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Nea's Mom Female Chicago, IL United States: Share on Facebook

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Nea's Mom's Discussions

Using natural supplements to alieve symptoms?

Started Dec 4, 2010

Creating a database....
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Started this discussion. Last reply by Nikolaos Papadopoulos Dec 20, 2009.

Those with crani scars...
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Started this discussion. Last reply by Jake M Dec 14, 2009.

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Red Ribbon From Teresa Whobrey Boombox From Seans Mom

Nea's Mom's Page

Latest Activity

Kim commented on Nea's Mom's group 'Teens with AVMs'

Hey Everyone, I'm nineteen turning twenty but I figured I still made the cut for teenager for now lol. My AVM is on the left side and the size of a pea so I am lucky that way. It was too far into my brain to do a crainiotomy, so they did one…

yesterday

Teens with AVMs

This group is for teens who are dealing with AVMs...

Kim joined Nea's Mom's group yesterday

12 Comments

lolo commented on Nea's Mom's group 'Teens with AVMs'

I am only 16 and my avm ruptured a few months ago and I'm trying to get back to my normal life

Feb 8

Teens with AVMs

This group is for teens who are dealing with AVMs...

Zoe joined Nea's Mom's group Feb 4

12 Comments

Teens with AVMs

This group is for teens who are dealing with AVMs...

lolo joined Nea's Mom's group Feb 2

12 Comments

Teens with AVMs

This group is for teens who are dealing with AVMs...

Monique Nelson joined Nea's Mom's group Jan 24

12 Comments

Teens with AVMs

This group is for teens who are dealing with AVMs...

Coco joined Nea's Mom's group Jan 22

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Nea's Mom replied to Gavin's mom <3's discussion 'one scared momma!' in the group Parents of AVM

Hi Gavin's mom. What a tough start your little guy has had... and tough on you and dad, too. My daughter didn't have an angiogram, but other parents on here have had that experience. I hope you find the support you are looking for...this…

Jan 5

Nea's Mom commented on Ben Munoz's group 'Parents of AVM'

Hi Sarah's Mom, I remember when Nea first got the news that instead of coming off Keppra, she should expect to continue it for at least another 5 years. That was so hard for her to hear. She, too, is troubled by depression and we do think that…

Dec 30, 2011

Nea's Mom commented on Ben Munoz's group 'Parents of AVM'

I think there are a variety of treatments for PTSD / stress / anxiety and probably the best solution is not the same for all. Here's an interesting article about PTSD that may be a good first…

Dec 22, 2011

Nea's Mom commented on Ben Munoz's group 'Parents of AVM'

Jean, my daughter was 19 when she had the stroke and brain surgery to remove her avm. I think we parents spend so much effort and emotion helping our children deal with how this affects them, we don't realize how much we are affected. My…

Dec 21, 2011

dycha commented on Nea's Mom's group 'Teens with AVMs'

Hey, im new here. Somehow it's nice to know people who is 'similar' with me. My AVM is unruptered, and know i confuse which medical treatment should i take. Mine's not really big it's on left-occipital of my brain. I have…

Dec 6, 2011

Teens with AVMs

This group is for teens who are dealing with AVMs...

dycha joined Nea's Mom's group Dec 6, 2011

12 Comments

Nea's Mom commented on Ben Munoz's group 'Parents of AVM'

Taitlyn, I am so sorry for your loss. There are no words of real comfort I can offer. Again, I am so sorry.

Nov 18, 2011

Teens with AVMs

This group is for teens who are dealing with AVMs...

Becca Butler joined Nea's Mom's group Nov 1, 2011

12 Comments

BabyGirl99 commented on Nea's Mom's group 'Teens with AVMs'

I had a seizure this May infront of my best friend near the end of freshman yeah in high school. Now im 15 and i have had 2 grand-mal siezures alone since. Recently in the end of september i found out that i have to get open brain surgery. Idk what…

Oct 7, 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?: March 7, 2009

What is the status of the AVM?: Obliterated

How was the AVM treated?: Crainiotomy

If treated, when was the AVM treated?: March 11, 2009

Describe the AVM (location, size) if you know it.: left parietal lobe, size of a raspberry

Please share your AVM experience. (Discovery, symptoms, treatment, recovery): My daughter has always complained of headaches, even as a child. But they were not debilhitating. In her late teens she started getting migraines. These were mostly controlled by over the counter migraine meds. In January of this year, her headaches became significanly more devastating. We had seen a doctor to get prescription meds and it was recommended that we see a neurologist. As my daughter was finishing up winter quarter at university, she wanted to wait until her spring break. Unfortunately, spring break came 1 week too late.

On 3/7 she had borrowed my car. When it came time to drive home she called to tell me she was too dizzy... that was how she described it. Only later, did we understand that "dizzy" meant she was having trouble finding her words, walking in a straight line, dialing numbers on her cell phone.

Since she was unable to drive, her dad and I drove to pick her up. When we did so, we could see something was wrong, we just didn't know what. So we took her to the local hospital, to the ER.

Unfortunately, the intake nurse didn't ask the right questions/assumed it was migraines or something not serious so we sat in the ER for about 90 minutes.

During this time, her speech was getting worse and worse. I finally asked her to write something for me and when I saw she couldn't write coherently I really got scared and told my husband to get someone NOW. As he was struggling to get someone's attention, my daughter had a seizure.

At first the ER docs thought she had menengitis (being a college student and how rapidly her condition degraded.

But after the CT scan and the MRI it became clear that she had an AVM.

We were unbelievably lucky that we were in the ER when her seizure occurred. And, even luckier because the hospital we took her to turned out to be one that is a "go to" hospital for brain tumors and other brain surgery needs. Further, the head of the neurology surgical team took her case, and he is a nationally known expert in this specific surgery.

It is now just over a month since her seizure/stroke.

She has recovered about 85% of her abilities. She can walk and talk and care for herself. She can play her piano (with some mistakes). But she's extremely tired and reports that everything seems to take so much effort. And she has issues with memory. And with dealing with all this emotionally.

It may be too soon for her to visit this site just yet, but it's good to know you all are here if she does want to reach out.

Nea's Mom's Blog

Keppra and depression

Has anyone felt great emotional saddness while on Keppra? Has anyone had any remedies for this that worked?

Nea has tried 3 different types of keppra (500 mg twice a day, 1000 time release 1 a day and 750 1 a day) and still is afflicted by sudden, unreasonable saddness.

I hate to start down the path of having her take a medication to counteract the side effects of another medication but she just can't go through years of feeling this way. So we're going to talk…

Continue

Posted on May 28, 2010 at 11:10am — 7 Comments

Update

Nea had her 6 week post op check up today. The CT scan showed only good things... she's healing well, no surprises, no worries.

Her doctor has cleared her for all activities... apparently what we thought was a seizure may not have been, it may just have been the stroke. So this means she doesn't have any driving restrictions and doesn't need to be reported to the state.

She's still so tired much of the time she's not yet ready to drive (or swim or work out at the gym) but… Continue

Posted on April 23, 2009 at 11:04pm — 5 Comments

Comment Wall (37 comments)

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At 9:09pm on January 31, 2011, Ed Gomes said…: Thank you

At 3:49am on November 27, 2010, sue Bilson said…: Hi Nea's mom

Yes the initial MRI scan showed tw avm's one in the peritail lobe and one in the posterior fossa, she has now had the angio which will tell us exactly where, how big and if they can be treated, seeing the doc on the 30th Nov.

Ash currently suffers headaches most days, she is getting forgetfull, and has had some episodes of dizziness. We became aware things were not right five months ago when she had two episodes and severe headach with dysphasia in one day, I tool her to the accident dept at hospital, nurses and junior docter were very concerned but senior doctor was very rude virtually told me I was being nuerotic and to take Ash home as it was 2am and she was slurring because she was tired. The junior doctoer came back to us and told us she was worried about this systom and please take her to the GP on monday, which we did and eventually three months later we got a nuero appt and scan.

I will lwt you know how she gets on.

Are you on face book I am under sue bilson.

Love sue xx

At 5:38pm on November 26, 2010, sue Bilson said…: Hi Nea's Mom,

I am so glad to hear Nea's has made a great recovery. I am hoping Ash will. but we have now been told one of her avm's is in the posterior fossa, which can be hard to treat due to its location. We are due to see our doc next tues for results of her angio which will give us a better idea of prognosis.

sue xx

At 7:27pm on May 25, 2010, Teresa Whobrey gave Nea's Mom a gift…: Red Ribbon
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At 6:24am on March 15, 2010, Susan Troop (Lindsey's Mom) said…: Thanks for asking! Lindsey is doing great. It is like she never had the surgery. We are very thankful. I'm not quite sure how we got through a bleed, and surgery without any deficits, but I guess it is location. Now we just hope we get the definitive "all clear" from her angio in April so we can close the book on this adventure, well, at least until follow up MRIs in a year or so. You know what I mean!!

At 11:53am on March 14, 2010, Susan Troop (Lindsey's Mom) said…: The waiting is always fun isn't it??? Can't wait to hear the good news!

At 8:30pm on March 12, 2010, Susan Troop (Lindsey's Mom) said…: How did the MRI go today? All good news I hope!!

At 9:53am on February 16, 2010, Michele Chatsey said…: I'm so glad to hear Nea is doing well!!!
I find it very interesting that before her injury Nea would remember great details, so did Stephanie!! It was amazing how much detail she would remember. Even stuff from grade school!! Only time will tell how her memory will be now.

She can't talk yet. So they put a buzzer in her hand. We can ask her a yes or no question and she buzzes 1 time for yes and 2 times for no.
The only problem with that is when she has muscle spasms she accidently buzzes. But, it's better than not communicating at all.

I'm glad you told me about Nea being very tired. Now I know it's part of the process.

I can't thank you enough for sharing your experience with me.
You have been very helpful!!!
You and your family are in my prayers!!!

At 5:07pm on February 15, 2010, Michele Chatsey said…: Thank you so much for all the great information!!! I really appreciate it!

How is Nea doing today? Does she understand what happened to her? Does she remember being in the hospital?

My head is filled with so many questions.

At 9:07am on February 14, 2010, Michele Chatsey said…: Yes, Stephanie is at the one on Superior.
That is the hardest part, not knowing what she needs. That would be wonderful if you could share with me what your daughter needed at this stage!!!

As you know they do 3 hours of therapy a day, so she is pretty tired.
Other than that she is doing very well!!