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AVM Survivors Network

New AVM family looking to learn a few things


#41

I will look into Dr. Anderson. Thank you!


#42

FamilyFirst,
We have the same situation,my son's AVM is inoperable. Until now I worried and cry everytime I think about it. Reading stories from other members give me hope. I never thought about hormones and AVM together. Please update me if you can find any info about it. BTW, is their any defcit since your daughter had a bleed?
Thank you.


#43

This is a great site for a vast amount of information. I take Omega 3 supplements and eat oily fish every week sometime twice a week. I have never heard of Omega 3 being risky for the brain if you have an AVM. I am having salmon for dinner today. I really would be interested in the facts about Omega 3 and AVM.


#44

Thank you! =)


#45

My daughter's local doctors were unsure about flying and advised against it. They were even relatively unsure about driving through the mountain passes in Colorado on our way to the Mayo Clinic last summer. She did fine with the passes and the neurosurgeon at Mayo said that flying would not have been a problem.


#46

Thanks for the info Loulou!


#47

When Dr. Spetzler and his team reviewed my daughter's MRI, their decision was that attempting to treat in any way would cause permanent stroke like symptoms or worse, including death.


#48

I’m sorry you’re going through the same type of thing. The neurosurgeon didn’t seem to be concerned about hormones during puberty. Since there isn’t a genetic component to her AVM, he wasn’t concerned about it growing either. The hormone concerns would more likely come from use of oral contraceptives and any kind of post menopausal hormones replacements, which should both be avoided, I’ve been told.


#49

I’m sorry to hear her AVM continues to grow. I’m scared of the same thing. As it was explained to me, when the brain feels it’s depleted of blood it naturally makes more veins to compensate but unfortunately it usually makes them in the AVM. The neurosurgeon told me today he didn’t think my daughters would grow, but we will see after our first follow up in another six months. After today I don’t believe we are going to be able to treat her AVM. I saw the images from the angiogram and I now understand why nobody wants to touch it. I need a break from it all and in six months I can see about finding another opinion outside the two I already have. I, too, have leaned on my faith much more lately. It’s about all I have. Thanks for sharing your story. I appreciate it.


#50

Hi Mia, regarding use of acupunctur, do they have to be trained in areas of Neuro or any one would do? Have you experimented with any particular diet?


#51

On the bright side a large AVM is more stable and less likely to rupture than a small one. My 8yo has a small inoperable complex deep-brain AVM that was discovered when he was 5. Because of the high risk of rupture (in his case) he had stereostatic radiosurgery (gamma knife) in Jan of 2013.


#52

Hi Christine - that’s what some of the surgeons tell you but having read more studies than I care to admit, that theory that the large ones are more stable is inconclusive, at best. Dr Lawton at UCSF will tell you the the science behind it says otherwise. My daughter’s says otherwise. Hers has bled three times, two small bleeds we never know about and one that caused a mild stroke. She also has three aneurysms. So, I’m not much of a believer in the larger ones don’t bleed as much theory just from our experience. Since I posted this message I have done an enormous amount of research and met some wonderful families on here. One in particular who connected us with the cyber knife team at Stanford. We have one radiation treatment under our belts. Another coming up in June. How is your some doing since the radiation treatment? What have the follow ups shown ?


#53

This is wonderful to find a place like this for support and understanding...I don't claim to know any answers or that anything is perfect or wrong..but this is Jacob's story. At age 8 Jacob had a really bad headache and then he threw up on himself and didn't move...mother's instinct moved in and I took him to the ER. Nine hours later they discovered he was bleeding and he off on a life flight to Barrow's and he had his first encounter with an AVM. His was in the Occipital region and was at that time inoperable. The option we were told was Gamma Knife. This was successful and had shrunk the AVM and only time will tell. He was held back a grade and seemed to recovery with very little memory loss. However I think the first year was tough on me, it was like living with someone like the movie 50 first dates. And at that time I was just winging it because there were no support arena's or anyone to talk to..only doctors and they acted like I had the plague. So I did a lot of research on my own. I worked at making things simple for Jacob and wrote things down for him a lot. Eventually things seemed to be ok and we were living life. He is a Junior in High School and we were talking about college and really focusing on the future. And I was looking forward to being in a new place with life. Then a month ago Jacob had another bleed. I should of know there were things that were off now for a bit. He was a "A" "B" student and about a year ago he started slipping and is now a "D" student. I rationally thought it was him being a teen. He was hostile and a personality change. We went to school and got a 504 in place because I could see him struggling. When in actuality he may have been slowly building to this 2nd Bleed. He was out with some friends intending to kick the soccer ball around but never got that far. Thankfully he had enough sense to tell his friends to take him to the hospital and the nightmare begins again. Life flight to Barrow's. The best thing in all of this was I had been there before and it took the edge off the scare. Don't get me wrong I was still a wreck but I was able to understand far more and knew the questions this time that I wanted to know. I knew that our lives would be changing to a new normal yet again. Jacob at this time has moderate memory and cognitive loss. We are waiting yet again for the Gamma Knife procedure. In the first bleed,they made it out like it was only one. This time however it seems they said the angio he has a cluster. And so they decided to embolize because at the time they were telling us they wanted to do a craniotomy. While embolizing they found and aneurysm and embolized that. They only did 75% because the rest was too deep in the brain.MRI was done and the craniotomy was called off because they said he was too young...the risks were too high. And they have said Gamma Knife is the option at this point. We have been home going on three weeks now and he is recuperating. Some days he seems like he is his old self and he gets up and thinks he is going to school only to find he has a constant headache and still very weak and then remembers he had a brain bleed. He can't control his eating and I have to limit his intake. He has no shut off once he starts eating. He finds he has pain inside his head at the back on one side, which he says is more irritating than anything else. He wakes with a horrible headache and then once he gets moving he finds he can tolerate the pain..usually mornings are worst for him and night is better.He is doing better at the second grade work we have been doing.I am guessing he will have to re do the junior year next year. At first his friends were around being supportive but they have all gone on with their lives now...they will all be seniors next year and Jacob a Junior again, that is our hope anyway. The friends see him as Jacob and that he should be able to just go on...they don't seem to realize that while they talk to him and see him and he appears to be Jacob they don't know the other side of his short comings. That he can't remember after they leave that in an hour he won't remember they were there. So this is our new normal. And the future is so uncertain at this point.One thing I forgot to mention is that at the NICU they were on the fence to send him home or to rehab...I made the call and said rehab. Healthsouth was absolutely the best! They knew exactly how to operate with him...speech therapy nailed so many things and gave us help how to cope. Physical Therapy was awesome and also gave me information to take home and I have used.So for now we sit and wait for the next move, which is waiting for the doctor to decide when the Gamma Knife will be done. This is our ongoing story...


#54

I truly praise you guys with children with AVM's...as an AVMer and father it has always been a fear of mine that my child may somewhat be victim to an AVM...i will pray for you guys and hope God helps you guys to be strong, positive and for your children to have a speedy and healthy recovery and life..God bless!


#55

Let me just respond to the diet question. I believe such is an excellent question even though I do not have answers. When my AVM became symptomatic, my neurologist told me to avoid alcohol--one drink tops. She explained to me that alcohol is a dilator, so I had an understanding. Personally, I agree with the no-rigidity advise re child's diet. however, it could be useful for all of us to understand which foods dilate or constrict veins. In a practical example, drink ginger ale or sprite rather than all the soft drinks with caffeine. I am no expert, just asking questions similar to yourself.


#56

Hello mom2three,
We have a 14 year old grand daughter whos avm is inoperable on her brain stem.
Please share the diet information with us as well.
We are only one month into the shock of all this, therefore we are searching for
all the help and advise we can get please.
God bless you all!


#57

I work with a registered dietitian and asked about the diet- she says that alcohol and caffeine can raise blood pressure so none of that. High salt diets can also raise blood pressure, but if you are young and have healthy kidneys this is a really insignificant factor. She explained that unless you are on Coumadin, there aren’t any foods that change blood clotting. If you are on Coumadin you need to watch your intake of foods high in vitamin K because they interact with the medication. She just stressed that a healthy diet is important for everyone and to avoid gimmicks. Hope that helps!


#58

Hi Elizabeth. I was very interested in nutrition before my daughter's AVM was discovered. I have chosen to focus on it even more since her stroke in October. Because her AVM will take years to treat, it's important to me to do all I can. I disagree with most, in that we can teach our children to eat well now so they make good choices later. We have cut out most all of the foods that have added sugar and I use stevia and brown rice syrup when baking. Sugar causes inflammation in the body and brain. So does dairy, which we haven't eliminated. Soda was a rare treat before her AVM, so that hasn't changed, but we'll let her have Izzi's (sp), which have plenty of natural sugar. Fortunately, at 11 years old, drinking isn't an issue and she's aware it's something she won't be able to do. I just feel like I want to give her every chance to be as healthy as possible. Fortunately her friends are all into eating better with her. Thanks for your response.


#59

You are welcome, and thanks for the info on sugar--I did not know. Makes me glad that I am not a big desert person.
Hang in!


#60

Hi FamilyFirst. I think there is a group on this site for those of us with inoperable AVMs. It must have come as a huge shock to find out about your daughter's AVM and a lot of people seem devastated to find out it is inoperable. Personally I don't feel like that. My AVM is part of who I am and I'm more scared of the deficits that might occur if I am ever able to have any treatment on it. My AVM is in my Cerebellum. It is unruptured but was discovered via an MRI at age 14. I went through puberty and I can't say it seemed to have any effect. I have also been through two pregnancies and survived. I think the most important thing is to maintain a positive attitude to life. I'm afraid I don't know if diets help. But I'm pretty sure that having low blood pressure is a good thing. So a sensible diet and regular exercise can't hurt. Best of luck.