Surgery again…but, thankfully, not brain surgery..!

Surgery again…but, thankfully, not brain surgery..!

It’s been a while since I’ve been able to focus enough and write. Recovery from brain surgery #6 is still ongoing but, every day is getting better…The Vitamin B and Ginkgo Biloba that I’ve been taking, is certainly showing the benefits in terms of my cognitive function. Even though I’m not 100% yet, I can feel a difference.

It’s been a busy time

Work has kept me busy and will continue to do so for at least the next two months. However, since this latest development, I need to cram all that work into 2 weeks! Also, Hydrocephalus awareness month is about to end. Hopefully, I’ve managed to spread some awareness. It never ends. We live with this condition daily and there’s just not enough knowledge out there. I keep at it though, despite my challenges. At the very least, I owe it to myself to keep advocating! I’ve also managed to complete one or two things on my to-do list despite it being at a snails pace…

Latest development

I had my 3-month post-op MRI at the beginning of this month and a consult with my surgeon to discuss the results, on Tuesday.

Thankfully, my ETV is “widely patent” and there are no issues on that front. Aside from the odd headache after surgery, everything else has settled down. No more headaches. No more waking up early hours of the morning or struggling to sleep. No more vision issues and, no more nausea and dizziness. Well, kind of… I have dizziness and nausea but, it’s not being caused by my hydrocephalus.

(I’ll admit, this put me in a state of panic a week ago, as my first thought was my ETV. I prayed hard as the hydro wave crashed over me! Intense meltdown moment!!!)

My MRI was of my head as well as my Cervical C-spine. This is the report:

The good and the not so good! See the last line…
Herein lies the problem. Aside from the “unusual curve of my spine”, the black bit between the vertebrae, is what needs replacing.

It’s been coming on for some time

Normally, I would link back to a previous post but that would require me to search and, I just don’t have the energy for that right now. (Sorry). From memory (yes, it still works!) thanks to the Ginkgo biloba and Vitamin B I’ve been taking, there’s a noticeable improvement. I still have a fair amount of struggle cognitively but it’s better.

How long should you leave a patient in pain? NEVER!

Before my ICP monitoring in Auckland, New Zealand, August 2018, I went to Wellington hospital emergency as I was symptomatic. The attending Neuro registrar dismissed my complaints about numbness and weakness on one side (head to toe) and ignored me, focusing on my other symptoms. Nothing more was done.

I even recall having this same pain a few years earlier but never actually sought help for it.

Fast forward to the following year, a few months after moving to Australia. I had my first Cervical C-spine MRI noting degeneration of my spine. Since then, I had consulted with 2 neurosurgeons and even requested the last one to “fix” the issue. He refused, saying; “Medicine doesn’t work that way”, because there was no visible sign of it impacting my nerve. Yet the pain I felt was bad enough for me to ask him to consider it. Now, a year later, there’s contact with the nerve and despite the pain being the same, it’s worse.

Light at the end of the tunnel

In hindsight, I’ve had to live this way for years but, finally, I have a surgeon who listens to me and actually asks me what I want to do. He takes it onboard, adds his experience, expertise and knowledge and we make a decision – together.

Because I anticipated the conversation we would have, I done a few things to see if I could help myself, without surgery, first. Hot and cold therapy on my spine. My son gives me a 2-minute massage on that spot, daily when he comes home from work (I know, sweet, right!). I saw a chiropractor last week to see if an adjustment would help. In fact, I’ve had these a few times last year too. No change.

The one alternative option Dr Tollesson provided, was a cortisone injection, which would give me about 6 months relief but, quite frankly, it didn’t sound like a solution. He then offered a surgical procedure called Anterior cervical discectomy fusion or “ACDF C5/6”. Use this to search on YouTube, if you’d like to see videos of the procedure.

Titanium cage (black bits) prototype Dr Tollesson showed me. Those are some serious looking screws!

Weighing up all of the above, I made my decision to go ahead with surgery. Pending confirmation, this should happen in 2 weeks, 13 October. The surgery itself should take between 60 to 90 minutes, all going well.

Going up towards my ear on the right but about the same size as this scar from my hemi-thyroidectomy in August.

I found this link useful, explaining a bit more about all of this.

He recommended surgery based on the contact with the nerve root, which is causing pain down both arms and legs. He also explained that the head is quite a weight in, and of, itself. Therefore, when you have the issue I do (Common amongst many), it’s added pressure on the neck and that area.

For now, I just want the dizziness and pain to end…that gives me a de ja vu feeling! Oh the irony…

PS. He never placed the titanium burr hole cover because I had ICP monitoring done as well, which prevented him from doing so. I checked with him because I was confused as to why I still felt a dip in my skull.

A blessing in disguise

I sat with his finance lady afterwards discussing the details of my surgery, dates, hospital, payment, etc. turns out, she has had this procedure done as well. It was good to be able to talk with someone who had it done and get her perspective. I could see the scar and ask her all the questions I had, which put me at ease with my own decision. Asked if she had the injections done and if they helped, she said yes but no, they didn’t. Even though no two people are the same, I felt reassured that I was making the best decision for myself.

Endocrine surgeon follow-up

The next day I had my post-op hemi-thyroidectomy consult. I was curious to hear what he had to say in terms of me having this surgery and if there would be any factors to consider. He was quite surprised and said usually people have these surgeries the other way around and some times, even during the same operation. I told him I’m just over it all and felt at my wits end.

Aside from possibly having scar tissue which would have started developing by now in the way, he reckons the passage should be clear with half the thyroid structure out of the way. After our consult he said I appear to be very “robust and seem to bounce back from these things, given the last few months“. My response: “I told my manager today about my surgery and said I felt like driving myself to the tip! (landfill)” My manager’s response, said in jest; “Do you realise you’re falling apart woman!

Oh! If only he knew, that applies both literally and figuratively…3 surgeries over a space of 6 months is by no means fun.

Some people with Hydrocephalus are used to this norm of repeat surgeries, within a short space of time. It’s a vicious cycle that can seem like you’re riding a wave on an infinite loop!

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