First Angiogram, Not such good news

I had my first angiogram done on Wednesday, 12 August. What an experience! Luckily I was in excellent hands! What I originally thought was an about average AVM (Right frontal lobe) was found to be bigger! About 4.5cm? The team of neurosurgeons that came to inform me and discuss possible treatment options was very direct and to the point. In South Africa they don’t get to see many of my size that often and therefor they will be looking at a combined treatment. But not before looking closer at the ‘scans’ and getting extra opinions from other neurosurgeons and radiologists. What seem to be the plan so far is having a partial glue done and thereafter surgery! I am a 34 year old mother with 2 beautifull boys! The “team” will get back to me when they are satified with the proper prosedure to follow! I have been blessed to have not had a rupture yet, but know the concequences both ways can be dangerous! My family does not really understand and my loving husband don’t know how to cope or handle this situation. I am scared! I want to cry and scream and pity myself! But I dont, because of them! I look normal, I act normal and sometimes I even feel normal! Yet I know I’m not! I’ve been having these terrible headaches again and today it turned to migraine! Not so nice! I think it may be tension and stress for not letting out on how I feel inside! If any Right Frontal lobe big AVM survivors have advice? Please share your experiences with me? God Bless you all and keep you safe!

Hi Angel, Sorry to hear that the scan didn't go well :( , But keep positive there are loads of members here with combinations of treatments and very different sizes of AVM's. Try not to worry about it after all you cant do anything to change things, So keep smiling and thinking happy thoughts. Its very good news that the Neurology team are taking extra care and doing more scans. I went through a similar type of situation (except) I had a bleed which caused large clot and needed emergency surgery completely out of the blue !, They found a AVM that caused this and think that it may have gotten smaller as a result of the bleed and was around 3cm when I was ready for my second surgery, Thankfully I have fully recovered and came through both surgeries absolutely fine :) , I must say I was worried as a father of 3 boys I can see how our situations may have been similar but I can now say honestly just take it easy and try not to worry about it, Be sure in your own mind that you'll be fine and you will !, Take care

Martin.

Hi there Angel. I did not have a frontal lobe AVM; I did not have a large AVM; I did have a bleed; and also, like Martin, had emergency surgery. I was a kid, and although very scared of what I knew, i didn’t know much. I think it has to be easier for a kid in that they are not aware of a lot, at least in 1959 we were not. The other thing you may already know is that small AVMs bleed more than large ones, but I don’t know percentages. Mine was not quite a centimeter, but sure did cause a lot of problems. I lost vision, but can see with part of both eyes. Probably in 1959, too much brain was taken out because they were thinking cancer. I am proud to say I have two sons who live nowhere near me, was a paralegal 2 for a lot of years at a state Dept. of Justice, and I just keep on keepin on.

beans

Hi Angel, I had my AVM on the front right side also and I understand how it feels but please be positive and strong and talk about it if you feel you need to as it will help...sending prayers your way and please keep us posted here...God bless!

Had my first angiogram on August 10th, and exactly the same thing! 4.5 cm, right frontal lobe AVM. High-pressure (8 sinks, 1 drain), and the plan is the same as yours: partial glue then surgery. I have no experience to share, since I'm in the same boat as you, but it's good to see I'm not the only one on that boat :) My wife also doesn't know how to handle this (I think she's freaking out more than I am), but that's all goodness. One step at a time! (I'm 33, and I have one baby boy, 2 years old).

Hi BobLemoche,

Thank you for your reply! It is good to know that we are not alone out there and that there have been other AVM survivors that has already been through what we need to go through!
My biggest decision is whether to do the procedure or just to carry on as normal?

Except for chronic headaches, I really have a lot to be thankful for!

Today is a bad one for me, I just want to cry and it seem I cant control the tears rolling from my eyes! Must be Monday Blues... lol

Good luck to you and with your decisions as well! I know it's a tough one!

Thank you for the assurance Martin, I appreciate!

Hi Beansy,

Yip that was a long time ago! Luckily technology has come very far since then! Its good to have such a positive attitude! You keep it up!

Thank you!

Thank you very much Adrian,

Prayers is much needed right now! I am trying my best so thank you for your kind and positive words!

Angel, Like me, after my angiogram, I had to meet with a team of neurosurgeons and radiologists to discuss my options.

My AVM was found by accident which was good because I was told I was close to having a hemorrhage and there were options of treatment available.

For me the best thing was having faith in my doctors. Also, staying strong and positive during the process.

Hi angel! Mine avm was only about 4mm in my left temporal lobe, so smaller but I had a major rupture 10 days before my 25th birthday. They weren’t even sure I could make it through but I did. About 5 months after that I had a craniotomy and it was removed completely. I had a 6 month check up angiogram this past July and my neurosurgeon told me I had nothing else to worry about. God held my hand through the entire whirlwind I had to go through and He will do the same for you. In just this past year I had a brain bleed, open brain surgery, and a wedding. Seriously blessed by God beyond belief! Stay strong and God bless!