My son (10 years old) had a bleed 10 days ago. We spent 8 days in the hospital and we’re now home trying to get back to normal. I’m just wondering what to expect through all of this. The Drs determined that his AVM is too deep into his Brain to operate and the only option for us is Radiation. They’re saying 4-6 weeks before they can start the radiation and 2-3 years before this nightmare ends… What can we expect from radiation? How long with the headachs last? Anything I should look for? I’m almost scared to ask these questions. This is all so new and scarry to us. I would love to hear any feedback you guys might have…
Listen to your son; he will find a way to describe it, like saying his head feels weird or his eyesight is odd. What hospital? My nephew had radiation at one reputable hospital, but another hospital with more experience said the radiation is what has weakened his valves and caused the follow-up mini-bleeds. He was 12 when he had the AVM, 13 when he had the radiation, and we regret it because it terrified him. The kids have to be awake when they drill the four holes into their head to put the halo on before the radiation, and they get sick. The doctors give them an amnesiac, but they still remember some things, like our nephew remembers screaming. Don’t be afraid to ask for another opinion, and especially check your hospital out on a scale to see where they rank in neurology treatment particularly with children. You will eventually find a new normal, but it will take awhile.
Tobie,…
Please don’t be scared to ask questions here,…after all,…we are here to help you, your son and your family in any way we can.
I wish I could answer your questions but alas,…I cannot.
What I can do is to off you one of my favorite quotes for your personal inspiration.
“Information is knowledge, knowledge is power”
Tobie,…so ask your questions,…many may offer you their own personal ideas, which inturn gives you needed information,…etc,…etc,…ergo,… the power to make the right decision for your son.
What I will do,… is to send you and your family my sincere hopeful thoughts, empathy, and prayers.
William
If you haven’t already, you might want to join the Parents of AVM subgroup. You can find it by going to the middle of the right hand side of the main page to the Groups box. There is a link to the subgroup there.
Take care,
Debbie
I would encourage you to ask your DRs very nicely if you can have his scans and medical report and that you’d like to get a 2nd opinion from _____ on the AVM to see if other facilities might offer an alternative. Often you can send the info (or ask them to send it) to see if their treatment option is the same.
Radiation is not quick to act, potentially leaving your son open to further bleeds. Embolization and/or resection is quicker and riskier.
I think once you have a 2nd opinion from a major AVM treatment center, then you can decide which approach to take.
Kids are more resilient that older folks, so they heal quickly.
Hope this helps,
ron, ks
Welcome Tobie
Each person is different so it is hard to answer your questions. Though I do not have a child with an AVM I was eleven when I was diagnosed. I did not have any treatments until seven years ago. It has been 38 years since I was diagnosed. I would make sure of getting copies of your son’s films and records and getting a second opinion. It is best to hear other opinions before making a decision. I would agree with Debbie it might help you to check out the Parents of AVM subgroup. All my thoughts and prayers are with you and am here if you ever need to talk.
Tobie,
It’ll be okay. It’s scary, I know. My 9-year-old son had a bleed on February 27th. Over time, you’ll learn more and more about AVMs, the treatments for them, what might be the best option for your son, how your son is feeling in the meantime, etc., and all of this anxiety will calm down. He’ll get progressively better as his brain heals from the bleed, and you’ll be able to think clearly again. Not to worry.
Over time (like several weeks to several months), his headaches should lessen in frequency and intensity. I use a 1-10 scale with my Ryan when he complains of a headache, always comparing his current headache to the original one that signaled his bleed. If your son has one that truly compares to the one he originally had, get him to the hospital right away. Other than that, patience and perseverance are called for, along with any medications your doctor might have prescribed for him.
It’ll get better. You’ll gain knowledge about all of this, and as William said, knowledge is power. This group is an excellent source of information. Ask questions at will. We’ll be supportive in any way we can.
Kelly