brainstem bleeds and dysautonomia (long)
 

hi everyone!

i'm new to the board here. this is only my second post. my first was in the introductory forum. i've been going through some hard times lately and am trying to get some answers.

i had a cavernous hemangioma on my brainstem that bled four times - when i was 8, 11, and 17. i had three surgeries and the third one finally did the trick when my neurosurgeon used the gamma knife. i have resulting damage to the 6, 7, and 8 cranial nerves and to the cerebellum and i have a whole assortment of problems: visual disturbances, facial paralysis, balance problems, tinnitus, headaches, and a gait disturbance to name a few. since the last surgery, i guess you could say i've been RELATIVELY healthy. not many major day-to-day problems except the ones i've listed.

so anyway, fast forward to now: i'm currently having problems with very bad tremor, seizures (which i never really used to have), cardiac arrthythmia, BP highs and lows, cognitive trouble that is more serious than before, pallor, and lightheadedness, dizziness, and vertigo that are much worse than usual. my heart was going 200 beats a minute on the holter monitor that i wore. i had to quit my job as a graduate assistant last semester and get incompletes in two of my classes b/c i was so sick. (i'm a grad student - currently back in school but only part time and am not working.)

my cardiac electrophysiologist diagnosed me with dysautonomia, also known as autonomic dysfunction. i've been researching dysautonomia and i realized that i think i've had it my whole life but that it didn't start interfering with my life activities until my late teens. i'm 26 now & was diagnosed with tachycardia even before i was 8.

i know this is long and possibly confusing....but i've been searching everywhere trying to get answers. i'm scheduled to see an autonomic specialist soon so hopefully that will help me alot. neither my neurologist, cardiologist, or neurosurgeon are or much help here. doctors are just confused my my conditions. i'm just wondering if anyone out there has experienced any problems with dysautonomia (undiagnosed or diagnosed.) do you know if there is a direct connection with cavernous hemangiomas and if so, what is the connection? or i'm thinking maybe this is caused by the placement on the brainstem?

thanks again, guys. it's nice to meet everyone and i really appreciate you reading this!!

-leslie

Fellow angiomi'er
 

Hi Leslie,
Wow, you've got a lot going on. I decided to answer you because I too have a cavernous hemangioma. Apparantly not a lot of us on this site, as most of us utilize the "Aliance" web site. My hemangioma is located in the Thalamus and can't be removed (so far). But you seem to know far more than I do about our unfortunate condition. Just to state the obvious, I understand that each persons symptoms are dependent upon the location of the Leison/s. I have searched the various brain websites to see what that might mean for me as I'm sure you have also. I didn't start having obvious symptoms until I was in my 40's when I had my first bleed, so you've been dealing with this much longer than me. Interesting how we can think back now and see symptoms that we were displaying our whole lives that we thought were just a part of life isn't it? Anyway, I wish I had answers for you and I hope this next appointment will give you the answers you seek. It's good to know your out there though-someone to relate to. Let me know what you find out.
-Idas