I joined this group for support about a year ago, but it was after I had, or just before, the crani. For about a year, I've been reading discussions and blogs on here and the responses, replies and answers. I compare answers and questions to my own experiences and sometimes I post my own questions or answers. I've done research, I've talked to Dr.'s, I know my rights as a patient......but my question is this:
How come every one knows the exact location and size of their AVM? Everyone has scans and pictures. I've had 2 embos...I still have no idea if they used glue or coils and no one else knows either. I've asked the Dr. that "said" he did both embos but he actually told me, "I'm not sure what THEY used." Who is THEY? I still don't know! My neurologist had my medical records sent from San Antonio where the crani and embos were performed but he said they sent no pictures, no digital recordings of ANYTHING. He also admitted (without shame) that there was too many boxes of files. He thought it was a prank at first, but when they "just kept unloading more boxes" he realized it would take too much time to go through it all. So, I'm actually jealous that everyone is so informed about their own cases and I have no information. I spend most of my time speculating and guessing and hoping what I was "told" and what everyone else remembers is closer to correct than far away from it. I know I have a right to my medical records, but if I have trouble doing mental math, or looking from a bank statement to a credit card statement, how could I possibly read medical jargon? I get so confused so easily....I wish I could have been more focused on what was happening rather than what was going to happen. Maybe I wouldn't feel so dumb and clueless now LOL.
Hi Kirsti. I know where my AVM was located but not the size. Not even certain if they did that way back when…hehehe. I kept all my medical records but guess what …the box is buried underneath a bunch of other boxes in a storage unit. Not to mention it is in the back of the unit. I do not get confused but have no desire to dig thru everything in that unit to find it. I am secure in the knowledge that it is obliterated. If your AVM is gone…rejoice and do not worry!
I'm sorry that you had doctors that weren't very forthcoming with you. My doctors came in and repeatedly told me all these things, so much so that I totally remembered most of what they told me and not much else during that time. Maybe you need to submit a separate request from the radiology department in San Antonio to get the copies of your MRIs and/or CT scans. Some hospitals are really clueless and can't see the forest for the trees, they send the paper documentation without realizing that maybe it would be mighty helpful for a new doctor to see what's going on rather than read somebody's notes of what happened.
When I was transferred from the local hospital to a big university teaching hospital to have my embolization, the local hospital did not transfer any of the images, they only transferred the notes. It annoyed the doctors and needlessly delayed my treatment. I think it was because the local hospital was not happy that they were being upstaged by a hospital with better equipment and better reputation. I felt like I was a pawn in whatever little chess game these two competing hospitals were playing. Maybe that is what is happening in your case. Maybe you should call San Antonio and specifically ask the questions you want to know to your doctors there,
I can't wait for universal healthcare and digitized medical records so that patients don't have to worry about stupid stuff like this and can just get the treatment they need.
Kristi...I know exactly how you are feeling.
I knew I had an AVM and was shown the pictures of it's location, but only seeing the scan from my angiogram made me see my AVM. I then had Proton Beam Radiation and had a massive brain bleed six months later. Just recently, I asked my doctor's office to tell me the size and location of my AVM before the bleed and the NP wrote back that it was a "Small left posterior temporal AVM". I still don't know the size of my AVM, just that it was small.
The records you get after your bleed tells you the size and location of the bleed, not the size and location when they discovered that you had an AVM.
So if you had an angiogram before you had a bleed, they can look up the records from the angiogram and give you that informtion.
What bothers me is that they can't tell you what treatment they did for you...You certainly deserve to know that information. I would call the Hospital Adm and tell them you want all your information.
NO, you are NOT the only AVM're who is clueless.
You are neither dumb nor clueless, just under-informed. I too know where my AVM was but not it's size. I know this because my neursurgeon was very forthcoming with my husband. I'm in the process of trying to get my records because there is still so much I don't know about my ordeal. Keep asking questions, Don't give up.
IThanks guys! I'm glad I'm not the only one so clueless!I really should contact the radiology dept in San Antonio, I never even thought of that, I just called the neurology dept when I was trying to find out how to get my records sent and they transferred my phone call from there, I never even considered the fact that it would be multiple depts. I would be dealing with (now I feel doubly dumb LOL jk). My neurosurgeon did come in and give me information all the time but I had just had a bleed, was worried about my baby, was trying to figure out how come my brain , arm and leg are no longer connected and to top it off, as I'm sure most patients of this (our) magnitude know, you spend more time comforting your family than they do comforting you, still trying to protect them (or am I the only one?). So, I really had a lot of thoughts going on and not a lot of anything was sticking but the dillaudid LOL.
Louisa, you know exactly how I feel! I was so excited when I finally got a report of the last 2 scans done here (but only in writing) 1 report was from the scan directly after my bleed, the second was 3 months after the crani when I had a seizure. i thought I finally had new info but it turned out to be the size and location of the bleed, not the actual AVM, exactly like you said. It was disappointing:( We shouldn't have to jump through so many hoops to find out exactly what is wrong with us or what doctors do to us on a surgery table. I woke up from my crani with a huge burn on my back and nurses kept asking me how I got it, no one knew! and the other day I had a flashback that made me wonder if I woke up during surgery.
Sometimes this site freaks me out and makes me paranoid.....i think that's some of my problem LOL
Hi kristi. For whatever it is worth someone else in my family had a serious illness recently. We had to obtain the medical records for them. We got them but to be honest with you...I would rather have a root canal done than go through that experience again. LOL.
HI Kristi -
I think the relationship you can build with your medical team (i.e. neurosurgeon/neurologist, etc.) will be most key so that the information is accessible - because many times it is the last thing they think of giving us! After my angiogram diagnosing my AVM, I asked my neurosurgeon if he could show me on the scan what he was seeing on the images that made him think I had an AVM and he showed me. Another suggestion I would make if its physically and financially possible is to setup alternative opinions. After having my AVM diagnosed at Northwestern Memorial Hospital and being recommended Gamma Knife Surgery, my insurance luckily covered a second opinion at the University of Pittsburgh and Mass General in Boston. This way I felt more confident that I really knew what was going on - and I always requested all of the medical notes, radiology cds and imaging studies for each visit so I had them with me when I came and went - I felt empowered (not that I knew what any of it meant or how to read it but it just made me feel better!!) I also typed up a list of when all of my procedures were and where and a list of all of my medications because I have a tendency to get those hazy when I am filling forms out in the waiting room, so this helps me feel more confident and informed too (!).
Not sure if any of this helps - but those are just two suggestions I have that might make you feel less cluess - which I agree, this whole damn process can definitely be - you are not alone! And you are certainly not stupid! It's a lot to deal with and we are just regular lay people, not medical people. Best wishes and please let me know if there's anything else you need :)
Carrie
I have clueless tendancies - unsure if my bursting AVM has anything to do with it, though =)
Also, regarding comparing, I've learned not to do this although it's very tempting to fall into. Everyone's experience is different...which makes you uber-unique.
Hi
I always thought I had a blood clot because that is what I was told, I was a little kid, and it was 50 years ago, but when the internet came about, I started researching. I wrote to our old family doctor and asked him what was it I had. He wrote back and said AVM right occipital/parietal lobes, size was about the size of a quarter. It bled in my brain. Not too long after that letter, he passed away. The neurosurgeon had already died, and his records were unavailable anymore. The hospital had changed names and become a huge teaching hospital. They had some microfilm, maybe three pages, which said astrocytoma, then said unknown!!!! Now those records are not available anymore. I tried to find out what the vascular clips in my brain are made of, but no one could help, so I just stay away from MRIs. I had all this in 1959, and am glad I have a little knowledge of what went on.
beans
Hi Beansy,
If it was 1959, I'm guessing the clips were metal metal. I'm not really sure when Titanium started being used for medical stuff (or airplanes), but my guess would be late 60s/70's.
If you want a cheap easy way to test (and I'm not sure this would work, but it might):
Buy an inexpensive study finder--not the electric kind, but the old old kind that was a clear plastic case with a small magnet on a pivot inside it. The logic (as a studfinder) was as you passed it across NAILS/SCREWS in the wall, the magnet would swing pointing to it. [They are pretty lousy as stud finders, btw].
If you know wherebouts in your head the clips are, you could have someone run the stud finder across it to see if the magnet moves............
Of course I have no clue if this will work.......... nor do I know if it would hurt you.......
You could try it on a bobby pin at various distances to see how it reacts.....
But it might be a fun experiment.
Ron, KS
I am laughing out loud. Truly, that is too funny, and I thank you for your idea and the laugh. But I won't do it. Even if I did try it (if I even knew what this implement you called a "study finder" is. Oh, did you mean stud finder? I know what that is and why it works); even if I tried it, and if the magnet does not move, I would not be able to see any relation to the huge magnets in an MRI. Therefore in a logical state of mind, I could not do that. Either outcome (the magnet moves or not) would be too iffy for me to stick my head in an MRI. There are four clips, they are in the back right side, they look on an x-ray sort of like those metal clips that come with Ace bandages, which clips are known to fail. I know titanium was not around in 1959. There were no scans. Only X-rays, EEG and angiogram I think??? and another barbaric test that was the first machine to be able to see in the blood vessels in the brain. It was called a pheumoencephalogram. I was just 9, strapped in a chair; I have ivs that were way different than modern ivs. one in my arm, one in my back, and one in my neck. Then they take out a little spinal fluid, and replace the space with an air bubble. They move the chair mechanically upside down and around while they sat and watched on some screen an image of a bubble moving through my blood vessels. At an image that must have been so grainy and hard to see, AND, the results?!?!?! Inconclusive as to whether I had an astrcytoma?
No, I have made it this far without an MRI, and see no reason to really want to get one, even when one doctor seemed mad or frustrated once because I could not get in one. I only know they could be gold, or some sort of silver, or one other metal being used then.
Thanks for the smile.
So where is that bubble now. Maybe it was a fart a long time ago.
beans
Beansy, that chair and air bubble thing sounds downright scary!! I'm so glad we have come so far in medical technology today. I'm glad they are not drilling into our heads to release the demons. Oh wait maybe that's exactly what they are doing today!!!
Dang typo--- you're right--stud finder.... And I proof read it twice.........
Glad to make your day.
Ron, KS
I'm sorry the doctors were being so unhelpful. :(
For me, they told me the size and location when they found it using the MRA first, then checked it up with an angiogram.
Though I don't know how "true" the size was, because when they opened me up, they found 2 more than they expected.
But I think they gave me a briefing on the exact sizes right after my surgery too, but I don't remember much details from that period (for obvious reasons).
So to me, while we sat at the neurologist's office confused, the doctor told bombarded us with information.
It was difficult because the neurosurgical office was not the best at communicating, and I changed neurologists, and also because they lost all of my brain scans after they put them into the medical system, but information wise, they told me upfront when they first found out what it was.