Hydrocephalus : Dr…I am at your mercy…

Monday, I had an appointment with Dr H whom I had seen before, a few years back (In my book Hydrocephalus: Floating Faithfully, I started using letters of the alphabet instead of real names for doctors whom I’ve consulted with since diagnosis.  I hope I don’t end up at Z).  I opted to consult with him because of the worrying consult with Dr K.

I asked him to redo my ETV right off the bat because I have had enough of not knowing if my ETV is still open and waiting to slip into a coma. After looking at my previous scans and notes a few years back, he asked the usual questions. “What are your symptoms? Where is your headache? What makes it worse or better? Do you have any warning signs? How is your bladder? How is your balance? How is your vision? etc.” I got the feeling he was asking all the textbook questions and expecting the same in return.

I told him about last week when I was woken up by the recurring dull pain in the back of my head and a Hydro headache. It lasted all day this time and my spine was paining, this was both new and worrisome to me. My whole back is now paining non-stop. It wakes me up at about 2 am and it’s difficult to fall asleep again. Laying on my sides is painful and even though laying on my back isn’t less painful, it just feels better.

I told him about my sleeping episodes, which started last October. That these sleeping episodes last a full week from start to my body feeling “recovered“. That it feels like a hangover and my body is lame, I feel listless and can’t even manage to do household chores, which is part of my daily life. I explained that I’ve had a few of these episodes since then but last week, in particular, bothered me.  I told him how I got confused at work that week and, how I called someone a completely different name because I couldn’t remember it. How I’m making mistakes and struggling to process things and just feeling sleepy all the time. I also told him about the fact that I get extreme nausea and ended up laying on the floor in the women’s toilet at work – he had no reaction.

He proceeded to tell me that my symptoms don’t sound like the normal expected ETV failure symptoms. I looked him in the eye and said “I have friends who have Hydrocephalus too with ETV. They have all gone through failure and all tests and scans, even though showing flow through the ETV, still left them with symptoms of failure. It was only after the surgeon operated that problems were found“. His face changed a bit as he asked me “What sort of problems?” I told him scar tissue or a membrane covering it, etc. I even brought with me a publication outlining some important facts to motivate my request, which I found online (but decided against showing it to him in the end).  I genuinely thought he was being sincere in his line of questioning and didn’t expect what happened next.

He looked at me and said, getting quite heated, “I have dealt with ETV and Hydrocephalus patients for a long time. You might have a number of friends but I have about 190 patients who I have diagnosed and treat currently“. I then realized looking at him, that he was angry…his face and neck went red, becoming increasingly more so as his emotion built up. I tried to interject a few times to explain that I wasn’t questioning him but merely stating that this is what other people have experienced. Unfortunately, he didn’t even give me a hearing as he just kept on raging and talking over me about how this takes “skill and knowledge with years of experience!”

I felt like a naughty dog with my tail between my legs. I wanted to run out of there but instead just looked at him and felt the burning sting in my eyes. I was came undone and started crying…I knew this was the end of my fighting and being an advocate for myself, he dominated the consultation. When he eventually shut up, in a last attempt, I told him that “I just want help and can’t carry on like this because it’s affecting my quality of life“. That, “I have children to think about and waiting to go into a coma is not an option. I just want help and making the difficult decision to have surgery, is a last resort for me but ultimately where I now am“.

Let’s face it, who goes around asking for brain surgery?!

He calmed down and said he would need to do a set of 3 scans, an MRI, CSF flow study and MRV, so he had something to compare my last scans to. He explained why this was necessary and if there was the slightest change, he would operate. If there’s no choice, we might need to do an EVD to monitor CSF changes. However, if he found no change, he would be very reluctant to operate purely because I was asking him to. I asked him about having slit ventricles and the possibility of still having an ETV. He said it could still be done using a pediatric endoscope.

I took the option of doing the MRI and asked him for advice if things got worse, explaining my reluctance to go to the Emergency department. I explained that they only pump me full of morphine for pain and doing a CT scan, which will show them nothing, despite me telling them that. He suggested calling his receptionist who will get through to him and he would get in touch with me.

He ended the consult, shook my hand and I left his room as he was filling in the paperwork for the MRI, which “should happen this week if not earlier“.

The next morning I woke up with a severe Hydro headache at 5:30am, lasting all day and accompanied by nausea.

The problem I have with how it went:

• All the things I’ve ever blogged about and told others not to allow, came flooding over me. I felt like a sissy for not standing my ground but ultimately crazy, questioning myself and what I’ve been complaining about.  I doubted my symptoms and questioned if they were real or just a figment of my imagination.
• Also, I was angry more than anything. If I do need an operation this very same man who just pounded my flesh and crushed my soul, would be the one to do it. Leaving me feeling like maybe it was one I would have to suck up to get the care I need for now.
• If I end up with a shunt again for whatever reason (I really don’t want this), I anticipate a struggle of note, even more than I have now with no help and easy access to these surgeons.
• Scared of the results showing nothing and not having an operation, then having to live with my continued symptoms until I slip into a coma or…die.
• I hate that my husband, who knew I had this appointment and what my intention was, to ask for an operation, didn’t ask how it went. But, I’m also grateful at the same time because I couldn’t bear a “I told you so moment”. This is a bitter sweet feeling though, purely for the reason that I know he is probably scared and doesn’t want to risk losing me. I’m scared too…
• I hate that Neurosurgeons have a god-like complex and that we as Hydrocephalus patients have to be subdued to this kind of treatment.

I decided last year that blogging about my experiences, serves as a record for me when I forget (Also to keep track of what I’ve been through).  But, it also provides a place for my family to refer back to if anything bad happens to me, because of my Hydro care being compromised.   (I pray that day doesn’t come…).

More importantly, I blog to give a voice to the millions of people around the world with this condition.  As much as this experience was unique to me, I’m sure others have experienced it too.  My aim…to shine a light on this situation.

There’s also a nagging thought that lingers, what if a surgeon “slips up” during surgery because I’ve just pushed them too far (Queue paranoia! Am I the only one?).

Let’s see what this week holds in store…