Sometime earlier this year I realised that I was not walking as I should; that my balance was uncertain; and that, rather than walking, I was stumbling. Lifting my feet (especially the right foot) felt like I was dragging them out of treacle.
It is hard to pinpoint when I started to notice the changes. At the end of last year we traveled to Hong Kong and walked a significant distance there. The early part of this year was ok as I traveled to football and to the various festivals around the city.
In May we traveled to Phuket; by then walking any distance had become more difficult.
I had to use the banisters to help me up and down stairs.
Visits to the gym meant holding onto the treadmill railings.
It was time to see a doctor.
I explained my symptoms to a doctor at Chiang Mai RAM. She is a neurologist and very likeable. But she seemed unconvinced at my description of the symptoms. She did basic tests for Parkinsons as ths symptoms are similar. But she was also focused more on my not-so-good cholesterol. It seemed that she thought that the problems may be more mental than physical.
I needed a second opinion. Another GP was recommended to me. She asked good questions; she watched me walk and tested my leg strength. The best thing that she did was send me for an MRI.
That meant heading back to RAM hospital. She also recommended that I reviewed the MRI results with the doctor at RAM; small world – the same doctor that I had seen previously.
The MRI pictures were conclusive. Normal Pressure Hydrocephalus. Excess pressure on the brain due to fluid not draining. A condition that was basically unknown until some 30 years ago. As the condition advances into dementia that was historically the common diagnosis.
Here is a quick AI Overview:
“Normal Pressure Hydrocephalus (NPH) is a condition where excess cerebrospinal fluid (CSF) accumulates in the brain’s ventricles, leading to enlarged ventricles but with normal or slightly elevated fluid pressure. It typically affects older adults, presenting with a combination of gait problems (wobbly walk), memory loss/confusion (the “wacky” aspect), and urinary incontinence (the “wet” aspect). NPH is notable because its symptoms can be reversed with a surgical procedure called a ventricular shunt, but only with early diagnosis and treatment.”
Doing nothing was not an option. Mobility problems would have been followed by incontinence and dementia.
Progress was quick. A visit to meet the surgeon at RAM. Followed a few days later by admission and surgery.
The treatment is called VP shunt surgery; again from AI:
“VP shunt surgery involves implanting a system of tubes with a valve that drains excess cerebrospinal fluid (CSF) from the brain to the abdominal cavity, relieving pressure from conditions like hydrocephalus and preventing brain damage. The surgery, performed by a neurosurgeon, includes placing a catheter in the brain’s ventricles and another in the abdomen, connected by a valve. Recovery is typically within a few days, though headaches and a palpable lump from the valve are common.”
I was admitted to hospital on Friday 15 August. Blood tests etc. were quickly completed.
Surgery was at 10.00am on Saturday 16 August. Followed by the rest of the day and overnight in ICU.
I was sent back to the general ward on Sunday and discharged on Tuesday; just three days after brain surgery!
That all sounds far too matter of fact. Surgery is full of strange little moments that you remember.
The operating room seemed compact….and not very crowded. I removed my robe; was helped onto the operating table and covered with a sheet.
I remember being a little surprised that I was completely naked for brain surgery. And remembering that I had shaved down there. Of course no one in the operating theatre would be surprised – they will have seen everything.
The anaesthetist introduced himself. And then I was gone.
I was even more surprised to come out of anaesthetic and find that someone had put a diaper on me….the first in some 66 years!
The next few paragraphs are all hearsay – I remember what I was told rather than what I felt or saw.
My head was shaved pre-surgery – as expected. A new look? Given the two cuts that were needed that makes sense. The surgery may have taken about 90 minutes.
Apparently I came back to ICU from surgery and was almost immediately wheeled down to the basement for a CT scan. I have no memory of this at all. Tip of the hat to whomever had to lift me onto the CT scanner.
Tai (and our friend Anna) came to see me in ICU after I returned from the scan. Apparently I was a mess as I emerged from the anaesthetic. I was calling out “it hurts so much I want to die” and annnouncing for everyone’s benefit “I feel like crap:” demanding coffee and not recognising Anna (maybe I did !).
Apparently Anna, who is a serously good singer-songwriter, thought her singing in the ICU ward would help me or at least be a distraction!
I am so grateful to Anna for being there to support and look after Tai. The girls had time to escape for lunch while I was in surgery.
Saturday night in ICU was hard; in an anaesthetic haze; bright lights from the nurses’ station outside the room and feeling like a zoo exhibit as people looked into or entered the room. And yes – there was a decent amount of pain and almost no sleep.
Tai stayed in the room with me. Having her there was very reassuring.
On Sunday the catheter was removed – it is long! By late afternoon it was time to go back to the general ward.
Monday and Tuesday saw visits to the hospital’s physiotherapy gym….and that happy realisation that i was mobile and reasonably steady. Tai stayed with me and shopped for food and drinks. Yoghurt was popular.
I was discharged on Tuesday afternoon (after paying the bill) and went home with Tai; we had a couple of days at home before Tai went back to Bangkok.
The RAM hospital staff had been terrific. I guess my only concern was the lack of support when I was sent home. No written instructions other than which medication to take and when; no contact number in case I had a relapse; no advice on signs to look out for. And no follow up contact from the hospital outside of my scheduled follow-up appointments. After that much drama a simple call to make sure I was ok would have been very welcome.
As as aside in the UK if you have VP shunt surgery for NPH you are obliged to tell the DVLC (the driver licensing authority) and you are banned from driving for 6 months – when the DVLC will contact your surgeon for clearance.
I asked my surgeon – driving is not a probem he said. And I was driving short distances after little more than a week.
The staples in my skull came out, some a week after surgery, some after 12 days. The stomach stitches dissolved on their own.
After two weeks I could wash the little hair that was left. I still had an aching head where the shunt was installed – varying from dull ache to sometimes worse.
Two weeks after surgery I could go to the gym at Rochalia. Mostly just walking and balance exersises.
I might have overdone it; by the Tuesday evening I had quite bad pain at the base of my spine. This was even worse the following day. Not something I have experienced before.
The pain was bad enough that simply finding ways to move while in bed or to get up if needed was challenging.
I eventually took a Grab car back to RAM on Friday. The consensus was that the backache was not connected to my surgery other than I might have over stretched when exercising when already in a weakened condition.
So for the next two weeks I did physiotherapy every 2nd or 3rd day and that (and I suspect time) eased the pain. I am now back swimming and carefully back in the gym.
I had another CT scan on 16 September – 4 weeks after being discharged, This was good. There is still some soreness/sensitivity in my head around the shunt location but the surgeon believes that it is no more than sensitive nerve ends adjusting to the placement of the shunt.
Reading about the surgery the suggestion is that it can take at least three months for the brain and body to fully adapt to the implanted shunt system.
I still get tired. But I am feeling much more light-footed. The stairs are navigated with ease. And I am moving quickly again. I wonder if it is time to try and hit a golf ball. Update – I was at the driving range on 23 December. Enjoyed doing something that I used to be quite good at – a couple of hand blisters the only evidence that I had not played for over a year.
The good news – the surgery did what it is supposed to do. Barring any dramatic revelation from NPH research the shunt will be with me for the rest of my days.
If you have got this far thank you for reading. I guess one of the reasons for writing this is that many people that I know are of a similar vintage. My best advice – if something does not feel right then get it looked at.
And if anyone thinks that NPH may be an issue for them I would happily share my experience. Just message me.
Back to RAM. The people there, from my iron man, trail-running surgeon and my neurologist, to the physiotherapists and nursing staff, were welcoming and wonderfully professional. Thank you.
Some of the pictures might be a little alarming, Apologies.
A note on the adjustable shunt:
The Strata NSC valve has five performance levels: 0.5, 1.0, 1.5, 2.0, and 2.5, which correspond to a range of opening pressures and CSF flow rates. The setting is adjusted non-invasively with a special tool, basically a magnet.
It has been an interesting summer.
Links.
Normal Pressure Hydrocephalus (NPH) – Cleveland Clinic
Hydrocephalus shunting – Medtronic
The future:
Hopefully a healthy, active and normal life.
But things can go wrong and recognizing the signs and symptoms of shunt malfunction is crucial. While symptoms vary considerably from person to person, recurring failures often exhibit similar signs within an individual. When a sudden malfunction occurs, symptoms can develop rapidly and may be life-threatening, requiring immediate medical attention.
Here for my family and friends are some of the symptoms to watch for, as they may be an indication that there is a shunt complication:
People who are diagnosed and treated in adulthood, including those with NPH, tend to revert to the symptoms they experienced before initial treatment when they are experiencing a malfunction.
Signs of infection, such as fever, redness, or swelling at the shunt site
Mild dementia (Forgetfulness, confusion, trouble thinking or focusing)
Urgency to urinate or loss of bladder control
Difficulty walking
Poor balance
Falling
Feeling withdrawn or talking less
Mood changes
Return of pre-treatment problems (this has to be the most obvious issue?)
Fluid leaking from the shunt incision sites, potentially present with shunt failure or infection