Hello, my 15 yr old son was diagnosed 3 days ago with an AVM in his Cerebellum. We have been thru alot in the last few days with MRI’S and an Cerebral angiogram today. All very scary and we dont know the results of the angiogram yet but wondering if anyone has insight into this area of the brain and AVM’s. I am guessing the doctor might come back and recommend embolization and then Craniotomy. My son is in great health and has been very active physically with sports since he was 3 (soccer, ect.). He was dignosed thru a CT to make sure he had no concussion from a recent high school game. We are scared and he likely is too but he has been a strong kid thru all these tests. Any advice or good stories would be appreciated.
it is a very scary time, but there are some good people and stories on here to help guide you. You may want to join the “Parents” group too. You are very fortunate to have found the AVM before a bleed. My daughter had a bleed when we discovered her AVM last summer. She had embolization and craniotomy in January of this year. She is AVM free, and you would never know she ever had it. It is a tough journey, with all of the decisions and such, but kids are very resilient. I think it is tougher on us parents! We will keep you in our prayers!
Aww that is awesome and reassuring. We appreciate the prayers and comments. It has been alot at once but your comments certainly help. I am glad your daughter is AVM free and a blessed to be so! thanks again!
Susan Troop (Lindsey’s Mom) said:
it is a very scary time, but there are some good people and stories on here to help guide you. You may want to join the “Parents” group too. You are very fortunate to have found the AVM before a bleed. My daughter had a bleed when we discovered her AVM last summer. She had embolization and craniotomy in January of this year. She is AVM free, and you would never know she ever had it. It is a tough journey, with all of the decisions and such, but kids are very resilient. I think it is tougher on us parents! We will keep you in our prayers!
Please get a notebook and take good notes, my husband and I both wrote everything down when Surgeons and Radiologists gave us info, we would compare our notes and he would hear some things and i would hear others, there are usually multiple choices especially since your son did not have a bleed. i relied heavily on my notes throughout the entire ordeal. For dates and times of procedures etc.
Our Neurosurgeon was from CHOP, voted best pediatric hospital in the country, he said to me that most likely 50% of opinoins would say do the gamma knife and 50% would say operate, he left the choice up to us and the option for 2nd opinions. My son age 8 at the time had a bleed the radiation works over 3yrs riskier since my son had a bleed. We opted for surgery, 2yrs later we have repeat angios.yearly just came back yesterday from one and there are some abn venous vessels, awaiting results to be viewd by his neurosurgeon. Hope this helps you in your decision making.
Keeping you and your son in my thoughts and prayers, our bodies are resilent, my son is 100% recovered and A honor roll student
I had a cerebellum AVM and did gamma knife. AVM gone and no deficits. Read more on my page. You came to the right place.
Definately takiing notes and asking lots of questions. Our neuro has already suggested gamma knife is not something he would recommend but this was before the angiogram and he hasnt reviewed the results of that yet. Supposed to do that on Monday. Your advice and story is well appreciated and I wish and pray the best for your son.
Diane Faherty said:
Please get a notebook and take good notes, my husband and I both wrote everything down when Surgeons and Radiologists gave us info, we would compare our notes and he would hear some things and i would hear others, there are usually multiple choices especially since your son did not have a bleed. i relied heavily on my notes throughout the entire ordeal. For dates and times of procedures etc.
Our Neurosurgeon was from , voted best pediatric hospital in the country, he said to me that most likely 50% of opinoins would say do the gamma knife and 50% would say operate, he left the choice up to us and the option for 2nd opinions. My son age 8 at the time had a bleed the radiation works over 3yrs riskier since my son had a bleed. We opted for surgery, 2yrs later we have repeat angios.yearly just came back yesterday from one and there are some abn venous vessels, awaiting results to be viewd by his neurosurgeon. Hope this helps you in your decision making.
Keeping you and your son in my thoughts and prayers, our bodies are resilent, my son is 100% recovered and A honor roll student
awesome, I will check out your page, the more we know the better we feel from the standpoint of at least being informed. thanks again!
Ben Munoz said:
I had a cerebellum AVM and did gamma knife. AVM gone and no deficits. Read more on my page. You came to the right place.
I had a cerebellar Bleed from an AVM, on November 9th, but they couldn’t identify my avm til my second angiogram in February 2010, I had a crainiotomy on April 2, and there were some complications from brainswelling. After physical & occupational therapy im doing so well people dont notice that I still have some slowness and have difficulty multitasking. Ive had to cut back to part time work, but Im doing really well, just still recovering from the crainiotomy. the surgoens tell you it will be quick but the therapists know the real deal and that it can take sometime to recover especilaly if you have had a bleed. I did a ton of research and met with 3 surgeons before i went to MAss General Hospital for surgery. Feel free to friend me, and read my story, this is a great site to get help and resources!
Tim, I wish I would have seen ur story sooner! I was diagnosed around ur son’s age also with a very large, RT side avm. I was extremely invlolved in sports and was diagnosed following a grand mal seizure @13. I’m not sure, at age 15, if ur son is seeing a pediatric neurosurgeon or adult? My pediatric neuro in 1988, was a well-known surgeon from South Africa, and he would NOT touch it.(no rupture, too large, definite deficits post op) My avm is still unruptured, and only recently had 4 embos to treat new symptoms that occurred a couple years ago. Honestly, I was grateful that my parents didn’t subject me to surgery at such a a young age, and allowed me to live a ‘normal’ life.(sports, college, business,…LIFE) Maybe ur case is that there are aneurysms present, therefore resection and treatment is/was necessary. I, too, have had 4 embos in the last year that have eliminated virtually ALL avm related symptoms! I declined further radiation treatments, because of concerns for more deficits. Please read my blog, and understand that I DO NOT subscribe to the ‘ticking-timebomb’ theory. I have lived a very FULL life, and plan on continuing to do so! Just a thought regarding further treatments, especially since ur son’s avm is unruptured. Prayers for wisdom and finding the right treatment, if any?! -GK