PFFDvsg

PFFD Information


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.


PFFD Medical Info (brief version - no descriptions or ratings)

(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

DuPont Case Study


PFFD Medical Info (long version - with descriptions and my ratings)

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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