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AVM Survivors Network

18 days til son’s craniotomy


#1

I’m a nervous wreck. Can’t sleep, feel like a constant knot rolling around in my stomach. I’m just so nervous that a rupture will occur before surgery. I’m so anxious. My son has no fear and that makes me a nervous wreck. He’s been sidelined on his lacrosse team but screams and hypes up his team. I’m just scared it will rupture because of all that yelling. I know anything is possible and that’s why I just can’t relax.
Advice on how to relax would be appreciated.
Lisa


#2

Lisa

There is no way that thing is going to rupture in the meanwhile. I will send you a good scotch (or something else) all the way from here if it does. It was discovered as a scan for something else. If he had symptoms from it, I’d be more concerned, but I’m sure you’ve said none.

So… for the moment, relax. You’ve done everything, if not more than everything you can do at this time. You have set everything in motion. There is nothing to worry about in the next 18 days. Honest. The only thing I’d keep an eye or an ear out for is that he is still cool about it. It will be perfectly normal for you both to start to get nervous about the operation itself, so stay as calm as you can when you get to that stage (I’d say a day or two before is ok to start to think about the day itself) and lean on each other a bit. You support him… he supports you. His apparent calmness at the moment might be a sham or might become a sham, so keep a steady eye out for the facade slipping. He’s probably reacting to your reaction at the moment. I think there’s a middle ground that I hope you can find together.

Chill out about it. Keep busy. I know it is the hardest thing but you’re putting yourself through the mill for no advantage. Chill.

We are here every step.

Richard


#3

You are right and I know that, but my mind has me going all crazy. He knows I’m a bit sensitive right now but he doesn’t see the crazy in me. Thank goodness. I just can’t relax. It’s night time that gets me.
Noah is as cool as a cucumber. That’s his personality. He does think that when the time comes he’ll be freaked out but there’s nothing to worry about now. I wish I could be more like that but I don’t think I’ll relax until he’s doing well recovering.
Thank you for your support.
How have you been? Have you heard any news?
The waiting game is never fun! A shot of scotch may help.
Thanks for your encouragement,
Lisa


#4

Lisa, completely understandable for sure. My son had surgery at 6 1/2 months old where 15 cm of his bowel was removed due to a disease called hirshsprungs. That was 12 years ago, but scared the crap out of us leading up to it. Sounds like you’ve got all the bases covered, and the doc’s assessment is so positive. Noah’s got you in his corner, it’ll be okay. Take Care, John.


#5

It’s hard when it’s your child. That’s for sure! We all want our children happy and healthy and I think, as you know, until that happens, I’ll be a bundle of nerves.
Thanks for trying to help my nerves,
Lisa


#6

Its all normal to be like this but if I could find the right words to help you into a better place for the next three weeks, I’d tell you those words. I’ve only got the written word to influence you with!

I hope you don’t take to the scotch and I am confident that I won’t need to mail you a bottle, either!

I’m still in limbo. I got the letter from my consultation on 8th March the day after my angiogram and it seemed quite random… the information the consultant was sharing with my wider care team felt wrong to me, so I rushed out a bit of a “correction…” letter that may not do me any favours. We’ll just have to see.

I was back in hospital briefly on Monday night as my embolization wound (the tiny cut in my groin for the catheter to go into) had been sore for a couple of days and I found a hard lump in it. So rang the doc and was asked to seek help promptly. Fortunately, when I got to see a doc (circa 1am) he was comfortable that I had had a bit of a bleed internally but he didn’t think it was an aneurysm. It has subsequently done as he said and gone down a bit.

It was funny… the ER nurse I saw prior to the doctor didn’t say much to us other than “I don’t know… I’m having one of those days… I cant for the life of me spell aneurysm.”. We came out of seeing him and my wife said “what do you think it is?” since we hadn’t had an explanation thus far. So I said “well, there’s only one reason for the nurse to be wondering how to spell aneurysm!”. Anyway, fortunately not an aneurysm.

Still feeling the same. Just butting my way through life, meanwhile. I can’t worry about it unless it really does something strange. My “protection” meanwhile is just to wear a medical bracelet and to make sure the people around me know to act promptly if they find me confused or lying indecorously on the floor.

Try to get into a more relaxed mode yourself. It will do you good. I’m glad Noah is a naturally cool guy. I’m sure it will serve him well.

Lots of love,

Richard


#7

highly unlikely it will rupture before the surgery… stay strong for your son and let him focus on his buddies and lacrosse rather than what is going on in his head and what is in front of him. for you…breath and have a glass of wine and look at the positive fact that you found the avm and it is operable and in a good location.


#8

Perhaps his yelling for his team is actually helping him to keep his blood pressure lower than holding it in. I agree it’s highly unlikely to rupture before his surgery. I will be thinking and praying for you both that his surgery goes as smoothly as mine did, and his recovery too. Your son’s case is so much like mine…only he’s a lot younger so he should bounce back faster than I did.


#9

I was twenty when i had a craniotomy, and behaved like it all the way til day of. I was fine. Walked out of the hospital a few days later like it never even happened. Stay cool. Follow your son’s lead

  • Chad

#10

Where was your AVM? Did they find it by accident? If you would like, please tell me about your story. The more positive stories I hear, the better I feel.
Thank you, Lisa


#11

It was on the right side of my brain. I forget the location therein. I had a weird headache for 3 days & went to the campus health center. Doc sent me to the radiologist, and then back to the doc for diagnosis. They transported me about 90 miles in an ambulance to a for real hospital. There at, the doctors determined it wasn’t an emergency. So i went home to New Jersey, got a brain surgeon, and developed a plan. I choose surgery instead of gamma knife and had 4 embilizations & a crainiotomy in the coming 3 months. 4 months after diagnosis, i went back to college good as new, like it never even happened.

13 years later, I’m totally bald with a spooky looking scar. And i take a anticonvulsant pill 2x daily. Otherwise, no sweat. The whole thing sounds way worse than it was. Hope this helps
-c


#12

Thank you! So glad it seems like it didn’t get you down. Hoping for my son to have the same outcome.
Lisa


#13

I have a nice scar too but hidden by hair. No need for any meds at all, completely back to normal without any more ‘migraines with no pain’ that I had 5-7 x day before the craniotomy.


#14

That is awesome! I bet there’s nothing like being AVM free. I can’t wait to have that peace in my life.
I hope he doesn’t have headaches afterwards or any other problems.
Thanks for all your replies because they have put me at ease.
Lisa


#15

Yes, AVM free is a good thing. I do have a ‘fenestrated right PICA’ in my head, which is another vascular abnormality, and at some point can turn into an aneurism in the future. I’m hoping it never does because that can cause a massive stroke. So that makes 3 different vascular abnormalities I’ve had in my head.

I’m glad my experience is helping you understand more about your sons condition, and putting your mind at ease. Yes, brain surgery of any kind is scary but your surgeon feels the risk of surgery is worth more than living with it as is. Otherwise, he’d be leaving it alone right now. If your ask the surgeon, I bet he’d be conservative about shaving your sons head for the surgery like mine was. Unless I part my hair, you can’t see my scar at all and the hair he did shave is growing back.


#16

Were all 3 abnormalities discovered at once? I did not realize this. What is a pica? I googled it but I’m sure you can explain it better. Which other vascular abnormality did you have?
Honestly, my anxiety jumped amped up.
Lisa


#17

Posterior Inferior Cerebral Artery (PICA). Instead of one nice big vessel, it has a sort of roundabout in it. Those tend to weaken with time, sometimes turning into an aneurism with the resulting stroke. My blood pressure is a bit on the low side so not much risk, at least not now and I’m in my late 50’s.

Yes, all three were found relatively at the same time. Investigating the hemangioma (tumor made up of blood vessels) in my tonsil for surgical strategy dealing with it is what lead to the discovery of the AVM, the craniotomy found the fenestrated PICA. And I was born with all three apparently. Hope they never find more.

If your son has already had an angio-ct they would’ve found everything in addition to the AVM.

Lori


#18

In my first angio when I was in with the bleed they did my whole brain while trying to identify the cause. The second time around they knew exactly where to go so only did the left side as no other concerns based on the first one. John.


#19

Yes, my son had his angiogram and the AVM was the only thing found.
Did you have the hemangioma removed too?
Lisa


#20

Yes, I did…2 months after the craniotomy. The fenestrated PICA is still in there, being watched. Said they couldn’t do anything unless it becomes an aneurism. Why not put a biological straightjacket on it so it can’t stretch and weaken I asked them. Never been done.

Lori