PFFD VSG2 - Long Term

older bilateral PFFD

merrymary — Sat, 18 Jun 2011 20:41:14 +0000

HI! I'm a female , 3'10" with bilateral congenital absence of femurs, patellas, and illiums. I stopped using prostethics years ago, as I couldn't handle them. I'm getting incontinence from a 'dropped bladder' My urogynocologist isn't sure how to insert a 'sling' with all my missing bones. She inserted needle in my ankle to thread up toward my heart but at my waist, it went in directions she didn't see before and stopped. Does anyone have suggestions on how I can get a 'sling' proceedure. Thanks for any help you can give me.

PFFD:

Long Term

Genetic link...If I have PFFD what are the chances I will pass it on?

aerynnisquared — Wed, 10 Feb 2010 00:36:26 +0000

Hi. My name is Aeryn and I'm 22 years old. I have been in a committed relationship for 2 years now and though I am not getting married or having children anytime soon I was wondering if anyone could give me information on the genetic ties of PFFD. I was born with PFFD in 1987, had four leg lengthening procedures, countless surgeries and my legs are the same length (as of July 2007). I have always been very scared that I will pass on PFFD to my children and have thus always wanted to adopt instead of taking the risk. My boyfriend would like to have biological children and I am warming up to the idea but haven't researched it enough. Can anyone give me some advice? Has anyone researched this to any extent? Or are you a mom who has a child with PFFD, maybe you could tell me what doctors told you about it. Or if you have PFFD and have had children, how are they?

Thank you!
Aeryn Nini
Detroit, MI
aerynnisquared@hotmail.com or post on this forum please!

PFFD:

Long Term

Sophie's First Surgery

Verenice — Mon, 22 Dec 2008 18:59:40 +0000

Hi everyone my daughter Sophia is 3 years old and she has pffd. She has her left leg smaller then her right. After the doctors gave us the option of leghtening vs amputation we chose leghtening. Now that she is 3 were are going to start with her fist surgery, which to straighten her left femur. She is going to be in a Spica cast for 6 weeks, and I just wanted to get some suggetions or experiences from people who had them or on their children.

PFFD:

Long Term

Finincial Aid in PFFD

Sonia — Mon, 03 Apr 2006 08:17:07 +0000

Dear all ,This is Soni again , 30 years old with pffd , As there is pain and swelling in my good leg yet and I want to immigrate to canada and my life will be new , and doing work is hard to me , I want to ask is here any chance for me in Canada to get financial aid ?
Thanks a lot for your reply,

PFFD:

Long Term

Transplant

Sonia — Wed, 21 Dec 2005 05:17:04 +0000

Dear All,
This is Sonia , when I was born I had a
problem in my one of my legs : Proximal Femoral Focal
Deficiency (about 50 cm) and now I am 34 years old .I use brace and I havent had any pain till now ,but recently I had joint effusion in the knee of normal leg and it had made me sad as it had been taken for 5 months till now and Doctor said me there is a very tiny extra bone on the upper part of my knee and it makes pain ,I am not sure if can I remove this tiny bone through laser - theraphy or not ? so I want to know is there any chance for me to transplant my leg or is there any other way ?
Thanks a lot
Sonia

PFFD:

Long Term

Osteoarthritis - a quick question for the group.

rar — Thu, 01 Dec 2005 03:53:44 +0000

We were noticing that dysplastic hips seem to be common in PFFD. (e.g. the top part of the femur moves up and away from the femoral head and the acetabulum). This can cause the top part of the femur to carve out a new hip joint higher than where it would be normally. We were wondering if anyone in their mid-twenties (or older) has had osteoarthritis develop who did nothing surgically and/or had something done surgically. We are wondering because there doesn't seem to be any literature regarding this and we are meeting with a surgeon in 2 weeks or so to to discuss options for our nearly 3-year-old.

Thanks!
rar

PFFD:

Long Term

A homemade DVD of McKenna's progress with PFFD

ChuckBerg — Mon, 26 Sep 2005 15:45:44 +0000

Hello from Minnesota!!!

We recently have finished making a 2 dvd set showing McKenna's progress being treated for PFFD. These disks are the 4th version of this documentary that we have been sending around the world to families looking for information about PFFD. Now since we are not movie making professionals they are not the greatest as far as visual quality, or editing, but they do show McKenna before any treatment was done, then they show her after her first couple of surgeries to fix the "Bend" in her thigh bone. Then we included a video of McKenna at a doctors convention about PFFD which shows her initial xrays and Dr. Paley giving a brief description of her plan for treatment. After that we finish up with an interview with McKenna and show her today, at 8 years of age, after her 2nd lengthening. We also included 2 documentaries that show the lengthening process. These were done by news companies and they do show other cases of lengthening that don't involve PFFD, but the information shown is very useful, so we left those in too.

We made these disks to show families how things progress, and how our little McKenna talked, played, and felt during the ordeal. It is one thing to read about all the technical information, but sometimes a picture speaks a thousand words. Most parents just love the fact they can see that a child with this condition still walks, runs, laughs, climbs, plays, and overall is very happy. We will say that as time passes the technology used for limb lengthening changes quite rapidly, and each case of PFFD is different, so what you see on the tape may quickly be outdated, but the overall idea is the same.

Just email us your home address to ChuckBerg@msn.com, and we will mail you out a copy of the disks. We do apologize for the quality, as over time some of the VHS tapes we used for the initial copies have degraded a bit, but you will still get the basic information you are looking for. Our hope is that by sharing our story we can make things easier for parents and children that are new to PFFD. Combined with this wonderful website that has helped people from all over the world to get information, we hope that all children with PFFD can get all the help they need to live happy and healthy lives. We wish you all the best, and look forward to hearing from you soon!!!

Sincerely,

Chuck, Karla, Dylan & McKenna

PFFD:

Long Term

Adult treatment

Cindy Hammond — Sat, 16 Jul 2005 20:41:01 +0000

Hi,

I'm interested in finding anyone with any experience dealing with adults with pffd. I am a unilateral, treated with Symes, fusion and left AK. I have no idea what Aitkens rating I am. My left hip was a mass of fused cartilage when I was born. I was treated at Mary Free Bed Clinic/Blodgett Memorial Hospital in Grand Rapids MI, now known as the Center for Limb Deficiencies. At age 7, I underwent 2 surgeries; the first, Dr. Charles Frantz literally sculpted a femur head and a hip socket out of the cartilage, in the second he fused the femur and tib/fib together with a plate. (I had many other reconstructive surgeries, but these are the pertinent ones)

Long story short, I recently injured that left hip created so many years ago, displacing the femur head in the socket. 4 months later I still have significant pain and edema in the joint. My prosthetic doesn't fit properly. I am desperate to find a doctor willing to treat my condition so I can get back to my usually active life of bicycling, skiing, kayaking, hiking, etc.

I live in Massachusetts but am willing to travel for treatment. Most of the physicians and surgeons with experience in the condition treat children exclusively, other orthopedic surgeons are afraid to treat the injury because it isn't a "normal" (it is to me!!) hip.I am stuck - please reply with any suggestions.

PFFD:

Long Term

Long Term Wellness Study

rar — Wed, 23 Mar 2005 18:24:24 +0000

Hello everyone,

I was talking to our prostheticist and asking about outcomes vs treatment and he said that there were no long-term wellness studies for PFFD. I was thinking that this is something we should do. This would be a long term project, but I think the parents of PFFD would be up to it.

I've done wellness database projects for some hospitals in the past so I feel comfortable dealing with issues of de-identification, HIPAA, etc. What we need - if we want to do this - is to survey doctors and prostheticists to see what fields, forms would be good to have. Pain scale, flexibility, mobility, and adverse events are all some of the things that I can think of off the top of my head.

This study would probably be finished be too late for our daughter, but I think
it would be valuable for future childred with PFFD.

We'd look at prosthesis vs surgery vs type of PFFD. One thing I think we'd need to do is expand the PFFD classification system. The A,B,C,D Aitkin system is way too limited in my opinion.

PFFD:

Long Term

Lengthening vs Outcomes ?

rar — Mon, 13 Oct 2003 07:33:00 +0000

Are there any people out there who have had a lengthing and are now adults (25+ yrs)? How have things gone?

PFFD:

Long Term