Difficult decision

I want to explain my complicated situation. I have great worry and I do not know what to do. In recent times, my AVM grows very fast. I hardly hear anything in my left ear because the AVM press the ear canal. My left eye is becoming increasingly closed. At first, my AVM was only in my tongue.The AVM already begun to reach the right side of my face. The doctors have suggested that sessions take low-dose radiation therapy. They think that ,over time, the major veins and arteries are to be closed for the radiation. A couple of weeks ago, a doctor gave me the opportunity to remove 100% of the AVM and then make a face transplant, jaw, tongue … Now, Only 13 have facial transplants are made in the world. My transplant would be the greatest made today. It is a very complicated operation, with much risk. Then there is the possible rejection, having a new face, a post-operation phase that can last about 2 years to be fully recovered, take immunosuppressants for life. As the doctors say that I can not prove radiotherapy and then operate as both radiation damaged tissue then becomes very complicated surgery. My wife and I are very worried and do not know what decision to make

I can understand this is a very difficult decision for you at this time. I wish i could give you advice but i am not a professional in this field.

My only advice is to talk with your family and loved ones and get the answers from there. As far as rejection with having a new face…i wouldnt care too much what others think as this is your health & life.

I can only pray for you my friend & wish you the best of luck & health in whatever decision you make. God bless you brother.

This is only my opinion,Making a decision on this surgery can be very difficult, but you have to weigh the pros and cons. Do you want to keep losing your hearing and also suffer with more AVM’s. After a while you start feeling like your not even living, hating life because you aren’t getting any better.
Today the doctors can do so much more for us medically, its unbelievable. What a wonderful opportunity this doctor is giving you. If you are going to do it, do it now while you are still young enough. Because you would hate to regret it later.
As far as recovery with any AVM its takes a long time to recover with any AVM. My doctor said that it could take up to five years to fully recover. Its been three years now and I feel pretty good. Hopefully this doctor comes highly recommended, you might want to do some research on his background and check him out. Make sure you have family members by your side willing to support you and ask a lot of questions when you are in hospital. Family must not feel intimidated by nurses or the doctors. I hoped this helped some, good luck to you and your family.

this is really terrible. I knew at the moment not what I would do. the risks of radiation compared with the risks associated with the op? which the drug have side effects? What takes longer? the need to consider everything. write you a list with the pro and con. and listen to your gut feeling! hopefully you make the right decision. hugs

Hi, Luis…While I cannot even imagine how difficult it is for you to make this decision, please know that my thoughts and prayers are with you. Please keep me informed on your progress…Peace! Louisa

Luis, If you already aren’t with this group…I think this group could really help…

http://www.avmsurvivors.org/group/extremityavms?groupUrl=extremityavms&xg_source=activity&id=1543517%3AGroup%3A162264&page=1#comments

HOLA LUIS,LAMENTO MUCHO TU SITUACION…EN REALIDAD ES UNA MUY DIFICIL DESICION,DEJALO EN LAS MANOS DE DIOS Y EL TE DARA LA CONVICCION DE LO QUE DEBES HACER…MI ESPOSO ES QUIEN TUVO UN AVF Y GRACIAS A DIOS TODO SALIO BIEN…PERO CREO QUE EN ESTE MOMENTO ESTAMOS VIVIENDO LO QUE ESTA(BESTIA)COMO DICE HERMES NOS DEJO…MI HUMILDE OPINION ES QUE TE HAGAS ESA OPERACION…YA HOY EN DIA LA TECNOLOGIA ESTA TAN AVANZADA Y LOS DOCTORES SABEN TANTO…CREO QUE VALE LA PENA! POR TI Y TU FAMILIA…TE MANDO UN FUERTE ABRAZO Y MUCHISIMAS ORACIONES…TIENES UNA HIJA HERMOSA!!! DIOS TE BENDIGA Y TE DE LA RESPUESTA QUE BUSCAS!!

I cannot begin to imagine how difficult this decision is for you. My thoughts are with you and your family. All the best for whatever you decide.

Thanks for all your advices and wishes. Next monday the doctor will tell me if is possible 100% resection or not. Only if he can remove the 100% of my AVM then I will decide