It was almost one year ago (2/20/15) when I experienced the explosive pressure headache that never fully went away
and resulted in me seeking answers, answers that would prove to be extremely
difficult to find. Today I celebrate my 3 month brainniversary! Three months ago today I had the pineal cyst removed. The pressure in my head and the explosive headaches are gone. The frequent nausea and vomiting are gone. The fatigue, cognitive/memory deficits, and the visual problems are still with me. I have no
regrets that surgery was the right thing to do for me, but now I am also
fully aware that I have forever been changed.
Healing from brain surgery requires
patience like I’ve never known before. Brain surgery is an acquired brain
injury, for those who didn’t realize this. I know I didn’t. I’m learning a lot
about this now. Having someone’s hands in your brain with tools and instruments
creates a brain injury. Having them drain all of your cerebral spinal fluid
from your brain and drying it out with chemicals so they can open it up and operate
on it is a brain injury. I had no idea. Honestly, I didn’t. I just
focused on getting the brain tumor removed so all the symptoms would go away. I
didn’t think about any lasting damage caused by the tumor. I honestly thought
if the tumor was removed then I would get back to my old self. Nothing could be
farther from the truth!
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| Brain under reconstruction! |
Oh, they warn you about the
risks of surgery, you know like you could die, be paralyzed, have a stroke,
etc. But they don’t really explain what you will be left with if the surgery
goes “well.” Why? Because they don’t know. In one of my previous posts I talked
about how brain surgery is still in its infancy. Honestly, everyone who has
brain surgery is a guinea pig because no two people come out the same. There
are too many variables. The reason they can’t warn you about what you will be
left with is because they don’t know.
I’m learning what I’m left
with by trial and error and everyday it becomes more clear to me. I have
deficits that affect the way I interact with the world and relate to others. If something is too hard for me, or too exhausting for me, I must choose
not to make the effort. I can’t afford to become any more fatigued than I am.
So I must conserve my energy and in doing so, I isolate myself and I say no to
a lot of things. I make myself a priority. I have to. I get one chance…one…to
heal my brain and I’m going to make this a priority in my life. Understandably
so.
Yes, the surgery is done and
the tumor is gone! I know, I know. I should instantly be back to normal! One would think
that’s true. I thought that would be true. I wanted that to be true. But I
somehow overlooked the reality that I would be different after the surgery. I
assumed that once the incision was healed, so was my brain and that I would be
exactly like I was before. I would be “normal” again, feel “normal” again,” act
“normal” again. I had no idea that
none of this would be true.
The reason I write this blog is to help other people understand. Not just people with pineal cysts, but also people who know people with pineal cysts and those who've had surgery to remove them. Some "friends" have gone by the wayside because they expected things from me that I wouldn't deliver. That's sad but I can't make choices that are wrong for me just to appease other people. Also, many people have said to me "I have those same memory and cognitive problems...its a normal part of aging." No, you don't and no, it isn't. What I am experiencing is not normal aging.
In the spirit of helping educate others about pineal cysts and the surgery to remove them, I would like to share as specifically as I can what
this experience is like for me personally (I don't speak for everyone; I speak for me):
1) Fatigue. I still have no energy
at all and will make choices based on whether or not I can recover from them if
I choose to spend my energy on them.
2) Memory and Brain Fog. Please don’t take it personally if you’ve told me something and I forgot. It
happens. I was having problems with my memory before surgery and it is no better now. I try and set reminders of things and write lots of things down so I won't forget. But I may not remember all the
details of a conversation we had. For that I am sorry, but I do ask for your
understanding. I’ve had a consultation with a neuropsychologist who has asked
me to wait six months after surgery before I get tested for cognitive functioning. Again, the
brain takes a long time to heal and I’m told to be patient.
3) Sensory Overload. Noise,
chaos, confusion, crowds, following instructions, and new situations all cause
me to have sensory overload. I get extremely uncomfortable and I can’t
cognitively handle situations that cause sensory overload. I can’t follow a
conversation when several people are talking, such as in a social setting. I
just zone out and look disinterested. I’m not disinterested, I’m lost. I get
lost because I can’t stay focused. Please understand why I avoid these
situations.
4) Sensitivity. I’ve become
extremely sensitive to pain, physical and emotional. I’ve always been one who
picks up the emotions of those around me and now it is even more pronounced. I
cry easily and sometimes it has nothing to do with me but that which I am
sensing in my environment.
5) Isolation. It is a
protective mechanism to isolate myself. It helps me avoid everything I’ve just
listed above. It’s not you, it’s me! Please, come visit me or invite me over!
Please, ask me to meet you for coffee or lunch or a short walk. It helps to
have someone reach out to me even if I’m not reaching out to you. My default is isolation. And if I say
no please reach out to me again at another time. Don't take it personally. I may be having a difficult week.
6) Vision. My vision has
still not improved. My surgeon said to be patient and allow six months for
healing (again, the brain takes a long time to heal). Driving at night is out
of the question. The lights blind me and I can’t read street signs. I also
can’t read most print material. Trying to read a book causes such significant eye
strain, not to mention that I can’t remember what I just read!
7) Future. I have no idea
what my future will hold as far as job, career, etc. I know I won’t be
returning to nutrition school, but I don’t know what I will be doing. This is very frustrating for me because I have always worked or pursued education or both. It is very disheartening for me to not have something I am pursuing, but I’m trying to be
patient with my healing process.
Meanwhile, I would like to
find a volunteer position that will help get me out of the house for a few
hours a week doing something to help someone else, but it can’t be chaotic or
stressful or require me to learn new skills (per doctors orders). I don’t have
the capacity to do much but I want to do something. For instance, I would love
to rock babies, or greet people, or sit and talk with one individual. Something
simple and calm. I find that many volunteer jobs require training and expertise
just like a full time job. That’s not for me right now. So I will keep looking.
I have also reached out to
the Brain Injury Alliance of Colorado and although they work primarily with
people who have a traumatic brain injury (as opposed to an acquired brain
injury, which is more in alignment with what I have), they want to meet with me
next week to see how they can help me. I’m grateful for the kindness of others!
As for today, I celebrate
life and my three month brainniversary!
