Friday, August 3, 2012


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 brain.
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, I will.

1 comment:

  1. shira says:
    August 1, 2012 at 11:39 am
    my dearest,
    i don’t know anything about you except from what you shared here but at the same time i never felt so close to a person i don’t know. your reality in many ways is my reality as well ever since i was diagnosed with a deep cavernome in my basal ganglia few months ago. i admire your way of copying partly because i can’t do the same. i had enough with the epileptic seizures, dizziness, weakness and numbness of my left side not to mentation the horrible side effects of the anti-convulsants medication which make me feel like piece of shit. i am not being able to leave my home for the last past month and barely get out of bed. crying most of the time, not letting anyone to get closer so they wouldn’t have to suffer with me. wanting everything to end and hoping that if i will continue not to eat the end will be here soon. i can’t handle this condition anymore, and when i am in the hospital’ like right now, i want to get back home to my bed and not to wake up.
    i don’t like this reality, i am not willing to say goodbye to the person i was. all the things i fought for, all the things that meant something in my life are gone. i can no longer be a political activist. a clown activist. an activist. i can no longer work or study. i can barely stand on my feet and that’s happens only on rare good days. i can no longer be happy.
    i feel that i am on my way to give up (if i am not already there).

    mamaklute says:
    August 1, 2012 at 12:09 pm
    Dear Shira, thank you so much for your message. Please do stay in touch! I am so so sorry you are having such a hard time. I went thru balance therapy a year ago before my cavernoma was diagnosed to cope with the dizziness. It’s basically physical therapy for dizzy people. Please do look into it, I use the tricks I learned there everyday! Also, see your doctor about your seizure medicine…my dr and I decided to quit mine because the side effects were worse than the seizures themselves! What type of seizures are you having? My email is email me anytime! Don’t go thru this alone. What you could accomplish before didn’t define who you are. You are still that person and we both need to learn how we can still be true to ourselves despite our limitations. It is truly difficult, but it is possible. Beleive me, I get depress too…