“What do you want them to do?”
A question I’ve been asked by some well-meaning individuals in my life, and in general, when I’ve been at my lowest point of not having my symptoms treated. (They don’t have Hydrocephalus). Truth be told, there’s a physical reaction I have to these words being asked of me, and not in a good way. I do a check of my response, before it leaves my mouth, while feeling the following:
Hurt, Offended, Judged, Drama queen, Attention seeker, Crazy, Fake
All things I feel but have no real grounds for…or do I?
Regardless, I think what they don’t understand is, it’s taken a lot for me to get to the point of seeking help…yet again! It’s exhausting and frustrating to say the least…
Having your symptoms brushed aside, ignored, labelled as depressed and blatantly treated like an outcast is so soul crushing!
And yet, I for one, when I become symptomatic, go back with my tail between my legs – I have no choice…or do I? Praying that the next doctor I consult with, will see the urgency, frustration and sheer helplessness of my situation is a constant.
These are the facts:
- I don’t want to have brain surgery, but I will if I have to. And, if it means I get to the bottom of knowing for sure if my ETV is still working.
- ETVs and Shunts CAN and DO fail, at ANY time.
- Am I driven by fear? ABSOLUTELY! (I’m only human after all…)
- We are not all the same and clinically present differently. There’s nothing “normal” about Hydrocephalus in any way, shape or form.
- I would love for something else to be wrong. But I NEED to know what that is!
- I know for a fact that what I’ve physically endured, and continue to do, is not all in my head. It’s real!
Symptoms: Burning pull at burr hole, more on the inside. Slight pain down right side. Headache. Lethargic. Listless. Lack of appetite. Nausea but no vomiting (and after eating). Sleeping for extended periods. Feeling weak. Head feels foggy/heavy. Confusion. Impaired thinking. Side of head slight throb down old shunt track, just lasted a few minutes. Right ear feels blocked, Heachache constant throughout the night – unresponsive to pain killers. Worse in the morning and when laying down flat. Eyes and nose feel full. Lack of energy. Right-sided numbness – right eye, head, arm and even down to my toes (briefly). Slight burning on the side of my head. Dizziness. Throbbing in right eye.
If I have to be honest:
I for one, am not pro being shunted. I’ve had it before and the uphill battle to get attention when it was failing, was beyond ridiculous. (No different to now but my ETV lasted much longer than my shunt). The fear I feel knowing the very glaringly apparent lack of knowledge some medical professionals have, when it comes to Hydrocephalus, is scary. Sure, there are those who know enough and act accordingly in the best interest of their patients – Can I have one of them please with a side order of fries? However, I have first-hand experience of those who act to the contrary.
I have mixed feelings from my consult today. I was honestly so nervous and felt like I was just going to fall flat on my face…again. Being judged based on the opinions of other “esteemed” doctors before this one, is not unlikely. The crap thing is, I was hoping not to name drop any of them because I wanted to start on a clean slate, pretend the in-between simply didn’t exist. More importantly, I don’t want him to contact them for any further background, history or opinion. But the Neurosurgeon community isn’t that big and most of them know each other, even across countries. All I can do is pray an open mind is kept on the part of the consulting Neurosurgeon, is maintained and that my individual case is taken into account.
Prior to today, I wondered how I could get through to this doctor and somehow get him to see me as a person and not simply another “overly animated complex Hydro patient“. I felt I needed to tell him that I’m a mother, have the responsibility of providing for my family and am a working professional with an important job. (He thought my job title sounded impressive – Lol!)
I’m sitting on the fence with this doctor and only because last time, I praised with optimism and felt let down. This time, I will reserve my opinion for when the time comes.
Despite all of that, I felt listened to, though I annoyingly forgot some key factors but walked away with a clearly drawn out plan. A fellow Hydro sister who also has an ETV gave me the idea to get a comparison done between my very first MRI after my ETV and a current one. It should show any degree of closure over time.
- Get an eye test done with an ophthalmologist.
- Go for an MRI of my head and full spine, when I feel my “normal” self again, so probably in the next couple of weeks, as is my norm after recovering from the last 2 weeks of being symptomatic. (He told me to get the radiologist to do a comparison between the images from my initial diagnosis, post-ETV and current imaging).
- When I’m next symptomatic (at the peak of my headache) to call his room and let them know. He or a colleague from his practice will be notified and meet me at the hospital to either:
- Do a lumbar puncture (not his first choice).
- Be admitted for ICP Monitoring (which could last between a couple of hours to 15 days, taking up to a second apart readings).
- If Low Value – Referral to a Neurologist/Pain clinic for management.
- If Very low – Look for a leak and plug it (Possibility of Spontaneous CSF leak if pressure is <0).
- If High – Do one of the following:
- Redo the ETV if my ventricles are favourable.
- Insert a Shunt
- Treat with drugs like Diamox or Topomax to control the production of CSF.
He has other patients “just like me who have a few issues going on which sometimes don’t make sense because they’ve been bounced around too much and have differing reports from previous doctors. Most times it’s about going back to the initial diagnosis and working your way backwards to get to the answer or figure out something which may have been overlooked“.
Coming back to this, “I have no choice…or do I?“:
There probably is a choice, the alternative to what I’m doing now. I can do nothing and ignore it when I feel symptomatic as listed above, ride it out until it passes and carry on until the next time. I just have two questions in this scenario for those people who do not have Hydrocephalus and ask the question, right at the top of this post. It requires a truthful answer from anyone who cares to go for it:
For anyone who does not have Hydrocephalus: Is this any way to live? Would you?