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Parents of AVM

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Janice Brown (Andrew's Mom)'s Discussions

I know this has been asked before, but I need your thoughts and experience
15 Replies

Started this discussion. Last reply by Sommer Hart Aug 18, 2009.

UPDATE ON ANDREW POST SURGERY
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Started this discussion. Last reply by Eloise Scott Mar 16, 2009.

Andrew in surgery......keep messages coming
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Started this discussion. Last reply by Ameenah Mar 13, 2009.

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Janice Brown (Andrew's Mom)'s Page

Latest Activity

Janice Brown (Andrew's Mom) replied to RobinsonClan2011's discussion 'Aneurysm coil questions'

My son had onyx glue and coils prior to his surgeries. His recovery was not much different from when he had his angiograms, expect he had to spend one night in PICU to monitor his B/P. Other then that he had headaches for a while afterward. Not sure…

6 hours ago

Janice Brown (Andrew's Mom) replied to Kathy (Jacob's Mom)'s discussion 'Had anyone dealt with their child having "anger issues after craniotomy' in the group Parents of AVM

Kathy, I think it sounds like a good idea to see a nueropsychologist or therapist of some kind. It sounds like he may be experiencing some depression, not necessarily just anger. Fear and grief can trigger some of that behavior, also. His whole…

Jan 5

Janice Brown (Andrew's Mom) commented on Ben Munoz's group 'Parents of AVM'

I agree headaches are the worst. It always brings back that sick feeling in the pit of your stomach. A few times Andrew's were accompanied by nausea and vomiting. A few weeks ago he complained of a headache as bad as when he had his AVM. The…

Jan 3

Janice Brown (Andrew's Mom) commented on Holly's blog post 'Looking for Signs'

I don't if that indicates an AVM or not. I think it is common like having one foot or hand bigger than the other. As far as trying to think back if I missed something or looking at pictures for signs. Almost everyday I look at my son and wonder…

Nov 29, 2011

Janice Brown (Andrew's Mom) replied to sam drummond's discussion 'how long before follow up angio' in the group Parents of AVM

After both surgeries the follow up angio was six months post surgery. He was AVM free the second time so they said he needed another angio in three years. They acted that they would follow him well into adulthood, but we'll see what the plan is…

Nov 29, 2011

Janice Brown (Andrew's Mom) replied to Maria B's discussion 'How do you decide?!!'

First, can I ask what doctor's you have spoke with. Second, being in the medical field I know you won't get a definite answer on wether to do it or not because ultamitely it is your choice. You are probably right in some ways it would have…

Nov 17, 2011

Janice Brown (Andrew's Mom) replied to bosco1's discussion 'Looking for encouraging feedback-has anyone had a craniotomy for AVM that did NOT result in a long term seizure disorder?'

Also, he is AVM free and no deficits.

Nov 17, 2011

Janice Brown (Andrew's Mom) replied to bosco1's discussion 'Looking for encouraging feedback-has anyone had a craniotomy for AVM that did NOT result in a long term seizure disorder?'

My son had a large, left medial frontal lobe AVM that ruptured in 4/2008. He had 5 embolizations and 2 craniotomies. His last surgery was in 3/2009 and he has never had a seizure.

Nov 17, 2011

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?: April 8, 2008

What is the status of the AVM?: Obliterated

How was the AVM treated?: Embollization, Crainiotomy

If treated, when was the AVM treated?: July 27, 2008

Describe the AVM (location, size) if you know it.: left medial frontal lobe; 4+ cm; 4-5 on the Spetzler-Martin scale

Please share your AVM experience. (Discovery, symptoms, treatment, recovery): My 11 yr old son, Andrew, was running a mile at school on 4/8/08. He went to class to watch a movie, put his head on his desk because he didn't feel well. A short time later he threw up and was taken to the nurses office. His dad picked him up from school and we began to treat what we thought was the flu. He was having trouble keeping things down and at 2 o'clock that morning woke up complaining of a headache. I treated this just I as I always have with ibuprofen, a cold rag and rubbing his head (all the mommy things). He went back to sleep and his dad stayed with him the next day. He did better off and on all day. This seemed to be running it's course as my friends told me of their recent or their children's recent bouts with flu. After I was home that evening for about an 1-1/2 hrs. he began to cry and complain of his head again. I asked him to put his chin to his chest and he said he couldn't. I was thinking it could be menengitis, but probably just dehydrated. So we went to the ER. They bolused him ibuprofen, started an IV, chest x-ray and CAT scan. He was actually doing better and I commented "Andrew, I'm glad your feeling better, but to bad you weren't feeling this good an hour ago because we could be home in bed right now". A short time later the doctor walked in and said "Andrew has an area in his head called an AVM that has ruptured and he is bleeding into his brain." "We are trying to contact a neurosurgeon and seeing if weather will permit us to life flight him to Riley Hospital. After being in ICU for 16 days we came home. He has had 2 embolization surgeries to date and will have a 3rd 5/7/08. On June 12 we will meet with the neurosurgeon and neuroradiologist for our next step. Scared and in shock I don't know how I will determine if gk or open surgery is right or even if I'm taking him where he needs to go. So far he has no deficits and I am trying to find as much info as possible. Sometimes this just seems to confuse me.

Would you like to recommend a surgeon, therapist, or a hospital?: Drs. Scott and Denardo at Medthodist Hospital in Indianapolis, Indiana did a great job with his embolizations. Dr. Spetzler at St. Joseph Hospital in Phoenix, AZ, did an amazing job with the crainiotomy.

Craniotomy is success

On July 24, 2008, Andrew had a craniotomy at St Joseph Hospital in Phoenix, AZ. Dr. Robert Spetzler was the surgeon. It took about twelve hours for the surgery and two days for Andy to wake up, even though he wasn't on any sedation. At first he wasn't moving his right side, but once he was off the ventilator everything began to come back quickly. He did extremely well and the only meds he had postop for pain was Tylenol, which is unreal to me. We met a girl named Alexis, with Cavernous Malformations, she is 11 yrs. old, also. Her surgery was the day before Andy's. We also met a great couple from Israel, whose 4 month old daughter had her AVM removed the same day as Andy's surgery. They discovered her AVM during an ultrasound. All were great successes. Yesterday, August 11, 2008, he started sixth grade only 2-1/2 weeks after surgery and as far as I can tell no deficits. He does experience weakness in his right leg with prolonged activity, but with exercise and time they feel it will resolve. He will need an angiogram in six months. I'll try not to hold my breath until then and just be happy with all the blessings we've experienced to this point.

Janice Brown (Andrew's Mom)'s Photos

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Janice Brown (Andrew's Mom)'s Blog

AVM angio results

Andrew's AVM is gone. Results are all clear.

Posted on October 23, 2009 at 9:15am — 11 Comments

Andrew's Angio Tomorrow

Andrew will have his six month post-surgery angio tomorrow. As many of you know when he had his first six month angio in January they found residual AVM. This took us back to Phoenix for a second surgery. So to say the least I'm very anixous about tomorrow, but feel very hopeful that we'll receive a good report. I'll post here tomorrow and on his caringbridge webpage at www.caringbridge.org/visit/andrewbrown. Please keep us in your… Continue

Posted on October 22, 2009 at 10:07pm

Tornados

Man I hate bad weather. There we were sitting in the closet. Two boys, my husband, mom and me. There sat Andrew with a bike helmet on his head. Guess it comes from living through a tornado. Okay just venting.

Posted on April 2, 2009 at 5:58pm — 5 Comments

Back to School!!!

Andrew went back to school today. Can you believe it 2-1/2 weeks after his surgery. He was up at 5:00, had breakfast, shower and dressed by 6:00. He didn't have to leave until 7:30. He was so excited and happy. Yesterday I asked him if he felt different: weaker, more tired, not clear head, he said truthfully I feel exactly how I did before the surgery. It doesn't get much better than that.

Posted on March 30, 2009 at 9:52pm — 2 Comments

This Journey is almost over.

OMG, I have tried to write this twice. The first time I hit the wrong button and lost it. The second time I hit the enter button and site was down for maintainance. Third times the charm. First, Andrew and I are at the hotel and Rick is back in St. Louis. Andrew is doing so well that we will fly out Thursday to St. Louis, not sure when we go back to Indiana. Best of all the !$%& AVM is GONE!!! Andrew appears to have no deficits and will not need any PT or OT, yeah. There is nothing good… Continue

Posted on March 17, 2009 at 7:46pm — 9 Comments

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At 11:12am on October 13, 2011, Suzy E gave Janice Brown (Andrew's Mom) a gift…: Red Ribbon
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At 7:03pm on February 11, 2011, Lillian said…: Hi Janice,

I felt much better after reading Andrew's amazing story. My 15 yrs old son diagnosed with AVM in his right frontal lobe in Jan 2011. The neurosuregon recommended surgery but I'm so scare and frightened.

But the nerogsurgeon did not mention about the embolization. do you know why Andrew require embolization before surgery? My son did not bleed, he had a seizure in Dec and the CT scan showed that he had AVM.

Can you share Andrew's recovering process and did he experience any side effects at all? Did he need to be on medications? My son's surgeon mentioned that my son might get seizure even after seizure? Has your surgeon warn you? Is surgery the best option?

Tks

Lilian

At 8:52pm on January 10, 2011, Cynthia Schaeffer(Grace's Nana) said…: Hi Janice, I just read over Andrew's amazing story. Reading stories like this gives me hope. My 6 year old grand daughter,Grace, was just diagnosed with AVM in October 2010. She has had 2 opinions - 1 from HMC (Hershey) and the other from Pittsburgh. Both stated inoperable - Grade 5 on the Spelzer/Miller Scale- such heart-breaking, deflating news. My daughter spoke to Dr Rosenwasser nurse (Jefferson Neuro, Phila) and they are having Grace's angio and MRA faxed for his review. I have also been reading alot of success about Dr Spetzler. Grace's symptoms so far have been episodes of stroke-like symptoms affecting the right side, slurred speech, trouble with thoughts and personality changes. These all occurred in Sept - since then she has been started on Tegretol and has been doing better. Thank goodness she has not had a bleed, but being told inoperable is so depressing. I am constantly worried about her and our lives have certainly changed and taken on different meaning since this diagnosis, so I do get hopeful when reading the more successful stories.

At 9:40pm on November 17, 2010, Tim Strong said…: Logan is ok, after his las embo he had some problems with coordination of his left forearm down. they put him on a seroid pack and things improved but he says his arm is still about 80%. If you looked at him you wouldnt notice unless you knew what u were looking for. Today I emailed the docs after 2 days of bad morning headaches and we were pretty concerned when they called 30 min later n said come down for an MRI. Good news NO BLEED, so after alot of anxiety all is ok; still swelling in brain that is likely causing arm issues. Got another steroid pack n we will see after if we continue w next embo on the 1st. thanks again for all the thoughts n prayers

At 6:54pm on November 4, 2010, Tim Strong said…: yes, i so agree. We did alot of research too and surgery is the best if possible w a kid. We talked to him and we all just couldnt see having to look at this thing every year a , possibly forever. His is in an area that is operable so get it and be gone so things can be as normal as possible. He is a very athletic kid to, so he was really looking to have it gone so one day he might be able to play soccer again. I agree on your surgeon, I remember asking denardo how many embo's he did monthly and overall, lots... We have heard lots of good things about payner and he seems to be one of the best in the midwest from what we can find. ok, prayers and good docs and lots of love. thanks again for your story and i will kepp everyone updated

At 6:12pm on November 4, 2010, Tim Strong said…: wow, yes we are actually from Greenfield and doc denardo just did the 3rd embo for logan. he also did the first but dr scott did the 2nd. I looked at the journal and that is great. by what we have heard from dr denardo today, it looks like at least one more embolization and then possibly craniotomy w doc payner. So glad Andrew is back to normal and all went well. that is great to read and we appreciate hearing your story. am interested, why did you end up going to Phoenix? no worry if you dont want to share. We have researched every step of the process so far w Logan and its all scary but the more we know it can be reassuring

At 9:32pm on May 19, 2010, Teresa Whobrey gave Janice Brown (Andrew's Mom) a gift…: Red Ribbon
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At 7:51pm on May 11, 2010, Teresa Whobrey said…: Janice thanks for your loving support any info that you could pass on would be greatly appreciated.(Sheila Hillhouse's mom);-)

At 7:28pm on May 9, 2010, Teresa Whobrey said…: We where told from a specialist in Nashville,TN. that surgery is out because her brain is growing around it:(

At 5:49pm on March 7, 2010, Erica said…: Hi Janice, it is nice to read Andrew is doing great. I know how you feel, doctors always told us seizure was something that could happen any time. Now Daniel is consulting a neuro who do not operate, she is more antiseizure medicine specialist and she told me about diferent approaches between neuros. Some of them like to do eletro after surgery in order to check the possibility of having seizures, but most of them don´t do any tests. The problem is we don´t know if our children are at risk. In other hand even if the eletro is not normal it is not a reason to start taking medicine without a seizure. So, sometimes it is better not knowing it (!?!?) I hope my English is enough for you to understand me. Lots of love.