The other day I was holding my laptop, on my way to our dining room for some privacy, so that I could get in my writing zone. (I either need to be alone or be able to shut the world out so that in my own way I am alone, when I write.) I don’t know what happened. I was tired from the night before and I do have my klutzy moments, but the next thing I knew, I nearly dropped my laptop. In my quick and successful attempt to catch it, the corner hit me on the right side of my head. It didn’t strike me extremely hard, for most people it would probably have felt like someone patted them on the head too hard, but for me it is different.
I have a VP cerebral shunt on my right side and the computer struck my shunt bubble. I was in agony, but knew it would pass in a few hours and it did. My husband asked me what it felt like, and I told him to think about the time he broke his wrist as a child. Envision that it is not casted, but simply in a brace and then bring a hammer down as hard as you can to the most sensitive part of that fracture. He winced, which meant he understood.
My right side is so sensitive that I cannot lie on it at night and when I sit against something, I need to be at an angle. I have had a shunt since I was eighteen months old, so adapting to it and what I need to do or not do has been very natural for me. After about fifty minutes of ‘hammer to a fracture’ pain, I was simply left with the milder yet steady ‘fell asleep on your right side’ pain. That lasted a few hours. And then the pain was gone, as if it never had been.
The thing is, whenever I do something to my head (not even the right side per say) it is not about the physical pain, but about the ‘oh shit’ feeling about what might be coming. I am always afraid that my misstep will result in a shunt revision. I’m not paranoid. Over the last twenty-eight years I have had dozens of shunt surgeries. The longest I ever went without a revision is six years, which was before puberty. The second longest I have gone is five years (ages 21-26) and the third longest, eighteen months. The shortest amount of time between surgeries was nine days. The average amount of time is every nine to twelve months. I can be fine and have a morning like every other (and I am a morning person). At 9:00 I can be fixing breakfast, humming a tune I am embarrassed to have stuck in my head, and be on the floor by 9:02. That is the worst part about the shunt, at least for me – I never know. Every time I travel I need to research neurosurgeons just in case and I cannot travel internationally without a companion because of the possibility of my shunt malfunctioning.
When it breaks, I typically lose lucidity within fifteen minutes. I cannot speak or move; not because I am unaware or have sustained brain damage, but because my central nervous system is overloaded with pain that it systematically shuts down (bodily self-preservation at work). Imagine trying to communicate what is happening in a foreign country on a fifteen minute time table. The pain is beyond a scale, but once I go into shock it is in the background, much more muted than it should be. I know it hurts more than anything else I have ever gone through and my familiarity with the pain doesn’t make it any easier, but since no pain killers help, this shock is quite welcome. The silver lining is that I have one hell of a pain tolerance for everything else. Compound fracture? No problem! Open heart surgery? Bring it on! Crushed vertebrae, all right that was a struggle for the first few weeks, but because of the conditioning my shunt has put me through, I powered through it. (I went to work that afternoon, but I refused to sit at my desk, instead I stayed standing.) And with the rest of my medical history (what I jokingly refer to as my medical resume) that pain tolerance has been a godsend.
When it breaks, I know the drill, but it is still an ordeal. I have Slit Ventricle Syndrome, which occurs in a small minority of shunted patients. The ventricles in my brain are rigid and do not expand. This is why when my shunt breaks I have less than twelve hours to have a revision or that is it. You know what I mean by it. It also makes it almost impossible to diagnose. CT scans and other medical imagining tests used to diagnose a shunt malfunction are useless. They are the procedure, but in my case are dangerous because a broken shunt means enlarged ventricles while a healthy person has very small ventricles, like slits (yes that is how the syndrome got its name). A doctor who does not know me would think I did not know the difference between a migraine and a shunt malfunction and send me on my way. Imagine how that would work out. Slit Ventricle also means I have many, many shunt revisions. It is part of the gig.
So when my shunt breaks I have a process.
- Deny it is the shunt and look for ways that it is Slit Ventricle Syndrome instead.
- Call my surgeon or now my husband will call my surgeon under the guise of ‘I just want to confirm this is Slit Ventricle. (Funny tidbit, if I call my surgeon or I let my husband call him I already know that it is not Slit Ventricle, but give me five more minutes of denial please.)
- Go to the ER, where the surgical team is already waiting. They figure out where I am at and if they do not have an open OR (operating room) try to figure out where my I fall on the priority list, which changes when someone else (or me, I have totally been that person) takes a turn for the worst).
- When I cross that point of no return I tell someone through a series of slurs or they notice an alarming change in my behavior. I am more communicative and swear there is no pain, which is true. I am floating on a fuzzy haze.
- Crash and get rushed to the OR.
- Have brain surgery and depending on the particular problem with my shunt, abdominal surgery.
Twelve hours later I am thankful to be back at home. The next ten days are hell, but I know what to expect. The first shower is excruciating and trying to detangle my long curls a nightmare. (They do not shave heads anymore, not for at least a decade because most surgeons believe micro cuts can heighten the risk of post-op infections). I am far more tired than I want to be, because my coping mechanism has always been keep busy and stay productive. I find a balance, but not before pushing myself too hard once or twice and paying for it. Within two weeks no one would ever know I was in the hospital. I prefer this.
No matter how many times I do this song and dance it never gets easier or less painful. Injuring my head is the best way to make sure the shunt will break. It needs no reason, and usually there isn’t one. Of course there is a list of don’ts and at the top of the list is ‘don’t do anything to the right side of your head’. The second is ‘don’t touch or mess with your shunt bubble in any way’.
So, when something like what happened on Friday happens, it brings out that underlying fear of, please not this time; please spare me my thirty-eighth brain surgery. I think it is always in the back of my mind, but just enough to keep me cautious and to plan ahead. I don’t live in fear or let it limit me. I took my GRE for graduate school two days after I had a shunt revision because it was already scheduled. I never allow a condition that I have define me. But saying that I didn’t internally freak out a little when I hit my shunt bubble with my laptop and felt that sharp hammer connect with my skull would be bull. Of course, I did. Two days later the fear has moved a little further into the background of my thoughts and by next week, it will be back to its hibernating state, keeping me smart without making me anxious.
I can’t wait!
Links on VP Shunts:
Holy cow!!! And I thought I was a strong Hydrocephalus patient. But you, you are a survivor. I truly hope there is an end to your surgeries soon. I myself have been the lucky recipient of 3 VP shunts throughout my lifetime. I have never said this to anyone else ever, but I have ONLY had 17 neurosurgeries. I don’t think my shunt bubble was ever as sensitive as yours is, but I think I can relate to your pain in some ways. I know when I bump it wrong, sometimes it feels like an icepick is being stuck into my brain. Other times, it just feels like the back of my head is so bruised that I can’t lay on it or even wear a hat. It’s still that way sometimes, even though my shunt is gone and I have been surgery free now for 14 years. I had an ETV surgery in December 2000 that seemed to fix me for good. I am still on restricted activity somewhat, but I am a very active guy. I basically can’t do anything that involves quick pressure changes, or major head impacts. So I don’t sky dive, bungee jump, deep sea dive, or jump on trampolines. But other than that, bring it on. I’m like you with a high pain tolerance and a will to do things I love, no matter what. I’m training for my first triathlon now.
I haven’t had a “headache” as you and I know it, since 2000. My ETV is doing it’s job, keeping the CSF flowing smoothly and keeping my ventricles small. I have never heard of Slit Ventricle Syndrome until now, but it is very interesting to me. I can relate to the internal brain pain you talk about when there is a shunt malfunction, but I can’t imagine the time tables you have to work under. When I had a malfunction, it could be a day before I figured it out. I would tell my mom I had a headache, but it wasn’t until the next day when she could tell it was more of my brain pushing out rather than a typical headache where it feels like your head it being squeezed in from the outside. I always tell people to imagine your worst pressure headache, where it feels like your head is in a vice. Then imagine that that vice is a balloon on the inside of your brain, and it is being blown up from inside your head, pushing your brain out and against your skull. I am not sure they can imagine that in a way that would make them understand the pain, but that’s my best description.
I hope the best for you look forward to hearing about your progress. Take care and keep that head safe from harm.
You did an excellent job of capturing the pain and I have no doubt you understand it. I think anyone who has experienced a malfunctioning shunt as we know it understands. When I was growing up, my teachers would not be very impressed when my shunt broke at school. I hated how they wrote it off as “just a headache” when it is so much more. Your description is the best I have heard from others with hydrocephalus, including myself. I would stick with “worst pressure headache ever” or by my late teens I referred to it as several sledgehammers or a train trying to burst through my skull. I like your description much better.
We are very similar in that I also cannot do hats (or any headwear for that matter) but I am still very active. With my sensitivity, I cannot put my head upside down for any reason (not even to dive into a pool or do a somersault), but so long as I listen follow those rules and I don’t lay on my right side, I am fine. Like you, I am very active; walking is my stress reliever much like driving is for some, so I am always walking haha. I also am sensitive to pressurization changes. My husband has a list of aircraft that are best for people with hydrocephalus because of how well they pressurize the cabins. Basically most turbo craft planes are not so great. I am sure you already I know what works for you, but I would be happy to send you what he knows, for your future travels.
In some ways I am very lucky I am so shunt dependent because of that limited time window. But, having such a short window to get it fixed also means I am not in pain for as long as the people who need to figure out if it is that kind of headache. I am usually in recovery within twelve hours of the onset of symptoms because my dependency is what it is. I am happy for that. It can be scary, more for my husband than for me, when it breaks, but usually it is traveling that bothers me because my surgeon knows me and with my condition, I worry about a strange surgeon knowing what to do and how quickly to do it.
I am very glad your ETV is doing its job and you have been in the clear for fourteen years (that is cause for serious celebration). Good luck on your first triathlon and thanks for the comment.