Recap: The Story So Far...

the lumbar drain in Scott's back.

I’m exhausted, but I’m feeling pretty well right now, tonight.  I thought I would blog a bit and, as I looked back, I realized that I’ve never actually told “the story” of what’s been happening, really, since getting to St. Louis.

So, first recap of my last surgery:

I had a benign (didn’t know that for sure till it came out) tumor in my cerebellum.  They came in from my neck; cut my neck muscles away and held them away from my body; and cut out a piece of my skull.  They next opened up the dura (sp?) which is the membrane around the brain and then used probes to go into my cerebellum and resect the tumor which was in the left hemisphere of the cerebellum kind of near to my spine.  Then they closed the dura and skull (which I don’t remember how they explained it, except we now know they use titanium screws to put the skull back and once everything was put back into place they used staples to close the incision which was several inches up the back of my neck.

Now, I recovered pretty quickly for the first few weeks and then had setbacks with a couple bouts with -what we thought was- flu.  Even after the flu, I felt as though I had progressed, but starting about two weeks [before I ended up back in the hospital] I began having more bad days than good.  We’d always had bad days and good days, so, until we had the benefit of hindsight, we didn’t realize things were actually getting worse.

Well, they were.  During the week before I went into the ER I had only bad days and ended up nauseous often.  Wednesday before I went the ER I woke up throwing up at 5 am and didn’t stop until noon, but by noon I finally got relief and slept the rest of the day.  Thursday and Friday were miserable and I still had migraines, but I wasn’t throwing up and we had called the doctors, none of which thought this was necessarily unusual after brain surgery...

But on Saturday I woke up vomiting in the early morning hours, had the worst migraines I’d ever had and it wouldn’t stop and probably wouldn’t have.  We called my surgeons around 11 or maybe 1 and they said if it persisted to go to the ER, so around 4pm we headed to St. James OSF Emergency Room.  They were very good with us.  You can read that account in DAY 1 - The ER In Pontiac

Once we got to St. Louis and were working with neurosurgeons and not just an ER doc, we were still afraid that they would look at us and say, “Um, you just had brain surgery, there’s nothing abnormal, go home and take some tylenol.”  Are you seeing a pattern?  And by the way I hadn’t been able to keep water down since Friday night and had eaten nothing since then either.    They looked at the CT’s from Pontiac and the on-call Neurosurgeon asked us some questions and let us tell the story of how we got there (and listened to our questions, anxieties and fears) and then explained it probably was not a fresh brain bleed like Pontiac thought it was, but there was definitely some fluid and if fluid was flowing in and out of dura/skull around the surgical site, there probably was some bleeding as a by-product of this activity.  The migraines, then, were being caused (and then getting better briefly) when that spinal fluid would leak out of the brain membrane and skull out under my skin.  The brain, then, didn’t have enough spinal fluid pressure and I’d have migraine and then my brain would produce spinal fluid to compensate, but with more pressure that would all leak out and form large pockets of fluid outside the brain and it would happen all over.  He also explained where my other headaches (which I had described) were coming from (with detail) and explained that they wanted to do a surgery to correct the structure of the brain where they had done the surgery in order to make sure the spinal fluid was draining from the gland that makes it, down through the brain as it is supposed to.  He used the metaphor of a kitchen sink.  If you set it running at a certain speed and have the drain open it will just continue to drain properly, never emptying and never overflowing, but if you stop it up, or somehow open the drain wider, it no longer drains as we want it.  We really thought Dr. Beaumont was just great.  You can see him, later, shaving my head in this video:

So now, I hadn’t eaten since Friday and it was Monday, so that was really the first thing on my mind.  I finally got to eat something!  (On Sunday they wanted to wait until the MRI results were gone-over to make sure I didn’t need emergency surgery that night before they gave me food)  Now, on Monday morning I got to eat breakfast.  It was gross by any normal standards, but when you haven’t eaten in several days, even greasy, rubbery eggs and sausage at the hospital will bring you delight :-)  

Late on Monday morning Dr. Beaumont (that same on-call surgeon) brought in syringes and had me lie down on my side and drained as much of the spinal fluid as he could which had been flowing into other cavities and creating pockets of fluid where we didn’t want them.  It sounds as though he drained a whole lot of bloodly spinal fluid.

I still got to have some nasty lunch and dinner and they explained that my procedure would be on Tuesday, sometime.  My surgeon was out-of-town at a conference, so I was being fit in with Dr. Dowling  (I think he moved / cancelled his own surgeries) to fit me in Tuesday at 1, because he was filling in for Dr. Dacey’s service, in case emergencies like this came up.

The surgery was Tuesday in the early afternoon, but while they expected this leakage had created a bit of damage to the dura as it flowed in and out, they were not prepared for the severity of damage.That spinal fluid had “shredded” the dura all around the incision point.  I guess it was far worse than they thought and they had to put in a lumbar drain which had been “a very remote possibility.”  It wasn’t so bad that they couldn’t put the skull back together (they said there was an even more remote chance they may have to use a wire mesh), thank GOD!!!

The surgery to correct the structural problems [stemming from the original surgery] was really a repeat of the first surgery, except they didn’t have to go through the dura into the brain.  They simply went into the skull, removed it, repaired the dura and then worked backwards repairing structures along the way.

The problem is that, because it was so severe, we could do all this and have all the same trouble, so they needed, in this case, to put in the lumbar drain to keep that from happening.  You see, the brain is capable of producing 30 mL of fluid every hour.  Well, we don’t want too much fluid pressure or it might seep through the incision site again and we’d have the very same problem.

So they open a hole in my lower back, insert a shunt into my spine with a small tube (looked like a small string) coming out and hanging out of the hole.  They they take...   welll, I don’t know, think about a plastic sheet a little thicker than a latex glove material, but the same consistency.  They took a sheet of that and sealed over the whole hole (with the whole in the middle and then they use those sheets to completely cover my lower back so that it formed several layers and then taped all around (an aside:  think about sleeping for days wrapped in plastic wrap.  Not cool.

That small tube sticking out from under the “medical grade,  glued down, ‘plastic wrap’ connected, then, to a hub which then connected to a thicker tube which ran down to a contraption on a pole.  I had to trust the nurses to be attentive and drain only 10 mL each hour.  There were several valves which had to be carefully turned on and off, but I became very nervous when we asked about the side-effects.  They said it was unlikely, but the possible complications were, if the site became “exposed,” infection; or if too much spinal fluid leaked out there would first be queasiness, then a severe migraine and, finally death. This is what we definitely didn’t want to have happeni!

Well, that gets us through an overview of the first and second, corrective, surgery as well as some of the complications that could arisel

After the procedure Tuesday I did great and that takes us to my mext blog on the day from hell:  Wednesday!!!