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AVM Survivors Network

9 yr old left frontal lobe - can anyone share side effects proton long term?

Our 9 yr old son has an avm left frontal lobe --- we have been told that due to location he may be best treated with proton therapy. This terrifies us due to location (in between speech/motor) anyone have any longer term insight they can provide. I felt very uncomfortable when told by the dr. that one day he will just wake up differently. I had an avm removed (right occipital 20 years ago - this is genetic but, not HHT) Surgery would be preferred but, again it is all about location

Any guidance you can provide would be much appreciated!

hi. I had/have a avm in left frontal lobe. I did a embolisation 2010 with good result. Before the operation I had speech problems due to the avm but now I dont. I had cognetive problems after the embolisation but after mutch training I’m now fine. youre son is young and young people have better chanses to recover. best wishes /Monica

Mom2three, if you join the Parents of AVM group (http://www.avmsurvivors.org/group/parentsofavm), you will find by reading past comments that a number of young kids have had their AVMs treated with radiation of one kind or another. Also, it might be useful to take a look at this report: http://www.cns.org/publications/clinical/55/pdf/cnb00108000108.pdf You will see in Table 13.5 that frontal lobe avms and small-sized avms have the lowest risk of side effects from radiation treatment.

Mom, I know I've sent you a message, but have you asked the Dr. Ogilvy/Dr. Chapman team what would they do if this was their 9 year old son? When I had the "big" meeting with them, I looked at Dr. Chapman and said "What would you do?". His answer was "I don't think you have the time to wait, so I recommend you have the Proton Beam Radiation, which I did. I felt that I was with the BEST team, so I trusted his response. Stay Strong Mom and Keep the Faith!!

Louisa:

Thank you for the support. Our big meeting said that this would be safest for him although it seems they "treat" a much larger area than the avm itself -- that is the frightening part. He answered the question of if it were your son - even before we answered it. Somehow I felt that he gets that question often. What side effects did you have and how long did it take? They said that one day he will just wake up and he will be different (speech will be impacted -- later I asked what specfically about speech and the answer was effective speech) google search revealed that effective speech is ability to form sentences....he is a very bright boy and speaks clearly today...not sure we can make that deicsion to take that away from him...praying that this can be surgically removed. this has been a horrible for us since the beginning of Nov 12'. any insight you can share - hair loss, fatigue, headaches....our son is asymptomatic --- no symptoms...this was found quite randomly....

Was your avm left frontal lobe? Were you treated by proton radiation? Thank you so much for any history you can provide to me.

This is very frightening...I feel your pain and anxiety. First if they haven't shared with you there is a 50% chance your son's siblings may have it. See a genetic doctor to discuss...where specifically in left frontal lobe is your son's avm? How large is it? The doctor's were referring to "different" after radiation. They shared that it doesn't happen right away and based upon location he will wake one day and not be the same child...speech will be impacted. I asked for more specfics and heard that it is effective speech which is ability to form sentences with a 50% chance of therapy fixing the issue. Our son is bright, communicative and articulate. How do we make that decison and take the abiliyt to communicte away? I can't in my heart make that decision and pray every day to be guided to a treatment that will not involve radiation.....My avm hemorraghed at 29 - it then bled again within one year. I made the decision to remove it (right occiptial) it was quite risky and was 20 years ago -- i could not face not knowing day to day what was going to happen and worrying about this. I was blessed with left peripheral residual - mild in the grand scheme of things.....I will keep you in our prayers..

Mom, if you are asking me....here is my profile:

My AVM was diagnosed in January of 2007. I am a true believer in finding the BEST AVM neurosurgen, I went to Mass General Hospital and decided that Dr. Christopher Ogilvy and Dr. Paul Chapman at Mass General Hospital were my best options. Due to my AVM's size (small) and location (far back towards the left lateral sinus), my only chose was to have Proton Beam Radiation (with beads included), by Dr. Paul Chapman, which was performed on May 22, 2007. Dr. Chapman put in three beads exactly in my AVM area (which they will not ever remove), for the radiation to go to the perfect spot.

Unfortunately, six months later, on 12/24/2007, I had a massive hemorrhage in the left temporal lobe, as well as in the occipital lobe . Doctor Ogilvy performed a craniotomy to remove as much of the bleed, as possible. They could not do anything to remove my AVM, due to it's location. I was in the hospital for 8 days, then sent for Rehab for 3 weeks before I was sent home. After my craniotomy, I was diagnosed by a Neuropsychologist at MGH due to the AVM rupture was Anomic aphasia, Alexia without agraphia and short term memory loss. I also have temporal lobe seizures and take Keppra to prevent seizures. In addition, I have minor vision loss on both the right and left side of my eyes.

Two years after my radiation, on 8/21/09, I had my third angiogram performed by Dr. Ogilvy and was told that my AVM had totally disappeared! The Proton Beam radiation performed by Dr. Chapman worked! Thank God!!!!!

Let me see if I can answer your questions...First, they create a mask specialized for you. If I remember correctly, I had one appointment to put in the beeds where they would do the radiation and the creating of the mask. I have 3 beeds still in my skull. That was the hardest part of the processure, having the beeds put in. To this day, the beeds still hurt sometimes, especially on rainy days. Then I came back forf the actual PBR....That took about 25 minutes, I'm not kidding...It went by really fast. The best thing is, that I had no, I mean zero, side effects from having the radiation... No hair loss. I went back to work the next day after the PBR. I did get headaches from the area where they put the beeds in.

Mom, I am just like your Son...I had no symptoms and my AVM was found by accident. I told my dentist that I would get headaches after I had my teeth cleaned and he sent me for an MRI and they saw my AVM. Very strange....

I honestly don't know what I would do if I were in your position. I'll pray for you to have the strenth to make the right decision! Please know that I'll always be here for you! Keep the Faith!

On the 50% heredity issue, I am aware of that only with genetic conditions such as HHT, mom2three, and have not heard that statistic applied to AVMs in general. Most members here are told by their doctors that AVMs are never hereditary, which is also inaccurate.

I have read every member profile on this website, and this is what I can tell you, justme:

1. Some families have multiple AVMs, as well as an underlying condition such as HHT, Cowden Syndrome, or CM/AVM.
2. Other families have multiple AVMs, without any symptoms that fit these conditions, though in most cases they have not had genetic testing.
3. The majority of our members report only one AVM in the family.
4. An unknown number of people have undiagnosed AVMs that will never cause any trouble or become symptomatic.
My personal conclusion is that there are probably multiple genes that can be inherited that may predispose someone to have an AVM, but other unknown factors determine whether an AVM will actually occur, and whether that AVM will ever be problematic.

This may help illuminate, justme: http://www.neuroskills.com/brain-injury/frontal-lobes.php

Mom2three, a member posted awhile back about an Institute in Virginia that is using radiofrequency ablation to destroy cancerous tumors instead of traditional radiation. I'm sorry I can't locate that past discussion, but I remember thinking after reading it that the new technology could render radiation obsolete. I don't intend to influence your decisions for your son, but if you join the Unruptured AVM group, you will see that other members have decided sometimes that not treating or waiting is a valid option, even sometimes the best option. I appreciate how agonizing it is as a parent to feel that your child's health depends on your own decision-making -- a lot of us have been in that spot.

I just found the discussion I was referring to earlier, mom2three: http://www.avmsurvivors.org/forum/topics/possibly-a-new-treatment-for-avms

Member mamginof3 has formed a new group for frontal avmers:

http://www.avmsurvivors.org/group/frontal-lobe-avms

I hope you will join it. How is your son, Momto3?