neuro

Health Checks

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Health Checks

Me in the hospital in February 2012 after first neurosurgery.



I suppose everyone has a different experience of the hospital than I do / did, but for me a shift happens at some point during hospitalization. When I was admitted this last time, I was miserable. After surgery, I was hurting really bad. During my first days in a hospital I usually feel as though I need to be there. With this last ER visit and hospitalization, I could only find relief at the hospital and couldn’t imagine going home. As time goes by, though, I begin to feel better and there is finally time when I realize I can go home. A shift happens where my need for the hospital is outweighed by a need to go home.


This time I had so many ‘incidents’ that made me feel bad (like the spinal fluid leaking or migraines) that I didn’t realize how much better I was getting overall! On Saturday the doctor came in and said they were ready to discharge me when I was ready to go. I was shocked. At first I said, “no way.” I mean, I had just had a migraine that morning, but, then, I realized that my pain meds were being reduced, anyway, and there is really very little they can do for the migraines anyway. There was nothing I was getting at the hospital that I couldn’t do at home. It was an odd moment for me and I looked up at the doctor and said, “You know, it seems like it is time to go home after all.” I only wanted to clarify our at home plan for remaining comfortable and healthy.

At my in-law’s home recovering after my first neurosurgery in Feb. 2012



Sometimes it is difficult to recognize our place and what is healthy for us. Whether it is our marriage, a house, a church or organization, or group of friends we can sometimes forget to consider our own health and happiness. I think, especially in marriage, we get comfortable and stop talking to our spouses about healthiness in our relationship(s). Just like in my hospital stay where I constantly evaluated my health and situation with my wife, the nurses & doctors, and with myself; our marriages and other relationships constantly need to have healthy communication and evaluation otherwise we lose track of our health. We wake up one day and realize that we no longer have a healthy reason to stay.


To stay healthy, we can’t just talk about the ‘nice’ things…In the hospital it isn’t easy, at first, to talk about bowel movements or have someone you don’t know help you with a shower; but these difficult conversations are just as important as the easy ones. In marriage, especially, it is easy to just say the “I Love You’s” and forget to talk about the difficult things. Carrie and I try to talk about the difficult things as much as the easy stuff. It sometimes means that we fight. It sometimes means that we get angry or hurt, but, in the end, it always means that we grow in our relationship, know one another more, and have a more solid foundation for the future.


We have to keep an eye on our relationships and we have to constantly evaluate where we are in those relationships and their healthiness.

Thursday Night: Near-Death

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Thursday Night: Near-Death

This is the dressing and where the lumbar drain enters my spine.
You can also see a white (and red) safety valve just below my waist.


Before I tell this story I want to catch-up anyone who hasn’t been reading along in this blog.  At this point I had a lumbar drain in my back so that they could keep the pressure from building in my brain.  They were draining off 10 mL of spinal fluid every hour, but this is dangerous.  If something happens that too much fluid drains I could get sick, have migraines or die, if I lost too much.  Also, as you read in the last post, infection is a very big concern when they keep a hole open in your spine, so I have been nervous ever since my surgery.  My nightmare night-after-night had been that the nurse had left my drain open or it had come loose and I was dying!
Alright, so now with the story:
On Thursday evening my wife went for dinner with her sister and I was sitting in bed with my iPad and decided to check facebook, twitter, email, etc.  Since I was having some trouble with diarrhea because of the antibiotics and the many laxatives they had me on (to combat the pain meds) I asked the nurse to put an absorbent pad back on my bed.
Now, if you are laughing at me a little you have to understand that, at this point, I have two sets of monitors hooked to me, sequentials on my legs, a very important tube connecting my lumbar drain in my back to that machine, and, often, an IV.  Also, I’m a fall risk so I’m not supposed to move without someone helping me…and it sometimes takes a few minutes before anyone answers my call button (let alone how long it takes them to unhook me and get me to the bathroom).  So having bathroom troubles isn’t an easy thing.  It was very likely that I was going to leave a pretty big mess.
Back to my original story:  The nurse put a pad on my bed, but I’m tall and it wasn’t positioned quite right, so I remember sitting in bed and scooting about (the nurse supervised) and I pulled the pad up under me.  I worry that I might have unintentionally and unknowingly pulled something loose at that point, but we’ll never know.  The nurse left and would come back later with my meds.  I remained in the same position checking facebook on my iPad.  When the nurse came back with meds about 30 or 45 minutes later I was having a queasy stomach and felt a migraine coming on.  It should have hit me then that something was amiss.  I told my nurse that I had an unset stomach and a migraine coming on.  My nurse left and later, I’m not sure how much later it was, (I was having a major migraine by then) I felt something wet behind me.  I put down my hand into a bed full of spinal fluid.  It still took a moment for me to realize what was happening.  I looked down to see what had spilled and couldn’t find the tube for my lumbar drain.  Once it hit me, I was utterly terrified by what I was experiencing.
I pressed the call button immediately and tried to turn up on my side the way I had lay the other night when he re-did my dressing.  Luckily the unit secretary answered the call right away and I called out that my spinal fluid was leaking out.  I don’t know how she made sense of what I was saying, nor do I know how my nurse, Sean, made it to my bedside so quickly, but it was his quick thinking and steady hands that were able to pull the bandage away and find a tube to clamp off.
The nurse came back and told me he had paged the surgeon and he waited, pacing (and freaking out a little), with me in the fetal position and blanket over my head (trying to keep dark because of the migraine I was suffering).  There were many nurses and others (interns?) in my room by now.  I could reach my phone so I called carrie to tell her that she should come right away.  I lay there and finally worked up the courage to ask the question I needed so badly to ask, “If I lost too much spinal fluid to survive, would we know it already or will we find out later?”  One of the nurses replied, “I don’t know, we need to wait for the doctor.  The surgeon arrived and explained that to help alleviate my migraine I need only to be laid out flat.  The migraine subsided a bit as he raised the bed to table height.  I told him I’d just had work done on the dressing the night before and he responded that he was the one who had done it.  I told him, “Then, doctor, you have seen my ass two times more than I would like!”  (Which did illicit laughter from him and the rest of the room)
He said that I am young and healthy and since I was still alive and conscious I would likely be alright.  He later told Carrie that if I were elderly or obese or otherwise in poor health I would have likely died from loosing so much spinal fluid.
So, as be began to work on me, my wife arrives on the floor.  I know this because I could hear her voice raising as she tried to get past the nurses.  To Carrie’s chagrin the room was already sterilized and they would not let her in.

I laughed a little and told the surgeon to watch out.  I explained that Carrie, if she feels I was in danger and he was keeping her away from me…I explained that she would probably let him have it.  After a moment of silence I said, “but don’t worry, I’ll remind her that you and this nurse just saved the life of the man she loves.”
As Carrie continued to try to get in, the surgeon leans over and says to me, “That is true love.  We have a hospital full of people who don’t have visitors, but you have someone fighting to be with you and to advocate for you.”

Had I been older or in worse shape, had I not realized the fluid was leaking out, had my nurse not been so quick…had the night not gone just as it did, I might not have survived that night.  The recurring nightmare I’d been having all week came true, but because of an excellent nurse and just a short time later an excellent surgeon, I was put back together and my wife and I were able to see one another again.  By the time the surgeon finished it was well after 1:00am.  Carrie, again, stayed the night.  I mean, it really wasn’t a choice, at that point.  I don’t think anything could have moved Carrie out of that room that night.

Wednesday: Exposed!

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Wednesday: Exposed!
So, Wednesday evening I was introduced to my new nurses and was settling into my space (my wife was actually the one doing the ‘settling,’ I was doing the ordering).  Finally my wife left to go to her parent’s house and get some sleep and I laid back and fell off to sleep.  I woke up needing the restroom, so I sat up on the edge of the bed and got ahold of my urinal.  Something didn’t feel right though, when I pulled up out of bed.  I put my hand behind me to feel the lumbar drain and I felt a string (It was later confirmed that this was the smaller tube from the lumbar drain that should have been under the plastic dressing).  I called for the nurse. 
Now, before I explain what happened, I have to tell you that, every since the surgery I had been paranoid about that lumbar drain.  Every 5 minutes I was asking the nurse to check that the drains were turned off or that the dressing was alright and not leaking.  I think most people can understand how I would be a little paranoid about this thing I didn’t expect, didn’t want, and this thing that can kill you…
So, back to the story!  I called the nurse and said the lumbar drain dressing didn’t feel right.  She said, “I’ve found someone more OCD than me, I think!”  I said, “Yes, but will you please look at it?”  Of course she was glad to look at it  and came around behind me with her little light…  She ended up leaning in really closely to the dressing, because I could nearly feel her breath on my back and from back behind me she quietly said, “I need you to stay very still and I’m going to call the on-call surgeon.”  I asked if everything was okay and she said that she didn’t know, but she didn’t think I was in any danger if I just stay still.  She hustled out of the room and I could reach my phone so I called Carrie and told her something was up.  She didn’t arrive until everything was finished.


It was a very simple procedure.  The surgeon did a great job simply re-dressing and re-sterilized everything and since we became aware, right away, that it was exposed I was never in any serious or imminent danger.  Once everything was sterile and under a plastic dressing again, I was ready to go back to sleep.


Carrie stayed at the hospital the rest of the night, since it was after 2:00 a.m. by then!



Recap: The Story So Far…

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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!!!


Remembering Surgery

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Remembering Surgery
image found at: http://www.lavidarollercoaster.com/2011/01/waking-up-from-anesthesia.html

The last time I had surgery, in February, the anethesia had some weird effects, if you follow our blog you may remember some of them. The biggest thing was that when I work up from surgery I thought it was the night before (surgery) so I thought my wife should be there and that I was at my in-laws. I started asking strangers where my wife was and became agitated and yelled for her. I was also hot and began trying to tear off whatever bedding they had on me and pulling off my gown.

I don’t remember any of this, just vague recollections…so I’ll pretend (in my own head) that it was just a dream.

Once I had been awake for a while I could remember more, but just back until I checked in at the surgical waiting room. But clearly I lost a few hours on either side of my surgery. It was completely different this time. Expecting that I wouldn’t remember anything, I made videos while I was in pre-op to make sure I would remember something of the experience.

After the first surgery I thought that, in a way, it was cool that I lost those hours before surgery because all the anxiety, all the worry, all the doubt that I must have been feeling (that sour feeling in the pit of your stomach before you’re about to do something you don’t want to do) are forgotten. I mean, if I don’t remember those feelings they can’t be real to me, right?  Who wants to remember the bad parts????

Well, this surgery was different because I sure do remember everything. Yup. Nearly everything!  I remember the ride to the OR in my bed. I remember my wife sitting with me. I remember saying goodbye to her as we wheeled away. I remember making jokes (i’m sure they were bad/cheesy) with the Surgical Team as I was being positioned in the OR.

Had I just had the videos to remember that hour, I could control the memory and make it just as happy as I wanted it to be…but I would have missed all the moments I mentioned. Pre-op time would have been a recollection of me, the way I wanted it, but memory works differently. I don’t see me in the memory, I experience my wife, doctors, nurses and staff. I experience my father-in-law, Bob, stopping by incidently to bring something to carrie.  I would have missed the teary goodbye with my wife.

image found at: http://www.familypromiseofmc.org/family-promise-snapshot-of-2011-in-review/

I want to suggest that memories aren’t just in the photos of our albums or the videos in that box in the basement. Now don’t get me wrong, those are great and they trigger memory, but that’s all they are. Often, too, these triggers are just the happy moments, the smiles and laughs rather than the crying and frowns. But our experiences are more than just the laughs, our experience / our being / our relationships are also in the tears.

Sometimes, especially in contemporary times and in Western culture we try to only remember the good times, but we do a disservice to ourselves, our experiences, and our loved ones when we don’t honor the whole experience of life.  We must strive not just to be shallow and live in a small spectrum of our relationships, experiences, and memories… we must be whole and complete.

I suggest that we can experience more of life, get more from our relationships and find greater fulfillment when we open ourselves to the laughter and tears; the smiles and the frowns; the joy and the sorrow.

May you find wholeness this week, wherever you are!

Up-close and Sort of Personal: the Pathologist’s Report

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Up-close and Sort of Personal: the Pathologist’s Report
View of a Pilocytic Astrocytoma

The past few weeks, Scott has been doing a great deal of blogging but I have been sort of MIA. I’ve felt like I was so busy running from one task to the other that when I sat down; well, I just wanted to sit. This morning I realized that my blogging was not the only thing over due, we had also failed to share with many of you about Scott’s doctor’s appointment Tuesday at which we got the results from the pathologists examination of Scott’s tumor. Now, Scott is convinced that blogging should be relational and emotive in content rather than informational, so I’m giving all of you the warning that this blog is most likely going to be more informational in content as I want to explain to you how the visit went and what the doctor said, answering as many questions as I can along the way. Later, when I have some more time perhaps I’ll share something more relational with you all 😉

Anyway, as I said, Tuesday Scott and I went to meet with Dr. Dacey to get his staples out and for a follow up. Dacey was very pleased with how well Scott was doing (of which I had no doubt); he did his whole battery of fancy neurological tests: walking in a straight line, running your foot from your knee to your ankle, touching your finger to your nose and then the doctors finger, standing with you eyes closed ect. Scott passed them all, and Dr. Dacey declared that he saw no neurological effects from the surgery, which means that his brain seems to be working just like it should be.

Dacey then went over the reports from the pathologist. The short story is that he thinks that Scott had a benign Pilocytic astrocytoma and that he needs to get MRIs in the future but nothing else. We are very happy, that is good news.

 If however, you want to know more about what that all means, here is the long story:

When we first met with Dr. Dacey a couple of months ago, he said that he thought that this was most likely a slow growing glioma. A glioma is any tumor that grows from the glial cells, which are one of the types of cells in the brain. Glial cells make up the non-neurological parts of the brain. That is, they do not transmit information but give structure and support to the brain so that it can do everything that the brain does. For more on gliomas. Now, where it gets kind of confusing is that there are  many different types of gliomas.  It’s like the soup aisle at the grocery store.  If I just asked Scott to go pick up some ‘soup,’ who knows what I’d get back from County Market! Just as we know what kind of soup we’re eating because of what we find in the soup, so too do doctors categorize tumors based on what makes up the tumor (ie. the types of cell, structure and how quickly it seems to be growing).

After they removed Scott’s tumor, they sent it to the pathologist, a type of doctor who cuts up the tumor, and studies it under a microscope. The pathologist concluded that the tumor is what is called an Astrocytoma, a type of glioma. (Of course there are many different kinds of astrocytomas just as there are different kinds of chicken soup.) So we will continue to get more specific as we progress-o. These are the tumors that grow along a type of glial cell called astrocytes. Astrocytes got their name because they look like stars. They are most commonly found in the cerebellum (the area of the brain where Scott’s tumor was and in the spinal cord). Astrocytes support, or keep alive cells that line blood vessels in the brain). Though there are many different kinds of astocytomas, the good news is they do not typically spread out side of the brain, meaning they don’t usually metastasis causing tumors in other organs. For more on astrocytomas.

An Astrocyte
Dr. Dacey and the pathologist think that Scott’s tumor was what they call a Pilocytic astrocytoma. For more on pilocytic astrocytomas.  This is one of the slowest growing of the astrocytomas, which means that of all the different kinds of brain tumors Scott could have had, this is one of the better ones. (We lucked out). These are usually considered benign (non-cancerous). The biggest concern with these is that they can become large, causing damage and problems. We were lucky because we found this before it caused symptoms and real damage. It was small, remember we found this accidentally. Because of all of this, and because of Scott’s age, Dr. Dacey is of the mindset that there is nothing more we need to do; he does not think that Scott needs any radiation or anything of that sort.

Now, when the pathologist was looking at Scott’s tumor, it looked a little different than most pilocytic astrocytomas. There is a kind of fiber they normally find in these tumors called Rosenthal fibers, and his tumor did not have many of them. Now of course when they classify tumors, this is not always as much an exact science as we like to think, just as sometimes its hard to tell the difference between chicken noodle soup and chicken and dumpling soup (one can morph into the other as its noodles become bigger). Dr. Dacey did not seem concerned about this, but he did say that he would present this to his tumor board. So, he will take all of these findings and discuss them with all the other doctors in his department to make sure that they are all in agreement. This means, that rather than getting a second opinion, we will get 10 opinions all working together. When we have our next appointment with Dr. Dacey he will tell us how this discussion went. Scott will also have another MRI in 6 months and then most likely every year after. This is all very good news for us.