After reading through some of the posts here, I feel like a big baby writing anything.
I have been having horrible headaches, with bouts of dizziness and confusion. I seriously thought I as going crazy. I saw a neurologist that specialized in MS (best hospital could do on short notice), who evaluated me, sent to get an MRI wwo contrast, and said I suffered from migranes. He referred me to a headache center after all treatments failed.
I had my appointment yesterday with a migraine “fellow” (one week left), who diagnosed me with cluster headaches, but mentioned my MRI showed a small AVM. When I inquired about it, he said he was suprised the tech was able to pick it out cause he wouldn’t have saw it and there was no need to worry.
Everything I have read leads me to think perhaps he downplayed the situation a bit. But I don’t want to seem like a over bearing patient that doesn’t want to listen to an glorified intern.
Should I insist on seeing a cerebral specialist or are small ones not a big deal?
You are not crazy!! What you are describing is what I started feeling at around age 18 with the headaches, dizziness and confusion. They did a cat scan but it did not show anything and just told me that I had migraines. The doctors and my family all made me feel like it was in my head and I was making it up. Little did they know!! If they would have used the dye on the test, my AVM would have shown up.
10 years later however and tons of pain medicine and many, many migraines and terrible debilitating pain 4 anuerisms in my large AVM (larger than an egg but smaller than a lime) ruptured and almost killed me. I had stereo-tactic-radio surgery to shrink the AVM. It shrank 80% and I suffer mild brain damage from the ordeal.
A year ago at the 10 year mark, I started having the migraines in the very severe debilitating form again and tests showed my AVM is growing again.
Do not let anyone or yourself make you feel crazy. Listen to your body!! If you think you need a second opinion then go for one. It cannot hurt anything.
If the AVM is small enough, they may want to watch it for a while to see what happens with it.
BUT if you are having alot of problems, it may well be worth that second opinion.
One of the best pieces of advice for an AVM sufferer seems to be to try and stay as stress free as possible.
We are all here for you and are willing to listen and answer questions any time.
Take care of yourself and let us know how you re doing.
hi misty,yes,see a neuro doc tor,let him review the mri and go from there,ok…happy the avm is very small,but to have your mind rest you need to see a doctor,I had all the same problems as you cluster headaches dizzy ,depression,for most of my life,my avm is also small 3cm…well a little smaller now,I had gamma radiation for it two years ago,and now after just about two years,its going away,you truely need to see a doctor who specilizes in avm’s your not being an over bearing patient,when i found out about mine,it was the same a doctor on call,not even a doctor at that,he said its ok,no big deal,i seen a real doctor and took care of the situation,you should for your own frame of mind get it checked k,let me know how things go,many hugs,caroline
Misty, get it checked out by someone who has dealt with AVM’s before. Unfortunately, I don’t think there is such a thing as an AVM that you “don’t have to worry about” and have a "small? one does not mean anything. Get a good second opinion and maybe even a third before you make your decision. It is so important.
Thanks for sharing your story. Don’t be nervous Misty, just be clear headed about it. Be thankful you have gotten a heads up to something that could possibly be problematic or not. Now looking for a second opinion is standard practice along the medical community, it’s your health you shouldn’t worry about hurting anyone’s feelings by seeking a more experienced specialist’s input. As has been said, go out and find someone who has experience dealing with cerebral AVM’s, consult with them over your current scans and see how they feel about how you should proceed. Not to scare you but I have had terrible headaches as long as I can remember, when I finally convinced a doctor to scan me he did not spot my AVM and years later I had a bleed, so don’t make my mistake, get a second opinion or two. I wish you the best.
Misty, welcome to the website! I think that you should take Susan’s advice and follow up. An AVM of any size should be monitered. And any feelings that you have shouldn’t be taken lightly so don’t let anyone make you feel like your imagining things or over reacting. I was just diagnosed in April of this year and looking back I have had symtoms all my life an had seen doctors for them since I was in my twenties to no avail. It is a good thing that it is small but you should follow up with a neurologist definitely.