I try to carefully explain Scott’s second surgery to fix his “pseudomengingocele.”
st. louis
Here is a video from after the surgery. We had been in ICU for about 30 minutes or an hour (Time moves differently after a surgery sitting around a hospital).
I wanted to say “hi,” and not just type it. So I coerced Carrie into holding my iPhone and making this video.
And I want to thank the many people who have supported us along the way:
Last night was not so easy. My roommate is in his 70’s or early 80’s and turned his tv on by evening. Oh my goodness it was blasting. I had already asked to move rooms because of a noisy roommate and was determined not to have to again. I asked for earplugs and arranged for my medicine to be well-timed. My roommate turned off the tv at bedtime and I….couldn’t sleep. I had earplugs. I had drugs. I had an adjustable bed with plenty of pillows and blankets, but I didn’t have sleep. Oh, I’ve slept for a few hours here and there, but it wasn’t deep restful sleep. Then this morning my roommate called for help as he had messed himself. They did the neurological tests where they ask his name, birthdate, where he is at, etc. it was a new person asking him and they didn’t seem concerned, but I’d been listening all day and his answers were a lot slower and he covered with humor, but he had to think for a long time on somethings. In fact, he got the year and days backwards on his birthdate before quickly correcting himself.
I don’t know if it was the right thing to do, but I went against doctors orders and got up and walked on my own to the nurses station so I could tell them. They came and spent time with him and I pray all is well, but I think they are going to keep a closer eye on him. I think that it is important to have an advocate with you in the hospital.
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| image found at: http://www.epmonthly.com/whitecoat/2010/05/florida-verdict-threatens-ems-availability/ambulance-2/ |
Hmmm. So where did I leave off? Ah, I told you all about getting sick on Saturday and getting to the Pontiac Hospital. I was feeling a little stupid, you know, expecting the doctors to say, again: “This is all normal, take some tylenol and go home.” My wife later said it’s like going to the mechanic and having the rattle stop once the mechanic is there to listen. Well, as most of you now know, it wasn’t business as usual. The radiologist told us it looked like bleeding in my brain from the original surgery and they wanted to transfer us to St. Joseph’s in bloomington. Luckily my wife was not satisfied about the transfer. For me, I would have done anything I was told I was so goofy from the morphine, but my wife was on top of things. She was confused why they would transfer me to bloomington and not to the doctors I knew already and the facility where I’d already had brain surgery. Well, for those of you who have not yet met my wife, she is never afraid to speak her mind. She told the doctor that we would just wait until he had contacted the surgeon’s office in St. Louis. I’m sure my wife felt elation when he walked back into the room looking a little defeated and said, “the doctors want you transferred back to Barnes.”
At first we were told the transfer would be within the next hour or so…so Carried stayed by my bed from 2-4am. Finally they told us that they were out of ambulances and drivers and that it would be 7am, so Carrie went home and got some sleep…at least I thought she did.
She was so worried about Sunday morning going well, that she secretly went to Chenoa an
worked on Sunday morning stuff and prepared for worship for several more hours, since I had kept her from doing any work during most of this past week. She is a loyal and conscientious worker.
The ambulance got to the hospital around 7:45 and we were piled in and headed to St. Louis by 8am. It was really a pretty comfortable ride (morphine and anti-nausea meds help with that, though). Most importantly, the paramedic and driver were excellent and really went above-and-beyond to make us comfortable, give us internet access (yes, amazing, right?) and to provide excellent medical care.
Since we’ve been at Barnes-Jewish (we got here around 11am or so Sunday morning) it has basically been a waiting game. I mean, this situation was unscripted and this hospital visit was unplanned so they had to slip me in front of other people for the MRI and bounce me around rooms a bit before things were satisfactory.
We saw a neuro-surgeon resident who was on-call this weekend who was exceptionally helpful, very thorough, and really paid attention to my situation. Oh, and he really seemed very knowledgeable. He came by the room in the early-to-mid afternoon and talked to us about the CT scan that was taken in Pontiac. He wasn’t convinced there was any new bleeding, but certainly there was spinal fluid leaking and…the best way to describe it would be a ‘pressure problem.’ If spinal fluid is leaking out from the skull, there isn’t enough in the skull, so my headaches and my pain was from the pressure being ‘out of whack.’
He also helped me to understand my headaches. I explained my different head pain and headaches and I told them that sometimes it shot from the back of my head to the front. He told us that the C2 (not sure that’s right) nerves or nerve bundle (or something) arch up from where my surgery was done to the front of my head and that was causing some of the headaches I had been experiencing. Gosh, it was just great to know that they believed my pain and that I wasn’t crazy. Okay, so this isn’t definitive proof of my craziness. My brand of crazy comes from somewhere else, though 🙂
The MRI wasn’t able to happen until 6:30 pm or so on Sunday night. They wouldn’t knock me out and it took about 45 minutes. I’ve never had trouble with MRIs before, but I thought about that bump on my head and the nausea I felt and I told them I didn’t think I could do it without being knocked out. They were moving me onto the MRI when I looked up with big sad eyes and said, “Oh, so I guess the doctor didn’t approve for me to get knocked out for this. The Radiologist’s only response was a slow, sad head shake.
Well, it was long and painful, but not intolerable. They didn’t even have to re-do any of it. I rocked out that MRI…yeah. And then we waited for results.
I hadn’t kept any food or water down since Friday evening at dinner and this was Sunday night, so I was hungry. No, I was famished. I’m a Carnes and we should come with a label, “Dangerous When Hungry.” Well, they didn’t want me to eat until they knew for sure that I wouldn’t need surgery until Monday. They said it was unlikely, but if there was an infection I might need immediate surgery and they didn’t want me to eat in that case.
I’m a reasonable guy (when I’m not hungry) and I understood that it would be a while before we got MRI results, but it took several hours and then the nurse came in at 10 pm (or so) and said that we probably wouldn’t hear any more until Monday morning. You should have seen the look of despair in my eyes. I explained how I had not eaten in days and how I’d been promised food before bed, so long as there was no emergency surgery. The nurse took pity on me and, despite orders, gave me a few ice chips.
Oh, that ice and water were exquisite! I mean, that water tasted better than the best wine. OooOOohhhhh, soooo good!
Well, that gets me to Sunday night and you nearing know as much as we do so far.
My journey to where I am today began way back last summer. My mother was diagnosed with an acoustic neuroma which is a tumor of the ear that had grown into her brain (example, left). She underwent brain surgery last May and Drs. Benecke and Polinsky did wonderfully. The problem is that I was experiencing symptoms like hers. My wife and I became concerned and I finally went to see a doctor. I shuffled from one specialist to another until an MRI was scheduled. On December 2 at about 8 am I met with Dr. Kelly (a Ear, Nose, Throat Surgeon) who looked at my MRI and said, “it’s all clear.”
Well, we went on with our day. We had plans to meet my parents in Peoria for a Transiberian Orchestra Concert and by 3:45 pm we were arriving to pick them up for our fated evening. Unfortunately as we neared the parking lot to meet my parents I received a call from Dr. Kelly’s office. On the other end of the phone a stalled voice instructed me, “Could you please hold for Dr. Kelly?”
Dr. Thomas Kelly was calling me to explain that after reviewing the full MRI (not just the ear canals) and the full radiologists’ report, it was obvious that I had a mass in my cerebellum and needed to meet with a Neurologist at my soonest convenience.
Unfortunately it was 4pm on a Friday afternoon, so you can imagine that WebMD, Wikipedia, and our imaginations wrecked havoc upon us for the remainder of that weekend. Over dinner, after the concert and a lovely night with my parents we shared with them what little we knew and, now, the rest is -as they say- history.
Over those next weeks of December we continued to meet with my primary care doctor, neurologists, neuro-surgeons, and other specialists and began to better understand what exactly we were facing (well, we didn’t know what we were facing, but they were able to help us assemble a roadmap and plan the battle).
Now, we worked with an array of phenomenal doctors and staffs. I don’t know that I could pick a favorite or a best: for one thing, they all have their own areas of expertise… but I want to take a moment to testify about Dr. Fang Li of McClean County Neurology. She was quick to bring us opinions beyond her own, she was clear and direct, she spoke to us as adults and educated us along the way….and she was never afraid to say, “I don’t know, but I’ll find someone who does.” If you live in Central Illinois and need to spend some time with a neurologist, I highly suggest that you try to get in with Dr. Fang Li.
The only negative experiences we really had were indirectly related to our insurance. The United Methodist Church provides us with excellent insurance and when we would call the insurance company we never had any direct problems, but every doctor and nurse we spoke with would say things like, “Insurance won’t cover that,” or “your insurance won’t let you go there,” or “insurance can’t approve what you’re asking.” It turned out that these were all falsehoods for us, but we realized that there is a very real reason that doctors would say these things: these statements are far too often true.
These last few weeks have made us feel exceptionally fortunate for our insurance, our jobs and our supportive churches; but these last few weeks have opened up our eyes to the deep trouble our society has surrounding healthcare and the way patients are treated in the midst of troubles.
Enough of that. I don’t want to get all negative and cynical, especially in regards to something I can do little-to-nothing about, right now.
As Ray Owens left on vacation for a few weeks and I was trying to ‘hold down the fort’ for a few weeks at the Pontiac Church I finally got the call from Barnes-Jewish Hospital that it was time to come down for a consultation.
On January 19 I met Dr. Dacey who is Chairperson of Neurological Surgery and Co-Chair of the Department of Neurology and Neurological Surgery for the Washington University School of Medicine. He is, incidently (not to ruin the end of the story, I hope), the man who would eventually (and successfully) remove that tumor from my cerebellum.
One more important thing for you all to understand about my relationship with Dr. Dacey. It failed. I had the goal of making this very serious and buttoned-down neuro-god laugh. I was just sure that I could do it. I made jokes about “diddling interns in closets” (Grey’s anatomy) and my sister-in-law even asked if he had to wear a diaper during surgery, since it was a 10 hour procedure….but through it all, through each attempt, Dr. Dacey held firm and remained stoic and professional.
By the way, if that was the choice to make: between stoic and professional or jovial and silly. Well, I’m happy that I got the right guy!
One of the most exciting things which we learned from Dr. Dacey about this surgery (at least, the most exciting for a technophile like me) was that they would be using the latest in technology. (Carrie, my wife, likes to tell people that Dr. Dacey and his team just put it on autopilot and didn’t do anything else…but we know that isn’t true, don’t we, Dr. Dacey!?!)
First of all, On Sunday, February 5 Barnes-Jewish did a special MRI of my head using -what Carrie and I have termed “cyborg lifesavers.” The nurse had told us that we could have a nice dinner the night before the surgery so we made plans for Sunday night at a Bob & June’s fancy country club (Sunset at Gravois & 270). So it was a surprise when we went in for the MRI Sunday afternoon (before dinner)… they started shaving parts of my head. Then they went on to tell me to be careful because my “cyborg lifesavers” must remain in place until the end of my surgery the next day.
Needless to say, there were a lot of strange looks that night as people walked past us at Sunset Country Club… Well, the lifesavers stayed on. We enjoyed a great dinner with my in-laws, my parents, my wife, sister-in-law and sister! I looked like hell, but I enjoyed myself. Oh- and I didn’t care what other people thought about my alien-like appearance.
I don’t remember much about the surgery on Monday. Mostly that is because I was unconscious, but also, no one has really told me much about what happened. I know what was supposed to happen:
That special MRI which mapped my head got loaded into the computer / microscopes and then Dr. Dacey and his team could see what they were doing inside of my head with their fancy probes and tools. Pretty cool, huh? The surgery seemed to go pretty well and it might have even gotten finished in the 4-6 hours they had estimated, except that it turned out their machines worked perfectly and there was a little more to done, in the end.
Barnes-Jewish has this really cool new MRI right in the neuro-operating room called an Intraoperative MRI. While I am still ‘knocked out’ and on the table. You know, while it is still (relatively) easy for them to go back in and do more work on me, they run an MRI right in the operating room. With those funky cyborg spots all over me and with all of their computer technology they can see if there is anything they missed, if there are any other spots, if there is any unexpected bleeding, swelling, etc. How cool, right?
Turns out there was some tissue that they hadn’t gotten the first time around, so they went back in and continued the surgery in order to make sure that they got all of the tumor.
I have to tell you all, from the first doctor’s visit I had last summer, to this fancy equipment, to the expertise of my neuro-surgeon- I feel blessed –and not just a little bit lucky.
My primary doctor might have fooled around for two years. The doctors might have put off the MRI, or I might have ended up at a hospital where they don’t have the intraoperative MRI technology yet (and could have left part of the tumor). I mean, when one thinks of all the variables. When one imagines all of the possibilities: it is staggering.
After 10 hours face down on a table my face was swollen. After having my skull pinned into a halo device, I was sore and had bumps all over my head. After such a long surgery and with staples running down my head and spine…I was incredibly sore and tired. But do you know what? I am blessed beyond belief. There is absolutely no question about it. Through all I have endured these last few weeks, I know that I am a man of many blessings. I have a family who has stood by me; I have churches and pastors who sat with my friends and family, who sent me greetings, love and prayers; and I have in-laws who have graciously opened up their house, not just to me, but to a Shriner patient and her families over these past months to ensure that all in need would be cared for.
Sometimes we need to settle accounts. You know, put things in place: make sure our debts are paid, our actions have come together: We have to make sure that our checking account balances out. I wanted to give an “full update” from this past week, but I realized that with a week like this one, a summary of “goings-ons” just doesn’t do justice to the past days.
If you’ve been watching my videos, well, then you know there are countless people to thank and far too many “accounts to settle for this blog entry to ever end. I won’t even try.
I do want to make a couple of special thank yous for some people who provided special support to me and my family over these past weeks. First of all, Rev. John McIntosh has been not just a pastor to me and my family, but is now a friend and clergy-colleague to my wife and I. He was selflessly willing to take time away from a very important Clergy Covenant Session in order to sit with my family the day of my surgery and provide pastoral support and friendship to my family in one of our greatest moments of need. Rev. Stephanie Lendt is one of the pastors at Bob and June’s (my in-laws) church and, she too, made herself available throughout the day in order to provide support to the Berry family as they waited through that very tough day.
Now there are many other friends, colleagues, and family who stopped in, including my District Superintedent, Leah Pogemiller; directing pastor, Rev. Dr. Ray Owens and his wife; and Greg Weeks the Sr. Pastor of Manchester UMC. There were many people who came by during those next few days, but there was one group who really went above and beyond and I must name them especially. Upon hearing of my ordeal and finding out that I was at Barnes-Jewish in Saint Louis, Rev. Ed Hoke, Rev. Dr. Victor Long, and Rev. Jim Barnett rushed from Dallas, TX. Yes, that is right: Dallas! to be at my bedside (it is unclear, they may have been on their ‘way through,’ but let’s make sure to make them sound SUPER heroic). Upon hearing of my compromised state, Ed, Victor and Jim jumped into the car and sped through the South until they landed at my door. Ladies and Gentlemen: That is love, that is friendship. (That is also probably a load of crap, but I’ll leave that for you to investigate)
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| I was high on narcotics at the time, but this is what Ed, Jim & Victor looked like when they showed up at Barnes Jewish! |
This has been a crazy few weeks and I’m sure you are wondering if I’ll soon be done rambling about it. In part, that’s why I’m trying to get this all out of the way with one massive “update,” but you also need to understand that these past weeks have had such an impact: positive in many ways, that you are still sure to hear much more about my weeks of sickness and God’s triumph in my renewed health. On the one hand: I’m sorry and I hope I don’t wear you out. On the other hand: sit down, shut up and read about my experience. I had a brain tumor so I get to be verbose!
For now, goodnight. I’ve eaten the last of the Oreo cookies and the milk is nearly depleted (Bob, I know how you like it when just one thing is left in a package, so I left the very last oreo cookie just for you).