Thanks for the information!
I would want to know whether it's gone for good or not. I think your life might be more devastated if you found out the hard way that something could have been done sooner rather than later. Also, if you find out it is gone, you'll have that much more peace! I hope that helps.
Thank you!
Thank you! I'm so glad your AVM is gone!
Thank you!
Thank you!
Thank you!
Thank you for your information.
I was diagnosed with an AVM in 2009, underwent Stereotatic RT, after having all the tests and primarilarly Cerebal Angiogram before treatment (11 all up) my AVM is now all but gone. Next checkup is in March 2014, when I expect it to be completely not there. Most highly recommend the ST Radio, but insist on the Cer. Angio before the treatment. My treatment was the subject of the world first Medical Paper on AVM Treatment and was carried out by the ‘William Buckland Radiotherapy Centre’ at the ‘Alfred Hosptial’ here in Melbourne Australia. The only side affect that I had was the loss of two patches of hair just above my ears the size of a dollar coin. (It grew back quite quickly) no other side affect what so ever.
Good luck to your son,
Marie Snow
Hi Suzy,
My son had a residual Avm approx icm. He had interventional therapy with onyx only, ( which is a polymer) ie glue, no radiatin no surgery. Feel free to friend me to read his story. I hate to see any child or anyone receive radiation or surgery if their is a more simplier way.
I will keep your son in my thoughts and prayers
Diane
Do you mean the AVM can grow back even if it was all obliterated during surgery? Like, a new AVM?
Thank you, Marie! I'm glad to know your hair grew back. I had heard others who lost their hair but didn't know if it grew back. Did you end up with a headache or continued headaches? Did the procedure cause any seizures or have you been blessed without seizures? We did have the cerebral angio which is how we found out that there was still some AVM there. Is that what you mean?
Thanks, Eileen! I'm with you on what to choose. Whatever will be best in the long run is what we hope for. He already had the craniotomy for the initial AVM which was 3-3.5 cm. We're still waiting to hear back from the neurosurgeons.
Thank you, Diane! He already endured an embolization w/ onyx. That was for his initial AVM. We really don't know what the surgeons are going to recommend at this point. I'm going to call them tomorrow because we've been waiting quite a while for an answer. Thanks for your help!
I want to offer clarification of AVM recurrence. There are two significant risk factors for recurrence of brain AVM after resection : young age (child or teenager) and deep venous drainage. We have many members who have experienced recurrence, and some of our children and teens have had multiple craniotomies.
About choosing a treatment plan, there are some reasons why the recommendations you have been given may not apply to you. First, most of the recommenders are adults, and second, most of them have not previously had a resection. Get three opinions from experts as to the best course of action for your son. This is not a question that should be resolved by taking a poll on this site.
Thank you, dancermom! I definitely agree! My plan was to get more information from our doctors but was hoping someone here could share what they knew or experienced with radiation. I would only ever make an educated decision about something like this. I also appreciate you pointing out my responders being adults and some who have not had a resection/craniotomy. My son IS a teenager so this makes sense. Thanks for your help and your candor.
Suzy,
My son was faced with no hope of surgery, as his AVM was too large and too deep for a safe surgical option. Even the traditional radiation treatments seemed to be a non option until we met the team out at UCLA in Dr Martin's group. Treatment was a year ago tis month and we were advised he's probably have to come back after three years for another round due to the size and complexity of his AVM. The hope being that two years after that everything would be gone. The team was amazing the treatment went well with the onvious side effect of hair loss which all grew back thick and "curly." His only restrictions are related to the size of his AVM and ensuring he doesn't over exert himself or strain himself lifting anything over 35lbs. We'd recommend the radiation treatment but also recognize we had no other option.
Thank you, Mark! We heard from our neurosurgeons today and they have decided to go with the stereotactic radiotherapy or radiosurgery (not sure which one, yet). I keep hearing that people lose their hair but that's a pretty minor side effect relative to surgery! I hope that your son is well very soon!
I appreciate all that you said, eileen! I also appreciate your willingness to answer my questions. We heard from the neurosurgeon today and they did decide to go with stereotactic radiotherapy/sugery. We'll find out more details later. :-)
Suzy best of luck. The treatment for our son was fast and easy and also out patient. The mask making and brain mapping took a couple of hours one afternoon. The a week for them to plan the process then one week of radiation each evening for about 10 minutes.
His hair eventually fell out about 4 weeks later. It all grew back about 6 months later. From the patient end it's a very safe simple process.