Dr “O” has done it!

Finally! I have someone who has listened, not just by acknowledging what I’m saying but by actually validating EVERYTHING I’ve been saying. He didn’t tell me I’m complex or try to palm me off on someone else. I felt genuinely listened to and experience so much empathy, which is so rare in a Neurosurgeon.

I cannot express the emotions tied to hearing the words “The aqueduct is narrow and half blocked. I can see there is a partial blockage”. The impact of these words does not escape me i.e the meaning of the action that needs to follow. My consult went better than I had anticipated but the bottom line (and more importantly), this doctor can see the problem and pointed it out to me. Those before him…could not!

It’s been a long road and a struggle to be heard.

Anyone who follows my blog and journey will know what I’m talking about. But, for anyone who has just stumbled across its path, I’ll give you some context. Since 2012, 2 years after my ETV was done and shunt removed, I’ve been intermittently symptomatic. Always fearful that my ETV is failing. No other doctor gave me the time of day…until now. Some have made more of an impact on me (negatively), than others. One even argued a point that would leave him humbly apologetic, after my consult today would surely prove him wrong. All of them wanted to trial me on one or other drug, pass me from Neurosurgeon to Neurologist because “nothing obvious” indicated a need for surgery. I was labelled stressed, depressed and/or crazily losing my marbles…The first two I’ve seen in black and white on discharge and clinical notes but the latter, they didn’t have to say, I’ve just been treated accordingly.

I am one more MRI away from having brain surgery number 6! If I sound happy about it, I guess that’s because I am. Not at the thought of another brain operation but, like I’ve said before, we have NO OTHER CHOICE. It’s a case of brain surgery OR going untreated and succumbing to the effects of it – either option does not sit well with me however, the latter, is a hard NO, NOT GONNA HAPPEN!

Contrary to what I thought, ETV closures do not happen instantaneously as I had feared in the beginning. (That doesn’t mean others haven’t experienced it that way).

Driving home from my consult, I couldn’t help but cry all the way home. A mixture of emotions washed over me, with so many things going through my head. Past consults, being dismissed, unnecessary arguments with my husband, feeling helpless and seeing that continuous downward spiral. Picture any movie you have ever seen where someone goes from being down and out to suddenly winning the lottery, where all their worries disappear, in an instant. Now, times that by 10 and you’ll get the idea.

One man. That’s all it took. Looking at my MRI images and walking me through step-by-step what he was seeing, disagreed with a marking on one of the images by the radiology team and what clearly showed him the problem.

Experience vs Text book knowledge

Most likely, it could have been the patient before me that he dealt with where he, “felt guilty for letting this woman go 2 years before agreeing to operate and then found a problem with her ETV, contrary to what her MRI had shown”. She had been to psychologists, neurologists and done everything under the sun, looking for help (sounds so familiar, doesn’t it?). Apparently she had come to him after he had done her ETV a few years before, complaining about headaches, nausea and “just not feeling well“. Her MRI showed the ETV was closed hence he operated but when he redone it, the hole closed up almost immediately, leading to his out of the box way of thinking now.

Experience is a better teacher than anything else in life…

All I can say is, Thank you Lord!

In a nutshell, my 36-minute consult with him went as follows:

• I made notes on what I wanted to convey and asked questions I needed answers to.
• Pleaded my case and hoped he’d see the human across the table from him – husband lost his job and thanks to COVID, hasn’t been able to find anything else. I’m supporting our family and need to work, hence, I need to get this sorted if there’s a problem. Feeling sick is affecting my quality of life and impacts on work delivery.
• I have insurance to cover any surgeries as I know ETVs and Shunts aren’t a cure.
• I expressed my concern about the dizziness, which has just increased over the last month and a half. Accompanied by extreme nausea but no vomiting.
• The visual disturbances, headaches and insomnia are wearing me down.
• We discussed the likelihood of CSF overproduction, which he explained away as: “It’s not so much an overproduction as possibly a rate of absorption issue due to a partial blockage/narrowing of the aqueduct. If there’s not enough fluid to keep the brain buoyant, you will develop headaches and feel unwell, but when the CSF pushes through, you start to feel better. Until it happens again.”

I explained the due diligence I’ve done in accordance with other specialists:

• Trialling medication, consulting with a chiropractor and even getting other investigations done in case something else is causing my symptoms.
• I explained that the headaches continued regardless of being on Topirimate (migraine preventative), which made me loopy, unable to concentrate, focus on my work or function normally. I’ve trialled Amitriptylene, which made me severely suicidal.
• I also explained how both the Neuro ophthalmologist and Gastroenterologist reverted back to my Hydrocephalus as a possible cause. Considering the brain-gut connection, his response to that: “Yes, of course there is”.

Next steps:

1. MRI/MRV/MRA + Flow study to check the speed i.e. flow rate of CSF through the ETV.
2. High definition CT C-Spine

When I asked him what the outcome would be from the MRI, and if he would act regardless, he said it would be one of two things:

1. The MRI confirms what he is seeing in which case, “we go in and redo the ETV, which is such a simple procedure to do and because it worked well” for me OR
2. It shows everything as normal, “then we need to decide what to do next“.
3. If the C-Spine CT shows anything significant, spinal surgery will be a discussion point. However, it will have to go on the back burner until after my Thyroid and Brain surgery.

But, from what he sees, there is definitely something wrong…Hallelujah!!!!!