Had my second embo done and it split into two days because my heart rate dropped to 20 because the vega nerve was disturbed/tense so they continued the next day. With that said… It went better…pain is still there and headaches but they gave me enough medicine to control it this time.
Then my neurosurgeon called and said the cranitomy will be this Tuesday instead of this Friday. And my embo is Monday before it. Third embo.
I’m freaking out!!! Bad. What if I lose some of my vision? What if I die? What if I have a stroke? What if I get paralyzed? What if I have seizures forever after they remove my avm? I’m so very scared. It’s giving me headaches. I know I should be relieved this is almost over but I don’t want to be blind! I don’t want to suffer1
Time for a primal scream…Aaaaauuuugh! Feel better? Of course, we all freaked out. Perfectly normal reaction. Try and concentrate on the word…OBLITERATED!
So let us take some of your bigger worries. Stroke…I had one ( it was massive) I learned to sit up, crawl and walk again. It sometimes can be done. Seizures…lots of different meds these days to control them. A good friend of mine has epilepsy and she is an International Flight Attendant! Blind…not too great. On the other hand, let me mention Helen Keller and Stevie Wonder. Bet you know them! Suffer…hey you are not alone anymore. Just remember there are over 7300 Survivors on this site. Look at header on this site. It says We are AVM Survivors, here for your support. It does not say We are AVM Victims. Best wishes and please keep us posted!
Its natural to be scared as its a big deal...i was really scared but looked at my life and thought im too young to give up and stayed strong and positive with the hope that whatever comes out of it i would be alive ....thats the big picture Chelsea at the end of the day...remember there are others out there much worse...i mean ppl with brain tumors, Cancer etc etc...its hard but you need to be stong and have faith in God that all will be alright...I will pray for you also...God bless!
It's a scary thing you're doing, getting medical treatment that could have some side effects that will negatively affect you. It's also a very brave thing - you have a lot of courage to have weighed your options and decided to go ahead with treatment.
What you "should" feel like doesn't mean anything - you have a right to feel the way you feel. If your anxiety is overwhelming, ask your doctor to get you something to help with it. It won't completely take the anxiety away, but it may bring it down to a more manageable level.
And while it's possible there will be complications, it's also possible that there will not. You may come out of this just fine and be free to go on with your life without an AVM anymore.
Your doctor will take good care of you; that's his job.
When you find yourself thinking about all the bad possibilities, make yourself take a deep breath, let it out, and force yourself to say "But it's just as possible that I'll have a wonderful outcome."
Chelsea, It is normal that you are scared, but please have faith that your doctor will remove your AVM and you will become AVM Free. Please know we all will be thinking of you and sending positive energy your way on Monday & Tuesday...Stay Strong & Positive...it worked for me.
Chelsea - it is terrifying. And no 2 people or situations are the same. Here’s what I’ve learned in becoming part of the crainiotomy club, just 3 short months ago.
It is super scary. But you are super strong.
It’s natural to freak out. But trust there is a way through.
Your attitude matters, and positive vibes are the only option.
In fact, your attitude can and will carry you.
Trust in your surgeons hands.
Know that possibilities can trump probabilities.
Find your joy but stay tough.
Lean on others.
Do what you need to do to get you through this.
Stay positive… Surround yourself with love & support - and if you believe in a higher power, pray.
I was right there with you, on Aug 5th - I had a “probable tragic” situation; I didn’t even process what a true crainiotomy meant…I was scared, very scared. But today, I am lucky, very lucky. Here’s wishing you luck, positive vibes & strength to realize how very tough you are.
Will keep you in my prayers! -B
Chelsea, Good luck with your Cranio, As a person who has had 2 , Sure its brain surgery but don't worry about it, The surgeons do this every day :) , Its just like me going to the office and writing an update for a program (IT Developer :) ) if its what you do everyday then its not a big deal, These guys and gals are the best at what they do this is why they are brain surgeons. You'll be fine !, Just go in with faith that everything will be ok :) . Take care
Hi Chelsea, all of us who've had craniotomies had the same thoughts, questions, freaking out. You get through surgery. And whatever deficits your might have when you awake, you fight them. FIGHT THEM! It's a marathon. Not a sprint. You have the advantage of being very young too.
Get in your mind that there's no option other than getting better. It will be long and difficult. But think of the things that bring you the most joy. And how you will back enjoying them. For me it was music, playing the drums, mountain biking, rock climbing. They were the proverbial carrot...stick. Eventually I got back to them most of them.
Plus just look at all the love you're surround with: family, friends, and thousands of your AVM brethren out here sending positive waves.
There is indeed long and happy life post-AVM. Reach out to any/all of us. We ain't going anywhere.
Hang in there Chelsea. as someone who has lived through a stroke, a seizure AND blindness due to my OWN AVM; I can tell you that you will live through all of these things. If somerhing goes wrong you will be angry for a long time but in the end you’ll realise that you’re stronger than your anger, stronger than your fear and finally; you’ll find that you’re stronger than your AVM and everything it puts you through.
I know where you're at. I was terrified!! I seriously went coo coo for coco puffs before my crainiotomy. It was way too much for me to process and I was worried that I would leave behind a Husband and 3 children. AVM's are rare but the good news about them is that they are a lot like an anuerysm. So neurosurgeons already have the skills to extract and obliterate them. The technique is pretty close to the same and the risk for serious complications are very minimal. Just know that you are allowed to freak out right now. But hopefully you will get some words of encouragement and comfort here. That's what this group is all about. Good luck to you.
Hi Chelsea, I think everyone’s already said it all. We are all with you in mind and heart and will all think of you on Monday and Tuesday. I’ve never had a crainiotomy so I can’t offer any advice but I know that would be scared too, although I’m sure everything will be fine. Think positive, nice thoughts, and of your many friends on this site. Good Luck my friend, will watch out for your news when you can tell us all how it went. The docs know what they are doing. Be strong. All my,love and hugs Pauline xx
I just read your post, so I'm sure surgery is over. I would like for you to post as soon as you are able to do so. I am very concerned and hoping and praying for a good recovery.
Thank you Barbara,you are right. I needed that extra boost before going into surgery. To be able to learn to walk again and handle seizures…is just amazing and can be done. I got stuck on the what ifs but thank you for explaining the positivites of each. That really was nice
Thank you again Adrian for those encouraging words. I know cancer and spinal avms and aids etc is so much worse and I tried really hard not to stress with big deep breaths. Everyone i saw in the hospital always had a much worsw situation than me and I felt so sorry for them and confused why I have been so truly blessed. I did all I could do to get through it and now I’m AVM free. Thank you!!! That is so nice. I am so thankful for what I have and the life I still have. This has been one crazy journey and I really appreciate your kind words to help me get by
Thank you Shirasaya, that was really helpful to read before my surgery. The power of deep breathing! I know I focus on the negatives too much because I’m scared that if I don’t, then I took life for granted. Its a weird vicious circle that I’m sure doesn’t make any sense. But yes I am home now and my neurosurgeon did an amazing God gifted job. I can’t believe I am walking and speaking normally after brain surgery! Thank you so much for the support. I did have anxiety meds given during my stay too and it did help a lot and also with my family support
Wow it’s all over, what a relief. So, so happy for you. Everyone’s prayers and good wishes obviously worked. You have been so brave having all of the procedures done, you deserve a medal. Just so r lived for you, it’s made my day hearing your news. All my love and hugs. Pauline xxx
