This is how I feel right now.
I had a follow-up consult today with the NS who ordered my recent MRI. And, unlike our last consult, we both remained calm and open to suggestions of a way forward. I was thankful for this…briefly.
The bottom-line of it all is:
He still doesn’t feel that my symptoms are classic signs to warrant concern. He still questions the reasons for my treatment in South Africa (This still makes me think that so-called “Third world country” medical treatment is questionable by a so-called “First world country” inhabitant – just my opinion). He also does not think that a lumbar puncture is a way to go because based on my last one, it might not heed any warning results. However, he did say that I have more input on what we do or don’t do next but he wanted to mention all the options available to me. He suggested referring me to a neurologist (queue de-Ja-Vu) in case he is missing something obvious. Though, after consulting with them, they might suggest a lumbar puncture is a way to go.
I asked him about the Paranasal sinus mucosal disease in the Findings section of my MRI result and what relevance that might have. He said it was certainly something to look into if I wanted and he could refer me to an ENT guy. He suggested someone I could go and see but that he certainly wasn’t alarmed at what he was seeing, it would need to be “torrid” (was the word I think he used) for him to be concerned. When I asked him to compare my previous MRI from 2013 to now, especially since I hadn’t heard these words before, he happily complied. Looking at the scans and putting them side by side, he said there certainly was an indication of it starting (In 2013 but it wasn’t mentioned in the report). Also, he said looking at them like that did, in fact, show them as being “torrid” due to an increase and buildup in the mentioned areas. Doh!
He explained a few other procedures we could look into but he would be very hesitant (as has been his stance from the word go) to explore any further avenues with me. He “certainly didn’t want me to go around in circles and come back to him especially since we’ve been down this road before“. Also, he proceeded to tell me all about how unreliable and problematic shunts are, to which I just nodded my head and said “I know” (having had one before myself). Then he said, “If you’re looking at staying alive for the next 40 years at least, then a shunt might just hinder that for you anyway because we haven’t advanced with shunt technology to not warrant concern of failure“. (Hmmm…so either I get a shunt that might end up shortening my life anyway or I wait until I go into a coma or my ETV closes – the options are endless…Also, I now have a number placed on the runway of my life, something I didn’t really give much thought before).
I asked him a set of un-related (trick) questions with regard to patients with Hydrocephalus who go into a coma “What happens in these instances? Is it a wait and see approach? Do you have means to wake these people up?“. He found it quite interesting and with the same giddy boyish nature I’d become accustomed to with him said: “We’ve had a patient who was in a coma for 3 months, slipped into it suddenly and just woke up one day“. Then “We also had a woman, in fact, the nursing staff still shudder when they hear her name, who went into a coma for 6 months. There were no signs or symptoms. She didn’t return to work for 2 years but if you look at her now, you’ll never say it’s the same person. She’s exercising and going about life as if it never happened…it’s quite remarkable really. Those are the ones that catch you off-guard, the ones who don’t fit into the normal spectrum of expected symptoms”
I wish I could see it with the same giddy enthusiasm he does…
There was a reason why I asked him these questions. The surgeon before him had told me that someone with slit ventricles, could go into a coma. The consultations I’ve had since then, have just left me thinking, “These doctors won’t do anything until I actually go into a coma“. It’s the one reason why I keep going back and wanting a proactive approach instead of a reactive one…but, I’m getting far from the desired outcome.
Based on his answers, I’m thinking “Bloody hell…can you imagine the consequences of me going into a coma for 3 to 6 months! What about my children, my husband, work..? How will we survive financially?” The list is endless…He said that I was obviously set on getting some answers since I was paying for all this privately. I told him that it was not ideal because quite frankly I don’t have the money to pay for any more consultations, much less the one today. If at all possible, I would prefer to be seen by someone through the public system. He said that it can be done but may not be ideal because the waiting time is between 4 to 6 months and even then, they might decide that my case is not serious enough and decline my referral. I told him that I’ve been on a waiting list before and I’ve also had a referral declined, so from where I’m standing, I have nothing to lose. He asked whether I had a preference in terms of a Neurologist I wanted to see and I told him “as long as it’s not Doctor I, who told me that they don’t know what’s wrong with me or what more they can do, I’d be fine with anyone“. He then said, “Yes, some doctors can be rather harsh“. So I told him, as long as it’s someone who will listen to me and take me seriously…then I’m fine.
Quite honestly, I’m not at all looking forward to seeing a Neurologist. I can’t even remember what I’m fighting for anymore (I don’t remember the concerns or symptoms I’ve been complaining about, thankfully I have these posts).