It’s good that it’s been found via a scan , and not from a bleed. The Angiogram will give more info to the AVM and will give a better idea of best treatment too. Did you say they said surgery is best option ?
Lisa,
My son Matthew’s AVM was found by a twin study. He is an identical twin to Alex. The twin study included a low contrast MRI of the brain to compare blood flow of twins brains while playing video games. I had second thoughts of having this done due to extra radiation but I am glad I did have them go thru with it. We found out in October. We have done 3 MRI’s total and 1 Angiogram. We found that the AVM is located behind his right ear in his cerebellum. He currently has no symptoms and never has had any. It was a fluke this was found.
I know it hard to keep it together but I have found talking about it and prayers help a lot. Trust me, I am scared. I want to fix it and I don’t want him to have to deal with this. But I know I have to be strong for him and his brother.
We felt taking him out of school would put him behind the game and do more damage to him with confidence. So we decided this summer would be a good time. He could heal, relax and not worry and stress about grades and school. Our doctor feels that this is a great option as well. It gives the time to coordinate the operating room, children’s hospital room, angiogram room and insurance approval.
Its confusing on what different surgeons say as far as do and don’t’s I agree. But don’t let this consume you as I know its hard in the few few weeks after a diagnoses. We as mom’s have to stay and be strong for our kids and hubby’s too. As hard as it may be. I know its not fair. I do have my cries about this, how are we going to do this financially, and other issues that have come into play with this diagnoses.
I will close by saying if you have insurance your state may offer a special health care program for children with a major health issues. Check in to that it may ease a bit of anxiety. I just found out about the State of Michigan offering some help. I am in the process of applying for it. I know money should not be an issue with all of this. But as parents and adults, I believe it heightens’ our anxiety.
My thoughts and prayers are with you and you son. Please reach out if you want to talk, sounds like we are going to alot of the same things and a son at the same age as well. I am sure we can talk off board as well.
Cori
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That was pretty much the same thing I told my neurosurgeon, don’t sugar coat it, I’ve read there’s a 25% chance that I could have serious problems or die from the surgery and he told me the benefits far outweigh the risks; yes there’s always a risk with surgery but if he’s successful I’ll never have to worry about the AVM again so it all turned out good other than what was damaged from the original rupture but I don’t have to worry about the AVM or bleeding ever again.
He said that the location is on the outside that’s what he’d do if it were his son. I thought that before we went in. Gamma knife takes too long and the possibility of a bleed is still there. My son is an athlete and we just benched him. Too scared he’d get hit and it would rupture.
Thanks for reaching out,
Lisa
When you say the outside , is that superficial , on the outside of the brain ? as mine was superficial and I had a craniotomy last year . Front right lobe
It comes out to the surface but we haven’t had an angiogram. It is scheduled for Wednesday.
His is located on his right occipital.
Hi LIsas!
My AVM was also in the right occipital, and discovered by accident last summer during an angiogram for something else. I’m in my late 50’s so living on borrowed time from what I’ve read about the 2% higher risk each year thing. I had no real symptoms to speak of except visual migraine headaches. I had a craniotomy, my very first surgery in my entire life! My mom was more scared than I was…I researched the surgery, the doctors surgical record, the hospital and was confident that he was very good and so was the staff. Night before surgery you shower with a special soap, then the next morning you repeat it and off you go to surgery. Mine was on the outside of the brain so easy to get to like your sons’ will be. Slept most of the day of surgery and part of the next morning. Still, I did very well, felt great, and was home within 2 days. Just had to take it easy for about a month afterwards. I think that would rule out contact sports, heavy lifting, and anything else that raises blood pressure while he heals. He may need to nap every day for about 2 months while he heals, I did and was told that was normal.
I know it’s scary for you, it was for my mom too. I am grateful mine was found pre-bleed. I am now 7 months out from my craniotomy and am my old self again…just with a big scar under my hair. The mark of a survivor.
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Good luck x
Same here , front right lobe found by Pulsitis Tinnitus in my right ear, had mri and they found AVM, had surgery last May 2017, and pre embolisation before surgery was in hosp for 12 days due to pre embolisation aswell. Went well. X
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Thanks so much for all that hope in one paragraph. It does help knowing a situation similar to my son’s.
How long did you wait before having surgery? Did the dr embolise it first or just go in? My son’s neurosurgeon just wants to go in but we will know more after angiogram next week.
Thanks for reaching out and sharing your story.
I had an embolization first but it didn’t work. After a scheduled additional embolization (which didn’t happen due to the results of the pre-op angiogram CT) I had surgery 1 1/2 days later. The incision took 25 staples to close and I begged the dr not to cut my waist length hair. He only shaved a 1/4" line barely big enough for the staples so it doesn’t show.
Can you tell me about your recovery? Any vision problems? Since yours is like my sons I’m curious. I know outcomes can be different.
Thank you
Lisa, reach out to your Pharmacist regarding his other meds. They should be able to tell you if there are any ingredients that are a problem. Also if you give him herbal meds be careful, many of those are also thinners such as Gingko Biloba. Don’t rush into things regardless what one Dr. says and ask questions that may challenge the Dr. It is your right to get the correct answers.
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We go Wednesday for his angiogram and honestly, I’m ready for it to be gone. I’m terrified that it will rupture and maybe after the angiogram I won’t feel that way.
He takes only his ADHD meds and his Dr. did not say discontinue it so we haven’t. I’ll ask the dr on Wednesday.
Thanks so much for reaching out
Lisa, one other thought; You “just want it gone”. There are several ways to deal with an AVM and as I said before I was diagnosed at 19 with one. I am currently 57. I have endured many different treatments over the years since i started with this in the “dark ages” of treatment. I have had 3 embolizations and then gamma knife as the latest treatments and they have done the trick. The AVM is still up there but it is “dead”. There is no blood going to it and it is not growing. I see my Neurosurgeon every 5 years as a preventative. Please review all options with your surgeon and ask them to explain the benefits or deficits for each option. Good Luck Wednesday.
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Thank you.
Hi again Lisas!
I am severely nearsighted to begin with but I had other vision problems before surgery…lots and lots of what I and my doctors thought were optical migraines without pain (waving lights, flashing, etc 5-7 times a day). Those mostly vanished immediately after surgery and I only get those occasionally now. I had a mild nagging aching headache for several weeks, nothing that Tylenol couldn’t cure. Those ended too after about 6 weeks. Tired a lot more easily and I’m used to being very active. I had to take naps of about 2 hours nearly every day for over a month. Seems healing brains need more rest. I no longer need those naps though. Most people look at me and can’t believe I had brain surgery! My own sister can’t believe this condition is as rare as it is (so are hemangiomas confined to the tonsil but I had one of those too).
I hope your sons’ recovery is as smooth and as quick as mine was. Sounds like his AVM is very similar to mine. Mine was just in the dura, lying on top of the brain just under the bone. It didn’t burrow in like most AVMs. The hole in the bone is about 6" across and held in place by multiple tiny titanium plates and screws as the bone heals. The bone will eventually fill in and it will be solid again. My AVM was ‘removed’ by completely cutting off it’s blood supply with surgical clips left in place. For about 3 months after my craniotomy I had pulseable tinnitus on the same side as my AVM was…that has now disappeared too.
Please keep in touch. I am praying for your son and for your family too. It’s not easy at all standing by while your child is having this surgery, I wasn’t easy for my mom at all. Hang in there.
Lori
Thank you for the prayers. I think his is like yours but it does go into the brain a lil. We will know more tomorrow, I hope. Idk if the radiologist will tell us anything. I hope so cuz our next appointment with his neurosurgeon is Tuesday. Ugh waiting is so hard.
He hadn’t had any symptoms so I hope that means something positive.
This is truly scary! As you know, we are on pins and needles.
Lisa
Hi Lisa.
I also have a 15 yr old son, so I can imagine your stress. It was not my son who had the AVM, but me, and it bled while my boys were at school, and my wife at work.
Mine was not in the Occipital area, but it was right on the surface of the frontal lobe, with the deepest incursion about 1 cm deep. They offered me a choice of treatment, but since I plan to be around for 40 or so more years, I opted for the surgery and removal. And I was 59 at the time 
Your son, at 15, is young, so he heals much better than we do. And he might have a century of life ahead of him, so whatever the risk per year, I think that surgery should at least be considered.
There might be long-term deficits, but he is young enough that even if it takes a few years to recover, he has the time.
I have some lingering deficits, but mine was discovered after the first bleed, and then I had another before the surgery. (btw, I agree with the members who have suggested that maybe no contact sports for now). While I have some lingering deficits, and some memory issues, I am still here.
Best of luck to you, and your son.
Eb
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