Second Opinions

Hello everyone!
My two month-old son Kinnick was born in March with unilateral PFFD of his left leg. His left femur is about 50-60% the size of his right and he has no left fibula and a slightly short tibia. He also has a club foot due to the absent fibula. But he does have a hip joint ball and socket. We live in Northwest Iowa and had an initial consultation in Sioux Falls, South Dakota with Dr. Haft, who we really like. However, I am concerned about his experience with PFFD. He does not think that lengthening is an option. Initially he talked about Syme amputation and knee fusion as well as Van Ness rotation either to occur when Kinnick is around the age of three. However, later via a letter, he told us that Van Ness is not a likely procedure due to the absent fibula. He also told us that we could get a second opinion, but he didn't think anyone would tell us anything different. We have another appointment with him scheduled for October and are just waiting until then.
Anyway, we have now decided to get at least a second opinion and are looking for good, experienced doctors in this area. We live in a small town in NW Iowa. Omaha, NE is about 2-3 hours away, Minneapolis (Shriners) is about 4 hours away, and Iowa City is about 5 hours away. We live a good 8-10 hours from Chicago and a definite plane ride from Maryland where I have seen others post about the good, experienced doctors there. Does anyone know of doctors in these areas or have any doctor info they can give us? How have others gone about getting second opinions?
I was also wondering if anyone has a child with similar characteristics of PFFD if they'd be willing to share what treatment paths they took and the outcomes. I love this sight and check the posts regularly. It is nice to be able to read and share stories with others who are going through similar situations.
Thanks for the help!

Shriners Minneapolis

Hello - I have a three year old grandson in Ames, Iowa who has unilateral PFFD (left leg). His is also a very short femur - 60-70% short. He visits Shriners in Minneapolis and got his first prosthesis at nine months. It was simply a "boot" type that he slipped on with his foot pointing down inside. It gave him enough stability to walk - which he was really wanting to do at that time! He's on his 4th device now with the two most recent ones accommodating his whole foot (similar to the Mosley device) where he is able to put weight on it. My daughter and her husband have opted not to amputate and docs in Minneapolis have told them lengthening is not an option - but I'd love to take him to Dr. Paley for a second opinion. In the meantime, he gets along well with a prosthesis which he fondly refers to as his "helper."

Nancy

Missing Fibula and doing lengthening

Just wanted you to know that you can still lengthen without a fibula. We are in Baltimore with our son who is going through his first lengthening (he is 3). We have been here since March 3rd and he has gained 2 inches now. He also was missing 50-60 percent of his femur and has no fibula (just like your son). We have met several families here in the same situation who are lengthening so it can be done!!! I think having no fibula makes it more difficult.
When we first met our therapist in GA a couple of years ago she said the same thing-- without a fibula you can't lengthen. She has been amazed at the progress he has made. They are doing wonderful things in Baltimore!!! Wish you the best.
Staci

How to get a 2nd opinion

For insurance purposes you may be required to have your in-network doctor write a referral. In our case because there was no local doctor with PFFD experience the out of network visits were approved. If you know the physician you want to see you can just ask your doctor for a referral to see Dr. X. and then take it from there. One thing to note - sometimes the insurance company can be self-contradictory. It might be a good time to read the details of your insurance contract. With one insurance company, we had visits that were pre-approved show up later as non-approved or uncovered because of bureaucratic issues. One thing I do when visiting an "out of network" doctor is to speak to the insurance company before the visit and confirm that the visit will be covered. Write down the name, date and time of the person you speak to and the details of the call. Sometimes I've called twice to confirm - once at the scheduling and once at the appointment just to make sure the referral is on file. Being proactive in that way stopped the "this visit wasn't covered" letters.

Doctors in your area for PFFD opinions

I don't know about Omaha, but in Iowa we found Dr. Stuart Weinstein at the University of Iowa Orthopedic Center to be a good resource. He's a specialist in pediatric orthopedics and one of the doctors from whom we felt got good advice. He's not a specialist in PFFD but familiar with enough different options that we didn't feel like he was pressuring us to go any one particular way. In Minneapolis I'd suggest talking to Dr. Dahl at the Gillette Children's Hospital and perhaps others at the Gillette Children's hospital as well. Dahl is a surgeon who specializes in lengthenings and we felt he gave us good advice. If you can get a day where the hospital is doing prosthetic team reviews (I can't recall the exact term) you can be seen by a roomful of specialists all at the same time, physiatrists, prostheticists, othoticists all looking at your son at the same time and discussing options. We found that to be helpful but be prepared for lots of questions. I would highly suggest talking to a physiatrist - that's a kind of doctor who specializes in the rehabilitation techniques that will be helpful whether or not you opt for surgery. Both of the physiatrists we've spoken to have been excellent resources perhaps because they are doctors who often assist on surgeries but also are intimately involved in the long term follow-up care that is involved in both surgical and non-surgical approaches.

But in reading your comment about a missing fibula - I don't think I've heard of any family with a missing fibula doing a lengthening or van-ness. If there is a person who can contradict me here - please do so. I have met with a family in Iowa who I think had PFFD and no fibula - their daughter is now in high school and opted for a slip-in, toe-down prosthesis, no amputation or even a symes amputation.

Good Luck!

missing fibula

My daughter was born with PFFD and a missing fibula (smaller bone) in the same leg. She will undergo lengthening in about a year. The doctors have told us that it's not a problem to lengthen without a fibula.

I stand corrected

That's good to know. I guess fibular hemimelia can be for complete absence of the fibula also.

2nd opinion...

I think it is wonderful that you are researching all of your options. As you can see on this site there are many options available, and hopefully you will find the one that best suits your family. Our daughter McKenna was born with a different type of PFFD but we also went searching for answers back in 1997. We live in Minnesota and our first visit was with the doctors here, but we didn't get the answers we needed so we then contacted Shriners and tried to get help there, but back then the thought we were just looking for a referal and were confused by our questions. From what I hear now the Shriners are more involved with orthopedic treatements like this, so I definately would look there. We ended up after all our searching going in for a consult in Baltimore. It was there that all of our questions were answered, and an exact time table for treatment was setup. It was our comfort level and confidence in the doctors there that made us do the long distance treatements that were needed, and so far so good. Basically you will want to interview each doctor in person, speak to his/her patients who have already undergone the treatments, and when you are ready you can choose the one that has your child's best interests at heart. And don't be afraid of taking your time either... All of the information we have to date suggests that PFFD patients have bones that have delayed ossification, and they harden into bone slower than normal. We had to wait until McKenna was almost 1 year of age for her bones to fully show up on Xrays so we could see what we actually had to work with. That plus the treatment options seem to advance at such a fast rate that what wasn't possible for us not even 10 years ago is common today. Well, I hope my ramblings help some, but if you want you can email us at ChuckBerg@msn.com, or call us collect at (763)494-8823 and we will do our best to help. Good luck, and God bless!!

Sincerely,

Chuck, Karla, Dylan & McKenna

Second Opinion

DEFINITELY DEFINITELY DEFINITELY get a second and maybe third opinion. My daughter is also two months old - so we are in the same boat. We just returned from Shriners in Greenville, SC and were very impressed. Pediatrics Orthopedics is ALL they do, so they are quite experienced. In addition, they were quite insightful on the emotional side as well. They were very sensitive to our fears and need for LOTS of information. They also offered to provide us with some phone numbers of PFFD families.
Good luck!

Shriners

If you are interested in seeing a doctor at the Shriners in Minneapolis, I know they provide free transportation to the hospital.

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