Does anyone have any experience with this and any resources that you have found helpful? My husband has been successfully treated thus far with 3 embolizations (dural arteriovenous fistula). He's being treated at Jefferson Hospital for Neurosurgery in Philadelphia and we've been very happy with the treatment thus far. He did have cortical venous drainage but that was eliminated through the embolizations. They've done all they can do and are now recommending linac treatment for 3 sites that are too small to embolize.
Any words of wisdom/experience would be most appreciated.
Hi Joy! Definately get in touch with Kim http://www.avmsurvivors.org/profile/Jaclynsmom Her daughter Jaclyn had Linac last year (I think) after two rounds of gamma. And they were also at Jefferson if my memory serves me right! Should be a good match and resource for you.
Shalon: Thanks so much for the referral.... in reading her info, we do have the same doctor....
God bless you for your courage, spirit and stamina...... I will keep your health and vitality in my prayers.....
Joy
Shalon said:
Hi Joy! Definately get in touch with Kim http://www.avmsurvivors.org/profile/Jaclynsmom Her daughter Jaclyn had Linac last year (I think) after two rounds of gamma. And they were also at Jefferson if my memory serves me right! Should be a good match and resource for you.
Hi Joy! Yes! My daughter has been treated by Dr Rosenwasser at Jeff since 2003. She had 1 embo, 2 Gamma Knife treatments, and in April of 2009 had LINAC. Unfortunately in her case, a 2nd avm formed 4 years after Gamma Knife so they treated the 2nd one with LINAC. About 6 weeks after LINAC, she had her 1st grand mal seizure that they say was triggered by brain swelling from the radiation. Please keep in mind that she was 6 when she had her bleed and is 14 now. Treatment and symptoms in children do differ from adults so dont be discouraged. Jeff’s Neuroscience Ctr IS the BEST in the tri state area. Good luck to you and your husband and pleAse keep in touch. Maybe someday we"ll cross paths on the streets of Philly!
I can only imagine your courage and that of your beautiful daughter... we have been very lucky so far.... the worst symptoms Robin has had thus far has been periodic dizzy spells and they have resolved since the cortical venous drainage was eliminated after the 2nd embo. We feel very blessed to have connected with Dr. Rosenwasser and have been so impressed with the care we've received at Jefferson.
We keep joking about moving to Philly since we seem to be spending so much time there! I will keep Jaclyn and you in our prayers..... reading some of the stories here, people have so much courage, and such a giving spirit.... we are humbled by it all!
Blessings to you and Jaclyn for the new year!!
Joy
Kim (Jaclyn's mom) said:
Hi Joy! Yes! My daughter has been treated by Dr Rosenwasser at Jeff since 2003. She had 1 embo, 2 Gamma Knife treatments, and in April of 2009 had LINAC. Unfortunately in her case, a 2nd avm formed 4 years after Gamma Knife so they treated the 2nd one with LINAC. About 6 weeks after LINAC, she had her 1st grand mal seizure that they say was triggered by brain swelling from the radiation. Please keep in mind that she was 6 when she had her bleed and is 14 now. Treatment and symptoms in children do differ from adults so dont be discouraged. Jeff's Neuroscience Ctr IS the BEST in the tri state area. Good luck to you and your husband and pleAse keep in touch. Maybe someday we"ll cross paths on the streets of Philly!
Hi Kim! I was reading about your daughter. My daughter Berkeley is 12 and was diagnosed with an AVM in August after a seizure. Size and location has made it inopreable at this time. She had LINAC at Johns Hopkins on December 2nd. She is an avid soccer player. The doctors have given her the all clear to play with knowledge that swelling could occur and cause increase in seizures. Does your daughter still play soccer? Berkeley lit up when we told her she could play. We are going to limit the time for a while. Would love to hear from you any advice for going forward with my preteen. Thanks so much and God bless...
Melissa Peterson
Kim (Jaclyn's mom) said:
Hi Joy! Yes! My daughter has been treated by Dr Rosenwasser at Jeff since 2003. She had 1 embo, 2 Gamma Knife treatments, and in April of 2009 had LINAC. Unfortunately in her case, a 2nd avm formed 4 years after Gamma Knife so they treated the 2nd one with LINAC. About 6 weeks after LINAC, she had her 1st grand mal seizure that they say was triggered by brain swelling from the radiation. Please keep in mind that she was 6 when she had her bleed and is 14 now. Treatment and symptoms in children do differ from adults so dont be discouraged. Jeff's Neuroscience Ctr IS the BEST in the tri state area. Good luck to you and your husband and pleAse keep in touch. Maybe someday we"ll cross paths on the streets of Philly!