It's been like a year and a half since my avm was removed. I saw my neuro today and asked him if he was supposed to refer me to a neurosurgeon or what. It's been over a year and I've had no scans or follow ups to tell me or prove to me that my avm is gone. My neurosurgeon from the actual crani had told me he got it 100%, sounded pretty positive about it so I just kind of was like OK, peace, thanks for the whole life saving thing and went on my [un]merry way.
Naturally this site, which I have a love-hate relationship with, has created this sort of paranoia I can NOT for the life of me get rid of. I'm so afraid of this thing growing back and of course my Dr said no, kind of blowing it off like I was overreacting. I like my Dr. he's super cool. I can tell him anything pretty much. From sex to migraines, the dude understands me. He said the risk of something going wrong during an angio is far greater than the chances of my avm growing back. Should I accept this blow off or go to my regular doctor behind his back for a referral to a neurosurgeon? I despise my reg. Dr....he's kind of an arrogant douche so I tend to avoid him but paranoia is not cool. I was paranoid I had a brain tumor..turned out it was an avm lol. So, I'm on an indigent care program because I'm poor (LOL anyone?) so I really don't have too many options in the way of second opinions.... is it normal to go without an angio? I know avm's don't just grow overnight but..Idk...I guess I'm just looking for a what would you do type answer.
Plus, he was surprised I still use a cane and can't move my fingers, just lift my arm a bit..that did kind of irritate me. What am I supposed to do about that? I can't afford stupid therapy...ugh I effing hate this..why do I even bother....
Kristi, I think it would be wise to get a followup MRI, though not necessarily an angio. An MRI may not reveal everything, but it is noninvasive; if it looks clear, then you probably wouldn't need anything more invasive unless new symptoms show up. Perhaps you could discuss getting an MRI with your neuro? It's hard to move forward when you are constantly worrying that there may still be AVM.
I heard the same thing from my surgeon and that follows protocal. If he is confident he got the AVM you should not be too concerened about recurrence. Congrats!
This site is great, Eileen I love this site and would recommend it if I ever met anyone who had/has an avm and needed support. I love that I can come and ask questions or vent on the blog but it's the reading of other peoples success that irritates me or when I read someone's doctor offering so much more service and options because they have insurance or live in a more resourceful area. My city is fine, offers indigent care which is a lot more than some places offer. I'm happy for everyone else's success but it's depressing for me and I get anxiety when I read how other people suffered worse than me on that first day (the initial bleed) but have overcome their paralysis within days or weeks and here I am over a year later with people and doctors wondering why my fingers are stiff, why I'm still so tired and angry, why do I still use a cane and a brace. I'm so different from everyone else on this site that I kind of.....don't want to be a member anymore. But I need the support and sometimes I feel like maybe if someone reads that I'm worse off than them they'll feel better which is kind of twisted but I've never been a positive person so that's really all I have to offer other members.
I did have a CT scan at about a year after the surgery because of a migraine that would not go away after 3 days or whatever. They said it was clean but I do know that CT scans are not as accurate as MRI's. I really don't have symptoms of anything except this weird fizzy noise that I always forget to mention because it's not constant and is very sporadic. And my words get mixed up for no reason and I'm forgetful but when I think about it.....I'm pretty sure I've always been like that.
I guess I'll just take James' congrats and move on:) lol
Hi Kristi-I can relate. I’m not certain, but I think that I read that only an angio. can show total removal and/or verify if it is growing back or something else. Does anyone else know if this is true or not?
I’m unsure about your recovery journey, but I’m assuming that is was “a little” rough…and I realize that you have a difficult decision to make on your direction you choose.
I wish you the best whatever you decide.
So, I see a Romney ad....pretty sure I'm off this site now. It offends me.....
Thanks for the compliment of my kiddos:) I was 13 weeks pregnant with the baby when I had my bleed. He's such a trooper!
Secondly, I thought this site was apolitical. I honestly don't want to come to the place where I get EMOTIONAL support for my MEDICAL issues and see Romney's ad about needing a REAL RECOVERY. I'd rather this site be apolitical than anything and I'll keep my real opinions to myself. I live in Texas, usually the ads are Texas related...mostly online school ads and the walk-aid and stuff like that.
Kristi...You have to trust your doctor and if they say you are AVM free...go on with your life. I know exactly how you feel, but I believed my doctor when he said it's gone and it won't grow back. I just can't live my life worrying every day! Keep the Faith!
It's OK. It actually made a difference, the responses I got lol. Just to know that it's not this site but Romney himself being a D--- well....I'll move on. I think I'll follow the suggestion from an e-mail. Each time I click the ad, it costs his campaign money so.... just gonna leave it with that lol