glass implants that grow new bone

Beth Reinert — Sat, 05 Oct 2013 18:45:15 +0000

I just read this article. Who knows ... maybe one day pffd patients will have the option of getting glass implants. It's exciting to think about!

"Engineers design glass implant that can grow new bone"
http://www.arcamax.com/currentnews/newsheadlines/s-1379555

Beth

PFFD:

New Research

Zoloft

waylonsmom — Wed, 13 Jul 2011 18:44:05 +0000

Just wanted to put this out there... Research is linking limb reductions to the use of SSRI drugs. Lawsuits are being filed against phizer drug company for the product Zoloft. Scientist have linked this drug to many birth defects including partial or total absence of limbs.

PFFD:

New Research

Super Hip 2

N Coco — Fri, 22 Jan 2010 14:56:02 +0000

Has anyone had the Super Hip 2 surgery with Paley? Dr Paley said my daughter needed the Super Hip 2 wich is a little more detailed than the Super Hip 1. I think he has only done around 10 of these. I would greatly appreciate any info anyone can give me on this.

Thanks!

PFFD:

New Research

Interesting New Bone replacement

rar — Sun, 10 Jan 2010 02:47:26 +0000

I thought the article was very interesting

http://news.bbc.co.uk/2/hi/europe/8446637.stm

I don't know if the new "bone" implanted would "grow" as a person grows. Also there are often also ligament and other issues with PFFD, but it will be interesting to see what will come out of it in 5 years or so which is when they expect human trials.

PFFD:

New Research

iskd nail

alan-irl — Sun, 16 Aug 2009 13:57:20 +0000

has anyone undergone iskd nail lengthening? or has anyone any info on subject

PFFD:

New Research

New Lengthening technique...???

mariuca — Thu, 06 Jul 2006 13:10:12 +0000

Hi, I was just reading and article and it seems as though there is a new procedure for lengthening that is still in the developmental stages that is a plate that goes on the bone and the distraction is done using a small rench through an incision in the skin. Anyone heard of this? Apparently it was talked about at the American Association of Orthopaedic Surgenons this past March. Here is the article:

http://www.baptistregional.com/news/healthscout/?id=531658

PFFD:

New Research

Electrical Stimulation and Limb Lenghting

gratke — Mon, 03 Apr 2006 14:18:10 +0000

Hi, Frank Gratke here, son Kevin, Aitken class D, right leg. Electrical Stimulation(ES) is now being used for spinal cord patients. The electroids are placed directly into the muscles. This allows a stimulation of the muscles in a very controlled envioronment. We have Dr Brain Black here in Milwaukee Wisconsin. We have heard of Dr Randall Betz who does spinal cords and Dr Dror Paley, who carves hips ,out of Maryland called me a few years ago.I am of the believe an Aitken Class D can be surgery corrected if ES is used. If I can get the three doctors talking I believe my son can have 2 legs almost normal.Need some help with this.

PFFD:

New Research

McKenna's progress during limb lengthening...

ChuckBerg — Wed, 01 Jun 2005 20:35:44 +0000

Hello Everyone!!

Our little girl McKenna was born on July 7th, 1997, and was diagnosed with PFFD, class "B", right leg only. Just about 2 months before she was born we were in for a checkup and they did an ultra sound to detect her size as her older brother was over 10 lbs at birth. Everything looked fine, but then the nurse doing the exam noticed something and called in a doctor to confirm her findings. That is when we were thrown into the world of PFFD.

We were shown old black and white photos of children with varying classes of PFFD, and most of those photos also showed other birth issues not related to PFFD. We were shocked, scared, and confused about why this happened to our little girl. One doctor at the hospital did hand us a card for a limb lengthening hospital in St. Paul, MN. and said to contact them once our little girl arrived. We did, and once she was around 3 months old we brought her in for an evaluation.

The doctor there, Dr. Dahl, gave us a tour of his new hospital, told us how far he alone has advanced the limb lengthening proceedure, and how wonderful things were going. He took us to see a patient in the next room who had the Iliizarov device on and showed us how it works, what it looks like, and what his patients outlook was. He then took us back to our room and said "Ok, now we need to discuss the "a" word...." The "a" word??? We weren't quite following him. Then he went on to explain that our daughter's case was too complicated for lengthening, and we should consider amputation early so she will learn to use prosthetics for walking. Wham!! You would have swore he sucked all the air out of the room... This is when we thanked him for his time, and said we would get back to him.

That night I sat in front of my computer searching for answers, typing in anything I could think of using the Yahoo search engine when I finally typed "PFFD" and was directed to the 1 site on the whole world wide web that had any information back then... The PFFD.vsg, and through that site I was able to contact several parents who then contacted me and they shared their stories. One parent, Melissa, (who if you are reading this please contact us as we sure miss you and your family), was a wonderful source of information about a doctor named Dr. Dror Paley who worked in Baltimore, MD. We spoke to her several times and finally flew out for our first visit with Dr. Paley and his team, and afterwards met Melissa and her family and we just knew that was where we needed to be. We had our first prep. surgery which corrected the "bend" in the thigh bone, and also was the first patient to have the "super hip" proceedure done which re-aligned McKenna's hip socket to give her better mobility. This proceedure made what we called a "mini thigh bone" that was straight, but smaller than her other leg. Then in 2001 we had our first lengthening. We gained about 2.625" of new length and McKenna was able to purchase her first pair of shoes without a lift!!!! Since that time we slowly added to her lift until March of 2005 when we went back for our 2nd lengthening at which time she had about a 3" lift on the bottom of her shoe. She calls it her "Super Shoe", and suprisingly it hasn't slowed her down a bit.

All of this leads us to today, June 1st, 2005. McKenna is at the Ruben Institute for Advanced Orthopedics in Baltimore Maryland. This campus is located at the Mount Siani Hostpital, and everything is going quite well. Since we had our first lengthening at the Kernan Medical Center things have changed quite a bit. The progress of the types of devices they are using, and the physical therapy has been amazing over the last 4 years. So far McKenna gained about 1.5" of length, and that would put us on a target of 2.5/3.0" by the time we are done. The physical therapy staff had a major change over in the middle of our stay, but the transition went off without a hitch. The staff monitors every little detail. Range of motion in the hip, knee, leg, ankle and even the toes are watched very closely. They monitor the pin sites for infection daily, and keep a close eye on any nerve or muscle pains to protect from any perminant damage. They even have in house tutoring to keep the kids up to speed with their homework. They swim every day in a specialy made pool to help keep the muscles and tendons loose, and this also seems to help keep the pin sites clean due to the chemical mixture in the pool. Also, they have started schedualing a therapist for an hour a week to also monitor the mental health of the kids also, which we find most comforting. Overall we are very impressed with the quality of care we have received so far.

We have tried to sum up all the info. so far, and as always alot of small details have been left out, but we wanted you to get the basic idea for now. As a famous author once wrote online, you will need to find your "Best right answer" of what works for you and your family. We decided in the beginning that we wanted to share our story with anyone that was willing to listen. We have tried to keep a video diary along the way which we have mailed out all over the world to help people to see another choice they have. We also have tried to post on several websites to also offer our support to families just like Melissa did for us in the beginning. We have met so many wonderful families along the way and have learned so much about them and ourselves on this journey. We won't hide the fact that this proceedure is tough. Tough on you and your child physically, mentally, and financially. For us we had to focus on the fact that these lengthenings were going to be hard, but in the long run it would mean a lifetime of not having to struggle with the complications of amptutation. That is our best right answer for now, and by sharing our story with others we hope to give them the chance to see what options are available. So, if you wish to contact us we would love to share any info. we have. Our phone number is (763)494-8823 and you can call us anytime day or night. You can even call collect. If you are out in Baltimore for a visit feel free to let us know when you will arrive and we will try to setup a time that we can get together and chat. What we have found so far is that talking on the phone or meeting in person seems to help the best. Emails work ok, but when you talk to a live person you get the answers right away to quick questions that just pop up while you are chatting.

Anyways, thanks so much for taking the time to read our little story, and we will work hard to help others to learn from both our victories, and our setbacks to try to make things go smoother for everyone in the future. Good luck, and god bless!!!

Chuck, Karla, Dylan & McKenna
8183 Everest Lane North
Maple Grove, MN. 55311
(763)494-8823
ChuckBerg@msn.com

P.S. You can also contact Dr. Dror Paley's team at 1-800-221-8425 if you like.

PFFD:

New Research

PFFD VSG2 - New Research

glass implants that grow new bone

Zoloft

Super Hip 2

Interesting New Bone replacement

iskd nail

New Lengthening technique...???

Electrical Stimulation and Limb Lenghting

McKenna's progress during limb lengthening...