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AVM Survivors Network

Just an update

It’s been a little over two years since my diagnosis, embolisms, and craniotomy. I’ve been doing amazingly well…my hair grew back except where the scar is. To look at me you’d never know I had brain surgery.

I had the ‘chasing lights’ optically a lot before my surgery (the AVM making itself known but thought to be migraines without pain) and it vanished afterward for over a year. I now have the occasional ‘chasing lights’ when my bp is up a bit, neurologist speculated it might be seizures. Tested for that but no, it isn’t. Only thing we can figure is it must be from scar tissue where my AVM was removed since it was on the surface of my visual cortex behind my right ear. The whooshing I heard after surgery lasted about eight months, now it’s gone and hasn’t come back. I returned to my job immediately after my surgery (as a crossing guard) with only one accommodation: a 2 hour nap before my afternoon shift. I tired easily for nearly a year…now I’m fully my old self. My scalp that was numb after surgery is still numb but I’m used to it now. I was told it was 50/50 that it would stay that way.

Since my life-saving surgery I’ve sent my neurosurgeon a card every anniversary to let him know how I’m doing and how grateful I still am he saved me. I’ve bought a house, slowly renovated it, resumed dating after not for over 20 years, and finally learned how to swim. After almost drowning in a pool at age 4 and 3 failed attempts to learn how, this is a MAJOR accomplishment for me.

Overall, I have to say I am beyond grateful for my neurosurgeon, my mom who has stood by me always, and what I learned from the people in here. Your advice, stories, and support …you took some of my fear away when I really needed it.

THANK YOU ALL! Stay strong! Live well!

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Thanks for the update and awesome to hear! Take Care, John.

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You too! Great update! It’s really encouraging to hear such great news all through. Thank you for sharing!

Richard

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Great job. This is awesome news. Keep it up.

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This is a great post and I personally always love seeing these positive posts as it helps others realise there is light at the end of the tunnel… God bless!

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Celebrating with you! Thanks for taking the time to update. My family haven’t sent cards or yummy gifts to our surgeons and care team for a couple years – all our activity started six years ago and was mostly over four years ago. So, it’s time we let them know our gratitude for their work is as strong as ever. Thanks for the reminder.

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You celebrate your life everyday and it is so uplifting to see that! You recognize how fragile life is, don’t you?

Neurosurgeons deal with a great deal of sorrowful situations. I’m sure the updates to your neurosurgeon bring him/her great joy and a true sense of accomplishment. (‘Makes me happy, too!)

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Yes, I literally came within 12 hours of dying! I was floored when my uncle let it slip several weeks later…my mom had decided I didn’t need to know that information.

In the last two years I’ve also became a great-aunt twice and soon to be one for the third time! I never would have known them if not for the grace of god and my neurosurgeon (and his staff–wonderful people!). I actually stood up in church when the pastor asked what we were grateful for, and I told them about my surgery…the collective gasp in the sanctuary was quite loud as they didn’t know about it then and you couldn’t tell to look at me. (I started attending after my surgery)

Hi, loripetnut!

I had to nod as I read your last entry. You look and seem so “normal” that people don’t have a clue of what you have experienced (and still do). Congratulations! You are a living miracle as a nun used to say to me.

On the other hand, I don’t know if you experience this: Sometimes the unseen neurological impairments will limit my activities. People seem to be puzzled, since we look fine. I explain, on a need-to-know basis. Yet, these situations bother me. I wonder if the person doubts me, thinks I could do more if I just tried more… Do you know what I mean? I know the only control I have is over what I think and how I respond, but still… Any thoughts?

And, just because… Lori, are you a pet nut? If so, please explain. Have they been supportive in your journey? Mine have been!

:cat: lifeisgood

Your mom probably just wanted to protect you from such a scary information?

This is VERY common. People have said to me 'Ohh, but you look fine…" My response has often been “You want to have a look from this side…” if they still don’t ‘get it’ I sometimes lift my hat, then they see all of the scars and holes in my skull. Some of the gasps of shock make it obvious, they get it, now. As I’ve often said before ‘…Sometimes I think it would be easier if I’d lost a limb. People wouldn’t have that doubt, they’d be able to see my impairment/s, but when its invisible, some seem rather quick to judge…’ and as another member of the Ben’s Network says ‘Brain injury, you don’t know it till you’ve lived it’.

Merl from the Moderator Support Team

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Thanks for the personal insight. I would sometimes think to myself, “So, YOU would feel better if I was sitting in a wheelchair, drooling? Then, YOU’D understand?” But, then I reflect and realize there are plenty of people around me that have hidden impairments. Be kind to everyone… You never know.

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I am! If it’s got 4 feet and fur I’ve either had is as a pet or knew someone who did.

My mom’s cat Bijoux was very sweet, loving, and careful of my head after surgery. I also soaked up the love from the other furkids in the building (my mom and I had separate apartments but on the same floor). All those loving healing vibes from them helped.

After my surgery when I woke up I was asked if I wanted anything to make me feel better. I asked if they had a kitty I could hug? (no) A dog? (no)……the therapy pets were in the childrens’ area of the hospital. Could they bring me one ? (no) Could I go there to see them? (no) Asked them how was I supposed to feel better without a furbaby to hug! My mom went and asked the lady down the hall who had a visitor with a dog if I could meet her dog. (yes!) Mom explained how much of a pet nut I am and how I really needed a furkid to love on to make me feel better.

If anyone really doubted if I’d had brain surgery I just part my hair to show them the scar that runs from the crown of my head down to the nape (took 25 staples to close that)……those people suddenly get really quiet and look embarrassed. I tell them “But for the grace of god and a good neurosurgeon I would not be here.”

Yeah, she said as much. But I’m a realist…the more information the better. She was scared to watch the surgery video I looked up the night before mine, but it took a lot of fear away for me. SHE probably wouldn’t want to know how close to death she came…but for me it makes me more grateful to still be here!

A good way to look at it, Lori. Let us all look FORWARD now, since we HAVE IT, now! GOD BLESS YOU!!

Dear loripetnut,

I admire your tenacity in finding what YOU need to heal. I can understand that initially, they wouldn’t want your incision (or any IV sites, etc…) to be infected. I, too, have a scar in the same region, crown through neck. (And, dips where a burr hole was and an ICP line was! You, too? ).

Our furbabies comfort us, reduce our anxiety, and give us strength to confront the challenges of healing. I didn’t have a pet at the time of my surgery. However, after returning to my place, about nine months later, I spotted a one-year-old, calico cat. Adopting her was the best! She gave me something pleasant to focus on, instead of my problems. I saw that I was still useful, and this led to volunteering at the local SPCA. And, I began researching feline behavior. Most of all, she was always there for me, and me for her!

Your love for animals will help sustain you. :two_hearts:

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