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DR. Paley or Shriners?

My son was born in Dec. 2003 and has unilateral PFFD that is of moderate severity. I have been in email contact with Dr. Paley and we will be making a visit to his center soon. We will pursue lengthening. I have contacted the Shriner's hospital and am considering contacting Dr. Mark Dahl at the Minnestoa Center for Limb Lengthening.
Of course, I like the idea of free care at the Shriners Hospital, since I am in Omaha, NE and transportation will be an expense even though insurance will pay for the surgeries.
Does anyone have experience with these Doctors and prefer one over the other?
Your response is greatly appreciated.



We decided on Dr. Paley & Dr. Herzenberg in Baltimore because of their vast experience with limb lengthening and the Super Hip/Super Knee surgery. I also like that other doctors around the nation get trained by these doctors in Baltimore.

Since we don’t know if we should lengthen our daughter’s leg or have the Van Nes performed on it, Dr. Herzenberg told us that they will work with us to help us decide which treatment method will be best for our daughter. They will then perform which ever we choose. At our appointment, he didn’t rush us at all. He stayed with us until all of our questions were answered.

I am at peace with our decision to go with Dr. Paley & Dr. Herzenberg.

I don’t know anything about Dr. Dahl in Minnesota or the Shriner’s hospital.

I hope this helps some.


Thanks so much for the reply. I have heard a lot of good things about Dr. Paley and his collegues. We are scheduled to go out in Aug for our consultation. We will visit with the shriners, too, but as of now I think the Baltimore doctors are the more experienced and therefore the way to go.

Let me know how your child's procedures go, if you can. When are you scheduled for the hip surgery?


We have an appointment with Dr. Paley on Aug. 25th. I think he will set a date for Olivia's hip surgery at that time, but we're looking at Spring 2006.

I'll send you a private message with my contact information if you want to talk sometime.


Dear Janelle,

Our 7 year old daughter McKenna is currently at Dr. Paley's hospital in Baltimore, and doing very well. So far she has gained just over 2" in length, putting us at a total of over 5 1/2 inches from her two lengthenings with one more lengthening to go when McKenna is around 13 years old. In our case Dr. Dahl wasn't able to help so we flew to Baltimore for a second opinion. After McKenna's first lengthening was completed we returned to Minnesota where we live and needed some post term physical therapy and were denied access to Dr. Dahl's main St. Paul facility, but were allowed into a satalite office in Bloomington for our needs. Basically in our case we went with the doctor who was able to help and that we felt most comfortable with. Since we have had sucess with our choice the only information we have is probably biased, so here is what we have learned so far.

The main thing you might like to do is talk to a few doctors who are trained in this field. Fly out and meet them and get a feel for how they and their staff seem to work together. Then ball park what the costs will be for housing, travel, and all the other little expenses not covered by HMOs, and try to figure out what plan fits best with your family. Since we have not been treated by any other doctor we can only share with you our experiences with Dr. Paley and his team, however this website is a great area to get opinions from all kinds of families for what has worked for them. If you would like we can chat via email at, or you can call collect at (763)494-8823 and I can try to answer any questions that come to mind. Also, my wife Karla loves to talk to people while she is staying in Baltimore as it helps to pass the time. Sometimes it helps to get the "female" point of view because us guys get wrapped up in the details and, as my wife often reminds me, we guys tend to miss some of the emotions that go along for this ride. Also, let us know if you will be in Minnesota or in Maryland for your visits and we will try to setup a meeting so you can chat in person with us and with McKenna. Sometimes seeing something close up speaks volumes. Our lengthening in Baltimore should wrap up around the beginning of August, but we will be flying out for follow up visits, and if we can set it up right we can be there at the same time for a chat.

Now, as noted earlier, our biased view. We have seen so many cases during our 7 year journey that we can say that Dr. Paley and his team have seen more different kinds of limb length issues, and they have corrected so many complications that we honestly won't go anywhere else for McKenna's treatment. No case is ever the same, and every one has it's own possible problems, but if you are looking for a team with the most experience you should fly out there and see what all the hype is about.

Hope some of this helps, and again feel free to contact us at anytime as we want to help in any way we can. When we first found out that McKenna had PFFD we found the only website available at that time, and met some wonderful people that took the time to share their experiences which helped us greatly. We want to repay the favor...So if there is anything we can do to help just let us know....


Chuck, Karla, Dylan & McKenna

Dear Everyone,

We need to say we are sorry to anyone who already has had an amputation done. In our haste to share our story we didn't take into account the possibility that we might offend some readers with our story. The following is a copy of a letter we sent to someone who asked why we decided to lengthen...


I am so sorry if you took my posts to mean amputation is a bad thing....I forget that when I post my long winded explanations of what we have done that other people will read it and feel that I am against amputation. Our story actually started by talking to our neighbor who had a bad car accident 4 years before McKenna was born and had her leg amputated close to her hip and we spoke to her several times to talk about what our plan might be.

You see not every case is the same with PFFD, and with different classifications there are different options. Our case involves a possible total of 4 or 5 surgeries over 13 years. Each stay in Baltimore lasts 4 to 5 months. In talking with our neighbor who runs in marathons and has had her picture in several magazines showing all she can do she pointed out that yes these surgeries were going to be difficult, but if there was a chance to make things work we should give it a try. She said that no matter what our daughter McKenna was going to be ok, which was the most important thing for us, and that even if things didn't go well she would still run, climb, ride horses, and do anything she wants. It was from talking with her that we felt some relief that everything was going to be ok.

Before McKenna was born we went in for an ultrasound as her brother was over 10 lbs at birth, and they wanted to establish her birth weight. It was then that the nurse thought McKenna didn't even have a right leg, and we were rushed into another room for more advanced ultrasound screening. Once they found her thigh bone they brought my wife and I to another room and showed us all kinds of old photos of what they thought was happening. Old black and white photos of all kinds of PFFD. We went in without a clue what McKenna had, and in 3 hours we were informed that our daughter might have mental problems, deformed face, arms and legs, missing toes and fingers and the whole boat. We were in shock. From that time until McKenna was born we looked everywhere for information and there wasn't much back then. That was when we started talking more with our neighbor. For the next year we spoke with several doctors and again chatted with our neighbor letting her know how things were looking. That was when she finally suggested that we give it a shot. She said no matter what there will be some pain either from these surgeries, or from the prosthetics, and there are definite costs involved in both. She said to give it a shot, but to talk to as many people who had the lengthening done as possible to be aware of any problems. And I guess that is what we have done.

Again my whole family wants to apologize for any inference that amputation is a bad thing. In our rush to share our story we didn't even think about how our words would affect others, and we are truly sorry. I hope you can forgive us for our lack of foresight, and if there is anything we can do just let us know.


Chuck, Karla, Dylan & McKenna

My son is currently undergoing his second leg lengthening. (we got 5.5 cm the first time and are currently at 5.5 cm this time with a couple weeks to go.) We are at Twin Cities Shriners and have been very happy here. We followed Jonathan's doctor from the Tampa Shriners. (I have posted the story of Jonathan's first lengthening on this web site.)

[Ed: you can find the story at Jonathan's Story ]

We have complete confidence in his doctor who specializes in both lengthening and spine surgery. The Shriners hospital in Minneapolis has a lot of experience with lengthening because of the doctors who have been here in the past so the staff has experience too.

I would strongly recommend an evaluation visit. It's no cost and you could see what you think and how you feel about the doctors and the facility. I have always happy with the care we have received at Shriners. (This is the 3rd Shriners hospital for us.)

Our son needs at least one more lengthening after this one (so 3 total). He was fortunate to have a good hip and knee so that might make the difference for us.

Feel free to e-mail anytime

Christine Ross

Our daughter is too young for us to yet make the decision on lengthening - but my wife and I have met with many surgeons around the country, and spoken personally to parents who have gone to Dr. Dahl, Dr. Paley, and Shriner's surgeons.

What I have found (and this will probably go into the book too) is that the surgery is one small part of what affects the success of the lengthening process. The care you receive afterwards is super critical to a successful outcome.

I have heard and read of horror stories where the nurse came in and did something that they weren't supposed to do because of mis-communication between them and the surgeon. Hospitals with a 70% rate of complications vs others with a 5% rate. Doctors
with an 0 for 5 score trying new and untested technologies.

Of course, individual cases don't make for a statistical average. But it suggests that for a good outcome - you need to be there for your child, pre-educate yourself on what needs to be done in the months that follow surgery, and be a strong patient advocate. Perhaps take a tape recorder. Talk to other parents who have been to that hospital/doctor.

Some questions you might want to ask of parents: Did they have nurses who were new and did things they weren’t supposed to? Did the doctor write down clear instructions or did the doctor have the staff interpret? Did the doctor confidently tell you that everything would be fine even though it had never been done before? Some doctors have a reputation for wanting to be far ahead of the "cutting edge" (no pun intended) of research and have a reputation for always recommending surgery confidently but then test new and experimental procedures. Did you meet other's who did not have a successful experience.

The point is that when you meet with the doctor - part of your evaluation should be the team they have around them. We have yet to make a decision on lengthening but when my wife and I met with Dr Dahl he and his facility met our criteria for a good place for lengthening. We were very impressed by his candid evaluation of our daughter’s leg, by the team he has working with him, the skill of the nurses who worked with our daughter, the procedures/devices he has in place to inhibit pin infections, and the publications he has written on statistical results of lengthenings done at his hospital. We have yet to meet with Dr Paley but I've heard good things about his facility but also read messages of some who wrote that they had very very unhappy experiences with Dr. Paley and ended up in a wheelchair (their personal site went down before I could archive them here at

Again - other parents are a great resource. You can find other parents’ stories in the guest book archives and find other parents who have done lengthening in the extended search pages (click on their name to send a private message). Good luck – you can reach me here

I agree that you do need to be an advocate for your child's care regardless of where you go. You will have times during a nurse shift change during the hospital stay right after surgery, or when talking to a different Physician's Assistant that you will get conflicting information, and it is up to you to make sure what they are doing is what your doctor has told you he wants. And this is true regardless of what type of medical proceedure you are having done. The human factor is always an issue, and by keeping a close eye on what is going on you stand the best chance of getting the quality of care you need.

At the moment there are so many changes in the technology used and the process of therapy after the surgery you need to be there every step of the way. The whole process of lengthening is somewhat new. Most of the things they are doing now weren't even possible 5 years ago, so no matter where you go you tend to be on the cutting edge unfortunately. Every case of PFFD is different, and each person heals at a different rate it will take several more years until they perfect the process to cover most of the possibilities.

As far as the surgeon being a small part of the process that may not be totally true. In our case the word of Dr. Paley is law, and that applies in every step of the follow up care. We see him every 2 weeks for checkups, and we also go to see him directly if anythings looks out of place. The basic stuff like site infections and pain meds can be handled by the P.A., but no major changes happen without Dr. Paley's stamp of approval.

Another point you will want to address is the number of years your therapists have been working with PFFD patients. There seems to be a high turnover rate due to most adults not liking to cause children pain, so make sure you have one who has many years of experience handling specifically PFFD children. In our case we were lucky enough to get Miss Kim, who was McKenna's therapist from her first lengthening 4 years ago, so she and McKenna hit it off right from the start. Having the experience of how PFFD children react to certain types of therapy has saved us tons of time and saved McKenna alot of discomfort as we were told right away who to go see, and what to do. They also can tell by feel what feels right and when to back off to save any additional pain. And when the device isn't moving properly when doing knee bends is a big sign that something needs to be adjusted.

All in all we parents are trying to do what we believe is best for our kids. There doesn't seem to be a "1 process fits all" scenario yet, but hopefully through our efforts we can make things easier for the following children that go thru this. Basically you need to go where you feel you will get the best level of care, and don't let the salesmanship of the doctors fool you. Most hospitals were built to make money, you just need to decide which one gives you the highest comfort level, and in your mind the best fit for your family.

Thanks again everyone for your input, and we will keep checking back when we can.


Chuck, Karla, Dylan & McKenna

My daughter Hailey has been a patient of Dror Paley and the ICll in Baltimore since 2000. Hailey has gained double digits in inches through lengthening with an external fixator. Last year she had the Phenix internal lengthener transplanted in her leg ( a new lengthening technology developed by Dr. Paley and Arnoud Souberian, a French engineer) Hailey has had tremendous success with Dr. Paley. There are certain things out of any doctors control such as healing, mobility etc. Hailey has gone though a lot (she is now 6 y.o.) I thank God every day for bringing Dr. Paley and his staff into our lives. He is the best in the business. There is no better doctor in the world to handle your case than Dror Paley. His staff, knowledge, facilities are top in the world. Let me put it to you a different way. If you needed a heart transplant and had the opportunity for the finest heart transplant specialist in the world to do it for you, you would go to that doctor. Well, Dror Paley is the top Limb Lengthening Specialist in the world. My daughter Hailey is proof.


Your response brought tears to my eyes. I am the mother of beautiful little Eva who was born 2 months ago with PFFD. The discrepancy in her legs is about 1-1.3 inches. She is believed to be a type A. Her lower extremities look good on X-ray, she moves her knee and her hip socket has formed. I am so new to this and of course confused and devastated but after doing ample research we made an appointment with Dr. Paley for February. Eva will be 3 months old. I have read articles which claim that Dr. Paley "steals cildren's childhood years" and that he is a dreamer. I do not believe this. I have complete faith in him Do you have any more information on the internal lengthener that was transplanted in your daughter's leg? I could not find anything on the internet. Any information would be greatly appreciated. thank you!

how is hailey?!?! i am in school in fl right now... so its been a fun freshman year! what has been going on with yall? i would love to talk to yall soon! email me... its and give me an update!! give hailey a hug for me!

I personally think you need to check out both (and probably more) and go with your gut on this. Sami was born with a type D PFFD. When we saw Dr. Paley, he told us exactly what it would be case...and, for Sami, it was too much (for our comfort). But, each case and each family is unique. When you do see him, take lots of notes. You have lots of time to make a decision and do more and more research. And when you do make your choice, when it's made out of love for your will be the right one. Good luck!!


i have been with paley for 15 years now and have been through all the ups and downs bone lengthening has to offer. if you have any questions, please just ask!! we have lengthened 17 inches so far and have a little under 5 to go... hope all is well and hope to hear from you soon!

I have a 6 yr old boy who has bilatteral porsthesis. I took him to several different hospitals, doctors. well u know. At the time I lived in Wyoming. The Shriners was who I went with in the end. They paid for my transportatin, my food, hotel, and all. I love the Shriners. I now live in Ohio, and atleast once a month take a trip to Lexington, Ky for the porstetic clinic. I do believe they work magic. Thanks to them my son is now walking. And this summer he will be playing t-ball and soccer. It is a long hard road. But in the end it is all worth it when you see your child takes his or her first steps. Any other ?'s feel free to ask.
Kevin and Melissa Davis