Im back from sydney with mixed feelings. thank you to all of you for your best wishes. I went to see Proff Micheal Morgan in Sydney and told me that mine is not actually an AVM but a Cavenoma. he said that ifi want to have children than i should have the operation which he said is pretty low risk… so i dont know what to do… i went in there not knowing what i wanted to hear… i left there crying… and have doen so everynight since… im just so scared and not sure what i should do…
anyone who has done the operation or thinking about it… please contact me…
I can’t speak to your medical situation, but I would encourage you to find someone to speak with about your emotional state, be it a counselor, pastor, or psychologist. You’ve probably just found out that what you have could affect your life significantly, which is a real jolt to any of us.
Realistically, you’ve probably had this for a long time, maybe since birth, so you’ve lived with it for some time.
filipa,
i don’t know what to say…this is a tough decison and in the end can only be made by you…i suppose you need to think about weather or not you want to have children…i know for me that’s what made my decision…to hear i would never have children with this thing in my head…my life was already over…it made me more determind to find someone that was capaBLE OF REMOVING it…i took the chance…if anyone can do it prof morgan can…i wish you all the best in your decision making it won’t be easy i know
I’d be surprised if you WEREN’T scared and emotional after having this type of information shared with you. The history you have given on your page sounds very familiar. I have been through a similar situation and by the looks of things, several people on this site have been there as well. I remember when I was first diagnosed with a 3.0cm AVM deep in my left temporal lobe. I had been having horrible headaches, vomiting, vision problems much like you have described. As soon as I heard that I had a bleed in my brain, I was quite scared. The first neurosurgeon that I met with kept an eye on me for about a year, had me on some medications and had me doing monthy MRIs. He ultimately said something along the line of “You haven’t had any trouble in a year, which is a good sign and means that the risk of anything additional happening has decreased by about 50%. Every year that goes beyond that with no trouble decreases the odds by another 50%.”
Well, he seemed to be right… Until I had a seizure two years later and ended up under observation in the hospital for a week. This new group of neurosurgeons were not as optimistic. I ultimately ended up having surgery. I’m not going to lie… it wasn’t easy and it was a very long, drawn-out process. But in the grand scheme of things, I beleive that if I had not had the surgery, I wouldn’t be here now.
Since the time between my initial diagnosis and the surgery was almost 5 years, I had done my homework, had spent many nights frustrated as hell and crying myself to sleep, but when the date for the surgery was scheduled, I was ready. I just wanted it all to be over and if surgery was the only way, then so be it.
My advise… Talk to people. Friends, family, professionals, us here on the site… It doesn’t matter who they are. The important part is that you are able to voice your concerns, get it thought-out just by saying what you’re worried about. Don’t expect responses from people, especially not the responses that you may be hoping to hear from them. Take them with a grain of salt because as Alicia said, it is ultimately your call.
Alicia, what you are feeling is perfectly normal. If you are not comfortable with Prof. Morgan’s diagnosis, get another opinion. Is the surgery for a cavenoma the same as for an AVM?
my prayers are with you as you try and make the dissission on what to do. trust in the Lord and he will give you the answer you need to go forward… good luck …
Get another opinion about your situation. I had gotten three back way back when and then. One from my Physician and two from seperate neurologist. You are not the only one in this strange boat.
So just survive and fight!!!
Now stop your crying and put a serious look on your face and get another opinion…
My heart goes out to you right now. I can completely understand what you are feeling right now. The frustration of having 3 different opinions from 3 different doctors. You don’t know which way to turn or what the right thing to do is. You scared whitless and feel completely helpless and out of control. My doctors told me as well that I could not get pregnant. I am 31 and my husband and I desperately want a baby. I am trying to get scheduled for proton therapy in a month or so and I know that even having this treatment might not get rid of my AVM. I know that i will have to wait 2-4 years to see if the treatment has even worked. Please know that you are not alone in this. For me, this group is so great because I know that everyone understands exactly the emotions that I am going through. Please know that you are in my thoughts and prayers.
It’s perfectly nromal to feel the way you are feeling. Don’t hold it in. My advice to you is to learn as much as possible about the operation. The more you know, the less scary it will be…
I had the proton machine and the gamma knife like twice. And there is still an AVM in my head. Ah well!!! It is the same size. Just hope and pray that it doesn’t bleed again.
Hi Filipa; Found a website that gives a good explaination of Cavernovas (Cavernous Malformation) www.brain-aneuysm.com, follow the link to Cavernovas.
From what I can see they have to be removed by surgery because it is a different structure than an AVM. Reading what others hear have said Professor Morgan is the top man in Australia so you could not do any better. Try not to worry too much
Hope this helps
Kev