My daughter is 17 yo with ruptured avm on her posterior frontal brain. The rupture happened 3 months ago. We are awaiting tests to know the next step surgery versus cyber knife. She did the functional studies to know if her area of avm removal/obliteration will affect the eloquent areas. Daughter is asking a second opinion, is Barrow a good place to start? Can anyone share their experience with seeking 2nd opinions
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Hi Analiza,
I had my first bleed at age 10. They performed the Gamma Knife surgery twice, because they couldn’t remove it surgically from my prefrontal cortex. I had my first surgery before I turned 11 and my second surgery at age 16. However, sometime after that it grew back and I had another bleed at age 24. I am currently waiting to confirm if my third Gamma Knife treatment worked.
I’m in Canada so I had different doctors than your daughter has, but I suggest to always consider second opinions. My parents fired my first doctor when he didn’t want to do anything about the AVM (he actually said, “She’s fine, she can go sky-diving!”). Although I am not yet cured, I’m glad that my current doctor is treating me instead of ignoring the AVM. Clearly I’m prone to bleeds, so I want a doctor who will help me find the best course for my health.
All the best to you and your daughter.
-Julia
My reading of the experiences people in this forum have had with Barrow is that they are world class.
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I will re-iterate what DickD stated, Barrows is one if the best, Mayo in Rochester, MN and UCLA are some I have seen that are well known as great. There are quite a few in the US, but in my experience here if Barrows was an option I would be there for sure! Take Care, John.
Thank you for all the responses. This is so hard- everyday I cry. In desperate times, I pray that my daughter’s suffering to transfer to me. There are ups and down with her sleep & mood. We are working so hard to regain her functions as she has left sided body weakness. I pray harder for her to regain finger dexterity and her memory//intelligence. Reading the responses is very helpful. I wonder if my daughter reads it -will it be helpful for her or cause more worry. For now, I’ve been sharing to her bits and pieces of other’s experiences and assess her reactions. Thank you for this - we need hope and we need each others support. As my daughter said avm is rare - so she is special(crying again).it will get better she will heal.
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It’s very difficult. My son was 13 I think when I got my diagnosis and very capable at googling anything and I forbade him from doing any googling! I don’t know whether he resisted or not but I didn’t want him worrying about me or going and finding information that then got him worrying about things he didn’t really understand the full picture of.
At 17, and especially being the patient, I would probably do some sharing but it is that “be careful what you go off and Google”: it is much more important to understand what the doctors feel are the risks in your own case than to see other people doing less well than you might and worry about it. I guess it matters less when you find the successful stories.
What I found as the patient was that about half of the time, understanding the situation and reading others’ stories helped me and about half the time it worried me a bit more. So if your daughter is interested / needs to understand the situation then my advice if she was a member here (and she’s welcome to join) would be to use the forum while it is helpful and to just stay off when it isn’t. The same applies to you! It’s a tough situation and we are all bound to worry about a number of the possibilities. The key encouragement we want to be able to give you both is that all of the brain AVM patients here have been through similar worries. All of us. We do have some people who are very unwell and we do have some parents who have told us that their son or daughter didn’t come through but probably only a handful with the most devastating news in the 8+ years I’ve been hanging out here.
My only objective is to support you and encourage you a little through the difficult stuff. Sometimes the answer is to do surgery, sometimes the answer is to do embolization, sometimes radiotherapy and sometimes – if it is just too near to the eloquent stuff – the best advice is to leave it alone. I hope you get some answers that are easy enough to see a way forwards.
Ask anything you need, ok? We’ve been through this, and in my encouraging spirit, lots of people have come through this stuff perfectly well, not least the people who have done so aged 17. Recovery from a bleed often takes an unfairly long time to happen, so it needs patience, persistence and probably a fair hunk of determination.
However we can help you, let us know.
Very best wishes,
Richard
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Well said Richard. I think everyone on this board echoes your sentiment. We are in this thing together. Thankful for the encouragement I have received.
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Thank you so much Richard. Thank you All🙏
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“It grew back” - it is a life of being careful ( down on my knees praying 
). It is hard to gauge what activities can cause rebleed. Even pooping if constipated and straining can cause increase brain pressure. Any other activities or rebleed cause that we have to watch out for?
I wonder when will be the appropriate time to go back to school in between the cyberknife treatments.
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I was incredibly cautious after my first bleed. Although I went back to school, I never took gym class again and I limited overexerting myself. In 2019 when I believed the AVM was gone, I started exercising and taking dance lessons because my last MRI in 2015 showed no sign of the AVM (following my second Gamma Knife in 2012).
Then in August of 2020, I recognized the pain when I had a second bleed. I felt the pain of the bleed when I tied a Covid mask around my head and entered the bank. Personally I’m still shocked at how quickly the AVM grew back and at the timing of the bleed; I was having such a low-key day.
Personally I didn’t have side effects from the Gamma Knife. Three months after my first bleed, I continued my education via home-schooling although I only took a couple courses. My teacher still passed me and I returned to school for grades 6, 7, and 8; only attending half days and taking the courses deemed necessary (usually math, science, French and the occasional elective). Is this an option for your daughter? How is her recovery from the bleed? My modified school schedule was put in place to accommodate my short-term memory loss and mental fatigue.
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Thanks to physiotherarpy, I regained full strength after being paralyzed on my left side from the bleed.
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The information is very helpful thank you. We just found out she has another unruptured avm on her occipital area. I need to get unstuck and find a way of stepping one foot in front of the other.
I shared your story to my daughter to inspire her - you are Godsend!
I sent an email to her pcp for 2nd opinion at ucsf.
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Hello!
My heart goes out to you as you navigate this. It is not an easy road, and this forum can be invaluable. I would recommend reaching out to Stanford Medicine for another opinion as well. Barrows and Stanford were out go to resources. Please reach out if you have any questions ! My daughter had her first bleed at 27, and her AVM was located in her cervical spine.
Warmest regards,
Beth Carter
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So glad you were able to share my story with her. Reach out any time. 
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Did you confirm the regrow in 2020 with new scans/images or you just went off your pain?
When I was hospitalized for the bleed, they confirmed the regrowth with an MRI and angiogram.
So sad to hear, you are around my daughter’s age that has the AVM, we decided not to treat it and just to leave it, I hope she is not prone to bleeds. Did they tell you how come it grew back and how big it grew back and on the same place/shape or something different? otherwise you have no personality changes, etc?
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I will keep my fingers crossed for your daughter. 
Personally I don’t know why I’m prone to bleeds. The doctors said the AVM grew back during puberty, even though I thought I was done puberty when they operated when I was 16. I don’t know the size but I do know it is composed of two veins and at least one artery. It is in the same place as the original, having grown back from the same blood vessels I presume.
The second bleed didn’t cause a brain injury/personality change because it bled into a ventricle (empty space) rather than into the brain. After the first bleed, I did have a brain injury and personality change. I had been much more miserable as a kid and became easier to get along with after the bleed. I also developed a sharp wit and a more sarcastic personality, but some of my humour developed as a coping method from dealing with trauma.
Wishing you and your daughter all the best!
Hello,
Grateful that it bled into an empty space 
I noticed she become sarcastic and initially humorous with a change in personality. Its frontal bleed seems it does affect the behavior. Nowadays less humor due to the stress of multiple tests.
Anyone have information on right occipital avm affecting the left peripheral vision of both eyes? Medial of the left eye 
if w bleed or with avm treatment - this is sad.
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There are definitely multiple people here who have lost some of their peripheral vision. I know at least one person who has lost all of their peripheral vision.
What I can say from reading around is that while loss of some quadrants of one’s peripheral vision is a limitation (and leads on to the need to learn to turn one’s head to avoid bumping into things) I think everyone who has lost some segments of their vision is leading a pretty normal life.
I think even @randombeggar is fighting his way through life but is older these days and has had a number of bleeds and/or operations that together have robbed him of all or nearly all of his peripheral vision: his significant loss has been for the later years of his life, not for the majority, if I remember correctly.
I am convinced that great life is to be had, even if one loses some segments of vision.
Richard