A few days ago, I was faced with a heavy burden of having to fork out just shy of AU$5000 up front, which I normally keep under the mattress for a rainy day, like everyone else (sarcasm intended). It required an added level of perseverance and resourcefulness. Let’s just say, the financial strain of brain surgery #6 has been alleviated to the point of a confirmed booking for this coming Tuesday morning, 4 May 2021. With Monday being a public holiday, I get to ease into it as much as possible but, to be honest, I have not stopped “buzzing”. Thursday was a whirlwind day trying to get my life sorted to the point where all this is possible as I ultimately would have had to wait a few more weeks for surgery or, until I’ve saved up enough money. I simply would not let that be!
As promised in my previous post, I’ll share with you how the consultation went and some other little nuggets I’ve found useful in hindsight and having done this a few times before. (Apologies in advance, my memory is a bit crap at the moment, more so than normal and I’m definitely not thinking straight but, I’ll try to give you as much info as I possibly can).
When I had my consultation for my very first brain surgery, 14 years ago this month, it went nothing like the one I had on Wednesday afternoon with Dr “O”. I had no idea what questions to ask or what was important to know. I stared at the surgeon like a deer caught in the headlights of a car. I’ve since learnt some valuable lessons along the way, some harder than others, and applied it to ensure I walk out of there feeling much more in control and informed as I have ever been.
Here’s how it went:
He looked at me with so much concern and care stating that he was ready to admit me the day before when he heard I had called and advised I go to the hospital Emergency room. After getting up for work, I simply ended up back in bed and slept the day away. I was concerned about this because it wasn’t that I was tired but more the pain in my head and just extreme lethargy. It was familiar to me. I called his secretary and asked if there was any way I could see him sooner and explained what was happening. She said she’d speak with him and call back, which she did a few minutes later. I was advised to go the hospital Emergency or see him the next afternoon. (My previous experiences stopped me doing so, so I opted to see him instead).
We reviewed the MRI from the day before and Dr “O” measured the ETV opening on the screen, it was 1mm. This 1mm opening still allows CSF flow though and is the reason why my MRI report is always showing the flow to be “normal”. He called the x-ray department at the hospital to find out what the results were from the day before. I partly overheard the doctor on the other end saying that it was normal and they could see flow through the ETV but not the rest of it. Dr “O” ended the call and said he expected that to be the case. However, he explained that normally, this opening should be 5/6mm and would explain the symptoms I’ve been having. Also, since I’ve been symptomatic – headache, dizziness, nausea, intermittent vision issues, sleeping for long periods, increased frequency in urination, poor memory, lack of concentration, struggling to focus and generally feeling unwell, he attributes this to possibly being the result of the ETV not being open wide enough. He said: “Even though there is flow, it looks tight”, meaning, it is not sufficient.
What my procedure will entail:
He will redo my ETV, which is the “simplest” and at the same time, put in a pressure monitor, thereby killing 2 birds with one stone. The operation should take around 60 minutes to perform and in total around 90-minutes, after which, I will be taken to the ICU for further monitoring. I will have another MRI to check the size of my ventricles and to check that everything is fine/stable. After about 2 days of monitoring, if everything appears fine, he will remove the pressure monitor and I get to go home. (Best case scenario)
He also suggested putting a Titanium plate over to cover my burr hole – “to make it nice and flat”. (I couldn’t help thinking of the song, Titanium by David Guetta, might just make it my theme song for this surgery.)
He also explained that when he puts the ICP monitor in, he tends to make an incision just below the hair line, which will leave a small scar on my forehead. This is to ensure that I don’t run the risk of developing an infection, in case any of the CSF leaks out and runs back to the burr hole site. (When I told my daughter I would have a scar on my forehead, she asked; “Like Harry Potter? That’ll be SO cool” Gotta love it!)
The backup plan:
If, there is:
- Any indication of increased/raised pressure from the monitor OR,
- The MRI post-op shows any issues OR
- There is no indication of increased/raised pressure and the scan looks good, but I feel unwell, it may be an indication that I have communicating Hydrocephalus.
In which case, he will insert a shunt.
Questions I asked, useful to me:
Are we able to put a stent in the hole of the ETV to ensure it doesn’t close?
No, because the ETV is too close to the pituitary gland. Adhesions can develop around it and there is quite a bit of movement around that area.
I explained that after my first shunt was put in, 2 years later it failed. I had consults with various doctors and only one was prepared to listen, just like he is now. I ended up having 3 operations over 3 days, while pregnant – shunt revision, replacement and an emergency ETV on day 3. I was comatose and off work for more than a month. Also, an ETV was something I hadn’t even heard of before, nor my husband who had to make an on-the-spot decision for the surgeon to proceed, as I was in no position to do so.
I was determined to be part of the decision making this time, and asked the following:
Have you heard of a Miethke blue and would you recommend it? – I have but no, I would not. Miethke valves are tricky to pump.
What type of shunt will you use? – Sophysa Polaris, it’s relatively new and has a ball inside. When you stand up, there is no over drainage. It has 5 different settings and is programmable. MRI has no effect on the settings. The Polaris has a pump inside which you can press from the outside if it gets blocked. There is the possibility of headaches when you stand up, but this usually settles after a while and doesn’t affect everyone in the same way. It has an anti-siphon device.
Do you shave off a lot of hair? – No, just at the site of the burr hole for an ETV. But, if we end up putting in a shunt, we shave off more hair at the back. He said jokingly; “Then you’d need to wear a beanie because we take off quite a bit and, it’s getting colder now, just to keep your head nice and warm”.
I asked if he could go in via the same burr hole since that was made for my initial shunt placement, he agreed we could. Once done, he would cover it with the Titanium plate.
I sense his desire to help me (he said this much) and, the level of empathy, is simply heart-warming.
It feels like I’ve been waiting forever BUT the time has FINALLY come and what an uphill battle it has been. Whether I’ll get confirmation one day (or not), of the symptoms I’ve been experiencing since 2013, were in fact the start of all this, remains to be seen.
A week after my surgery on Tuesday, I have my Thyroid surgeon consult. I tried to get it pushed out, but he is fully booked till after November. Fingers crossed all goes well with my ETV and I get to attend this consult. It’s important but not as important as addressing the issues with my brain right now…
At the end of our consult, Dr “O” remarked that shunts are tricky and they fail for various reasons. Also, younger Neurosurgeons don’t always know what to do next when a patient presents with symptoms such as mine, experience in this case makes a difference. I agreed because, to me, it has become more than evident.
This operation may not be a cure but, at this point in time, it’s the best I’ve got and I’ll take it with arms wide open!