My bleed was 2 years ago, I was pretty disabled the first couple days then slowly became more alert. Apparently I was never alert enough to ever answer or show anything to because 3 months later I was discharged from that hospital for a final time with no answers. I thought it was OK because I was due back for a follow-up like 2 months later so I made a list of questions. Long story short, follow-up never happened. I waited for a chance to have at least one neuro appointment with any type of neuro Dr. If I could just get some answers other than what an avm is and 'it's the brain, every case is different' I would have been happy. My neuro doc I ended up with had less answers. I went through the trouble of transferring my med records to his office (really it was no trouble but it adds dramatics lol). I call to find out about copies after they received "this box and they just kept coming and coming. You can have copies after we are done." No copies, "sorry, we can't seem to locate your records. It appears we lost all your records."
So, after I was done crying days later, I set up for my records to be transferred again. I finally got my copies.
I was looking through them earlier and it's all mixed up, March is mixed in between April and May is just all out of order. But I kept the papers the way I got them anyway and just kept looking over them and it's all blood and urine samples and results???? There's only one page ONE PAGE that details my 13 hour craniotomy. A second page to detail only one of the two embos I had but there's an entire stack detailing my pregnancy, another stack detailing my hemiparesis which I did find out my arm and leg are different. My leg is classified as LLE with distal weakness, upper toe movement(?) but my left arm is Dx'd as ULE plegia. It explains a lot, definitely would have helped my outpatient therapy if I had known that. Is it normal for med records have such detailed info on the lesser important information?
I made notes on words I don't understand, there's a lot of info I don't get; I will be busy for days LOL. Luckily, I still have my text books from college and I was going for my associates in Coding and billing then was planning to go for health insurance reimbursement specialist. But now I'm super bad with numbers and my memory is only good if I'm within range of my laptop. Anyway, I have some medical texts because I was working case stidies only days before my stroke.
So, I went over the records from the days following directly after my crani. I discovered that I had some sort of tube in my stomach that they took x-rays of and wrote in the reports. I have no pictures but other than anestheisia, I had not known of tubes in my stomach (oralgastro tubing they called it or something). Then I saw in the reports that I had two hemmorhages post surgery. Why did no one tell me this? They said I have a paddle in my head and noted something on the left parietal lobe (my avm and surgery was in the right hemishpere, not the left). They noted that they had gone beyond the bone margins and the wording made me think they had to go deeper left than they had cut in preparation for. They said that, gosh I forgot, but my crappy memory is telling me it was something like swelling had obstructed the view of something in a post-op CT scan. I don't recall ever being told any of this, my husband either. And they said it was "persistent hemorrhaging" and "consistent[...] edema." I know, it's too little details and too much confusion but I'm looking it all up again tomorrow anyway. BUT DID NO ONE TELL US THIS STUFF BECAUSE IT'S COMMON AND/OR UNIMPORTANT? Or is it because no one was asking the right questions? I'm so confused. I feel like I've lived with questions for so long that I don't know how to handle any answers or something. I still don't know what the size of my avm was but at least I now know it was located in pretty much the last part of my frontal lobe and the most forward part of my parietal lobe. I now know my bleed was actually in the basal ganglia, not just puddled up near that area. But that's about it. I still don't know if my first embo was with glue or coils. Any answers or suggestions to sites would be awesome! I'm having so much trouble, even 2 years later, mapping out what happened inside my own head, it is such a creepy feeling.
Bootsie says to keep it simple and it will get you better :)God Bless
That’s crazy that your hospital was so disorganized that they don’t even have records. I went in just to get my ambulance report & it was like 70 pages…Did they give you all of the records??
It's like "House" and "Sherlock Holmes" combined, kristi -- what a puzzle! It must feel bizarre that for some of the most significant hours of your life, you weren't consciously present to witness what was going on.
I've gotten reports too that left out a lot of information. One them was - It left out 21 hours of a 24 hour EEG. The report I got said I only had two recorded seizures. When in fact I had 8. I think they're afraid to let us know exactly what they did or.. didn't do. I've also had drs. fudge them to try to make themselves look better. My att'y (at the time) was able to get the "real reports". Not the garbage they sent me. That only happened to me from one hospital that I went to. The others one gave me thorough reports.
This is another reason I have, that I don't trust drs. :)
Ben
Although now that I think about it, neither was I -- I missed the birth of both of my children...
Ben, aside from the obvious size, location, more accurate precise description of the avm and which arteries, vessels (whatever) were the main feeders and drainers I also wanted to know about some questionable marks I woke up with. Like this burn that covered my spine and spread out over my back. I think it was a heating pad or blanket that got too hot or something. I had this huge gash on the front of my left leg. It was pretty big. I had a scab on one of my feet and one on my forehead (I think from the head suspension thingy) and I had a weird and huge blister on my right wrist. But there were no notes on any of that stuff in the chart. So I often wonder if anything was "fudged" but why?
Dancermom, it is a puzzle! Not only because I'm piecing together what facts I can find but because apparently when you request "all records" that only applies to one department. I'm guessing on this because there are very few radiology reports. Why else would they be missing? It is insanely bizarre also because I had what my neuro surgeon referred to as "wishful hallucinations" shortly after the surgery and I was having conversations with doctors that weren't even there and would repeat them to my family! So there are some "memories" that I wonder about lol. And that also wasn't mentioned in any reports. Just strange, I thought.
mdiam, I have no idea! lol. I have a feeling I am missing a few stacks unless that one dr.'s version of "boxes" is different than mine whereas my version of boxes means multiple boxes and his means a few thick stacks of paper jammed into two large yellow envelopes LOL.
yeah, my paramedics left out a TON of information too!! Covering for themselves…
yeah that’s crazy. I feel like they could be culpable for that in court if they don’t have records…