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AVM Survivors Network

Pediatric AVM questions... PLEASE HELP!


#1

My daughter Reilly is 3, she was diagnosed w/ an AVM at her skull base recently. We just met w/ her neurosurgeon yesterday who is ordering more tests (angiogram & another MRI) before coming up w/ a treatment plan… we talked about sugery and embolization, the latter of which totally freaks me out… wouldn’t that increase the chance of stroke? They are also double checking her brain for another AVM (first one said it was clear). I understand the risks of surgery are high, but embolization doesn’t give me a good “vibe” (for lack of a better word). Has anyone had a small child w/ a similar AVM? I’m just looking for any good words of advice to help me sleep a little better at night I suppose. Thanks so much for your input!


#2

Agree with Liam - I have heard that younger patients tend to recover more fully. I chose the gamma-knife option, which I hope your neurosurgeon mentioned as another option. It’s non-invasive radiation treatment (minimal downtime), but takes up to 2 years to remove the AVM. Talk to your surgeon about that option.

Ben


#3

Hello Reilly’s mama,

Sorry to hear about your daughter. Sounds like you are getting somewhere with what to do.
I would get more than one opinion on what to do if you can. Make sure you get copies of your tests to take with you to make it easier to get a second or third opinion. I got three opinions (one to do surgery, one to do gamma knife and one to do nothing). With all the opinion and then looking over family history I decided to do the surgery.
How did they find the avm?
Did she have symptoms?
I might be able to send you another link but can’t recall how many children had the avms if you would like, I think it was westgate something or the other. Prayers and hugs, donna


#4

I agree w/ Ben & Liam, the earlier you can take care of it the better. The options for surgery are of course a personal one and only you & your Dr’s can decide what would be best for your daughter. I am so sorry that one so small must go through this but I have a 3 1/2 year old son and on a personal level I know after going through all I have that if I saw my son having any problems that I thought might be an AVM, I would get him in and if it was an AVM I would do whatever it took to get rid of it now so he did not have to suffer long term like I did. I did not rupture until I was 28 and had bad headaches for at least 10 years. Children are resiliant and heal alot faster than even a teenager does. God will protect your daughter and watch over, if not carry her through this trying time. I know that if I found out that my son had one of these horrible things, I think it would be harder on me than him, because I’m the one who would be worrying about him. I will keep you and Reilly in my prayers and add you to our prayer list. Keep the faith.


#5

God Bless You… I have a daughter that has had AVM her entire life, she is now 30 and had a bleed on Christmas. She has had headaches her whole like and we never knew why. I am glad to know that they found Reilly’s AVM now, I feel that she will have a great recovery and do great. My daughter had the Gamma Knife treatment at Mayo Clinic at Rochester,MN I would advise you to give them a call and get their opinion they have a world class center there and are wonderful, professional and very skilled in AVM treatment. Check out my page on the AVM site you can find all the info on Mayo there. I personally think Gamma is the safest way to address this condition. Good Luck and God Bless You And Your Family.


#6

Hey guys! Reilly’s neurosurgeon says he doesn’t want the angiogram now!? I talked to his nurse, and she said that he only needed the other MRI (which has changed to C-spine now), and that should be sufficient for the “plan” he is thinking. She was quite vague though, because she said she wanted to make sure she wasn’t speaking “out of turn”. I have her MRI set up for April 10th, and then I go directly to the Dr. office w/ the MRI on CD to review it with him, I have the second opinion set w/ Dr. Spetzler (thanks again Karen) on April 14th. I am still SOOOO STRESSED though, I have been for a while, but I am now going bald (LITERALLY), I have bald spots on my head. Does anyone know what “plan” or procedure they may be thinking of? One that would obviosly not need an angiogram now? Sorry if I sound like a whiner… and yes, I do have a lot of hair, but none to spare anymore (My hair looks nothing like the pic I have on “my page” that was only taken a month ago). :frowning: Any input??


#7

Good Going Reilly’s Mama,

MRI is just another tool to use to figure out what to do and alot less invasive than the angio and more for the other ns to use to evaluate with. How’s is your daughter doing? Is her blood pressure and all of that good? Stress causing bald spots, I wouldn’t be surprised. Stress can show itself in many different ways on your body.
But, it might not be bad idea to check with your primary just to see if something else is going on. I agree with Liam and in a couple of weeks you will have alot more information and the course
of what to do will become clearer. Hugs and prayers, :)donna


#8

Dear Reilly´s mama, the stress is too high, almost unberable I would say, we just need to be there for our kids and remain positive for them. Now my Dani needs more treatment…My advice is, get the best of the best doctor you can find to perform the surgery, have second, third and fourth opinion. The doctor need to remove ALL the avm. Thats is crucial. If that happen your daughter will be completely cured. I am sure that will be the case. He needs an angiogram to map and size the avm before the surgery. I don´t think the chances of strokes are high. Try to stay calm, I know it is hard but you will need all your energy. At the moment I am trying to get mine back. Lots of love to you all.


#9

Well… I hope I am posting this in the right place, cuz I’m still kind of confused on everthing. But nonetheless, here is an update on my baby! We saw her neurosurgeon on Thursday, who saw us right after the C-spine MRI. The good news is that her spinal cord is not involved in the AVM mess!!! YEAH!! The not so thrilling news is that the doc wants to do embolization, and in all honesty, I just don’t have a good “vibe” for lack of better term. I like to think I am pretty intuitive, ESPECIALLY with my kids, and I’m just not thrilled about it. On the other hand… I have the second opinion w/ Dr. Spetzler (some of you know of him), tomorrow. I’m praying he will just want to take it all out. I know it is longer recovery and such, but I think I will just rest easier knowing it is GONE and that it can’t be problematic (since it won’t exist).
We also learned that she needs to be wearing a medical alert bracelet for malignant hypothermia (an issue that we had learned she had after her first MRI for the AVM)… so I’m focusing my energy on trying to find a cute one, that fits her, and is reasonable in price, being she is growing so fast!!! Not to mention, she is three, and doesn’t like bracelets… we’ve made a couple really cute ones for her, that she ends up not wearing, or throwing in her glass of chocolate milk! :slight_smile: Keep us in your thoughts for her appt tomorrow, and I will be sure to keep you all posted (and if you see any cute links for medical alert bracelets that come in size 5 let me know). Thanks a ton!! Hope you are all feeling well!!! :slight_smile:


#10

Good luck with Reilly’s appointment tomorrow. I’m so glad that you are getting to meet with Dr. Spetzler! Sending big hugs to your whole family…XXXXX

Love, Connie


#11

Please keep us updated with the results of the appointment.

Ben


#12

Hi Reilly’s mom,
So sorry to hear about Reilly, she is so young to have to go through all this. I had both the embolization, to encase the AVM and then they went in to cut it out. I think the embolization along with the surgery was great for me. The point of doing both in my case was if at anytime there was a bleed durning surgery then it would all be encased. And it was. I don’t remember it being painful, the embolization that is…I would do that for my daughter if need be. It really is a good thing. It also enables the doc. to get all of the AVM , meaning the stems. That is the most important.
None of it is easy, and especially for a three year old. So I wish you all the best and ASK TO GIVE YOU ALL STRENGTH THROUGH THIS JOURNEY.
Sending angel light and love…d


#13

HI JILL,
can or will SPLETZLER DO the surgery? He really is the best…i think. MY family has know him before, and his work is amazing.trust what he says;truly
SENDING ANGEL LIGHT AND LOVE…D


#14

Hi! How is Reilly doing? Has she had any treatments yet? My AVM bleed at age 7 and I had the gamma knife done a few months later. It is 13 years later and I am doing great. I had a fast recovery because I was young. I hope all is well, if you have any questions about anything letme know. Hope she is doing well !


#15

Any update on your daughter please? We may see Spetzler and looking for opinions and experience. Thanks. My son is 9


#16

My 12 yr old daughter has a brain Angiogram on May 27th.She is now losing a TON of Hair bald spot starting.......We were not made aware of this to be a side effect of the Angiogram, so she is freaking out.........I would like some help within this matter.......T
hanks.