Choosing to insert a shunt of any kind can be a big decision for hydrocephalus sufferers. As with anything, there are both pros and cons to living with a foreign object inside your head; read more to see what I have experienced with my first VP shunt.
On March 21st, 2018 I got my first programmable VP shunt inserted. Since then, I have learned a lot about living with a shunt: both what I was warned about by my Neuro Surgery Team and what I discovered on my own by trial, plus a few other things that I picked up from wonderful hydrocephalus support groups. I hope that all of these things will help you whether you are new to shunt life or new to hydrocephalus itself.
After my first surgery - an endoscopic third ventriculostomy (ETV) - in early 2016, my hydrocephalus symptoms returned and we were once again faced with possible forms of treatment. My neurosurgeon, Dr. Zhang, seemed to think that the ETV was not blocked. Rather, I simply needed to try another kind of treatment to assess the cause of the increased build up. So, under his advice, we decided to insert a VP shunt.
Before surgery, my family and I really knew little about shunt life. We were informed of the associated risks, such as infection and blockage, but we did not know quite what we were getting into.
The surgery itself was like any other. It required lots of pain meds and a somewhat extended recovery time (see the full story of my shunt placement here). However, it was what I learned throughout this recovery that made an impression.
First off, I greatly underestimated the possible pain caused by having a foreign object newly placed in your body. As I elected for a VP shunt, my tube runs all the way from my head into the peritoneal cavity (the inside of your abdominal area). And boy, can that tube poke every nerve all the way down!
The first few weeks, I would end up balling my eyes out and immobile as I desperately attempted to avoid irritating the tubing. It seemed as though even little movements would shift the tube and cause intensely sharp pain. In fact, even the inevitable post-surgery abdominal gas seemed to make the situation worse.
At one point I ended up in the emergency room, certain that something was terribly wrong. My surgery nurse had warned me that there might be some pain as my body adjusted, but I could not fathom how the shunt could be this painful if there wasn't something punctured!
To my complete astonishment, the imaging came back normal and I was assured that my new shunt was functioning just as expected. So, we went home feeling better but slightly dismayed and I decided to hunker down for more discomfort.
Thankfully, the next several weeks proved that my body could indeed adjust and, believe me, yours can too! As my surgery nurse eventually explained it: when the body first senses a foreign object, the brain triggers signals to the rest of your body alerting it to what it considers an intruder - in this case, the shunt. Then, scar tissue eventually forms around the tube so that it moves less frequently. As the body realizes that this intruder is "here to stay", the brain sends less and less of these pain signals until the body at last recognizes the foreign object as part of the system.
Some things that I have noticed affect my shunt:
I know, it sounds a little daunting; however, I have experienced such relief since the shunt was placed a few months ago! Yes, I still have a little pain now and then when I toss-and-turn a little too much while sleeping. And gas continues to complicate the issue as it seems to press the shunt into nearby nerves, so I have given up once-beloved fast food, but the pressure relieved by the shunt has made life with hydrocephalus much more bearable.
Many of my initial symptoms - like urinary issues, constant pressure headaches, and the well-known hydrocephalus shuffle - have all dissipated with time. So, while all the little caveats make living with a shunt something that surely requires some getting used to, after a while it becomes easier to ignore the little quirks and realize that your quality of life has improved enough to make it well-worth the trouble.
In hindsight, it would have been nice to have this kind of information before the actual surgery, but sometimes we learn by living through it ourselves. Everyone has their own treatment plan that works and I encourage you all to sufficiently explore your personal options before making any decisions. As always, please read our site disclaimer and talk to your doctors before misusing available information to self-treat.
I wish you all the best on your hydrocephalus adventures. I love to hear fellow hydrocephalus stories, so please feel free to share your own below and gain built-in support!
Love from a fellow hydro-head case,
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