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Subject:
Macrodactyly - search for a surgeon
Category: Health Asked by: corkie43-ga List Price: $75.00 |
Posted:
09 Jan 2005 13:56 PST
Expires: 08 Feb 2005 13:56 PST Question ID: 454646 |
I am looking for a surgeon who can help my 1 year old infant. She was born with and enlarged middle finger - right hand . It is called macrodactyly. She has already had two surgeries by Dr. Christian Sampson in BostonChildren's Hospital Neither were very helpful. I would like to also to speak with other parents who have had this done. Im sure it is very rare,though |
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There is no answer at this time. |
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Subject:
Re: Macrodactyly - search for a surgeon
From: david1977-ga on 09 Jan 2005 17:29 PST |
I am sorry to hear about that. I have located the nest information that I can on this subject. If these are nothing like what you are looking for let me know. And I will see if I can find more on the subect. Story about a girl who had macrodactyly on her foot. http://news.bbc.co.uk/2/hi/health/3604796.stm Doctor in California who Is very knowledgable on the subject. http://www.saintfrancismemorial.org/index.asp?catID=ps&pg=jointcenter_doctortscv Proteus syndrome foundation http://www.proteus-syndrome.org/index.htm Please Note: Additional information on this disease may be available from the Genetic and Rare Diseases Information Center (GARD). Information specialists can provide for free assistance in obtaining the information you need. GARD is supported by the Office of Rare Diseases in partnership with the National Human Genome Research Institute, both of the National Institutes of Health. GARD can be reached at 888-205-2311, 888-205-3223 (TTY), or by e-mail GARDinfo@nih.gov. http://ord.aspensys.com/asp/diseases/diseaseinfo.asp?ID=8529 Another story of a child with macrodactyly http://www.texnews.com/1998/1999/local/baby0706.html |
Subject:
Re: Macrodactyly - search for a surgeon
From: david1977-ga on 09 Jan 2005 17:35 PST |
The Department of Plastic and Reconstructive Surgery at Good Samaritan consists of a distinguished group of plastic surgeons who have been trained in some of the finest programs in the country. These physicians evaluate and treat any physical deformity that can be corrected by surgery, whether acquired or congenital. The Department works in collaboration with other specialties at Good Samaritan to offer total patient care. A plastic surgeon is on call twenty-four hours per day to respond to emergencies and trauma that may require their expertise. These specialists provide excellent treatment in immediate reconstructive surgery of injuries and in the closure of soft tissue wounds. http://goodsamaritan.chsli.org/services/detail/Plastic_and_Reconstructive_Services.html I would look into some foundations as well as within your community for donations. Distributing jars to collect money in is a good idea along with asking your church if you attend for some donations. You could also contact companies and request doantions. To increase your chance of recieving donations it is always a good idea to spread the word. And if you can get your local press involved that would be great. As I assume considering the prices of these operation, that you may need some help with the finaces of this. |
Subject:
Re: Macrodactyly - search for a surgeon
From: livioflores-ga on 10 Jan 2005 07:33 PST |
I found an interesting article from Complejo Científico Ortopédico Internacional ?Frank País?, Ciudad de La Habana, Cuba. This article describes a succesfull treatment to a baby of 8 months with a similar problem that you describe for your 1 year old infant. Unfortunately the article is in spanish, but I am pretty sure that you will find someone who can translate it to you. The article is: "Transposición digital en el tratamiento de la macrodactilia": http://www.bvs.sld.cu/revistas/ort/vol16_12_02/ort11202.htm The info that I found that would let you contact these doctors is: Complejo Científico Ortopédico Internacional ?Frank País?. Ave 51 No. 19603 entre 196 y 202. La Lisa, Ciudad de La Habana, Cuba. Prof Dr Rodrigo ALVAREZ CAMBRAS Calle 18 no. 505,entre 5ta y 7ma, Playa HAVANA Fax: +53 (7) 201 9496 See also this page that gives an email address for Dr Alvarez Cambas: http://www.excelencias.com/articulo.asp?rev=ex&edc=Esp2_Ing&art=716 Try also to contact Servimed, they offer medical services for foreigns in Cuba, and they could contact you with the "Frank Pais" Complex: DIRECCION GENERAL: Calle 43 No. 1418 entre 14 y 18; Miramar, Playa, Ciudad de La Habana, CUBA Teléfono (537) 24 4811-13 Fax: (537) 24 1630; 24 2948 DIRECCION DE TURISMO DE SALUD. Calle 18 No. 4304 e/ 43 y 47; Miramar, Playa, Ciudad de La Habana, CUBA Teléfono (537) 24 2658; 24 2023 Fax: (537) 24 1630; 24 2942 I hope that this helps you in your research. |
Subject:
Re: Macrodactyly - search for a surgeon
From: livioflores-ga on 10 Jan 2005 07:38 PST |
Hi again!! In the article mentioned in my previous comment there is a Summary or Abstract in English: "Summary The case of a patient suffering from progressive macrodactyly of the third finger of the right hand diagnosed at birth without hereditary or teratological antecedents is presented. Surgical treatment consisted in the ray amputation of the third finger of the right hand and transposition of the index finger to the base of it by Peacock?s modified technique. Consolidation was attained 4 weeks after surgery. She was able to make all the movements of the fingers with maximum amplitude at 9 weeks. There were no postsurgical complications. On the 18th month, she had no relapse and she carried out all her activities with excellent strength and precision in the movements." |
Subject:
Re: Macrodactyly - search for a surgeon
From: mkmkbear-ga on 15 Feb 2005 23:57 PST |
Wow! I was happy to see your posting. My 2 1/2 year old son also has macrodactyly of his right hand. He had two fingers separated at 5 months, and now he is going to have to have his middle finger amputated. We are now consulting with Shriners Hospital in Portland, Oregon. My husband and I would also like to speak with other parents who have gone through this, or are experiencing it. We are holding off on the surgery until we can get a second opinion and also speak with other families. I know, however, that it will have to be done. Although his middle finger is by far the most affected, his index and ring finger are also somewhat enlarged. Our doctor hopes the amputation will also help these fingers to cease growing so large. Please e-mail me. I look forward to speaking with you, and so does my husband. Thank you, Kimberly and Michael kmboys2@msn.com |
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