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kzl
- Victorville, CA
- United States
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Absolutely wonderful news!!!! My son Trevor goes in May 18th for an embolization. We are in a similar situation. Depending on what they can successfully do will dictate if he needs the craniotomy. Best wishes for continued health.
Alyse
That is wonderful news! All my best to you and Marco. xoxoxo
Marco had his embolization done yesterday May 10th and according to the interventional radiologist went very well. He said he managed to embolize the AVM and was happy with the results. The neurosurgeon decided that the craniotomy was not needed so…
Our son who will be twelve next week was diagnosed with two avm's last April. we were made to feel that he was the only child with an AVM. it has been a difficult road. but I'm glad to see that we don't walk it alone
Hi Kate, I think you were in prepping next to us this morning
My son Charlie is here @ barrows too for surgery with Dr Spetzler. I hope to meet you and your son!
Thank you all for your wonderful words of encouragement, it's a good feeling to read such wonderful stories. Everyone is so positive. We leave to California this coming sunday to go see another neurosurgeon and see what he recommends. We are having…
Hello all,
My son was just diagnosed with an AVM a few weeks ago. He had a left temporal hemorrhage in December. He is stable and besides the bleed in good health. We are just looking for some support and advice. We are terrified of what is to come…
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?
- December 22, 2009
- What is the status of the AVM?
- Active
- How was the AVM treated?
- Embolization, Other
- If treated, when was the AVM treated?
- May 10, 2010
- Describe the AVM (location, size) if you know it.
- temporal lobe
- Please share your AVM experience. (Discovery, symptoms, treatment, recovery)
- My son started with left eye pain and increased to a massive headache with vomiting and stomach pain. He hasn't been treated for the AVM yet because doctors were waiting for the bleed to diminish since the size of it was so big
Kzl's Blog
EMBOLIZATION
Marco had his embolization done yesterday May 10th and according to the interventional radiologist went very well. He said he managed to embolize the AVM and was happy with the results. The neurosurgeon decided that the craniotomy was not needed so we are going home today. 'The surgeon also said that there is a chance that the AVM could come back, the percentage was small but that it could happen. I still feel like they should have done the surgery just to completely clean it out and so we co
… ContinuePosted on May 11, 2010 at 12:27pm — 2 Comments
Hello All
I am the mom of a beautiful eleven year old that had an intracranial hemorrhage last december. Just three weeks ago it was finally diagnosed that he has an AVM. We are terrified especially because doctors are saying that the true cure if for surgery. We are just looking for some support and maybe some past experiences. This is all new to us and we have had a really rough year. We now have two sick children and any advice is worth our time. thanks and hope to hear from our new AVM family soon.
Posted on March 8, 2010 at 12:28am — 5 Comments
Comment Wall (11 comments)
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- At 12:30pm on July 28, 2010,
Guillermo Medina said…
- How is everything. Send us an update.
- At 12:42pm on May 11, 2010,
Susan Troop (Lindsey's Mom) said…
- Glad to hear it went well. They were able to completely embolize my daughter's AVM, but still did the craniotomy to take it out, because they didn't feel that there was a long enough track record on how long the Onyx would last. I guess it depends on the surgeon. They can always take it out later if they need to I guess. If you are not comfortable with their decision, you could consult another surgeon. I was glad to have Lindsey's totally removed, since she had already had a bleed, but that's just me. Again, congratulations on the result!
- At 10:07am on May 3, 2010,
Guillermo Medina said…
- My heart goes out to you. Please keep us informed on how things go, and I know they will work out. Marco and your family are in my prayers and thoughts. Please tell Marco about me and that I survived and I'm doing very well and I know he will too.
- At 3:27pm on March 16, 2010,
Guillermo Medina said…
- Gove us an update, how is your son doing?
- At 7:21pm on March 12, 2010,
Rebecca said…
- kzl, welcome to our group. I'm glad you found us. My daughter was 9 when she had her bleed almost 2 years ago. Surgery sounds scarey, but it was a wonderful thing for us. The fear of a rebleed is minimal and next fall we will have another angiogram and then that fear will go away. (I'm sure I'll still worry.) I hope your outcome is as good as ours.
- At 3:04pm on March 9, 2010,
Ninibeth Ramirez said… - Hi kzl, I understand what you are going through. I was 19 when I had my avm hemorrhage on my left temporal lobe. At first I had to be at intensive care since December 20, 1998 until January 7, 1999. It was massive so at that moment the neurosurgeon just suck up some blood.. As your son my neurologist sends me back at home because he was waiting the bleed to diminish since the size of it was really big. In that time my mom was desperate looking for the best doctor and she decides that I was going to have my treatment at Johns Hopkins Hospital. My family and family friends in PR. told her that she was crazy because of the decision. Know I am so grateful to her, because that was the best decision. If I didn’t have my craniotomy I will be dead right know.
It is really scary just thinking about it. Here you can find a lot of people who have had a craniotomy and thanks God are well…
I hope God can help you to tack the best decision for your son..
Let us know how is he doing..
God Bless
Ninibeth
- At 3:57am on March 9, 2010,
margaret lekkas said… - hi kzl, welcome to the family, i hope you and your children are well, pls let us know how you are doing.
- At 11:03pm on March 8, 2010,
Ben Munoz said… - Welcome. Thanks for introducing yourself to the community already. There is a parents group where you can connect with other parents of AVM-affected children: http://www.avmsurvivors.org/groups
Ben
- At 7:18pm on March 8, 2010,
marianne elizondo said… - Hello kzl .
I am hoping that you find this a place of understanding , compassion , information and sharing of experience(s) .
There is a group for parents of children with avms on this site . Just look on the side bar and click . There are some excellent people there who may well be of great value to all of you .
I am truly sorry that your child and your family must take this journey , but together you will come through , one breath , one moment and one task at a time .
Be good to you . Take care of you .
Positive thoughts and loving prayers for all .
- At 12:27pm on March 8, 2010,
Guillermo Medina said…
- I feel for you. I"m so glad it happened to me rather then one of my daughters. I know two others from El Paso that have survived this. and many more from all over. You are and your son are in my prayers.
memo medina
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