There’s so much you need to remember and be aware of and yet, it’s quite simple. Contradictory, I know! There are a few things we need to be aware of but, there are so many times you doubt yourself. The questions never end and nor does the second-guessing…
I’ve learnt a few new things from my latest episode a few days ago
Vision loss again!
A few weeks ago, I had partial visual loss – yes, again! I remember freaking out silently as I sat talking to a colleague and seeing half of his face disappear. I blinked a few times trying to keep my composure and hoped he wouldn’t notice anything. I excused myself as soon as I could and decided to go for a walk instead – De Ja Vu back to Christmas 2020!
The incessant headache..!
Over the last 2 weeks I had a headache that lasted 6 days and nights. Continuous, though “mild” in comparison to the usual throbbing I’ve become used to. However, it lasted long enough to warrant concern, including a few nights of waking up in the middle of the night. I remembered Dr Tollesson told me to keep an eye out for a headache that doesn’t go away or respond to pain medication. As it is, I can’t take anything stronger than paracetamol.
The uncertainty of what to do…
I hesitated a bit and wondered if I was possibly overreacting, going through the motions of “what if it’s something else?”. Finally, I decided it was enough, so I contacted his room and spoke with his secretary, but that didn’t go anywhere. I felt a little silly for calling, wondering what exactly it was I wanted him to do. It’s a feeling of helplessness that overcomes you and threatens your sanity. The next day, I called again as the headache simply wouldn’t let up and I felt at my wits end saying; “I think I may need a shunt adjustment“. I explained that I was only doing what Dr Tollesson had instructed me to do, the headache wasn’t going away, my neck felt stiff, and I had constant nausea. She offered me an appointment for 2 days later and I relaxed a bit, cursing the relentless pain in my head. Slight dizziness followed, made worse by the chesty cough I developed a week ago, due to a cold. With the increase in Covid cases in Australia, that nasty worry lingers in the back of your mind too! My RAT test proved otherwise but, truth be told, it doesn’t really provide (me) much comfort.
I asked my son to take me to my appointment as I didn’t trust myself driving and just in case I had a shunt adjustment. Poor child. It was his 21st birthday and he spent it sitting, waiting in his car for me while I had my consult with Dr Tollesson.
Shunt Xray and blood tests
Dr Tollesson listened intently and promptly responded with a check of my shunt settings, which were a bit confusing. At first, he thought it was 150mm when we both know it was set to 110mm. This was done with me sitting upright in a chair. He asked me to lay on the bed and checked the setting again – this time it was 110mm. Nonetheless, just to be sure, he asked me to go downstairs and get a blood and urine test done, and an Xray of the shunt at the hospital next door. Just under an hour later, I was back in his room, where we went over the Xray images.
A picture tells a thousand words
The first image was taken last month (June) where you can see the loop, which I questioned him about at the start of our consult. I wanted to know if the loops would have any effect on the flow of CSF – he said it wouldn’t.
On the 2nd image, we discovered that the loops are no longer there – I found this interesting. More so, the end of the shunt has also moved and would explain even further the uncomfortable poking feeling I have in my bladder region. Naughty bugger!
As mentioned in my last post, all of this is unfortunately something I must live with. It’s not a perfect fix…
The bottom line is, he is happy with the shunt and its function. He pumped the shunt valve a couple of times to clear any possible debris in case anything was stuck at either end. And said we’d wait for the blood and urine test results. These are to determine if I possibly have an infection, which he suspects not but decided to check, just in case. As he said, anything is possible.
Infections are cause for concern
He explained that one could have a bladder, abdominal or any other viral infection which could follow up the shunt tract, something you don’t want to have happen as that could affect the brain. But, if I were to have an infection, the shunt tract would be red, inflamed and one could even develop pus in the shunt valve, which is partly why he pushed down on it, but didn’t feel anything. He also said I “looked well enough” and even though I momentarily thought “on the outside, yes”, I understood what he meant a few days later. I suppose in comparison to someone who has an infection, I was in a better state physically than what he’d expect to see.
Currently, I feel what I’ve described before, like I’m recovering from a bad hangover. The aftereffects of having a hydro headache for a few days. Nausea and slight dizziness continue, however, I’m pushing through each day and carrying on as “normal” – as you do!
We wait for the results of my blood and urine test tomorrow. If it’s negative, and the headache continues (thankfully at the time of writing it has gone), I go back to see him for a shunt adjustment (if I so wish). If it’s positive:
- We’ll need to do an MRI to see if there’s a blockage, and
- We could schedule an appointment with an Ophthalmologist to check for papilledema, or
- Do a lumbar puncture to check the pressure, and finally
- Do a revision, should there be an indication that the shunt is malfunctioning, or the pressure is high.
Knowing what to do, and expect, is key to asking for it when you seek help
I wanted to know what I should do going forward and what I should expect, as I (wrongly) “assume” going to the hospital would be a fruitless exercise. (Cynicism thanks to previous experiences) I expect they would only manage my pain and send me home and, since I can’t take any Opioids, that would be a wasted trip. Dr Tollesson explained that was not the case and advised that I could go to a hospital, preferably one with a neurosurgical team. He recommended a few in the city. Saying, “they should be able to check the settings of the shunt“, if not with the device for my model of shunt, then with an Xray. If for whatever reason, the setting has changed, I would need to get it set back and investigated to find out why it changed. The likelihood of this particular shunt changing settings is highly unlikely and only possible with a very strong magnetic force on the outside. Not even an MRI machine is strong enough to change the settings. He showed me how the device works on the outside and what he has to do to get the setting changed. He continued to explain; If it were to have changed, it could be an indication that there’s a problem with the shunt itself, which would warrant further investigation, especially if I have a headache, nausea and/or vomiting.
At this point I’m leaning towards it’s possibly something else and the cough, caused by the cold, was enough to cause a pressure spike in my head, leading to the headache. Meaning, none of the options above will apply. Lord knows it’s better than having another brain operation!