I have a deep, bleeding cavernoma.(Some doctors call it a tumor, but it is mostly a “condition”, because it is not cancer) I have known for about a month now. I found out it cannot be operated on because it is to deep into the brainstem. I really was caught by surprised because i totally expected it could be fixed. I feel like the cavernoma is the bullet in a russian roulette game… which in fact, is pretty much what it is. It can change my life forever in an instant with a stroke, slowly with ongoing symptoms , kill you with the high risk of brain aneurysm, or simply leave you alone for a bit. There is no way to know when, and how.
Other than having been constantly dizzy, light headed and nauseous for more than a year, So far… i have bad days , and good ones. The bad days are really bad, and the good days feel awesome when they come. I feel alone a lot of times, which is not to be taken personally by anyone, but it really is a “invisible” illness that sometimes affects me so much, yet people around me dont “see” it… because its my brain going crazy… affecting me. Also, it is so inconsistent, one day is different from the next, even one minute is different from the next… so again, its not “real” for anybody else but me… I really dont think anybody can understand until their own brain plays Russian roulette with them. I have never felt so alone in my life.
One day at a time really becomes real.
I dont “feel” like im going to “drop dead” any minute, I feel like im going to see my kids grow, that my symptoms are going to stop getting worse, and that it will never bleed again…
but reality have been proving me wrong pretty quickly lately. Maybe its temporary, how bad it’s been affecting me, but from what i read, once you’ve experience confusion, personality changes (in my case, i believe it was needed, i’ve always been too nice, and now, i just dont want to put up with $hit- hahahaha ) and weakness and numbness… everything i read, people stories, didnt have a happy ending. Not necessarily death, but really poor living condition, and i dont mean money. Physically, i am ready to deal with it. Mentally, not so much.
On a medical note, here is a bit of infomration about how this is
affecting me. I am experiencing a lot of these symptoms already, but
here is an idea of what this condition does to the brain.
What can be affected when a deep cavernoma bleeds? The brainstem,
thalamus, and deep cerebellar nuclei are very important regions of the
The brainstem is that part of the brain that conducts all the nervous
impulses from the body to the brain (and vice-versa). It occupies a very
small volume and is no more than an inch in cross section or length in
much of its length. A small bleed into this tissue from cavernoma can
lead to almost any part of the body being affected in strength,
co-ordination (including walking, swallowing, vision and breathing) and
sensation (all modalities including pain, temperature, touch, knowledge
of the position in space, hearing and taste). The brainstem also
contains a very important centre for keeping a person awake and damage
to this centre can lead to coma.
The thalamus is a little higher than the brainstem and connects to both
the cerebrum and the brainstem. This area of the brain acts as a relay
and process centre for nervous impulses coming from the body (and other
regions below the cerebrum) that are entering the cerebrum. It is
important for sensation (including pain, temperature, touch, knowledge
of the position in space and vision).
I dont like drama. This is simply… reality. I dont like it right
now…. but that’s what it is. Being scared, mad and sad forever wont
help… so I just have to accept it. Maybe not this minute, but the next,