This Lupus Life

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

The Cranial Biopsy

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Warning: This post contains a description of a cranial surgery and a postoperative image. Please be advised that this content may not be suitable for young audiences or those with sensitivities to graphic images. 

A further apology must be made in case any other this is re-iteration. Just go with it, while I get it off my chest.

I was informed on Thursday 20th August that it was most likely I would be facing a cranial biopsy on the occipital lobe of my right cerebellum. I was residing in Royal Perth Hospital at the time and had suspected this was on the cards. I had insisted my parents did not need to feel neglectful if they did not race to Perth again so soon after leaving when I was informed earlier in the week of my hospitalisation. That was when I had only been requested to stay for further MRI’s and lumbar punctures. 

When the head neurologist on my neuroimmunology team came to my bedside and suggested the biopsy was likely I held it together and called the folks.

My biggest injury at this time was the knowledge that the only way I could access my phone reception (3G, 4G, HG or even remote access and stealing wi-fi) was if I made physical calls. This meant I needed to be clever about what I needed my downloadable content for; whom must be updated at uni, what documents/ websites/ online’s folders/ social media accounts and the emails I had to manage correspondence on. Then I would need to call one of my parents, who would hold the phone on loud speaker and listen to me mumble whilst I maniacally typed, downloaded, uploaded or otherwise corresponded in the online world. I gained extensions that I gladly didn’t need to apply, ensured all relevant personnel were in-the-know and everything would be brought forward or pushed back in a two week radius so I did not have to think.

I didn’t know at first when the biopsy would be, or how long I was in hospital for. I knew the request had been made for ‘the next two weeks’ but in all likelihood we were looking at outside of three. I knew I wasn’t as urgent as fluid-swelling-the-skull and hadn’t been on a waiting list such as an operable-tumour-in-the-brain patient. I just hoped quietly, selfishly, that it could all be over before my October practicum placement at university.

I prepared mum (it really was an effort) to accept that the biopsy would mean the fruition of a long-held promise for a wolf-tattoo on my scalp.

I still think she doesn’t think it will happen.

The lack of internet was excruciating in hospital as I could not prepare myself much in the free time I had leading up to the biopsy. When I left hospital I was always kept busy by doctors, visitors, an exhausted body, my family, study. You get the picture. When I was out of the hospital I was just on the go or too worn out to care. I only know there are three ways a neurological surgeon can perform a biopsy, but to my mind they did not use any of those techniques on me.

We arrived at Sir Charles Gairdner Hospital at 7:30am Friday 28th August. Dad’s birthday. They would use a food voucher to buy a breakfast once I had gone into theatre. I marvelled at them getting a cooked breakfast. They mumbled agreeance. We all knew they wouldn’t eat much and what they ate wouldn’t be very satisfying due to the circumstances. I was so tired. So tired. I fell asleep almost as soon as I had my theatre gown on. I slept in the admissions room from 8 until 10:30 with my folks at my side watching the morning news. Then the various people had me fill the necessary legal forms, agree to blood transfusions and confirm my allergies, the side of the head to operate and that I was ‘chlorhexidine clean’.

I just wanted to cry and go to sleep in my own bed. I wanted to beg them to not cut me. I wondered if these were the last things I would ever see.

They numbed one had for my canullah. They didn’t numb the artery on the other hand, they would wait until I was asleep. They did that with the catheter later. I lay on a bed with restraints over me. I felt it was too high. Too cold. Too narrow. I wished someone was holding my body warm. I inhaled from the gas mask and my eyes became that predictor cube in the centre of a shaken 8-ball childs toy. You know the ones that proclaim to tell the future but never seem to stay still long enough on one side for you to be confident about.

Oxygen. My first new favourite substance of the day.

I wasn’t out yet. Now came the injection and it burned. all up my right arm I was being cut with a blazing rod of lightning. Only for a second though.

I woke as happy as I ever am in recovery at 2:30pm. If you’ve met me you’ll know I’m rarely caught not smiling for long and I can be a goofball if I can get away with it. Li was standing by my bed. just smiling. Waiting. We shared stories, gossip and jokes for three hours. Eventually she began squirting 100mL vials of water into my mouth every half hour. I cried because I wanted more and she couldn’t. She asked if I was in pain and I admitted shamefully, always shamefully when you are chronically unwell, that yes I would like to die now please. Just anything to take the pain away. I won’t be upset. She made me open my mouth and under my tongue, featherlight dropped a bud.

Opioids. My second new favourite substance.

My gift from the universe for taking this like a champion.

The first call I had a chance to make was to the folks. I asked them to come to me. I asked Gallowe to come to me. Tell him not to work tonight, I need him. I knew he wouldn’t.

Li stayed until my bed was taken to the ICU Ward. The folks had been in the waiting room there for an hour. They spent 13 hours at hospital that day and barely more than five of them were by my side. Mum had news. She had seen Connor, one of my neuroimmunologists who had been rotated to a shift at Charlies. He had been keeping up to date with my journey and he was able to shed some light on the surgery, although much of it was only guess work as he hadn’t been in theatre.


My Biopsy:

The lesion is in the right cerebellum in the Occipital Lobe.

This is the part of the brain that translates visual signals into information. It can also affect colour blindness and other visual defects and some such stuff. I have a big lesion. The cyst (brighter little area) in the lesion (bright bigger area) is too deep into my brain to access. Much of the lesion is too deep to access.

There is only a 50% that the biopsy will have information that can help the doctors.

The tissue biopsy’s taken were numerous, as in there were more than one.

While my head was open, the samples were sent for quick preliminary examination and this was returned with a confirmation that the tissue was indeed inflamed.

This helps little diagnostically.

They incised a 10-13 centimetre line across the crown of my scalp. This was held back whilst a small hole was drilled into the bone of my skull. Through the skull a hollow needle was inserted into the right cerebellum, down to the inflamed tissue and then drew out small sections for testing.

Results for this are expected to take between 8 and 10 days.

Neurological trauma is a possibility. Speech, coordination, visual damage and epilepsy are possible but not extremely likely. It is only a matter of waiting to see if there is damage.

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

Cranial Biopsy August 28 2015

Cranial Biopsy August 28 2015

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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.

5 thoughts on “The Cranial Biopsy

  1. Oh my. You have been through a lot. 😦 so glad you have a lot of support and a good attitude. I like that you explain the MRI and how certain areas of the brain can be affected. Hoping you are well and that you are getting the magic meds for pain. 🙂

    Like

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