Non-communicating hydrocephalus- what it is and what's the cure?
I decided to share the below to hopefully reach people who have been going through something similar and are wondering how other people recover from such a brain surgery like ETV (Endoscopic Third Ventriculostomy).
In September 2018, I fell hard on my head and back from a balancing rope between the trees in the forest. I was taken away by ambulance and though as per doctors I did not get a concussion, the weeks and months after the fall were filled with pain. Daily headaches, neck pains, back aches, balance problems, memory problems, constant pressure in the head, loosing feeling in my right arm etc.
After months of pain and visiting doctors to understand what’s going on with my head, I was sent to MRI and neurosurgeon diagnosed me with non-communicating or an obstructive hydrocephalus, which means that the spinal fluid (CSF) flow is blocked along a passage connecting the third ventricle in the brain.
There is no other known cure for non-communicating hydrocephalus than a brain surgery. There are two common surgeries for hydrocephalus- either surgical insertion of a drainage system, called a shunt or ETV (Endoscopic Third Ventriculostomy), where with surgical procedure an opening is created in the floor of the third ventricle using an endoscope placed within the ventricular system through a burr hole. For myself, the neurosurgeon recommended ETV, which was performed in March 2019.
RECOVERY FROM THE BRAIN SURGERY
Since I haven’t found a lot of information in the web about the recovery time, possible side-effects, complications from this particular surgery, I thought I would like to share it myself with the others, who are women in their 40s and who have recently had the same surgery and wondering.
LEARNING TO WALK AGAIN
Right after the surgery, it took me a day or two to be able to start to walk slowly as the world was very unstable, I felt dizzy and it did not feel natural to walk.
Neurosurgeon encouraged me to get on my feet as quickly as possible and back into my daily routine. I took the advice seriously and tried to walk as much as I could, gradually increasing the time every day I was in the hospital. I was released after 4 days. I took a week off from work for recovery, so in total I was away from work for 11 days. Now looking back after 10 months, it was a mistake. I should have taken time off from work for couple of months to focus on the recovery.
I continued on a daily basis walking longer distances. It was difficult to drive a car after the 11 days not being behind a steering- wheel, but I had to drive for a checkup to my family doctor. I really had to focus more and be more careful while driving. But this luckily improved quickly.
Neurosurgeon sent me also to do memory tests right after the surgery and also three months after the surgery. The tests were exactly the same. Though nothing major came out from these tests, that I should have been worried about, I was struggling with short-term memory and cognitive performance as the speed was inconsistent in a short space of time.
Apart from the shaved area in the front left part of the head with 2.5cm scar, which I have had to cover more months, I lost quite a bit of hair after the surgery. Hair fall-out stopped around 2 months after the surgery. I also lost my period for 2 months, which fortunately came back and also went regular after couple of months. However in general I have been struggling with a lot of daily anxiety, emotional ups and downs, which has improved over time, but I am not yet where I used to be.
PAINS AND PRESSURE
What was a great relief after the surgery was that I did not have any headaches, neck pains or back pains nor pressure in the head- only the pain from the scar. And this was the case for three months after the surgery.
Four months after the surgery I started to feel very tired at the end of every day, working days started to become real struggles. I started to develop headaches again. I could not focus nor understand what people were talking. I realised I had to take a break from work and give my body more time for recovery. I took one month off from work. It did help. I had more energy, I felt I could show up to the world with my full potential.
Unfortunately it took me two months where I was back again in the same position, where I started to feel pressure in the head, felt nauseous, got headaches (sharp pains in different parts of the head or overall stronger headaches). I switched to standing desk at work after the operation as I did not feel good sitting. Whenever I stood up from sitting, laying position and started moving, I felt dizzy.
I was sent for another MRI in January 2020. The results were good, the brain was functionally working, which was very positive- there had not been any fluid build-up and from the MRI photos it looked that things worked well. My neurosurgeon said, I should not be worried about the head anymore and my headaches, pressure, dizziness could be linked to something else.
As my hemoglobin, haematocrit, iron and ferritin levels have been on the lower side, where I also had to take iron supplements for a short period of time, I am now going to focus on increasing my intake on iron-rich foods and see how this will effect my well-being after some time.