Hello, I’m so glad I found this group. I’ve just joined so still getting used to how this works. Our daughter is 11 and suffered a bleed on the brain due to an AVM rupture late last September. We’d never heard of an AVM before that day. Hers is in the left occipital lobe.
Our daughter is being cared for by Great Ormond Street in London and is currently back at school. We are due to see the consultant again this Thursday the 10th to make a final decision about which procedure our daughter will be having. The team have consulted with Neurosurgens in Boston and Toronto to help them decide which procedure would be best for our daughter.
The facts are: The location of the AVM means through surgery, there’s a 50% chance (worse case senario) that she could lose some of her sight. (a small amount on the outside right eye, and a small amount on the inner part of the left eye).
Gamma knife seems appealing initially, but the thought of her having to spend the next 4-5 years worrying about whether it has worked and a potential bleed, especially at her age, will have a serious affect on her mental health.
Does anyone else have a child of a similar age that has been through this? Thanks
I’ve moved this to the @ParentsAndCarers category because we definitely have other parents and carers who’ve needed to make the same difficult decisions.
I’d also say that we have a bunch of people with an AVM in the occipital lobe and who have lost some peripheral vision: it does mean you’re liable to crash into things and need to take more care of what’s around you but it does seem like a workable limitation, given the alternatives.
Learning about an AVM is a frightening experience for all of us, so please be encouraged that we know how you feel!
Very best wishes,
Richard
Thank you so much @DickD. It’s so reassuring to know that there are people who understand what we’re going through.
Best wishes,
Naomi
Naomi,
My kids are all past 11 and it appears none of them have this AVM thing to bother them (other than being concerned about their dad)
I was originally diagnosed with an AVM in 1978. That means I was 13 at that point - close to your 11 year old. The biggest challenge we had at that point is finding a doctor who knew what an AVM was. At that point, Mayo Clinic was the only place that knew anything substantial. They did surgery and removed as much as they could (95%) and said, “Go home and don’t worry about it. If the remaining 5% flairs up, medical technology will have advanced to the point that treatment options will be different and better.
So, we did the surgery and went home and attempted to go on with life without worrying about it.
Most of the time, we were successful in that.
That’s about all I have for the teenage years - except for the fact that it is over 40 years later and I’m still here……
Welcome Noami. I can only imagine the stress of having a child with an AVM. When mine was found my kids were 11 and 13. I would have struggles greatly had been either of them. So I can’t speak from your position, but I did have the craniotomy vs gamma knife decision to make. Mine was made easy by the neurosurgeon who told me if it was him. he would go with gamma knife. That was due to the location, on the inside of the left temporal. The risk for complications were far less. Has the risks been “close” , I don’t think I would have wanted the lag time for gamma to work. That being said, it was successful, and I didn’t have another bleed.
Get all the info you can, pros and cons, and make sure everyone is comfortable with the decision. Not sure it helps but it was confusing, stressful and scary wanting to come to the best decision, while really just learning what the heck and AVM was. Take Care, John
Hello John,
Thanks for your supportive reply. Sorry to hear about your AVM. It must have been so difficult going through that with kids that age. I’m glad to hear that gamma knife was succesful for you.
Last time we saw the consultant he said that it’s a complex case because both procedures are equally possible for our daughter’s AVM, which is a grade 3. He has since consulted other neurosurgeons from leading paediatric hospitals which he hopes will make things a little clearer one way or another.
We’re nervous about speaking to him tomorrow (now on Zoom beaause we have Covid!) but also eager to reach a decision. We’re becoming more anxious as time goes on as we know there is a smal risk of further bleeding.
It’s just good to know that I can discuss this with people who understand about the condition and can identify with what we’re going through.
Thanks again. Naomi
Hello @TJ127
Thanks so much for your story. Wow…that must have been such a challenge. I can’t believe Mayo Clinic we’re the only ones!
It’s reassuring to read this and know that you have managed to get on with life. I’m not sure what tomorrow’s decision will be, but we’re trying to inform ourselves as much as possible. We also know that our daughter is in some of the best hands at Great Ormond Street.
Thanks again
Naomi
There’s a whole bunch of us thinking of you and your daughter. Best wishes for the appointment! Take Care, John.
Hi Naomi
While I don’t have any insights I just wanted to reach out as another mother who has a child with and AVM.
My daughter is nearly 14. She was diagnosed a day before being delivered by c/s. She had a craniotomy at 4 months old. At 6 years old it came back. Since then it’s been untreatable. This past year she became a candidate for treatment and we’ve spent the past year doing (mostly waiting)the preliminary tests - mri , angiogram- before taking the next step. For now we’re waiting for Dr Lawton at barrows to get back to us and let us know what the plan is.
Here’s a hug and wishing you lots of strength during this time.
Hi Naomi, sorry to hear about your daughter. My son had AVM in occipital lobe @ age 12. He had embolization followed by craniotomy. I don’t remember hearing much about gamma knife until I joined this site. I thought surgery was best option because he was so young & had a long life ahead of him. We had excellent neurosurgeons in Los Angeles. Today he is 21. He has lost peripheral vision on his right side. He has gotten MRI’s & angiograms going on 10 yrs & it has not returned. You will always worry. Do as much research as you can. Best to find surgeon experienced with AVM’s. I send best wishes for a favorable outcome.
Hello,
Thanks for your message. I can only imagine what it’s been like living with that uncertainty and anxiety for years. Knowing your daughter’s AVM is now treatable must bring real hope. I know the waiting seems to go on forever.
We have made the decision, along with her neurosurgeon, that our daughter will have a craniotomy. Everything was leaning towards this and both neurosurgeons that he consulted in Boston and Toronto agreed they would do the same if she was their patient.
We know this is a tough road but It feels good to have a decision. We now wait for a date, stay positive and hope.
Thanks again for reaching out.
Wishing you the very best,
Naomi
Hello Amy,
Thanks for reaching out.
I’m glad to hear that your son’s craniotomy worked and that he is AVM free. Does his right peripheral vision loss affect his day to day life much?
Now that we have decided a craniotomy is best for our daughter, we feel a little better. She is also relieved as she was really struggling with uncertainty.
We are all, of course, anxious about the procedure. We are also reassured that our daughter is in excellent hands with the team at Great Ormond Street and have great respect and trust for her consultant.
We now just really want the date so that we can begin to get our heads round the reality.
Thanks again and all the best,
Naomi
Hello Naomi,
My daughter’s right frontal AVM was diagnosed when she was 10 years old. She’s now 12, so we’re relatively early in our journey. Her AVM is large and diffuse so a craniotomy is not an option. Her best bet is radiation. However, because of the risks of the AVM rupturing during treatment and that she has no other symptoms, we’ve decided to wait and see for now. AVMs are so varied that our experience won’t necessarily provide insights into your own, but we’re here if you need a community of support.
Best wishes
Hello and thanks for reaching out. It’s just reassuring to know that we are not alone.
Yes, the more that time goes on, the more I am understanding how varied AVM’s are.
How are you and your daughter coping?
We have decided to go with a craniotomy as all the advice seems to be pointing in that direction. Mainly due to the fact that our daughter’s AVM has already ruptured so the chance of it happening again is fairly high. We’re now just waiting for a date.
I hope you and your daughter are managing okay.
Best wishes.
Hi, Naomi. My son says, “Yes, loss of peripheral vision changes everything “. Your daughter is young & will adapt. Her vision could get better. You don’t know. My son is in college & he drives. There are neuro-ophthalmologists & a lot of technological advances. We wish your daughter a successful surgery & speedy recovery.
Hi, my name is Faith. I’m currently 18 years old and graduated, but in fourth grade (a little younger than your daughter), I had an AVM rupture while I was in gym class. No one in my family had heard of an AVM before that, either. It was around my right thalamus/occipital lobe, which made it impossible for them to have any choice other than Gamma Knife. Since I’m not sure about the details of your daughter’s AVM and I’m not a neurologist, I’m only speaking from my experience which I hope can be of some help. I had Gamma Knife within the same year of the bleed and since then, the AVM has been completely obliterated. Everyone tells me that they can’t even tell that anything had happened to me, although I do have a few issues (bad eyesight in my left eye, numbness in the left side of my body). I’ve not had a bleed or anything serious since, though. I’m not sure of the size of my own AVM and I don’t know how to compare it to your daughter’s, but I’m living proof that Gamma Knife can be a great option.
I’d love to hear updates about what you decide and how she’s doing. I know how it feels and if I can be of any help or reassurance, please feel free to reach out. I’d be happy to share more about my experience if you’d like to hear it.
Thanks for posting, and welcome! Take Care, John.
please have a look at my original post … i have a daughter who’s AVM ruptured. She was operated on and we have been in rehabilitation for almost 2 years… and still going. Physically (visually) she is almost 100 % ok (if you did not know you would never know she suffered a stroke / seizure due to a burst / ruptured AVM)…
She struggles massively with numerous sensory challenges due to the operations and removal of the AVM ( VERY sensitive to light, noise, inability to concentrate for lengthy periods of time, inability to filter out any sort of distractions which has a spiralling effect of tiredness reducing her to having to retreat to her room in darkness and quietness to recharge)
As far as i can see and read from this forum, it takes time (long) or even some that have just hand to learn to cope with it (headphones for noise, sunglasses for light - even during night due to road lights or care lights etc)
She basically cannot lead, what i would call a normal life of a teenager (or young adult now). Has had to give up college, gymnastics, scuba diving, travelling etc etc. We continue to support and get input from the various specialists and continue with support programs to work on the various issues to progress.
I will just add, mentally she is very sharp … so nothing wrong there… its just all the heightened sensory nerves working overtime. Some people have classed it as “brain flooding”.
As one person on the group said, progress , not matter how small is progress… and that is what we look at.
All the very best to you and your daughter, be strong, stay positive …
Nick
Amy,
Hello and happy your son is well. I have a grade 1 AVM treated with gamma knife. It’s my understanding from my doctor they don’t like to offer young patients this option as it may increase your risk of brain cancer or lesions and 30 or more years down the road. I am 60, when you are young you could have issues mid-life. Surgery sounds like the best option. Be well.
I know it’s scary. I was shocked they all my life I had an AVM and never had an issue. My husband an family prayed to make the right decision for me and I chose radiation. It been 9 months no real issues. I just want it gone which take 1-2 years. I still
Work out and try my best to have a normal happy life. Every once in awhile it gets to me. I hope radiation is the right path for your daughter. It sounds like
It. Take care of yourself as I know you worry.