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Danyle
- Tucson, AZ
- United States
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Danyle's Discussions
Best PEDIATRIC neurosurgeon
Good to know! We are seeing him in a few weeks along with Dr. Bristol for my son.
Tagged: neurosurgeon
Replied Feb 14
my baby diagnosed with AVM- ADVICE PLEASE
Thank you for your advice. I guess I want all of the answers now, but I do need to remember it's a process and I don't want to rush into anything until we learn more and talk to more doctors. I've be…
Replied Feb 3
my baby diagnosed with AVM- ADVICE PLEASE
Gordon- Thank you for your suggestion to contact the Mayo Clinic. I am getting in contact with them as well as Barrows.
Replied Feb 3
my baby diagnosed with AVM- ADVICE PLEASE
5 Replies
My 11 month old son was just diagnosed with an AVM. We noticed a bulge on the back of his head a month ago. The day after we noticed the bulge he had what appeared to be a scab and some bleeding in…
Started this discussion. Last reply by Suzi Santamaria-Kono Mar 19.
Danyle's Page
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Susan- So happy to hear the good news!
So we now have two options... the first offer was to do an angiogram to check it out and then embolize with onyx. Then pending on how that goes they would surgically remove it. The second option is to embolize it with glue, onyx, and alcohol. Both s…
My daughter had an embolization just after she turned 1. Her forehead had began to protrude so we had a CT scan. Once we had the MRI we found out that it was an AVM in the back of her head. I also felt like things weren't moving fast enough so I sta…
Kate- So happy things went well!
Profile Information
- Are you an AVM survivor, a relative, a friend, or a medical professional? (Required)
- Relative
- When did the AVM bleed or, if there was no bleed, when was the AVM first discovered?
- January 27, 2009
- What is the status of the AVM?
- Active
- Please share your AVM experience. (Discovery, symptoms, treatment, recovery)
- Noticed bulge of back of my son's head. He had a CT done that they said was fine. We noticed it continuing to grow and had an ultrasound done that showed an AVM. We are now awaiting an MRA, which has had to be rescheduled several times now due to various respiratory illnesses over the last several weeks. We will then meet with the doctors at Barrow's to see how extensive it is.
Update 3/5/10: Met with Dr. Bristol after the MRA and confirmed a peripheral AVM. The left occipital artery is the main feeder. We are going to meet with a neurovascular Dr. at Barrow's to discuss emobilization. This Dr. believes he can "cure" it with glue. Our other option is surgical removal. Don't know what we'll do yet.
Comment Wall (8 comments)
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- At 7:07pm on May 25, 2010, Teresa Sidio gave Danyle a gift…
- At 7:14pm on May 9, 2010,
Monica Longood/Ryan's Mom said…
- I was reading about your son, who is so adorable! Hope he is doing well. I have a son who has a very rare AVM of the face and neck. He is seen in Little Rock, AR by Dr. James Suen and Dr. Aron Erdom (sp?). Dr. Suen is world renowned and the best of the best in my opinion. He surgically removed my son's AVM when he was 2 and they are now managing the rest with Onyx and it's working. He is 12 now and a walking miracle! Thought I would share this with you. Good luck!
- At 12:47pm on April 19, 2010,
Shalon said…
- Hi Danyle!
Docs do often use a combo of embolic agents during one session. It depends on what they are trying to occlude. Sometimes alcohol is too dangerous to inject into large and high flow areas. Yakes uses coils for those. I probably have had a combo of alcohol/coils at least 30% of the time if not more with him.
When I had the "old" embos at UCSF I think the embolic agents he used were glue, beads, and coils. So I think it is fairly normal. However, having said that... I do find it odd the combo Dr. Burrows suggested. I would find out more about why/how he decides which is appropriate and when. From what I understand, the onyx and alcohol are both just as caustic. It seems strange that he would use both in combo, like one is easier or less caustic than the other. Does that make sense? Obviously for my doc the diff between alcohol and coils is obvious in why to use one over the other. So that would really be the only thing I would look more into with Burrows. I don't think it would be cause for concern per se, just would want to know why he would use all three.
Good luck and let me know if I can help with anything else!
- At 9:37pm on March 7, 2010,
Abby's Mommy said… - Your son is so cute! I will pray for you and your family. We are scheduled to meet with the team at Barrow on April 5th. We live in Alabama so we will fly in the day before. Let me know how everything goes.
- At 2:41pm on February 19, 2010,
I'm Audrey's Dad said… - Hi there - No playbook exists for us parents - we do the best we can. Your son is very handsome - and he will get through this!
Barrow worked for us and I am sure it will for you too. We live outside Phoenix by about 25 miles - really not too far. We interviewed doctors in several states before we realized we have the best team right in our own backyard. I will keep your son in our prayers. Let me know if you need anything. -Matt
- At 12:38pm on February 3, 2010,
Rachel said… - Danyle,
Your son is beautiful. I will be thinking of you all!
Please keep us posted.
I did have three treatments...two embolization procedures and then stereotactic radiation. For me it's now wait and see for the next three years. I wasn't a good candidate for surgery.
((hugs))
- At 8:03am on February 3, 2010,
Hanne said… - Welcome to a site full of friendship, knowledge and support Danyle :)
I know it is hard to get used to the idea of having an avm and I can imagine that it is even harder to be a parent to a child with one. Sending you lots of positive thoughts and energy. I am always here for a chat if you need someone to talk to. Hanne xxx
- At 8:02am on February 3, 2010,
Rachel said…
- Welcome Danyle!
May I ask is your son's avm an external one or is it internal? I never really knew that avm's could be external...my avm is in my left parietal lobe but since my diagnosis and coming to this wonderful support site I have learned that they can be on the outside of the body as well.
My thoughts and prayers are with you and your family. You are doing the right thing by arming yourself with information. I'm sorry you are all going through this but you are at the right place for love and support!
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