A lumbar puncture tray (the needle is the long one at the top)
I got on a first-name basis with all of the emergency room nurses...as soon as they saw us drive up, they had our paperwork pulled (we had a running tab), ready to go and would usually take us right in. I got to be very proficient at what to do to minimize the pain (it worked better for me to sit up and lean over a rolling cart rather than lie on my side) and if I took a muscle relaxant as we paged the doctor before heading to the emergency room, I would have minimal muscle tension during the tap. (It would also lessen the rebound headache after the tap when there was less fluid and my brain felt kind of like it was just sloshing around.) I was a popular stop on the intern tour when doctor's would bring their interns to look at the Venus pulsations on my optical nerve (or more correctly, no pulsations when I had high pressure and the pulsations returned after I was drained.) For some reason, that was fascinating to them. I also got to be very good at estimating the pressure in my head before the tap. My doctor and I had a running game where I would guess the pressure before he tapped and we would see how close I was. I got to be very good at estimating the pressure before he would drain off the excess fluid.
From August of 1985 to April 1, 1986, I had about 90+ spinal taps (that's a spinal tap every 2.67 days on average). We lost track on the exact number of taps so it was probably more than 90. It was supposed to "correct itself" after 1 and they thought it could still do it. But I remember the day very vividly when I just couldn't take it anymore. It was around the middle of February 1986 and I was walking between classes at Weber State College. I was walking from the business building to the math building and I had a very severe headache. It was snowing heavily and I remember walking out the business building and getting very dizzy. I tried to keep walking thinking it would just go away, but I think I started swaggering up the walk, because people kept asking me if I was OK. I remember hearing voices (kind of like in a bad horror movie where the voices echo and the image is blurry). I made it to a snow covered bench and just collapsed on it. I was able to regain some orientation and I immediately called the doctor and drove myself to the emergency room. It was so upsetting to be so totally out of control. We decided at that point that we needed to do something more permanent. I was scheduled for brain surgery on April 1, 1986 to install a ventriculo-peritoneal shunt.
A Ventriculo-peritoneal shunt
The shunt is a plastic tube that goes from the middle of my brain, out my skull and under the skin down to my rib cage. (It looks very much like a blood vessel under the skin on my neck.) From there it goes down below the rib cage to the peritoneal cavity where the extra fluid drains and is reabsorbed by the body. There is a pressure valve on top of my head that opens up if the pressure gets too high. Theoretically, I can also "pump" it out by pressing on the valve, but that never seems to work very well, or I may just be doing it wrong.
For the most part, it has worked great for the last 23 years. I still get the headaches frequently but usually the shunt is able to take care of it very quickly. (I have to limit reading books or focusing up close since that tends to trigger a headache.) Sometimes, it takes a while for the fluid to drain and I have to deal with a mild headache for a day or two. Sometimes, the draining of the fluid feels like a knife is sticking into my side. At least I know its a temporary thing and I can deal with the discomfort every once in a while. I also have to deal with frequent muscle spasms in my lower back where the repeated taps created scar tissue on the muscle fibers.
It hasn't been easy by any means. There are times I don't feel good at all. But I realize it could be much, much worse and for that I'm very grateful. Going through the spinal tap period was very difficult, but some of my most spiritual experiences happened during that time and I've been able to draw on those experiences at other difficult times in my life. So here's hoping for another trouble-free (relatively) 23+ years!
4 comments:
Happy Anniversary! You know, seeing at all written out brings back a lot of memories of when this was all happening. I remember when you were in the hospital after collasping and when they diagnosed you and I cried and cried because I thought you were a goner. I remember that when you had your surgery I watched the clock all day at school - I was a freshman - and I remember telling one person that you should be out of your brain surgery by then. They looked at me like I was nutso - and I remember think that I hoped you were out of brain surgery. I was too afraid to tell anyone else that day of what was going on for fear I would cry at school. I remember getting home and mom and dad calling to tell me that all had gone well and that I should call Alphagraphics to tell them it had gone well. I called Sue and told her and I was crying as I did. She asked if I was okay and I acted as if all was normal and of course she knew I was a basket case but I was too young to admit it back then. Oh, how glad I was that day (and today) that you were and are alive - blessing us every day!
And what's a little pressure/pain when you can live here with your family - enjoying good times with 4 sisters who never leave you wanting for more drama!
And, you forgot to tell everyone that your doctor shot himself in the head shortly after.
Wowzers. What crazyness, and I never did know exactly how your shunt worked or drained. Pretty fascinating (even though you mentioning something on your head opening to release pressure made me think of you being a train blowing steam out the top of your head when you get mad . . . and that was probably not the intent of this post). But 90 plus spinal taps? Aahh! Another one of those stories that make me thankful we live in these times.
Wow- This all went down when we were in California. I remember not truly understanding what or how severe the situation was. (Remember, that was a LONG time ago when we could only call maybe once a month. Other than that we actually WROTE letters or wrote nothing at all.) One day we get the word that you are having brain surgery...that was so scary. I'm so glad you are better now even with the few things you still have to deal with.
Did you know when I started working at the ER and they were training me to do admissions when you and your situation came up. The said this is how you always do it, well except we had this one kid that came in like every 2 or 3 days for a spinal tap so we had a running tab on him. I knew it was you. I was like a celebrity. Everyone that had worked on you wanted to know how you were and if "it" was working.
I'm glad it's your anniversary. I think you should take the family to Maddox or some where fabulous.
That was quite a time for all of us. So very scary and yet I had a calm feeling that all would work out. The calm feeling left every time you had to go in for another "treatment". So thankful things are as good as they are. You are a great husband, father and son and have been blessed because of it. Love ya - Mom
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