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AVM Survivors Network

New AVM family looking to learn a few things


#61

Hi Lulu, Good for you in posting encouragement to FamilyFirst. I remember welcoming you over a year ago and I just reviewed your profile. I have had 2 AVMs in my cerebellum and while unlike you the first one ruptured, my children were about 19 and almost 22 and we managed the situation. Yes, I had historically low blood pressure except when I went through menopause which is when my AVM burst. My neurosurgeon refuses to link blood pressure with an AVM burst but I think the coincidence is too great to ignore. I agree totally with your comment about maintaining a positive attitude. I wish you very well and yes a sensible diet and regular exercise make good sense.


#62

Thanks so much for your words of encouragement Susan T. I hope you are recovered now. Obviously if an AVM ruptures then you have no choice but to treat it. I'm not sure if I'm being a little naive but I'm just hoping this isn't an issue I'll have to deal with. I do feel very much in the minority on this site because most people are desperate to treat their AVMs. I guess I have just accepted it - for now anyway. Like you I am convinced there is a low blood pressure link.


#63

Hi Donna. Sounds like you are in a similar position to me. I am 41 and have known about my AVM since the age of 14 when it caused a secondary condition. I have had several operations for this but no treatment for my AVM which is unruptured. I have a large inoperable AVM like you. And I too have 2 gorgeous children who are nearly 11 and 7 now. Since the docs knew about my AVM they took the precaution of delivering them by C-Section. I also suffered headaches during the first trimester with my eldest. But since then life has been absolutely fine and, although I can never forget about my AVM, I manage to look on the bright side and focus on all the good things in my life - like my wonderful family and friends. Who knows what will happen in the future? But for now I'm here and I'm happy. Best of luck to you.


#64

I pray your daughter get well soon I would recommend to have every diet which keep blood pressure low and most important positive attitude and hope will play vital role.


#65

He had a rough year last year and was rarely at school because he had bad headaches and was feeling sick and dizzy all the time, having to resort to crawling on a number of occassions. I home-schooled him the last term to get him through Grade 2. Luckily he is quite smart (a member of MENSA) and can learn a lot quite quickly. We were back and forth to the doctor right throughout the year (them implying it was psychological, me knowing it was medical) and late in the year and early into this year the reasons were discovered. He had developed low blood pressure (good from an AVM perspective), has nausea akin to motion sickness even when not in a vehicle (something I'm seeing others experience also), he has developed a couple of learning difficulties but they appear to be more related to anxiety and the head injury he sustained when he was 5 (which has now been upgraded to a significant head injury) and he has Distonia (which gives him a feeling of being off-balance when he's actually balanced which throws his body out of alignment on correction) that is as a result of brain damage. The damage is thought to be as a result of connections that did not form properly in the brain because of the AVM blocking them and/or as a result of the radiation cutting those connections. He is waiting for further testing with a Neurological Psychologist (for issues relating to the head injury) and a Physiotherapist at the brain rehab clinic at Monash Childrens Hospital. They believe they will be able to form/reform those connections and help with the other issues as well. Meantime a medication to control the headaches and lower his stress has helped to stabilise him quite a bit and he has only had a few days off sick so far this year. Meantime Ronald McDonald House Charities have put him on the waiting list for tutoring to help him make up what he lost last year and to help him while he undergoes rehab. Monash are also nominating him for a Starlight Foundation Wish. He has a lot of support behind him and in his case because his AVM's location, type, etc. only occurs in 1 in every 5-10 million people per year there have been hundreds of specialists around the world in on his case. As to the AVM itself. There has been significant shrinkage in the main part of the AVM but none so far to the outlying areas or the aneurysms. He was given 4 radiation treatments over 4 days in the initial treatment (one dose divided up to reduce the risk of side-effects) and will be given another scan in about 6 months. If there is no change to the outlying areas or aneurysms he will have more radiation. Meantime his risk of a rupture is now at 1 in 6.


#66

Hello Christine,
Just read your post...my son has had a similar experience and I was wondering if I could ask what medications have worked for your son's headaches and nausea. My son had volume stage gamma knife (3 sessions separated by 3 months) 3 years ago. About a year after the last round, he developed chronic headaches and, I too had to homeschool him. Nausea came into the picture about a year later. He is in 6th grade now. We've tried many medications and nerve blocks and nothing seems to work. He now does half days of school as he continues to live in with chronic headaches and nausea. Would love to learn what medications helped your son!

Thank you!
Heidi


#67

Sure :-) I do ramble a little so bear with me :-)
Firstly let me say how wonderful it is that your son is making it to school for half the day. The social contact is so important to keep going even though it is an added burden on him and you. I'm not sure if you have him enrolled in a Home Schooling programme or not but there are a number of good ones here in Aus and in the US. I had Jack in the Distance Education School which was originally created for children who lived in the outback hundreds or thousands of miles from a school. They would send me out the lesson plans, teaching materials, computer discs and provide a teacher for contact whenever for ongoing support and assistance. He even got a valid school report from them. It is a registered school.
Jack has headaches and nauses for three reasons so I'll run through each of them and what has or is being done.
Firstly - low blood pressure. On rising in the morning he would experience headache, dizzyness and nausea. His blood pressure would also drop when he would rise from a sitting position to a standing position and when he ate (as your body redirects blood to the stomach for digestion). These symptoms should only last for a little while before passing. Rising from lying to sitting for a couple of mins and then standing helps with that as does staying well hydrated. If you suspect this then get him to slow down up his fluid intake.
Secondly - ongoing niggly headache - regular headache medication had no effect on these. He was put on Lovan which is a particularly good medication for some types of headaches and as a side-benefit is also an anti-anxiety. It took about 3 months to kick in properly and he had a few side effects at first but these headaches have now disappeared.
Third - sharp, intense headaches caused by brain damage. This one was the trickiest to diagnose. The GP, the Paediatrician, an MRI and even the Radio-Oncologist couldn't figure this one out. It was the Neurologist in the end who noticed something when Jack was walking that had escaped even my notice. It would cut in and out. His brain was telling him that he wasn't balanced when he was and it was causing him to make corrections that were throwing his body out. This caused these headaches, muscle aches, dizzyness and nausea. This is where the Neurologist believes that brain connections have either not formed properly or been cut by the radiation. He explained that although the gamma knife concentrates on a specific area is DOES still have to pass through other brain tissue to get there and this damage can occur. For this Jack will be assessed using a functional MRI which will explore which connections are firing and which are not. Physiotherapy will then be able to form those connections.
Lastly I believe that the non-motion motion sickness that Jack gets is related to that last condition. Ginger supplements can help or there are stronger alternatives available over the counter though you would want to make sure that they don't make him drowsy. Some people swear by motion sickness bands that you wear on your wrist.
That is our experience at any rate. I would advise though that if nothing has helped so far then they have either not tried the right medication for him or have not yet found the underlying cause and I would be pushing for him to be seen by a top notch Neurologist and possibly a Paediatrician. It took me a year of pushing and arguing to get answers and we're not finished yet as he's waiting for additional testing but at least we're on our way.
I wish you and your son all the very best. Don't give up the fight...because it matters :-)


#68

Good Morning! You are NOT alone! God Bless you. I am a mom of 3, with my 12 year old son being diagnosed with a Grade 5 AVM in his right occipital lobe. We have had scans all over the country, including Dr. Spetzler. We were told by our neurosurgeon that he sent it to Dr. Spetzler and he had originally said he said not to touch it. However, 2 years later, one brain bleed (minor with full recovery), and many doctor's eyes on his scans, we came across a doctor here in Houston, Texas which has been compared to Dr. Spetzler. He and his team (one of which studied under Dr Spetzler) said they would operate on him because 1. his vision is already permanently damaged (he has adjusted due to being a kid so he hardly notices) and 2. his AVM has clear borders. We sent his scans to Dr. Spetzler ourselves and he said we could either do the surgery or wait until he bleeds. If Dr. Spetzler says don't touch it, I would agree. There is very little research being done, but I do have a Dr Patricia Burrow in Wisconsin Children's Hospital that has figured out how to make an AVM in a fish and they are starting drug trials. They think if you give them a form of Tetracycline it can shrink large veins/arteries into capillary size. Interesting. I can send you any info you need. Praying for you. It is something no parent should have to worry about daily, but know we are with you.. God Bless!


#69

Hi Momof3, please share with us the doctor's name you found in Houston. We too are in Houston, and would like to get him to advise us as well. So far we have 2 doctors tell us to leave it alone, and 2 doctors say radiation. Looking for all the advise we can get our hands on. We are still in shock, starting week #7 from the bleed. Our children are all our gifts from God. Please let us know, thank you.


#70

Hello! Yes, I understand! Dr. David Sandberg (pediatric neurosurgeon at Memorial Hermann in the Medical Center), Dr. Arthur Day (apparently equal to Dr. Spetzler in Arizona) and Dr. Roc (Phen) Chen. Dr. Chen is a neurosurgeon and apparently a "wizard" at the embolization! We are using him for the embolization and the other two will do surgery together. Good luck. Definitely get their opinions! Dr. Sandberg calls us on our phones ALWAYS within a few hours after contacting his office with a question. Not even his nurse! The level of care has been phenomenal so far! Keep us posted! God Bless!


#71

Thank you for reply Momof3!!
We did meet with Dr Day last week and I felt some comfort in our visit.
My daughter has visited all that you mentioned here in Houston.
Your post has been of some relief for us, thank you again!
God Bless you all!


#72

I would definately look into getting a second or even third opinion...then you may have a better idea how to tackle the matter...as a parent I really feel for you and your family and pray to God you guys can get through this as everyday many more AVM success stories surface here...God bless!


#73

Hi Familyfirst :) , I've seen this discussion a few times now but was unsure on what to write, I've not checked all the replies yet but will do, As a parent I can only imagine what this must be like for you. Firstly its fantastic that she is doing so well after a rupture :) , I would recommend that you check with Dr Spetzler on how best to manage the AVM and any symptoms from it so that your daughter can lead a "safe" but as normal life as she can, Since she is young its good that any changes made will be now and this way cutting down on sugar ensuring a healthy diet and avoiding certain meds is good to know now and will become normal :) . We do have loads of members who are in an inoperable situation and live long and normal life's :) , Stay positive and try not to worry too much as this will lead to you being unwell from stress, You shouldn't worry about something that you cannot change, I hope this makes sense and just remember to get rest both you and your daughter as you are just as important to her as she is to you :) , Take care.


#74

I love that this string carries on and we all can continue to learn from each other. I thought since it's been awhile, I'd post an update. Dr. Spetzler, as well as Dr. Rosenwasser and the two neurosurgeons we originally saw at, told us to go home and live our life. That wasn't good enough for me. Thanks for a great family I met on this site (and through this string), we found Dr. Steven Chang at Stanford. Not only did we learn from Chang's great team that the AVM wasn't the 12 cm we were led to believe it was (closer to 7 cm, which makes a difference when you're reading studies and looking for hope), a 3D angiogram done at Stanford revealed three aneurysms (two are in the nidus, the other on the middle cerebral artery) which weren't discovered in the angiogram she originally had at DuPont.

Dr. Chang's team has given us hope. They're doing radio surgery in two stages, to start. They have compartmentalized her AVM into two parts. They've done one cyber knife radiation treatment in the posterior section and will do another in a couple months on the anterior compartment. We are praying the radiation start shrinking her AVM and slowing the flow so the aneurysms recede and don't get worse.

The worst advice we could have been given was to go do nothing. My daughter's AVM has bled and is in the basal ganglia/thalamus. The rate of rupture, based on those facts, makes it more like 13% annually, not 4%.

So, given what I've learned, which is that even Dr. Spetzler doesn't have the perfect answers for everyone (he's of the camp that the larger ones don't bleed as much but other neurosurgeons will tell you the science behind it says otherwise), don't sit back and be satisfied with one, two or even three doctors if your gut tells you otherwise. I'm able to give my daughter a chance when there the only chance she had by doing nothing was the chance it would rupture and cause serious damage or worse. At least now I can sleep at night knowing we're doing all we can to eliminate her risk in the future.

As for diet, we've worked towards a much healthier diet, which primarily means cutting out 89% of the sugar in our diets. My daughter has been a willing participant. She has sweets every once in awhile, but now she doesn't care as much as she used to. We eat a lot of vegetables and stay away from any foods that cause inflammation in your body, with the exception of whole milk, which she drinks every day. I figure that a healthy body can only bode well for her AVM.

Dr. Lawton, by the way, was another option. The only reason we opted for Chang over Lawton is because we traveled across the country and met the whole team at Stanford but just met Lawton while at UCSF. Also, cyber knife is less traumatic than gamma knife for an 11 year old. Thanks all for keeping this post going. I appreciate all the feedback.


#75

I would love to hear more about what Dr. Burrow is doing in Wisconsin. Dr. Lawton is working on a mouse and leading the charge in research as well. They get so little government funding it's no wonder more work isn't being done.


#76

ALWAYS follow your gut!!! I've had nearly 4 years of following mine and proving one doctor after another wrong until the right answers and the right treatments were eventually provided. Not just in regards to the AVM - my little fella has a few issues.

I'm not saying I know better than the docs because I don't, but I do know when something isn't right and that we have to keep looking. We are led to believe that doctors know it all (by society and the doctors themselves) - they don't.

No test is more accurate than a mother's gut. Nobody knows that child and when something is wrong more than you. Keep believing in yourself :-)


#77

Amen to that! Thanks Christine. I hope your little man is doing well. Sounds like you've got a good handle on his care. Nicely done.


#78

Forgive all my typos in my last post. I shouldn't work off my phone. I'm sure there is a list of resources for all these doctors I've heard and I'm sure it's on this site but it's hard to keep up with even posting at this point. My daughter started an AVM awareness page for her journey on Facebook. It's called Kendall's Crusade, for anyone who is interested. I'd love to get some other parents involved by sharing your stories of hope and creating awareness. Connect with me if you're interested.


#79

Hello Heidi!

My name is Jill Fratto and my daughter was just diagnosed with a large inoperable AVM, primarily in the thalamus area, but the basal ganglia is also involved. I found your post really interesting. We were offered multi staged gamma knife in Philadelphia (Thomas Jefferson University) by Dr. Rosenwasser who felt he could cure my daughter’s AVM, but he said it could take up to 10 years where he would treat a very small potion of the AVM at time and would wait anywhere from 1-2 years between treatments, based on how MRI’s look. We are also planning to consult to Dr. Lunsford at UPMC. I was wondering how things were going with your son and also whether Proton was considered. CHOP in Philadelphia has recommended Proton as a 1st choice, but Dr. Rosenwasser at Jefferson did not recommend this. Was your son’s entire AVM obliterated? I hope not asking too many questions, but I would love to hear how things are going. Are you still happy with Dr. Lunsford? Thank you! Jill

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.