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AVM Survivors Network

New AVM family looking to learn a few things


#21

Hi, FamilyFirst, and welcome to the site. This is an extraordinary place with many members in similar situations who will reach out and offer advice or just an ear should you need it. As dancermom said, it is most definitely a place of hope -- use it and us as much as you can.

Our now 9.5-year-old daughter was diagnosed with an inoperable AVM (high-grade, deep) when she was 7. Although Sadie's AVM has not ruptured, she was symptomatic and we ultimately chose radiosurgery. We have had many challenges but she is in school, doing very well with many good friends and we are thankful for each day. Each AVM has its own circumstances and a surgeon friend told us early on that we would have some tough decisions ahead... we did. While you'll absolutely need to make your own choices, please feel free to contact me anytime and I'd be happy to exchange emails or talk if you need it.


#22

I neglected to add that he was very lucky in that he only lost the ability to raise his eyes up and he has double vision peripherally. One of his eyes does not move all the way to the outside--but people don't know unless he tells them. But when he went into surgery, we were told he could lose all fine motor skills, all eyesight, or possibly be paralyzed totally on one side. Very scary.


#23

I would like to respond to a few things you have said. I understand how difficult it is to have a son or daughter in this position, although my son's case is a little different. He has an inoperable AVM in his brain stem. It is small and he has had Gamma Knife treatment. Your daughter is very lucky that she suffered few symptoms from her rupture. A year ago my son had a hemorrhage and couldn't walk, talk, eat, or see properly. Today he is doing all of what he could not and is back at Teacher's College full time (he is 22). From my reading, Dr. Spetzler seems to be the foremost in dealing with and operating on brain AVMs. I am just wondering whether embolization is not an option because she is young or what the reason is. I have read cases of large AVMs where they use both Gamma Knife and embolization. I would also wonder or ask, even though the AVM is large and deep, does a future rupture pose the same type of injury and if so that is something to at least find comfort in because there was little injury. Depending on where these are in the brain the injury has very different effects. I share your concerns and anxiety as we all want to see our children lead healthy lives.


#24

Hey my wife saw your note & asked me to write something. First off, we're really sorry you have to deal with this. Our kid was in a similar situation. Spetzler said not to do anything, but keep in mind he is a surgeon first. Your best option almost certainly is volume stage radiosurgery, and the place to go in our opinion is Pittsburgh with Dr. Dade Lunsford.

When you have a large, deep, AVM traditional surgery is indeed impossible, as you know. Moreover, traditional radiation is out because the area radiated is less than the volume of the AVM. You cannot radiate the larger area, because the overall dose would be too high.

Dr. Lunsford pioneered the idea of using the gamma knife to radiate one part of the AVM at a time, waiting 6 months between treatments. The radiation intensity is turned down so the protocol can be done safely - Lunsford has done tons of these, and has researched the optimal levels. Lunsford tries to do as few sessions as possible, for a "huge" AVM as you describe I bet he would suggest 3 sessions. Lunsford and those he has trained have had success with giant AVMs that previously were untreatable, and that many doctors currently would say cannot be treated.

Here are the downsides. First, there is the risk of a hemorrhage while you wait for the treatment to work (always true with radiation, the time and hence risk is extended with volume stage radiosurgery). Second, because the radiation is turned down, the odds that the protocol will work (complete obliteration of the AVM) are only about 50% (one shot radiation more like approaches 90%). Third, you didn't say where the AVM is, but if there is basal ganglia/thalamus involvement the protocol might have side effects involving some weakness on one side (hemiparesis is present in 10% of such patients, I think).

For my kid, I looked at the odds. If we did nothing, the odds of a hemorrhage approach 100% across the expected lifespan. Accordingly, an option with 50% success rate is preferred. If the protocol does not work, it can be repeated. The odds of success across two protocols I bet are like 75% (the other numbers I gave are based on my reading of the neurosurgery literature, 75% is based on my statistical calculation).

My kid was a great piano player before the treatment. His right hand doesn't work real well now (2.5 years after we finished the protocol), and he can't play with it anymore. But as I write he is playing "How Great Thou Art" on the piano downstairs with his left hand - using the sustain pedal to create an awesome effect. Also he can't write as a side effect, but he uses his iPad in school and gets better grades that I ever did. I completely (respectfully) disagree with dancermom who cautioned against getting opinions beyond Spetlzer. If you have a chance to get the kid healed, you go for it. Talking with Lunsford, the guy who does the seminal research on the treatment that may be effective and who has cured many huge AVMs, I think would be wise.

We don't know if the first round of my kid's treatment will work - every year after the protocol is finished an MRI is done to track progress. His AVM is shrinking, but we have a long way to go. If this round doesn't work completely, we'll do a second round to try to clean up what's left.

Your decision may be rolling the dice on an uncertain treatment option that may have side effects, or doing nothing. If you do nothing, I'm sorry to be blunt but a hemorrhage at some point is all but certain. In our case we felt like we should give our kid the best chance we could, even if that chance didn't have the best odds.

Finally, please do not let anyone embolize then try one-shot radiation. The data show this doesn't work. One guy suggested this to us, but I had read the neurosurgery literature and although the idea sounds great in theory, in practice it is dangerous and ineffective.

One more finally - your kid has an uphill battle. I would be very reluctant to chase ideas that have no basis in science or data - for example, cutting sugar. There is really no reason to think that this may do anything, and you want to basically party like maniacs now while you all are together because the future in uncertain. Cookies are a big part of partying for kids in my opinion. What you should do is use Tylenol instead of aspirin or ibuprofen (e.g., Advil) because these thin the blood, which will make a hemorrhage worse if one does occur. Also - avoid Omega 3 supplements - same reason (if your macrobiotic person mentions Omega 3 you know he/she is a quack).

Listen, good luck. We'll be praying for you.


#25

Thank you for this information. Dr Campbell at DuPont hospital is who we have been working with and will meet with again on Tuesday. He trained in Pittsburgh and he’s the one who didn’t think radiation would be an option for my daughter. I will ask him about what you told me. I just sent you a private message and would love to speak with you further. Thank you very much for your response.


#26

Welcome and sending prayers your way for your daughter. Im sure there are many members here that can assist you with your concerns and I would say that there is no limit to opinions when it comes to family and their health and well-being...God bless and keep us posted on your journey.


#27

My son suffered a bleed at age 6 and also had an inoperable avm. He had gamma knife radio surgery and we check it each year with an MRI. So far so good. He was treated by Dr Richard Anderson at Columbia Presbyterian in NYC. I highly recommend speaking with him. Why not get a second opinion.


#28

Family first..I understand how it feel for you I have a 10 years old son with a brain AVM it was so deep and the doctors said that the chance for him to live is very little if they do an operation, he might be blind,or may be i will take care of him in a wheel chair or he might die .since they dont have a choice he fainted out in school and the ambulance took him to the hospital and because he was lying already in the hospital they did the operation but I never lost hope Ijust keep on praying and I believe in the grace og god. Now he is like a normal boy he is 14 years old already although he is still in habilitation he live like a normal boy,go to the normal school and live as a normal teenager.
You can visit his AVM survivor Sweden FB Page he is active in updating his situation it might be an inspiration to you and your daugther there is always a place of hope. Praying for the best for your family and your daughter.


#29

Hi FamilyFirst. First let me congratulate you on being so brave. It must be so difficult being a parent of an AVM-er. I have a 10-year-old daughter also and know how I would feel. The good news is that you found this site where everyone has been affected by AVM in some way. Like your daughter I have a large inoperable AVM. Mine is in my Cerebellum but is unruptured so far. It 'showed' itself when I was 14 and I developed Hydrocephalus as a related condition. I am 41 now. Obviously I can't really tell you much from a parent's perspective. But I can try to share what I know. My doctors told me to 'forget' about my AVM (as if!) and live my life as if I didn't have it. So I haven't tried diets etc. But I think one advantage I have is naturally low blood pressure. This probably means that blood flows more slowly to my AVM than usual. I'm not sure if there is anything that artificially lowers blood pressure but if there is you might want to try that. I was told years ago that hormonal changes can bring on changes to an AVM. Apparently the most likely times are age 4/5, puberty, when pregnant and at menopause. This is when a lot of AVMs present themselves. But I'm not sure if they get worse necessarily. Most people with AVMs were born with them and they don't always grow. I am monitored every few years to check for this though. I couldn't bear to think of life without children so have undergone 2 pregnancies as well. I will keep my fingers crossed that everything works out for you xxx


#30

Heidi, this is really useful. Thank you for posting. About the Omega 3s, I didn't know about that risk. Really important that you mentioned it. In fact, if you would post a separate discussion about that, I think it would be valuable for our members.


#31

Welcome to the community. I don’t post much, I barely have time to log on but it seems that we might be in similar shoes, so I just wanted to reply to your message. I am happy to hear that your daughter has recovered from her rupture and overall is doing fine. Children are troopers and recover fast. My daughter had her first massive rupture in 2008, when she was 2 yrs and 8 mths old. After that in 2009, when her 2nd embolization was scheduled, we were told that it was inoperable. A couple of months after that she had a second rupture, doctors weren’t sure if it was due to the huge AVM or the angiomatosis she has in her brain. It was a minor bleed. She has recovered almost 100%, strength and left motor fine skills are not completely recovered but totally functional. Each year we do an MRI/MRA to see how is the AVM and during those check ups a couple of angiograms. It is very discouraging, each time it grows more and more. Her films have been all over the country, and everyone says the same, it’s too big, it’s covering all the right side of her brain. At a time, they even mention doing a functional MRI to see if they can perform a hemispherectomy (remove right side of her brain) but then they realized it can’t be done. It is heartbreaking each time we go for a check up. She is nine now and is aware of the AVM and the severity of it, however we have learned to live with this. After we are done with the check ups we basically live a normal life. We pray and have hope and we live without regrets. We are people of faith and our faith in God has helped us thru these years. Some people live their whole life with an AVM and it never ruptures, they die without knowing they had it. Our daughters have inoperable AVMs but they are completely functional, which for me is a miracle itself. I continue to pray and never lose hope. I will pray for your daughter and your family. As for the hormones, we don’t have any restrictions on her diet, she likes to eat healthy, lots of fruits and vegetables, but haven’t really thought about hormones in meat etc. I will have to ask and find out about that and let you know. I wish you all the best and if you every need someone to talk, I am here. Take care!


#32

Hi Jacsha. Thanks a lot for your post and wise words. I completely agree with you. If you or your family have an inoperable AVM the best thing to do is try to forget about it and get on with your life. My AVM is inoperable and hopefully I practise what I preach. I aim to live my life to the full and I am happy, thats the main thing. No human being ever knows what is around the corner do they?


#33

Thank you Loulou. I really appreciate your reply and your suggestions. Best of luck to you.


#34

I believe there are alternative approaches to anything. I'm very curious to hear how your progress goes. Please stay in touch.


#35

Thanks so much for your reply. I'm sorry to hear about your ongoing issues. My daughter is dealing with some anxiety issues, but only every so often. When she does get worked up, it's hard to calm her down. Good luck with everything. I will keep you all posted on my daughters progress.


#36

Thanks so much, Melissa. I can only imagine how scary that decision was for you. It sounds like you've reached the most ideal outcome you could ask for. Thanks for sharing your story.


#37

Thank you Yon. Sounds like you were in a similar situation as we are now, and a few others are/have been. I will private message you and maybe we can connect further. THanks!


#38

Thanks Susan, for asking some good questions I don't know the answers to and will pose to the neurosurgeon when I meet with him tomorrow. Dr. Spetzler's group all reviewed her images and concluded no surgery and no embolization. Again, I'm not sure why. I will find out though. I'm happy to hear your son is doing well. Thanks for your reply.


#39

Thank you so much, Evangeline. You've been through a lot and I appreciate you sharing your story with me. I really appreciate it.


#40

Thanks Adrian. I appreciate it.