Interview of Mary by Wendy Brown on 26 March 2025
This interview was conducted with Mary who was recently diagnosed with hydrocephalus and kindly agreed to share her experiences so far.
When were you first diagnosed with hydrocephalus? What age group were you in?
I was diagnosed early November 2024. I am 70.
I had a head injury in early 2019 and cervical spine surgery two years later which did not go well. This surgery resulted in a CSF (cerebrospinal fluid) leak with the CSF collecting at the base of my neck. An MRI just before my shunt surgery showed that the fluid collection was no longer in my neck, as it had been for a long time. Doctors seem unwilling to explore any connection to subsequent hydrocephalus, but I think that it is not a coincidence.
What was your reaction to the diagnosis? What was the reaction of your family?
Both my family and I were very relieved that I did not have multiple sclerosis, and we were happy to learn that hydrocephalus can be managed. I had been showing the symptoms of hydrocephalus for years but it was not identified because I had been suffering with an adrenal tumour and had severe hip pain. Combined, both conditions caused symptoms similar to hydrocephalus. It was only after both those conditions were sorted that the symptoms were viewed differently. Also, I had been complaining about incontinence for years without receiving any useful treatment or attention.
It was only when my walking did not improve after my hip replacement that I was referred to a neurosurgeon and neurologist who, after a brain MRI, quickly identified I had normal pressure hydrocephalus (NPH).
Were you working at the time you were diagnosed?
No, I was not working when I was diagnosed with hydrocephalus. Looking back, I had shown mild cognitive issues following the head injury when I was still working. Covid made it easier to continue and work from home longer than I would have if I had I needed to travel.
Was there any impact on your job, were your manager and colleagues aware of your diagnosis?
I chose to retire and focus on my health well before diagnosis. I felt I was not functioning as well as I had been before the symptoms of hydrocephalus became apparent. I think that it was four years from the onset of symptoms before correct diagnosis was achieved. The symptoms accelerated markedly in the last six months before shunt insertion. Improvement was then substantial and rapid.
What has been your biggest concern or frustration since being diagnosed?
Firstly, I saw my GP yesterday who was surprised I was using a walking stick. I feel I need this walking stick to help me not fall as I still feel a little unsteady on my feet. I would value greater cognitive clarity but could cope with what I have if need be.
Secondly, one close family member does not understand hydrocephalus is a chronic condition which is only made manageable by neurosurgery to implant a shunt. They also do not understand it is a matter of trial and error to find the best valve setting to suit each individual and the shunt can fail at any time. This person seems to think I am just attention seeking. That is very disappointing.
How did you learn about the Hydrocephalus Support Association?
When I was diagnosed, I knew very little about hydrocephalus and knew that it was a condition that affected children. I searched on the internet for more information.
What prompted you to contact and join the HSA?
During my search for information, I came across the HSA website. I was very impressed with their website and thought it would be good to talk to others who had knowledge and understanding of hydrocephalus. I felt I should join and pay a membership fee to help support the organisation especially as it is run by volunteers.
How did you become aware of the NPH Peer Support Meetings?
I came across information about these meetings while I was exploring the HSA website.
Why did you decide to join these meetings?
I do not have a lot of support and some family members are quite critical not understanding the impact hydrocephalus can have on your life. Also, I am still struggling with some things and think the people at these meetings can provide valuable support and information.
Has attending these meetings been beneficial for you? What benefits have you gained?
Yes, the meetings definitely have been helpful. The benefits are having the opportunity to talk to others with NPH, understanding the different experiences of others and the huge variety of issues, learning about the changes that can happen, and knowing there are others dealing with this condition.
Would you recommend these meetings to others with NPH?
Absolutely.
Do you have any suggestions on improvements the HSA could make to the services it offers including the recently implemented peer support meetings?
I think that the peer support meetings could be flagged on the first page of the HSA website. It could be “Would you like to talk to others with NPH?” with a link to the meeting details. I had to do some exploring of the website before I found the information.
Thank you Mary for your time and willingness to share your experiences and feedback with others who have hydrocephalus particularly the NPH form of this condition.