One thing embedded into our DNA as a species is constant self-diagnosis. We look for patterns, indicators and signs that help us form a mental picture of how the world works and why things happen. This skill has undoubtedly advanced us as a species: we keep asking why until we find an answer that seems right.
We BigD club members are no exception. And as far as all things kidney and dialysis go, we are chronic self-diagnosers. I am currently trying to self-diagnose a problem with my hands, and true to form, I can only say that each wrong diagnosis is getting me closer to the right one.
Up until January this year, I’d had a trouble free fistula for 14 years. Then I had a blockage that required a fistula reconstruction. A week or so after this, I found that I had lost much of the touch and feel sensations in my thumb, index and middle finger on my right hand. My right (fistula) hand became much weaker (unscrewing lids and removing plastics caps has become a real hassle) and less dexterous (to the point where I can’t do up the button on me left shirt sleeve).
My initial diagnosis was the path of least resistance: I assumed it was probably a temporary nuisance that comes with wrist surgery. Wrong. It got more noticeable as the weeks went by: at the gym, raising and lowering weights arms length has started sending small electric shocks down my arm.
Time to reassess. I discussed it with others at my BigD unit and after a little research, I found out about “Steal Syndrome”, which is where the new, larger fistula “steals” much of the blood supply that should flow to my hand. Steal syndrome is usually related to fistula reconstruction, and can be mild to bad, starting at intermittent numbness going right through to losing the tips of your fingers. My new diagnosis was obvious: while not common, everything I read fitted the symptoms.
Steal Syndrome must be dealt with quickly to stop any permanent damage. That means either using a balloon to expand the remaining veins in my hand via an ultrasound, or surgery to reduce the steal using a band or a ligature on the fistula. As a last resort, the surgeon can close the fistula and create another elsewhere. None of the surgery options appealed to me, but I knew it had to be seen and treated ASAP, so I made an appointment to see the vascular surgeon who did my reconstruction.
He dismissed Steal Syndrome fairly quickly. He could feel strong pulses into the hand and my fingers were as warm and red as those on the other hand. No, he said, this looks more like Carpal Tunnel Syndrome. While I had heard of this, I knew nothing about it (so how could I be expected to self-diagnose it?). Obviously, I have checked it out since.
An important nerve that serves the thumb, index and middle finger in each hand is the median nerve. It extends down your arm, through a tunnel in your wrist (yes, the carpal tunnel) and into your hand. If the Carpal Tunnel becomes compressed, it inhibits the nerve’s operation in your hand. Of course, the symptoms are pretty well the same as for Steal Syndrome, except you get to keep your fingertips.
The big news for me was that it is a common condition for people on long-term haemodialysis (more than a few years). While it always accompanies Steal Syndrome there can be several other reasons: the Tunnel can become blocked due to calcification as a result of an overactive parathyroid, a thrombosis, for example, underneath your fistula, restricted blood flow to the Median nerve, inflammation or thickening in the joints, etc. My hand problem fits in there somewhere, and Carpal Tunnel may well be my new diagnosis.
The first step is to do some blood flow tests and to check things out via ultrasound. Treatment usually involves surgery under local anaesthetic. But that’s the next step. Tests first – scheduled for next Friday. Hopefully, all can be fixed pretty quickly. Provided we get the diagnosis right!