Do I Still Have An Active Bleed?

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Arriving at the Hospital

The day had finally arrived; it was time to venture to the hospital in Cardiff for my first lumbar puncture in nearly two years. I have had many lumbar punctures since I was 8 years old, so I have no fear of the pain that comes with them. For me, it is all about getting a positive result. My most recent lumbar puncture results in 2019 were positive, and my CSF was crystal clear as it should be. My main concern was that the bleed might have been intermittent, and the clear CSF was just a one-off. However, it gave me a glimmer of hope.

My mum and I travelled to Cardiff, and once we got to the neurology day unit, we were greeted by a few of the nurses who I know quite well. It was somewhat of a reunion and nice to see some friendly faces. One of the nurses gave my mum and I some visors so we could communicate easier as wearing masks makes lipreading impossible. After a catch-up with the nurses, my mum and I went into the room to wait for the doctor. As we waited for the doctor, another nurse I know came to see me; we talked about the time she looked after me in 2009 when I had meningitis and how she couldn’t believe I’m still back and forth.


Getting Down to Business

The doctor finally arrived and introduced herself. The first thing I asked her was, ‘Would you mind if I take a photo of my CSF sample?’ She looked a bit confused but was happy for me to do so once I explained it was for a blog. Again, as I said this to the doctor who was called Fay, I was thinking to myself, I hope the sample is clear, but even if it isn’t, it’ll be worth getting a photo. Once we had a bit of a chat, we went through my medical history (which is quite long), and I explained about the superficial siderosis and the symptoms it has given me. I told Fay that 2015 seems to be when the symptoms really came on and that things had progressed since this and led to me completely losing my hearing, developing balance problems, and acquiring double vision, amongst other things.

Fay explained the procedure to me, which I am very familiar with, and I signed the consent forms. I hopped up on the bed, lying on my left-hand side with my back against the edge of the bed and my knees tucked up to my head. I used my speech-to-text app to understand what was going on as Fay prodded my lower back to find the correct place to put the needle. My mum stood in front of me to relay the information to me if the app had a “miss-app”. Fay marked the area on my back with a pen so she would have a reference point to refer to when inserting the needle.

Local Anaesthetic

Doctor Fay told me she was ready to put the local anaesthetic around the area she would be inserting the lumbar puncture needle. I gazed up at my mum and asked how many shots of anaesthetic I would have. The number 2 popped up on my speech-to-text app, so I knew to be ready for two sharp stings in my lower back. I felt the first shot go in, which surprised me as it wasn’t as uncomfortable as I remembered it from the last time. After the second shot of anaesthetic, I couldn’t feel a thing in the area on my lower back. Fay told me to wait a few minutes for the anaesthetic to kick in fully.

The Lumbar Puncture

My mum tapped me and told me that Fay was about to insert the needle into my back in an attempt to draw some spinal fluid (CSF). It wasn’t painful to start with, but I could feel a pressure sensation on my lower back as the needle went in. As Fay pushed the needle in further, I started to get nerve pain running down my right leg. The pain was quite intense and uncontrollably caused my leg to kick out. I told Fay the pain was on the right side, so she knew to move the needle the other way. It’s quite a strange experience, especially when you’re facing a wall and someone is behind you putting a needle in your back. Fay made two more attempts to find the correct spot to withdraw CSF; each time, I got a lot of pain down the left side and then the right side. Fay then decided to call one of her senior colleagues so that he could have a go at trying to get some CSF.

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Lumbar puncture area

When Fay’s male colleague arrived, he told me to curl up even more, in which I did. I was so curled up now I was almost in a ball. I shuffled myself to the edge of the bed again, and the Doctor marked a different spot on my back, slightly higher than the one Fay had marked. Two more shot of anaesthetic in that area and the doctor put the lumbar puncture needle in. When I saw the words ‘it’s in’ on my speech to text app it was a bit of relief to know that was the hard bit over with.

Getting a CSF Sample

With the needle in place, the doctor firstly measured the opening pressure. In 2019 I remembered it being slightly too high at around 27cm h2o, but this time it was 19cm h2o. The pressure should be between 6 and 25cm h2o. I did not even think about the pressure in my head, so this was a nice surprise for me. After having my VP shunt removed and an ETV (endoscopic third ventriculostomy) carried out, it really appears to have clinically given me some stability with my intracranial pressure. My heart was now pumping as I waited to find out if my CSF would be xanthochromic or not. Xanthochromia is the breakdown of blood product that leaves the CSF with a yellow tint. I breathed deeply until my mum looked at me and said, ‘It looks clear’. Still curled up in a ball as the doctor was taking the samples, I felt a huge sigh of relief, knowing that this was a huge step for me physically as well as mentally. After the samples were taken, the doctor removed the needle and put a plaster on my back. I rolled over onto my back to remain flat because when CSF samples are taken if you sit up too soon, it can cause low-pressure headaches or sickness.

All Clear
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All Smiles

The first thing I wanted to do was to see the sample for myself. Doctor Fay sat me up a fraction and brought the CSF sample over to show me; I was hugely relieved that it was still clear. I turned to my mum and said that my surgeon really is a hero and that he has not only sorted the pressure in my head, but he has also more than likely stopped the bleed that caused the superficial siderosis. I asked Fay if I could get a photo for this blog, she kindly agreed. I know I’ll have to wait for the lab results to get the full picture, but clear CSF and normal pressure is only a positive thing.

Fay took some blood from my upper arm so the lab could analyse it against my CSF sample and then left the room with her colleague. I continued to lay flat for another half an hour or so, then my mum and I left the hospital after saying goodbye to all the staff.


About Rhys Holmes

Rhys Holmes is a former musician, data analyst, shop assistant and childhood footballer. In his spare time, he enjoys researching Superficial Siderosis, writing, and watching his favorite football team Liverpool FC. Follow Rhys on Twitter @RhysHolmes

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