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Best Osteosarcoma limb salvaging doctor

mys
Posts: 2
Joined: Mar 2012

My 11 years old daughter was recently diagnosed with Osteosarcoma of the distal tibia. Since it is in the ankle join section, it is very complicated, our bone doctor said he cannot do it and he recommand Dr Temple in Miami, and we also talked with Dr Webb from John Hopkins where we do the chemos, she suggestted amputation which we don't like, is there anybody here had a similiar situation? and has some suggestions on limb salvaging ?

brownpbandj
Posts: 1
Joined: Mar 2012

I'm sorry to hear about your daughter's diagnosis. I can understand a little of what you are going through as my seven year old son had multi-focal osteosarcoma (meaning it was in four places at the same time), and he had exdtensive limb-salvaging surgeries. We saw lots of surgeons in an attempt to find the best, so I can recommend two: Dr. Robert Henshaw at Washington Hospital Center http://www.whcenter.org/body.cfm?id=556712 and Dr. Joh Healey at Memorial Sloan-Kettering http://www.mskcc.org/cancer-care/doctor/john-healey. Henshaw did all four of Mattie's surgeries including: the complete right humerus, the proximal half of the left humerus, the distal left radius (by taking a portion of his right fibia and using that) and his distal right femur including the knee joint. All but the left radius were replaced with a prothesis called Repiphysis technology http://www.wmt.com/physicians/products/oncology/REPIPHYSISExpandableTechnology.asp, so I suggest you explore it to see if it is a possible option. Good luck to you and your daughter and your familiy as the childhood cancer road is a journey that forever changes you.

Mikew418
Posts: 2
Joined: Mar 2012

Sorry to hear about you son, but I was wondering if you could share some info with me. I will be having right humerus surgery is about a month. What was his recovery time ? Range of motion he regained and any other info that you might be willin to share

Thank you

Michael j Wenger

Mjw41851@gmail.com

johnkolivas
Posts: 2
Joined: Jul 2012

Hi,

I'm John Kolivas. My daughter Kalei, 12 years old, was just diagnosed with osteosarcoma in her upper left arm. We are still waiting for the Mayo Clinic prognosis. We live in Honolulu. How's it going with your right arm? Did you find out some information on recovery time? Thanks.

John

osteo_survivor
Posts: 5
Joined: Mar 2012

I am so sorry to hear about your situation. I was diagnosed over 15 years ago with osteo sarcoma of the rt proximal tibia. Mine was so advanced (it was there for YEARS) that doctors were certain they were going to amputate. I was distraught and asked a battery of "what-ifs" until my genius Stanford tumor surgeon came up with the Limb Salvage i have today. Every doctor i see says it is miraculous--there truly is nothing like it. Dr Mohler at Stanford crafted a one-of-a-kind work of art. I have a new knee, no tibia or fibula (a metal rod instead) and lots of pins and screws. if you are looking for a second opinion, he is your doctor. In the process of working out my surgery, there were a few other things that came up to save the bone. I met one of the little girls that this was done for :) I don't know your case, but it may be worth a shot to send over your daughter's records and get a consult.

If you have anymore questions, or want to talk, please feel free to email.

maggiesrich@gmail.com

Best,
maggie

crazy98
Posts: 25
Joined: Dec 2004

Maggie-

That is so great to hear!! I celebrate 13 years May 10th! I had osteosarcoma in my tibia. I had limb salvage along with 2 other knee replacement surgeries. I have started a blog about survivorship if you have time check it out! http://ialwayswantedtoshavemyhead.blogspot.com/2010/10/passing-test.html

AnnChicago
Posts: 1
Joined: Jun 2012

I hope all the treatments went well for your daughter. My 17 years old son was diagnosed with Osteosarcoma of the distal tibia at University of Chicago Hospitals a few days ago. His doctor said that amputation might be needed which we don't like, we asked the doctor about limb salvaging surgery, his team re-studied my son's case, and said that, as the tumor is small enough, they can do the limb salvaging surgery.

susie921
Posts: 2
Joined: Jan 2009

My daughter was seen at the University of Chicago for osteosarcoma. We have moved to Northwestern Children's Hospital, the limb salvage surgeon who was so expert at the University of Chicago is now working at Northwestern's Children's Memorial you could get his opinion. His name is Dr. Peabody and he has been doing limb salvage a long time. Quite the expert. Always get a second opinion, and quickly just call and explain the situation they will squeeze you.

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