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Permalink Reply by Joy on April 3, 2010 at 2:40pm

I think we all try to find some good in each of our own AVM nightmares. I remember praying that my son would be able to have treatment. That was all that important to me at the time and continues to leave me very thankful that he was able to have Gamma Knife, despite what we have been thru since.

I think everyone needs to go thru their own journey of feelings thru all of this and sometimes if people do feel negative, it is just another stage. I fully believe in letting yourself feel whatever feelings you have as they present. You can be incredibly angry at the world and the situation and then somehow you find your positive side again.

I can give you a good story because my son's Gamma Knife is working wonders on his AVM. Our doctors have told us they see 'significant shrinkage' in his AVM after only 1 year. I can tell you that we have awesome amazing doctors looking after him who have compassion and expertise that leaves me speechless. Our family has been an amazing support for us too and we are all closer as a result of this. This site has kept me sane for the last 2 years.

All good stuff.

Personally I feel like God plunked this problem in my lap and then sat back and watched how I handled it, so I knew I had to find those things to be thankful for. But he also gave me amazing people around me to help us thru it and knowing that others care is really the only thing that helps me thru it.

Watching your child handle adversity with such courage is a gift in itself. Although this is not ever what I would have chosen for my son to endure, he appreciates his life. I have always looked at this situation as a way to teach my child how to handle adversity in life. Everyone will have things they must overcome and deal with and his is just a big "mountain" at a young age so we are climbing it together, one step at a time.

I'm sure so many of us look at life's other "little problems" very differently now. Who better to understand the saying, "Don't sweat the small stuff" better than an AVM survivor.

My daughter said something to me once after a particularly difficult appointment for her brother who has the AVM. I was crying and she said to me that I should never give up hope because in the years to come they will always be working on better treatments and more options. And she was so right! No one should ever give up hope for progress in our medical world. Keep asking questions and searching for answers and stay positive somehow because your child is watching you.

Good for you, Tony for all that you are doing to get your daughter the best care. What a tremendous Dad you must be. I do hope you gain some support from this group like I have. Thinking of you and everyone else out there.

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Permalink Reply by mary kate on April 3, 2010 at 6:44pm

I am happy tio see your post, because despite my constant headaches, I try very hard to see this as positive. Just having an experience where you come close to death makes you appreciate being alive. I feel like even though I had a bleed, I was fortunate that I was able to get to the hospital quickly and excellent surgeons were on call in the emergency room. I was also fortunate with the outcome of the whole experience, even though going through it was horrible and scary.
Ok...here's my positive story. I was driving with my 2 kids when my AVM bled (didnt know I had one). I made it to my parent's house with less than five minutes before being unconscious. I had what they called a major bleed (2 inches). And the dr. told me, had I been five minutes later to the hospital, my brain would have been so swollen, it would have herniated and I would be dead. My family was told I would definitely be paralyzed on the left side and probably have other brain damage. I woke up two days later, not paralyzed. I walked out of the hospital 13 days later. The speech and physical therapists could not find any damage from the bleed. I was back at work less than 2 months after the bleed. And I am totally back to normal, except my headaches.

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Permalink Reply by Tony on April 4, 2010 at 12:42am

Thank you Mary and Joy. Today was a much better day with me fully focused on spending quality time with my daughter. What I have realized is when I hear good stories I feel as if the good story wlll also transpire into my family. You guys are great for responding and caring enough to share your stories. I will continue to post and provide updates. I know that I will have good and bad days. I just can't believe something like this could be ocurring, but then realize that I am very lucky for what my family has. I have been blissed with two kids and I am making sure that now I focus 1000% on the quality of time spent.

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Permalink Reply by Jamie Pantelis on April 4, 2010 at 10:25am

The only way I can look at my experience is in a positive light. My AVM was found last Nov after I suffered a seizure. I had been suffering with excruciating migraines for most of my life and from what I now know other symptoms of the AVM, but every time a new symptom would show up I would google it and search until I found anything that said it was normal.

I remember every moment of the day the AVM was found. I had one of my migraine for a few days and on the third night I woke up and went upstairs got a drink and then I felt a pulling sensation on my left side moments later I was on the floor looking for my glasses. Found them got up went to the bathroom and saw I had rug burn on my cheek. Shrugged it off and went back to bed for a few hours.

Woke up at my normal to get ready for work and to get my boys off to school. As I was stilling on the computer Facebooking as I do every morning my left arm wasn't doing what I wanted to. I couldn't type I couldn't move it very well and while I was doing my hair I dropped the blow dryer. I thought to myself this is just not right called my boss and told her I was going to the ER and I would call and let here know what was going on. After a CT scan the doc comes in and says I see blood on your brain and we do not have the ability to care for you here. We have called an ambulance to take you to UIC. It was the best thing they could have done for me. I call my sister be for I am shipped out and she calls my mom and comes to meet me at UIC. On my arrival I meet Dr. Fady Charbel and he informs me of the tests and scans that will be performed. An eternity later he comes back and tells me I have an AVM. I am shocked to say the least, I had never heard of this thing before. During my stay the first time I am flooded with information and choices that were life and death and something I never thought I would have to make. Long story short I had on embo in Dec 09 and a craniotomy in Jan 2010. I spent 30 years without knowing my about my AVM and only 3 months to obliviate it. Now here is the major positive I am AVM free and alive! I do not have an deficits! I am no longer going to take my life for granted nor am I going to sit and watch it go by! I am so thankful for my doctors my family and all of you here who gave me support and answered my questions. I am going to live a long happy positive life and not look back at this as a negative. I haven't had a headache since my surgery. Of course I had pain after, but no headaches! I haven't had a seizure since the first one! I get to see my boys grow into men and I get to be an old lady!

I hope Morgan will have the same positive out come! You are in my heart and in my prayers. You are a wonderful Dad to look for positives and want her to have the best life she can. I don't know how I would handle it if one of my sons had to endure what I have. I thank the stars every night I was the one who had it! I knew I could fight and win.

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Permalink Reply by mary kate on April 9, 2010 at 9:52pm

Sionce the AVM, I am able to appreciat elife so much more. Its horrible to think but anyone's child can be hit by a car, kidnapped or inkured/killed at any time without warning. the AVM allows you to really refect on what is important in life and value the time u have with your daughter. Good Luck!

Tony said:

Thank you Mary and Joy. Today was a much better day with me fully focused on spending quality time with my daughter. What I have realized is when I hear good stories I feel as if the good story wlll also transpire into my family. You guys are great for responding and caring enough to share your stories. I will continue to post and provide updates. I know that I will have good and bad days. I just can't believe something like this could be ocurring, but then realize that I am very lucky for what my family has. I have been blissed with two kids and I am making sure that now I focus 1000% on the quality of time spent.

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Permalink Reply by jessica on April 11, 2010 at 3:02pm

here is a positive story for you :)

i went to a neurologist in jan '08 after a complex migraine, he said it could be a number of different things and i could get a full blood work up, ekg, eeg, and mri to try and find it. thank the lord my mom is a nurse and wanted everything done. the mri showed an avm. in mar 08 i had gamma knife bc i was not a candidate for surgery and he didnt like embos bc they dont last
feb 09: 1 year follow up (a little early so it didnt interfere with water polo), mri shows swelling but no avm, told i could live my life freely but to get an angio the next yr
mar 10: angiogram shows no sign of pre existing avm or new feeders, my brain looked like a "normal brain" (first time i had heard that :p ) i can do whatever i want now without the fear of a bleed and there is no chance that it will ever grow back and i will not need an angio or mri to check ever again

now that first year was one of the scariest years ever. i continued to swim, play water polo, and lift bc i could not immagine life without it but i ws scared that everytime my heart rate spiked or whatever i would bleed.
but now i am as happy as a bird and i hope dearly that everyone here can experience the same freedom that i do

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Permalink Reply by Tony on April 11, 2010 at 8:06pm

thanks jessica! we all need some positives in this life!!

jessica said:

here is a positive story for you :)

i went to a neurologist in jan '08 after a complex migraine, he said it could be a number of different things and i could get a full blood work up, ekg, eeg, and mri to try and find it. thank the lord my mom is a nurse and wanted everything done. the mri showed an avm. in mar 08 i had gamma knife bc i was not a candidate for surgery and he didnt like embos bc they dont last
feb 09: 1 year follow up (a little early so it didnt interfere with water polo), mri shows swelling but no avm, told i could live my life freely but to get an angio the next yr
mar 10: angiogram shows no sign of pre existing avm or new feeders, my brain looked like a "normal brain" (first time i had heard that :p ) i can do whatever i want now without the fear of a bleed and there is no chance that it will ever grow back and i will not need an angio or mri to check ever again

now that first year was one of the scariest years ever. i continued to swim, play water polo, and lift bc i could not immagine life without it but i ws scared that everytime my heart rate spiked or whatever i would bleed.
but now i am as happy as a bird and i hope dearly that everyone here can experience the same freedom that i do

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Permalink Reply by LAURA BESSER on September 23, 2010 at 2:21pm

5 years ago i had an artery blow up in my head.it is a miracle i lived. i take no meds.have had 6 brain surgeries.was in a coma.was life flighted.
told my girl i wuld die which still pisses me off.i'm getting married at the end of the year.i know i'm really lucky but i think A LOT of folks need the message of hope i bring..never NEVER give up or settle

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ModeratorPermalink Reply by Ron, Kansas on September 23, 2010 at 4:23pm

Yeah Tony and Morgan!!!!!!!!!!!!!!!!!!!!

Well, first off, NEVER lose hope, especially when the Drs say they can't do anything. That's the same prognosis we received when my wife's AVM showed up about 1991. The neuros said the only way they would operate on her is if she were hemorrhage and she was gonna die anyway, then they might operate, though she'd likely have a bunch of collateral damage. Great news, right?

Well, she did have Proton Beam radiation about 1992, but that didn't appear to shrink her large AVM. So we did some more checking, with some of the best DRs we could find. UCLA said it was too risky (they'd treated 300 like her's) and Stanford said "come on down and we'll fix it!" They have treated 3,000 AVMs at the time.

It took multiple embolizations, microsurgery to finally remove it, another PB radiation, oh, and surgery to correct a brain aneurysm along the way.

Anyway, that was 10+ yrs ago, and other than right leg nerve damage along the way, she is AVM FREE! She won't ever be able to run or play tennis; in the giant scheme of things, we are both ELATED with the results.

Moral: NEVER GIVE UP. Keep asking Drs till you find one with confidence that they can fix it.

Story #2: Our son started having complex partial seizures (not from an AVM) in middle school. Lots of combinations of drugs didn't stop them. We went to an epilepsy hospital in Minnesota for more testing, and after waiting 2 more years to try more meds, our then 17 year old son elected to have brain surgery to remove the hot spot areas. Thankfully, he has no defects from this and has not had a seizure since the surgery. I gotta tell you, it was PURE HELL for us watching him go into surgery.

The first part of the surgery was absolutely amazing and also terrifying. They opened the top of his skull, mounted a 4x6 electrical contact grid, ran wires from the grid to computers, then monitored him for 10 days. During that time, they also sent small electrical charges to each contact on the grid to see if it caused any changes, triggered a seizure, or affected something he needed, like sight or speech.

We got to watch (?) some of this. They would be doing a neuro exam (touch your nose, count backwards from 37 by 3's, etc), then they'd charge an area. He might keep doing ok, or he might stop talking, or twitch his face, or have a seizure.

After all the comparisons of "good area" and "bad area", they determined that they could remove part of his brain safely and hopefully stop the seizures. It was a miracle to us!

Anyway, more happy part of the story. Another young man was in the same process as our son. Allen had surgery first, and was discharged the day that the friend was in surgery. Allen started to go to the Surgery waiting area to be with Joe's family.

He walked out of our room with nothing on his head--and he had about a 14 inch long "C" shaped scar that had probably 75 staples in it. NO Allen, you cannot walk into surgery waiting looking like that--wear a ball cap, which he did.

Now I say that partly cuz I think it's easier for boys to go with the shaved head/scar showing than for girls. Allen was laid back by it all, and even now, wears his hair short so most of the time, the scar shows through. If someone asks, he just says "oh, yeah, I had some surgery" like it's no big deal.

Many of his friends in high school knew of his seizures and they were fine with it. I hope your daughter does as well.

And the debate about 2% or 4% and is it cumulative--I've heard both sides that it IS cumulative and that it is not--that it's 2 -4% on year one, year two, etc. I know which one I'd like to believe.

Best wishes,
Ron KS

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ModeratorPermalink Reply by Hanne on September 23, 2010 at 5:26pm

Tony: I believe that positive thinking is a wonderful tool for quality of life in itself. Having hope for the future is not the same as if there are treatment options or not.

Not to have too much focus on all the things we may not do, or that there must be a treatment options to be able to have hope, but to focus on the things we are able to do, that we can live with an AVM without having a constant fear of a bleed, is nutrient to quality of life.

One way to show that life goes on (regardless of whether you have had treatment or not) is to share stories and photographs indicating that it is possible.

Positive thoughts and Love from Hanne xxx

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Permalink Reply by Jake M on September 23, 2010 at 6:53pm

I beleive that if someone were to do a search on my posts here, they would see a variety of positive and negative comments. I do not beleive there is anything wrong with allowing oneself to feel every single emotion that comes as a result of dealing with such a significant situation.

I think it is great that you are trying your best to remain positive and help your daughter live her life to the fullest. I had people in my life that did the same when I was dealing with all of my pre-surgery frsutration, confusion, fear, and genral physical discomfort and malaise. One thing that I would ask that you try to remember is this... If your daughter ever expresses emotions that don't generally fit the mold of what you might consider the "best" or most optimistic point of view, keep in mind that these are her feelings and it does not make them wrong.

Please don't misunderstand me... I agree with what you have said, but as a person that has experienced life on the patient end of the situation, I have had family members who argued that all they wanted was the best for me, but did not understand the unusual perspectives that take place when dealing with physical and emotional neurological damage.

I wish you and your daughter the best.

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