Help?

We decided on the Moseley-type device and our daughter is nearly 4 also.

If you can, I would get a few opinions from different doctors. We did and the range of opinions for what to do varied. If I were you I'd ask your doctor if he plans to do the rotation through the knee or the femur and if the latter, where on the femur in relation to the attached muscles. I'd also ask about how often de-rotation occurred in his previous patients and if you could talk to a few of them.

What I found was that the best advice came from specialists who dealt with many PFFD cases per year and already established (e.g. were not intent on building up their resume or promoting an agenda). Although each PFFD case is unique and we may not have had a representative sample - I found that younger doctors with less experience tended to recommend a surgical approach with which they were comfortable and those with more experience had a more balanced view of surgical and non-surgical treatments.

In my experience Shriners in Chicago was good (Dr. Ackman), Minneapolis Gillette Children's Hospital was good (Dr. Dahl). We also saw a good orthopedic specialist in our home town - but he didn't have a lot of PFFD lengthening experience and was good enough to refer us to others who did. All the physiatrists we spoke to were excellent and if you can get to a physiatrist I'd HIGHLY recommend it. We also talked to many prostheticists and orthotists.

The prostheticists who preferred the Van Nes spoke at length about how in their experience you don't get bone spurs with the Van-Ness like you do with amputation and that it is stronger than an amputation. The Doctors who dislike the Van Ness (one even said he no longer does them because of negative outcomes) said that de-rotation is common and can lead to weakness, multiple surgeries and other negatives. People who promoted the Moseley-device talked at length at how many of the Van Ness surgeries had much worse outcomes than doing nothing or how lengthening surgeries could sometimes lead to nerve damage and loss of function of the leg.

Sometimes if felt like the old saying "If all you have is a hammer - the world looks
like a nail" but by getting enough opinions I think we were able to make a good decision.

So why did we go with a Moseley-type device? Because it is awesome and because our daughter has the bone/foot structure to make it possible. It doesn't slow her down at all. Lengthening for us was at the upper limit of what is technically feasible and even if it was possible it would be years and years and years of pain. If you get a chance to see the 20/20 show of kids doing physical therapy after PFFD lengthening - you'll know what I mean. And finally also because - with the lift - PFFD for our daughter is essentially a non-issue. She puts it on and then runs around.

Good luck

I wish there was some magic wand that would take all the guesswork out of this, but I'm afraid there isn't one. After you read our posts you will have to visit with the doctors for each option, then when you find the one you feel the most comfortable with you will have to just trust your heart, and do what is best for you, your daughter, and your family. Basically let go, and let God as they say.

Each family is different, and each family has a different idea of what the facts are, and how they apply to their child. The other thing is that each case of PFFD is different too, so the most important thing to do is get all the research done you can before you make your final decision. There will be days of very high stress and emotions while you try to figure all of this out. And sometimes the facts and get mixed up, or even completely blocked out when you are struggling to understand everything. My wife and I strongly recommend bringing a tape recorder to every doctor visit. We have found that having a copy of what the doctors actually say comes in handy. There have been a few times where certain words come up, and you are so fixated on what questions you want to ask and how you want to respond to the doctors statements that some information can get mixed up or even missed entirely. Having the tape to fall back on has saved us several times. Also have your questions written down in advance if you can, that way nothing gets missed.

Our daughter McKenna has had two lengthenings of her right thigh bone, and so far so good. She has gained just over 6" in length so far, and she rides horses, climbs, runs with and without her "super shoe" on, and basically is your average little girl. She is 9 years old, and she does well in school and quite a few nice friends. There are some things she cannot do easily, but she seems to know what those limitations are, and tells her teachers and us what she is and is not comfortable doing. We just try to make sure she doesn't use her leg length keep her from trying things we really think she should try. We make sure we are close so she feels safe, and if she likes it great, if not, we move on. Unfortunately her next big plan is to give up playing piano, and move to playing drums....God help us....

Should you choose lengthening there is important physical therapy Monday thru Friday that has to be done while you lengthen, and there are some very painful moments during that therapy where they bend her knee to stretch the muscles and tendons to keep everything working. We have read in some posts that there are years of pain involved in lengthening which is not exactly what we experienced. In our case it was only during physical therapy, and it usually was over about 5 minutes after the "big knee bend" as McKenna called it. There was occasional nite pain but usually we gave McKenna some pain meds before bed and that worked well. It is extremely important to do the exercises every day, and to do them exactly as they show you. If you don't you will have more work later trying to regain the lost range of motion in the knee than you had to do in the first place. There also is the occasional pin site infection which has to be dealt with by giving antibiotics, and daily cleaning of the pins sites. Any time you have a medical procedure done there are always little details that can and do come up, so you will be busy keeping everything an eye on everything while you do this lengthening procedure.

It is hard watching your child go thru the painful moments, but our thoughts have always been that technology will catch up and improve, and in our case there wasn't any other major problems than the short thigh bone, so we decided that for us the ends would justify the means. Some of the other options made changes to the knee, or the foot, or both that would later render them useless, so worst case even if amputation was the only option we had to give it our best shot. Basically that is what this all boils down to. As a very good friend once told me, you have to choose your "best right answer". That answer is what you feel is best for your daughter, and your family to live a happy, full life together.

We would love to help in any way we can. If you would like to talk to us directly you can call us collect at (763)494-8823 and both my wife and I would be glad to share all the information we have. She says I stick to the more technical stuff, while she specializes on the emotional side, so together we should be able to answer most of your questions. Also, we have had families come and meet us in person, both at home here in Minnesota, and during our visits to Baltimore, Maryland. If you would like we can chat and try to figure out when our next visit in Baltimore is, and you can try to setup your consultation for the same time so you can meet McKenna and talk with her in person. Or if email works best you can drop us a line at ChuckBerg@msn.com and we will do the best we can to answer all of your questions.

Well, we hope this helps, and we hope to hear from you soon!!!

Sincerely,

Chuck, Karla, Dylan & McKenna