This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Cerebral Vasculitis: My brain lesion

9 Comments

Before I begin on my new path in 2016, the path to a long-term recovery that is, I want to ensure that all aspects of my past illness have been fully explained. This is so you can understand why I make certain choices, why am I being treated by doctors with certain treatments and what the impact of my recent bout of illness have actually had on me.


 

First I will explain the factual details of my brain lesion(s)

As it came to the end of 2015, I tired of constantly saying to people,

“My lesion/mass…well, we don’t know but it isn’t a tumour…I know, such a relief…they don’t know what it is but it keeps coming back and gives me grief…oh all sorts of things, but mostly these seizure things that are like strokes but not long-term worrying…they seem to block the blood flow but we don’t know why they keep coming back…yes it is terrible…no I don’t know anything more…”

So I gave in and did the bad thing. I said,

“I have a brain tumour.”

I know. It was morally and ethically wrong. It was a lie. I felt bad, but speech and the effort to be long winded were lacking in me. To be fair, for all we knew it may well have turned into a tumour, or have the same impact on me long-term as a tumour. It apparently was affecting me as some brain tumours can, just without other tumour side-effects. I only said it if I was directly asked to explain briefly what my situation was by someone that was not a close acquaintance of mine and was not involved in my treatment. Close acquaintances were told the tedious ‘long version’ and for everyone else? Don’t ask don’t tell, basically.

What they were:

Fluid build-ups due to chronic inflammation in the minor vessels of the brain. They were not clots, which are created when platelets congeal within the blood to prevent blood loss at the site of an injury. Nor are the build ups solid in a way that cannot be undone. I was not ‘leaking blood’ at these sites either. There were no unusual foreign entities within the lesions, which confirms a lack of tumorous cells. There were lymph cells (lymphocytes, to find out about these see the bottom of the page) in an unusually high number, which added to the inflammatory nature of the build-up. 

Where they were:

The small blood vessels in the occipital lobe of my right cerebrum. They say the side of a brain controls the opposite side of the body and, yes, the implications on the left side of my body support this. The cranial biopsy involved a drilling in the crown of my skull on the right side. If I get confused I can just touch the lump where the bone healed after it was replaced/grew over (?). There are four parts to the brain, and then many sub-regions. Each is needed for something different and from what I can tell there are as many truths as there are rumours about these functions. I can attest to the fact of what you experience is often inexplicable by even what science currently knows. According to science and medicine, the occipital lobe interprets the information our eyes receive for processing by the brain. Yes,if lights change quickly and often I may become confused. But that happens as well for temperature, movement and noise. I also speaks not at all for why I lost speech, am now noise and light sensitive and had bouts of being unable to use half my body. You can see with the size of my last lesion that it may have entered other ‘regions’ but it was not like that any of the other times so #questionmark…am I right?

How big they were:

The most recent and largest appeared to be perhaps an inch or two across and much longer. The rest have all been in smaller states from smaller than a pea to the average of a pea size.

How to read this #MRI: it is reversed, the big white patch in the bottom left is in the back right side (right posterior #cerebellum) of my #brain. In the big white patch is a smaller, brighter white spot. This spot is the scarring from my old #lesion. The lighter white patch is my new current lesion. The lightness in the convoluted #brainmatter (cerebellum) in that area of my brain indicates a general #inflammation. Otherwise its all good. That lesion feels to be the size of an elephant made of razors. It hurts. Don't forget to look through my older posts for the original lesion MRI! #cerebral #cerebralvasculitis #vasculitis #cerebritis #lupus #SystemicLupusErythematosus #sle #autoimmunedisease #chronicallyill #chronicillness #steroids

A post shared by Jessie Frost (@thislupuslife) on

How many/ how often they grew:

When they first grew there were close to twenty. Since clearing initially they’ve come back in various amounts always a little less than the time before but contrarily increasing in size. A big ‘episodes’ (stroke/seizure/fally-downy-thing) would occur every 4-6 months on average, which indicates they would be growing from about 2 months from the last episode (it took perhaps 2 months for a new medication to clear my head of the existing ones). The scary part for me was that within the largest one (of recent times) is a tiny area that has grown consistently in the same place. This has, it appears, left a scar. It is too deep in my brain to be tested for surety so we may never know.

 


 

Lymphocytes: A lymphocyte is a type of white blood cell that is part of the immune system. There are two main types of lymphocytes: B cells and T cells. The B cells produce antibodies that are used to attack invading bacteria,viruses, and toxins. The T cells destroy the body’s own cells that have themselves been taken over by viruses or become cancerous. – U.S. National Library of Medicine

Advertisements

Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

9 thoughts on “Cerebral Vasculitis: My brain lesion

  1. Thank you for sharing your situation. I hope you know that, by sharing the details of your condition you are helping others to understand. I really hope that it helps you as well.
    One question about the MRI: What is the white spikey thing on the right side of the picture?
    All the best to you.
    Jack

    Like

  2. Thanks for this post. CNS stuff is extremely debilitating; I’m so sorry you’re going through all of this.

    When I had CNS issues this past year, I also read about the brain (as much as I was able to given my condition). Sometimes it was scary, but oddly enough, I found it reassuring. It makes me feel better that other people do this, too.

    I really like the brain map graphic in this post. Where did you find it? I’ve been looking for one but haven’t seen this one.

    Like

    • The graphic was just from wading through Google images persistently. The URL link is in the pic ‘comment’ if you want to go to the original source? I how your CNS stuff was easier to get to and treat. Mine took three years as they were hestitant to go into my brain. Now I have a friend with too similar of a problem so I hope I can help her in this time. I don’t think its as bad for ‘us’ as it is for everyone around us, which is the worst part.
      I hope you are doing well/better my dear.
      Jessie🌹👍😘

      Liked by 1 person

      • Thanks. I looked through Google images, but wasn’t as persistent as you.

        I’m feeling MUCH better; thanks for asking! I hope you and your friend start feeling better soon also.

        Keep dancing 🙂

        Like

  3. I’m really sorry you’re going through all this… Do love the MRIs though and the detailed explanation; the brain is almost like a magical, mythical creature sometimes and seeing a picture can really help make what’s happening a bit more tangible… Hope the current med combo you’re on works to stop new lesions and the growth of that persistent one!
    Zoe

    Like

    • Thanks Zoe!
      I firmly believe we are the ones, as patients, that need to know the most. Mum is always so confused in the doctors office as they use their words. They legally have to tell us everything, but if you don’t know the lingo you can misunderstand so easily. The brain is wonderful and scary. Have you heard of neoplasticity? Its my favourite word! It will hopefully help me fill in my big empty spot with….maybe a superhuman power????
      Thank you for your words and big love to you
      Jessie 😘👍🌹

      Like

  4. Pingback: January, starting my recovery | This Lupus Life

  5. Pingback: The truth revealed | This Lupus Life

  6. Pingback: Plaquenil, Toxicity and My Eyes | This Lupus Life

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s