Starting to get really scared

Hi all, sorry time for another whinge,

I am getting so scared at the moment and because of that I am being so moody and snapping at my son all the time, I have no patience with him and then I get upset because it is not his fault that I have this AVM or that I have to have an operation to get rid of it, or that I have to shave. He also is very snappy one min then telling me how much he loves me the next, it upsets me to see him scared and worried about me. It really is just a vicious circle at the moment.

I am having my shave party Saturday and although I know that my hair will grow back, I just don't like to be the centre of attention, people stare at bald women because it is unusual and I am going to hate that. I will be wearing a beanie most of the time but you will still be able to see it.

It seems so strange that I am worried about going bald when I am going to go though brain surgery, worrying about something so little and trivial as hair. I am really disappointed that my AVM bracelets have not arrived in time for the party. I wanted to give everyone one.

I am very lucky, I have such a loving and supportive family, they do help me but sometimes I just think they do not understand how I feel, how could they when they have not been in my position. Although close, two of my nephews have had operations for their Chiari, But they do try. Maybe I just have too much time on my hands to think, I live with my brother who is a truck driver so he is not here most of the week. My son and I spend a lot of time alone, which I normally love. At the moment I just want adult company. I really just want my Mum, lol sounds a bit lame but it is true.

My mother lives in NZ but will be here when I come home after my operation.

The last few weeks I have felt pretty good and quite positive about the whole thing but for some reason the closer it gets the worse I am feeling, which is normal I suppose.

I have been trying to write a will just in case anything happens, I need to make sure everything will be ok for my son, I love him so much that sometimes it hurts, but every time I go to write it I get upset and just stop. I come on here and try to help someone else so I don't have to feel what I am feeling but rather feel for them.

Any way that's enough of the whinging for now, Thanks for listening (reading)

Stay strong everyone and take care


Hi Donna,

I sent you a message earlier,to try to ease your worries and to try to stay positive which is as I said in message easier said than done.I am not sure how old your son is my son was 22 and my Daughter 20,when I had my OP I did make a will as my situation had changed since I had made my first one. Also the night before my OP in Hospital I wrote letters to the important people in my life at the time.My only support at that time where my Children and close friends.

We are all different when facing a life or death OP all I can say is think af all the good things in your life and tell your self you will survive because you haven't finished what you want from this life. I worried the same as you and here I am enjoying my Grandchildren a new Marriage, which I didn't have before hand all I have on a downside is a weak right leg and arm,there are many that have worse conditions than me after their OPs and others with less, and as my Daughter said to me one day when I had the blues after my OP,Mum you are alive, not paralised you can walk and talk.

So since then I have tried to remember that,I just am sorry that we couldn't have meet for a coffee we are a far way apert and I don't drive I am not sure if we swapped ph numbers or not but I will send mine to you through the inbox as that is private so we could have a chat over the phone if you would like.

I just wanted to let you know you are in my thoughts and hope you start to feel a bit less scared, and let you know we all felt like that not that that makes it any easier for you,also this site was not around when I had my OP 10 years ago I wish it had been as I had never heard of AVMs untill I had mine.

So trie to stay positive and strong as I know you can I will send of phone numbers hope you do the same,and that I will meet you in person after your OP. Toodles for now Gay

It’s perfectly normal to be scared right now, especially the closer it gets to surgery day. I was lucky, I didn’t have to sit around and wait for mine. I was blissfully in a coma and unaware that I was even having a surgery :). And the bald thing…bald is “in” right now! I got lots of scarves, one for just about every outfit. People did stare but I didn’t let it bother me because I knew what I had just been through was far worse than ignorant people’s misunderstandings. I’m sure it’s difficult to not thing about it all the time, but try to make time to do something fun. Watch a funny movie or go for ice cream with your son. Always think positive, really, attitude is everything!

Hey DM,

Remember what you've told me, spend your time meditating. Allow your mind that break it needs. My date is coming up soon, I feel like you've been a companion on this journey =)

Don't feel bad, I snapped at my mother the other day, but our family and friends understand that they don't understand which is why they are so accepting of our little outbursts.

I have been very nervous as well and just a couple of things friends and doctors have said that I want to share:

1) The doctor said, "stop trying to cross every bridge before you have even gotten there"...I'm a person who likes to know all potential outcomes and I attempt to brace myself for each and every single one...this has been extremely exhausting and we definitely need our rest!

2) My friend said to me yesterday, "After next week you will be liberated!"...I thought this was so interesting because I hadn't looked at it this way. Regardless of what happens, we are "taking the bull by the horns"! This is our choice, own it girl! Just from previous interactions, I know you can do it! You've got this one!

I'll be keeping you in my thoughts. You are doing everything right, trust yourself, trust in a higher power. You will be great and make it through this stronger than you were before. Drop me a line whenever!

Dm, my wife went through the Gamma Knife treatment and it was a simple deal. The only thing that was a little painful was the putting on the halo with the pins in your skull. after the injections it was tolerable. Try not to worry, it will turn out fine. wife had no side effects. Pain goes away in about 2-3 days. Slight headache.

Thanks everyone for your reply’s, meditation is great to give the mind a break you are so right Monica and I will carry on with it, I just have a laps now and again. It is just getting really close so the nerves are getting closer to the surface and harder to deal with. It is great to have people to talk though every thing that know what I am going on about.
Gay it is a shame we ran out of time to meet before the operation but that’s ok I am sure we will after it and thanks for the thoughts
Trish you are right bald is in now lol thanks for the reply it does make me feel better when I read other peoples advise.
Andy I am having a crani, but thanks for the thoughts anyway and I hope your wife is recovering fast.
Stay strong and take care everyone

Hey Sis,

You need to remember one thing, in ten days you will be AVM free!! Yippee!!!

Yes you are going to get your head shaved but you don't have to. Maybe you should just go a number 4 all over so the hair which surrounds your beautiful face will be longer and visible when you wear your beanie so it wont look like you are bald :)

No we don't know how you are feeling but I know I would be scared sh**less also so it's nothing to be ashamed of :) you are only human after all.

I agree you have too much time on your hands to ponder over the inevitable which makes things worse because the more you think about it the scarier it becomes and I guess you just get a feeling of dread. I have something to occupy your time though, see if you can find a dog grooming business for sale and how much it is worth and how many current clients there are.

Think about your future washing and grooming dogs and doing it without all the effects of the AVM. You will be a new lady...just like being reborn...that's got to be exciting:)

Maybe you could start writing about your experience - right from the word go. I'm sure it would really well.

Don't bother writing a will, you can do that in a couple of months, (when you are better), (if you really have to), cause you wont need it.

Anyway I am at work so I had better go before the boss comes and sees I am not working.

STAY POSITIVE. Look life in the face and stay strong. Luv you xxxx


Hi DM. Catharine nailed it…only positive thoughts from now on!!! Woo hoo…I cannot wait until I see the word obliterated on your profile!!!

Thanks Catherine yep you are correct I need to stay positive and I am trying, got my new glasses today so that was really good, everything looks so clear and sharp lol. Dog washing hmmmmm that could be fun, do you think we might need to do a course or something first I can wash and dry and cut nails but the grooming bit might be a bit of a worry lol. love you too xx

And Barbara you are correct to it will be so much fun being able to write that on my wall, can't wait to be AVM free.

Stay strong and take care