible. If you are that person and reading this, keep going!!! - and feel free to get in touch at the email address I provided.
West Palm BeachI had been there before and not much has changed. I would describe it as "sketchy" given where I live, but these are my impressions. I believe it's safe under controlled circumstances, and echo CCMidwest's comments that if you go, don't carry cash, don't wander around, and rely on Uber and Lyft for transport. I stayed in a very nice hotel in the middle of WPB, several miles out, and even there I saw some things that I wouldn't see at the same hotel in a different city. I am not being a snob in saying this - I grew up poor and whatever I have, it's self-made. WPB reminded me a lot of the neighborhood I grew up in.
RandomApparently some people have aliases when they do this surgery, and never tell family members, even spouses. I can appreciate and understand everything but the last part, I have no idea how I would hide something like this from a spouse
. I found that last bit both interesting and humorous.
Also - be prepared to get a reality check in what you are about to enter, both good and bad. Having been explained the procedure, met a patient, and seeing the fact that your life has to be put on hold, basically, as a tradeoff to being taller, seeing the facility in person really helps the rubber meet the road. Once you enter the hospital, reality starts to set in, and I absolutely recommend a visit with Dr. Paley before considering the procedure elsewhere, given his experience. It also, at least for me, puts in perspective the fact that I wouldn't trust my legs, body or health to someone that didn't have a lengthy track record of experience with this and a healthy outcome doesn't really have a price. Cap Theorem rules: Safety, Quality, Price. Since you can't have all 3, I absolutely vote for the first 2.
All I can think of. Hope this is helpful to those considering the procedure and Dr. Paley.
Best,
--jbc
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Topic: Consult with Dr. Paley and overview of Paley Institute/St. Mary's Hospital (Read 4905 times)