I have questions!

ok, i had my bleed in march, my crani in may (both last year, 2011) After the surgery, i saw the surgeon only 2 times and both those times i was in a near unconscious state and coincidentally had NO visitors. so, any questions i or any family member may have had went unasked and unanswered. so today i finally got to c a neurologist. all he had for my paperwork was initial documents from the er, nothing from the neurosurgeon because i had been transferred to a different city so the whole network was completely separate (and no one told me they would need permission for the records before the appt (ignorance on my part, just stupid on theirs lol). luckily (idk if that's the word i should say lol) i had a seizure in September so i had to have a ct scan within my original hospitals network. so my neurologist had the most updated scan at least. so, the dr was sitting next to me, practically on the exam table WITH me, going over the reports, asking me questions as he read along and i was reading over his head (it was the first time i had seen anything official and on paper about what happened to me). so let me say, i was excited about that part. so i asked for a copy of everything so that i can go home and google google google for answers in my own language that i can understand. soo, im sitting here, looking for answers and i read on my paper "THERE IS NO ENCEPHALOMALACIA AT THAT SITE AN AVM MORE PERIPHERALLY AT THAT SITE IS PRESENT. WHILE RESIDUAL AVM IS NOT EXCLUDABLE [...]." now, i know im not smart but im not stupid either. but to me, mayb because i was panicking at the read, it sounds like they r saying there is still an AVM there. what is it they r saying is present???? because it says IS present, not was. i know i obviously will need to ask the dr next time i c him but i just want to know now cuz i know i cannot make it thru this again. this is too hard as it is, i cant make it a second time. so, if anyone can mayb pass an opinion my way itd b awesome and appreciated. thanx:)

Hi Kristi!
I am not a doctor, and that is what you need for your best answers. Always wright down your questions when they pop into your head. Take them with you to your appointment and don't let the doctor leave until they are all answered. The nursing staff might be able to help you, also, but they will mostly defer to the doctor. That having been said, I agree with you, it sounds like there is still some structure left of the AVM. DON'T panic! It will be all right. As most of us will tell you, sometimes it is just one day, or even one hour, at a time. Some days you feel like you can eat the bear, and some days it feels like the bear is eating you! Those are the days you get online and vent. If you are angry, say so. Want to cry, then do it! Let the feelings out. We are here for you because we have all been through it. It's called AVM survivors for a reason. Somewhere in the group are those who can help you understand, who will stay with you as long as necessary, and will not be judgmental or dismissive. You are not alone. I had multiple embolizations over three years. They reduced, but did not eliminate the Dural AV fistula (DAVF). Nine years later I had another embo followed by a craniotomy. That was back in 1992. I have had excellent health ever since. It was tough, and I made it, but not without help and support. Ben knew exactly what he was doing when he started this site. Thanks Ben!!!

Fire Buddy

You should be able to call the neuro's office and speak to his secretary or nurse. Tell them that you need an explanation of your results and ask that the doctor call you back. You may wait a while. Definitely you can schedule another apppontment to go over the results.

Hi Kristi,

I agree with Trish about calling the doctor's office and asking for a callback. You have a right to know what your own reports are saying!

I might not be following, but it sounds like you're seeing a neurologist rather than the operating neurosurgeon. The neurosurgeon is the one who has the details and who knows about AVMs, so that's the doctor who's going to give you the best info. Are you having an annual followup with the neurosurgeon?

In the meantime, there are good reasons not to panic! My husband's scans ALWAYS say that there are signs of stroke--no mention of how the stroke they're referring to was over 25 years ago! When they say they're seeing an AVM, they could be talking about the clips that you probably have, or referring to the fact that they can't see through the clips on a scan to be 100% sure there isn't a scrap of AVM beneath them. The people who interpret the scans aren't neurologists, so they describe what they think they see, and the doctor decides what it means--my husband's neurosurgeon doesn't even look at the reports until after he's done interpreting the actual scans for himself. The reports can be pretty terrifying when you read them by yourself, so it's important to get an AVM expert--ideally, a neurosurgeon--to go over the reports and scans and interpret them for you.

Let us know what you find out!

i think i am just going to have to ask before my next appointment (in april lol). i cannot see the neurosurgeon that performed my crani because i don't have insurance anymore--i only have county health....so i can only see a dr within this county, which is ok. i was just wondering if this was something normal on a results report. the surgeon said he got it all, the avm just wasn't located where he had expected, it was deeper than he thought, but "for all intents and purposes, she is cured" is what he had said to my husband when he went to tell him the surgery was over. it just freaked me out LOL. like i said i had never seen anything on paper from him before. the clips thing makes sense, i guess they would never say 100% positive everything was removed anyway. thanks for the replies:)

Hi Kristi,

I would place a call into the Neurosurgeon who wrote the report to ask for further clarification with that -- I'm hoping that you would not require insurance for them to provide you with this! While my situation is different from yours, I did have a bleed back Feb, 2011 which is when I learned about my AVM. I had an emobolization done the night of my rupture which ultimately saved my life and surgery was scheduled for Feb 23rd, however, my surgery was cancelled as what they discovered as part of the pre-op process was that the embolization trated ~85% of my AVM. While I am not a doctor either, after reading thru my reports I had thousands of questions for my docs and wasn't shy about asking away. What this sounds like to me is that they can't rule out any small, residual remants of your AVM and is something that I would certainly seek further clarification on.
While my emobilization treated 85% of my AVM, I am still being treated for a very small, residual remnant of this creature which I will soon be rid of, thinking optimitically.

Hope this helps in some way and keep asking any and ALL questions that you have!!!

Pleasekeep us posted as I am now interested in understanding this medical jargon :))