The PFFDvsg contains two main sections - this PFFD Information page and the PFFD virtual support group page. This information page will be a collection of articles that I think will be helpful for PFFD parents. It will also have all my links to other resources on the web. For stories and help from other parents, please go to the virtual support group page.
Required Reading (ok, maybe not required, but HIGHLY RECOMMENDED!)
PFFD: A Parent's Guide | My best attempt to explain PFFD in plain english. |
Welcome To Holland | Don't be confused by the title. Written by Emily Perl Kingsley (a writer for Sesame Street). |
Things To Remember | A doctor's advice for families of children with amputations. |
The Best Right Answer | A wonderful story from the mother of a child being treated with limb lengthening. |
Lengthening Reconstruction Surgery vs Prosthetic Replacement Surgery | While we all hope for lengthening, it just isn't right for some patients. Dr. Paley describes some of the pros and cons of lengthening and prosthetic treatment. |
Caroline's PFFD Site | A WONDERFUL site with personal stories about growing up with PFFD and finding Dr. Moseley's PFF-Device. Lots of great pictures and even some movies. Thanks for sharing Caroline. |
The PFFDvsg Links - The links page has links to all of my favorite PFFD web resources. Links for Shriners, Maryland Center for Limb Lengthening, Medline searches, prosthetic info, other support groups, etc.
(Click here for long version with descriptions and ratings.)
PFFD Research by Janet - good summary paper and list of references
Management of Leg Length
Inequality - link to Medscap site (need free id and password)
McCarthy, James and MacEwen, g. Dean, 2001
Lengthening Reconstruction Surgery for Congenital
Femoral Deficiency
Paley, Dror, 1997
PFFD: A Congenital Anomaly A Symposium, National
Academy of Sciences, 1969
Aitken, George T. and others, 1969
PROXIMAL FEMORAL FOCAL DEFICIENCY-DEFINITION,
CLASSIFICATION, AND MANAGEMENT
Aitken, George T., 1969
SOME CONCEPTS OF PROXIMAL FEMORAL FOCAL
DEFICIENCY
King, Richard E., 1969
THE MORPHOLOGY, NATURAL HISTORY, AND TREATMENT
OF PROXIMAL FEMORAL FOCAL DEFICIENCIES
Amstutz, Harlan C., 1969
THE SURGICAL AND PROSTHETIC MANAGEMENT OF
PROXIMAL FEMORAL FOCAL DEFICIENCY
Hall, John E. and Bochmann, Dietrich, 1969
PROXIMAL FEMORAL FOCAL DEFICIENCY-A REVIEW
OF TREATMENT EXPERIENCES
Westin, G. Wilbur and Gunderson, Finn O., 1969
Alternatives to Surgery in the Treatment
of Proximal Femoral Focal Deficiency:
The Patient Friendly Functional Device
Moseley, Mark R., 1999
Note: If you disagree with any of my ratings, please send me a note and explain. I'm always open to changes.
PFFD Research by
Janet - good summary paper and list of references
Size: External Link, Rating: Strongly Recommended
Management of Leg Length
Inequality - link to Medscap site (need free id and password)
McCarthy, James and MacEwen, g. Dean, 2001
Size: External Link, Rating:
Lengthening Reconstruction Surgery for Congenital
Femoral Deficiency
Paley, Dror, 1997
Size: 58K, Rating: Strongly Recommended
Everyone asks us about limb lengthening and who is the expert. We honestly don't know, but it appears that Dr. Paley is on the cutting edge of limb lengthening and reconstruction. This paper is very technical and I got pretty lost at times, but it does explain the treatment options available for different classes of femoral deficiencies. I particulary liked the Abstract, the Age Strategies, and the LRS vs PRS discussion at the end.
PFFD: A Congenital Anomaly A Symposium, National
Academy of Sciences
Aitken, G.T., 1969
National Academy of Sciences Symposium
Size: 5K Rating: No rating - see rating for each contributor
A symposium on PFFD at the National Academy of Sciences in Washington, D.C. on June 13, 1968. Dr. Aitken was the overall editor and was also one of the 5 contributors. The other contributors were King, Amstutz, Hall and Bochmann, and Westin and Gunderson. See each author for a description of their section.
PROXIMAL FEMORAL FOCAL DEFICIENCY-DEFINITION,
CLASSIFICATION, AND MANAGEMENT
Aitken, George T., 1969 Part 1 of 5 of National
Academy of Sciences Symposium
Size: 34K, Rating: STRONGLY RECOMMENDED
If you have a child with PFFD you've probably heard the term Class A, Class B, etc, or you will soon. Those classes refer to the Aitken Classification System. In this paper, Dr. Aitken describes his 4 class classification system and treatment options for unilateral and bilateral cases in each class. He also includes several case presentations.
SOME CONCEPTS OF PROXIMAL FEMORAL FOCAL
DEFICIENCY
King, Richard E., 1969
Part 2 of 5 of National Academy of Sciences Symposium
Size: 24K, Rating: Very technical, difficult to read
Significant point in this paper is that King proposes that if acetabulum is visible at birth the femoral head will develop. He also describes treatment options for the 4 Aitken classes and presents several cases. Otherwise, I found it difficult to read and frequently hard to understand.
THE MORPHOLOGY, NATURAL HISTORY, AND TREATMENT
OF PROXIMAL FEMORAL FOCAL DEFICIENCIES
Amstutz, Harlan C. , 1969 Part 3 of 5 of
National Academy of Sciences Symposium
Size: 45K, Rating: Recommended
Dr. Amstutz describes his 5 class (with 6 subtypes) classification system and presents limb growth data based on 68 patients. Excellent section on treatment of leg-length inequality.
THE SURGICAL AND PROSTHETIC MANAGEMENT OF
PROXIMAL FEMORAL FOCAL DEFICIENCY
Hall, John E. and Bochmann, D., 1969 Part
4 of 5 of National Academy of Sciences
Size:24K, Rating: Recommended
Brief description of PFFD followed by a very detailed description of how to fabricate a Van Nes prosthesis.
PROXIMAL FEMORAL FOCAL DEFICIENCY-A REVIEW
OF TREATMENT EXPERIENCES
Westin, G. Wilbur and Gunderson, Finn O., 1969 Part 5
of 5 of National Academy of Sciences
Size:36K, Rating: Recommended
Very good review of treatment experiences of 165 PFFD cases at Shriners Hospitals. Includes 10 tables showing treatments and results. Only drawback is the age - covers cases from 1931 to 1968.
Alternatives to Surgery in the Treatment of
Proximal Femoral Focal Deficiency:
The Patient Friendly Functional Device
Moseley, Mark R., 1999
Size:16K, Rating: Recommended
Good summary of the treatment options, with emphasis on the one that is most often overlooked - no treatment. Dr. Moseley describes the benefits of his device that can be fitted over the foot with no surgery required.
DuPont
Case Study
info to be added....
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