Tuesday, August 04, 2020

Adventures in cerebrospinal fluid leakage: part 5

Part 5 in a series about my wife's spontaneous cerebrospinal fluid leak condition. See part 1, part 2, part 3, part 4.

TL;DR  My wife's central nervous system (CNS) spontaneously sprang a leak two years ago. Nobody knows why. Too little pressure in the CNS causes a raft of persistent problems, including nasty head pain that never goes away, hearing problems, mental fog, etc. We have been on the hunt for successful treatment since then, with some successes and a lot of failures.  

We are almost two years into this interesting and expensive adventure. We have learned a lot about CSF leaks and how to treat them. Professional resources have independently confirmed that the CSF Expert Team at Cedars Sinai Hospital in Los Angeles is the world's best for this condition. As reported in earlier posts, this team and facility just happened to be preferred providers on our insurance. So the fact that we can use their services seems like something of a miracle.

My wife has been treated by this team four times over the past year. She has been helped, but she still has continual CSF leak problems. She constantly has a headache that can only partially be alleviated by taking caffeine and by lying down. She has developed hearing disparity and occasional mental fog. This is certainly survivable, but it seriously impacts life quality.

As mentioned in a note at the end of part 4, the imaging and blood patch procedures my wife had in February ended up improving her condition only temporarily. We later learned that during our stay in Los Angeles, COVID-19 was spreading rapidly through the area, although nobody realized this until a few weeks later. Fortunately, we escaped without contracting the virus.

In June we returned to Cedars Sinai for a fibrin glue patch. It's essentially the same thing as an epidural blood patch, but using fibrin glue instead of the patient's own blood. Fibrin glue is a product that is made from the stickiest part of human blood. They hadn't found noticeable leaks during two digital subtraction myelograms (aka DSM) during our February visit, so specialists surmised that any leak would be small enough for an epidural blood patch to be effective. That turned out not to be the case.

Conditions in Los Angeles were bizarrely different when we returned in June. Due to the pandemic, many are understandably reluctant to stay in hotels or Airbnbs, but we figured it was an acceptable risk. The Airbnb apartment we rented was just fine. It was within walking distance of the hospital. But the area, which had been crazily busy during our previous three visits, seemed like a ghost town in comparison.

Many businesses were boarded up, although some businesses were taking plywood off their store fronts during our visit. The Target store in the area had closed down permanently. Vehicle and pedestrian traffic was down to about 20%-25% of what it had been during previous visits. Some restaurants had reopened. Every business that was open had face mask and social distancing requirements. Other than the hospital, the one restaurant meal, and a couple of trips to the nearby CVS Pharmacy, we hardly interacted directly with anybody while in LA.

The first order of business was for my wife to have a drive-thru COVID-19 test. Cedars Sinai required the procedure to be done at their location within 24 hours of her scheduled surgical procedure. They told us that if we didn't hear anything, it meant that she had tested negative for the virus and we could show up for her procedure the following day. They actually ended up contacting us a few hours later to say that the test was negative. We had dinner at a nearby diner that was taking stringent precautions to prevent viral spread.

When we arrived at the hospital for the procedure the following day, we went through the check-in procedure with a few more precautions than usual, such as having temperature taken, answering questions, and wearing face masks at all times. Then we were taken to the same surgical center waiting room where I have spent many hours. Only this time, there were only three other people in the large room instead of 30-40 people. They had already made it clear that I could not come into pre-op or post-op, where I had been welcome during previous procedures. Once my wife went to pre-op, I was required to leave the hospital until they notified me that my wife was ready to be picked up.

It wasn't long before we said our goodbyes as my wife went to pre-op with a nurse and I walked back to our Airbnb apartment to spend the day working. I received some texts from the surgery team notifying me of how things were going. Eventually I received a text from my wife telling me that she wished I was with her in post-op, because she was terribly bored. Cedars Sinai requires patients who have had an epidural procedure to lie still for four hours in post-op. Our local hospital required only one hour.

Eventually it was time to pick my wife up. I drove into the pickup lane in the hospital's parking garage and waited a good 15 minutes before they brought her to the parking garage in a wheelchair. We were soon back in our Airbnb apartment, where my wife was required to rest and avoid bending her spine for two days. More boredom. We don't do much TV watching, so that kind of thing grows old, even with access to various streaming services.

On this particular trip, we got up very early one morning and drove straight through to LA from our home, stopping for food, gas, and potty breaks. We did the same thing on the way home. Leaving LA at 5 am during the pandemic made for the lightest traffic I have ever experienced in the area. We made record time.

Despite carefully following post operative instructions and being extra careful with her spine, within a couple of weeks my wife once again began experiencing CSF leak symptoms. The CS expert team has determined that another round of DSMs will be needed. They will apparently look at parts of the spine that have not been scanned in previous imaging, mainly because they almost never find leaks in those regions. The team hopes to discover one or more leak sources so that they have a clear idea of where to do surgery, instead of just working on what appear to be the most egregious perineural cysts.

We would like to hope that our upcoming trip to Cedars Sinai in a few weeks will be our last trip for surgical treatment at the facility. But it probably won't be. We still feel like we're on the right track. It seems that sticking with the expert team at CS is our best hope for achieving a permanent resolution to my wife's CSF leak problems. I will report outcomes in a future post.

Monday, May 18, 2020

Mr. Wood's Opus: Our daughter makes sure the retirement of her high school choir teacher didn't get lost in the pandemic morass

One day in February my daughter excitedly reported that the senior class choir officers at the high school had a plan to recruit former students of the school's longtime choir director to join in singing a number at the final concert of the year. Mr. Wood has been teaching music in the school district for 36 years and has taught choir at the high school for 27 years (the same school he attended as a youth). Our daughter recruited two of her brothers to sing for the surprise music number.

Then the pandemic occurred. Schools were shut down. The school district canceled all springtime events of any kind, including the final choir concert. The plan for a surprise musical number to honor Mr. Wood died too. Almost.

My daughter kept talking to me about finding a way to honor Mr. Wood. I suggested that she should contact the senior choir officers. But as the weeks passed, it became clear that nothing was happening on that front. One teacher at the high school said that due to the pandemic situation, many seniors, including some of the best students in the school, were struggling to fulfill graduation requirements and complete concurrent enrollment courses. The senior choir officers were probably too swamped to think about much else.

A few weeks ago my daughter asked me if we could put together a video choir for Mr. Wood. We have all seen video choirs during the pandemic. The way it works is for each performer to listen to a choir track through earbuds or headphones, and take video of themselves singing so that only their voice is heard on the video. A little research revealed that I lacked the necessary equipment, software, and expertise. But my daughter was insistent.

After making it a matter of prayer, I was prompted to reach out to professional videographer Jason Hadley of Masterpiece Images. Jason was willing to help. He had the equipment and know-how. Besides, he has kids who have studied under Mr. Wood. Jason even provided a drive share where videos could be dropped.

The next step was to obtain the sheet music, accompaniment track, and choir track for the selected song. Mr. Wood had been teaching students in all of his choirs this year to sing a choir arrangement of the ABBA song Thank You for the Music, so we needed music that matched this arrangement. This proved to be difficult to find.

After praying about it, my wife suggested contacting the school's theater director, Mark Daniels, who knows about digital performance media and related rights. Mark said that the school had coincidentally just purchased the needed materials and performance rights. Mark made arrangements for us to use these materials.

Then we had to recruit current and former students of Mr. Wood to take video of themselves singing and drop their video in the drive share. Our daughter reached out to current students via email and social media. I put out a post on social media, having no idea where it would go or how it would turn out.

Thankfully, my social media post soon made its way to some of Mr. Wood's former students, one of whom turned it into a group which quickly added members. Many people liked the idea, but for several days, the only video on the drive was my daughter's. It can be pretty intimidating singing a solo instead of being physically surrounded by fellow choir members being directed by a conductor.

Little by little, videos started trickling in. Some were family groups, including siblings, parents and children, and extended family, all of whom had taken choir from Mr. Wood. A few days before the deadline I was concerned about the low response. As I prayed one morning, I sensed the Spirit telling me to chill out. This was not my project or even my daughter's project. It was God's project and it was going to work out better than I expected.

At the same time, the social media group took on a life of its own. People started posting memories of their time in choir with Mr. Wood. Mrs. Wood became a member of the group. She later told us that she spent a lot of time crying in the bathroom after reading wonderful comments about her husband. She wanted to keep it a surprise for him.

The final two days before the deadline were filled with responding to questions and issues regarding technical difficulties people were experiencing with uploading their videos. I am a software developer, so I am used to troubleshooting technical issues. We were able to successfully resolve many problems. I was pleased with the number of videos that poured in just before the deadline.

Jason ended up synchronizing 108 voices into the Scott Wood video tribute choir. He said that he was worried about what it would sound like when it all came together but it sounded fantastic. It really sounded like a cohesive choir, despite being spliced together from nearly 100 individual videos. Here is the final product:


At one point during this project, I wondered aloud why my daughter and I should be doing this. We weren't formally in charge of anything. It's just that our daughter felt strongly that Mr. Wood ought to be honored. She didn't want him to end his distinguished career on a whimper during the pandemic. My wife said that it was clear that God wanted the project to happen. She surmised that our daughter and I were the ones God could get to do something about it. Besides, it was good for us. God pulled in lots of other people, who each did their part.

Our plan was to present the video to Scott Wood on the day the cancelled choir concert would have been held. Mark Daniels made arrangements for a very small retirement ceremony in the school auditorium that day. Due to pandemic restrictions, only a dozen people attended, including Mrs. Wood and several family members. My daughter and I were privileged to be among the attendees.

Mr. Wood was completely surprised by the event. He was deeply moved as he watched students spanning 30 years singing for him. The audio of the choir in the auditorium was simply amazing. We captured some of Mr. Wood's reaction in this video:


As the Spirit had foretold, the event was even better than I had expected. God knows how to do his work. Following the event, we added Scott Wood to the social media group. He was able to read and respond to hundreds of heartwarming and beautiful messages. Our daughter is very pleased that Mr. Wood now knows that his career was very consequential in the lives of many.

I am so proud of our daughter. This project wouldn't have happened without her. She didn't have to do this, but she felt that it was the right thing to do. Our daughter loves performing arts, although she is not a star performer. The rest of the school experience is kind of rough for her. This project demonstrates the quality of our daughter's character, which is far more important than any academic achievement.

To Scott Wood I want to say, thank you for your career. Thanks for blessing the lives of our children. May you enjoy many wonderful retirement years.

Friday, March 13, 2020

Adventures in cerebrospinal fluid leakage: part 4

Part 4 in a series about my wife's spontaneous cerebrospinal fluid leak condition. See part 1, part 2, part 3.

As the weeks passed following my wife's spinal surgery to close off the veinous fistula that was bleeding cerebrospinal fluid out of her central nervous system, her high pressure headaches abated. But then my wife once again began experiencing low pressure headaches. She didn't want to believe it at first.

One day after a few weeks of questioning whether she was really having CSF leak symptoms, I suggested that she take a caffeine pill to see what it did. She took the pill and soon experienced the same kind of relief she did before the surgery, as the caffeine caused vasoconstriction, increasing the fluid pressure in the central nervous system. She begrudgingly admitted that she must still be leaking CSF fluid.

My wife soon began once again working with the CSF Leak Expert Team at Cedars Sinai Hospital in Los Angeles, where she had previously been treated. After having yet another MRI done locally and then providing that image to the experts in Los Angeles, the team arranged for us to return to Cedars Sinai for another digital subtraction myelogram (DSM) and probable surgery. Having resolved a major leak on the left side of the spine, they suspected another leak on the right side that would require surgical treatment.

We drove to Las Vegas one day, stayed in a very nicely appointed Motel 6 away from all the glitz, and left early the following morning, arriving in Los Angeles around noon. We learned from our October 2019 trip that it's a really bad idea to drive from Las Vegas to Los Angeles on a Sunday afternoon/evening. Apparently more than a few Southern Californians go to Las Vegas for weekend getaways, resulting in very heavy traffic as they drive back home in time to get to work on Monday.

Mid February found us in a lovely Airbnb apartment just a couple of blocks from Cedars Sinai in West Hollywood. The weather was quite mild during our eight-day stay. We knew the routine well when we showed up for the DSM on a Monday morning. The DSM is a surgical procedure performed under general anesthesia, where they inject dye into the CSF fluid and do imaging to see where the dye goes. If they see something, they literally stop the patient's breathing for up to 90 seconds at a time to get the best image possible.

After a number of hours of pre-op and then the procedure, the imaging surgeon came to the waiting room to tell me that they had found no CSF leak. A spinal DSM can only be done on one side of the body at a time. While I was in post-op with my wife, Dr. Wouter Schievink, who is the head of the CSF leak program at Cedars Sinai came and chatted with us. Having found no leak on the right side, he suggested doing another DSM the following day to see if the left side had sprung another leak.


Tuesday was a repeat of Monday. Once again, when the imaging surgeon reported to me in the waiting room, he said that they found no leak on the left side. But he did say that they confirmed that October's surgery had been very successful. At first I was disappointed. But as I sat there waiting for the time when I could join my wife in post-op, it occurred to me that this likely meant that the leak was too small to see using available technology, small enough to be resolved by a spinal blood patch.

Over the preceding year and a half, my wife had had a series of spinal blood patch procedures, including a specialized blood patch done at Cedars Sinai last July. Each of these procedures failed quickly. After they found the veinous fistula leak in October, Dr. Schievink explained that the fistula leak was simply too large for the blood patch procedure to work.

We were not surprised when Dr. Schievink visited us in post-op that Tuesday and recommended another double blood patch procedure. He suspected that the small hole from inserting the dye for the October DSM had failed to seal, although such holes usually seal on their own for most patients. If that was the case, the two new holes from the two DSMs that had just been done would likely present the same problem. From his experience, he felt that the blood patch procedure would most likely remedy all three holes with no problem.

A couple of days later, my wife was once again wheeled into the operating room for her third surgical procedure of the week using general anesthesia. My wife does not respond well to narcotics, but it is common practice for anesthesiologists to add narcotic to the IV of surgical patients receiving general anesthesia to mitigate surgical pain. Having already been quite nauseous twice that week, my wife prevailed on the anesthesiologist to omit the narcotic.

My wife was much more alert and happy when I joined her in post-op than she had been on all of her previous surgical procedures. But she soon found her back at the sites of the blood injections to be much more sore than she had imagined. Fortunately, over the counter extra strength Tylenol sufficed in managing that pain.

The next couple of days my wife experienced a mild high pressure headache, which was helped by drinking dandelion tea, as recommended by the experts at Cedars Sinai. Not wanting to cause any problems with the procedure, my wife carefully followed recommendations to avoid lifting, as well as bending and twisting of the spine. By the end of the weekend, however, my wife had no more headaches, no hearing disparity, and no mental fog. It was clear to her that all of her CSF leaks were gone. It felt like a tremendous miracle after a year and a half of suffering.

We had to stay the weekend so that we could meet with Dr. Schievink the following Monday. The idea was to allow the spine to settle before doing a final exam. By the time we were meeting with the surgeon, my wife was experiencing some pain and weakness in her lower back and down the backs of her legs. Dr. Schievink said that this is a very common side effect of the spinal blood patch procedure and that it would gradually resolve over the next 2-8 weeks. When my wife wondered why she had never had similar pain with previous blood patch procedures, the answer was that those blood patches had failed, while this one was working.

Several weeks have now passed since we returned home. My wife is still being very careful about lifting, twisting, and bending. She is following recommendations to gradually increase these activities over a 90-day period. So far, so good. She still has some mild pain in the backs of her legs, but it seems to be getting a little better with each passing day. It seems like a small price to pay to be rid of the CSF leak symptoms.

As we reflect on the journey that began with a severe nonstop headache in August 2018 and led to three trips to California, we feel very blessed. It has been expensive, but we have been blessed to be able to manage the expense. Last spring we were despondent about the unsuccessful treatment that my wife had received locally, the expense, and the seemingly endless requirement for various types of MRIs. We thought there was no solution and we grimly considered the possibility that my wife would suffer CSF leak symptoms for the rest of her life.

We had searched the internet for better information for months. But a chance series of links took us to the nonprofit CSF Leak Foundation. While watching their annual Leakweek online seminar, my wife found Dr. Schievink and his program at Cedars Sinai. It seemed like an impossible coincidence when I discovered that Dr. Schievink and Cedars Sinai were both preferred providers on our health insurance. What are the chances of that happening?

Today my wife is free of CSF leak symptoms and we hope she remains that way. Dr. Schievink asked us to visit him again in a year so that they can do some before/after comparison of my wife's brain scans, and consult about her case. So I may post a follow-up at that time.

While we are very grateful, we also know that there are a number of people out there suffering spontaneous CSF leak symptoms who either don't know what condition they have or else have no idea of how to find solutions. Since this is a rare disease, most doctors and neurologists know little or nothing about it or how to properly treat it. There are many people who feel hopeless, like we did before we discovered the CSF Leak Foundation.

Spinal CSF leak symptoms include:

  • Positional headaches, which feel worse when sitting upright and better when lying down; caused by intracranial hypotension
  • Nausea and vomiting
  • Neck pain or stiffness
  • Change in hearing (muffled, ringing in the ears)
  • Sense of imbalance
  • Photophobia (sensitivity to light)
  • Phonophobia (sensitivity to sound)
  • Pain between the shoulder blades

Cranial CSF leak symptoms include:

  • Drainage from the nose (rhinorrhea)
  • Salty or metallic taste in the mouth
  • Sense of drainage down back of throat
  • Drainage from the ear (otorrhea)
  • Cutaneous sinus tract drainage (CSF leaks into the sinus tract, which then creates a pathway to drain through the skin)
  • Loss of sense of smell (anosmia)
  • Change in hearing or ringing in the ears

If you know anyone hopelessly dealing with these issues, point them to the CSF Leak Foundation and/or the CSF Leak program at Cedars Sinai to explore whether they might find answers and perhaps complete healing. We are so happy it worked out that way for us.


Update 3/28/2020: Well, it was too good to last. My wife is once again experiencing CSF leak symptoms. The last blood patches were only temporarily effective. We are considering our options. So stand by for part 5 at some future point.

Tuesday, January 21, 2020

The brother I never knew ... until now

My parents hardly ever talked about one of my brothers. As far as I knew, my parents had five sons (and no daughters until daughters-in-law and granddaughters came along). I remember Mom once telling me that between my birth and the birth of my brother three years later, she carried to full term a baby boy who was stillborn. I was too young to comprehend the kind of pain Mom and Dad must have experienced as the result of this trial.

Once as a teenager I asked Mom where the stillborn child was buried. She replied that back in those days nobody did anything like that. The child's body was treated as biowaste. No name or other information was recorded. It was as if the child never happened. I still don't know the date, or even the year of this event. I couldn't understand Mom's seemingly deliberate vagueness surrounding this child until I had my own kids and grasped in some small way the emotional pain Mom still felt.

Nearly a year after Dad's stroke, he ended up in the intensive care unit when the antibiotic prescribed by his dentist caused a bowel perforation because Dad was also taking blood thinners. Dad wasn't terribly coherent during the first couple of days in the hospital. When he did become more lucid, he kept telling hospital workers that he and Mom had six sons. My brother showed Dad a family photo with only five sons. Dad was befuddled. He was absolutely certain that he had six sons.

Some years later, Mom confided in me that she had very much appreciated my brother and sister-in-law naming their younger son Matthew. She explained that this was the name she and Dad had picked out for the baby that didn't survive. That was news to me, although I was in my sixth decade of life by then.

Mom spent the last 2½ years of her life in a small eldercare facility near our home. Although this was a nice facility with caring staff, it was hard to watch Mom decline physically and mentally as she aged and suffered a long series of brain "microbleeds" and small strokes for which the medical industry could do nothing.

A few weeks before Mom's passing last autumn, I gave Mom a priesthood blessing following yet another small stroke that had left her a little more impaired than before. Suddenly I knew Dad was in the room with us. His presence was strong throughout the blessing. It is difficult to describe this to someone who hasn't had such an experience. I couldn't see Dad, but there is absolutely no question that he was personally present. I felt comforted and I know Mom did too.

But that wasn't the end of it. Over the next two days, I sensed Dad's presence about eight or nine times. Each episode left me feeling uplifted. I gathered that these visits were part of the preparations for Mom passing through the veil. But there seemed to be something more. Otherwise, why would Dad keep visiting?

Finally one morning when I again felt Dad in the room, it dawned on me that maybe I should ask whether he had a message for me. As soon as I asked, the words forcefully blasted into my mind, "I love my wife! I love my wife! I love my wife!" Having been raised a stoic northern German under Hitler's reign, Dad could be stiff and curt with Mom and us kids. But in this instance I felt a love that is as wide and as deep as eternity, laced with a tenderness that I can't describe in human terms.

Suddenly I felt Dad's words cheerily come into my mind saying, "I am here with your brother Matthew." I then sensed a pure being of magnificent brightness. He felt ... familiar. I realized that this person had ministered to me and my family many times in the past. In fact, I sensed that ministering to his siblings and their families was one of his chief duties. I asked whether Matthew's information should be put on our family history records and was told that this was not necessary.

Not long after that, we visited Mom at the care facility one day and found her unusually lucid. I told Mom about this experience and asked what she thought. She pondered a bit before her facial expression became quite pleasant. Then she said, "I think that's right."

I didn't feel Dad's presence like that again until my brother, my nephew, and I gave Mom a blessing a few hours before she passed away. We sensed many other loved ones from beyond the veil as well. It was a very tender moment.

The doctrine surrounding stillborn children is undefined. Perhaps that's because there is a great deal of variability and uniqueness among the cases. So, while I can't say anything about other stillborn children, I can say is that my brother Matthew is very much active in the spirit world. I'm grateful that he ministers to my family and I look forward to someday meeting him in a setting where we can more fully interact.

Monday, November 18, 2019

Adventures in cerebrospinal fluid leakage: part 3 (hopefully the conclusion)

I sat in what had become a familiar waiting room on the eighth floor of Cedars-Sinai Hospital in Los Angeles, focused intently on my laptop. I fortunately have a job where I can work remotely. I was getting some work done, but it wasn't easy.

See part 1 (4/2/19) and part 2 (8/7/19) for background.

We had arrived at the hospital at 5 am and were pleased to discover that my wife's patient number was the first one listed on the operating room monitor. Other patients and their families had filtered in over the following couple of hours. Eventually they took my wife to pre-op. The variety of small human dramas that played out before me among the room's occupants was distracting. Not just from my work, but also from the fact that my wife was somewhere beyond the nearby double doors preparing for a major surgical operation.

Thankfully, I wasn't terribly nervous. Two days earlier my wife had undergone an imaging process called a digital subtraction myelogram, which itself was a serious procedure done in an operating room. They employed general anesthesia and literally stopped my wife's breathing for up to 90 seconds at a time to get images uncorrupted by bodily movement.

They can only do the myelogram on one side of the spine at a time, so there was a chance that a second myelogram would be needed the following day. But the doctor strongly suspected that the CSF leak would be found on the left side and he was correct.

The myelogram revealed a veinous structure that had attached itself to the dura mater in the T11-T12 area of the spine. It was sucking CSF out of what is supposed to be a closed system. This resulted in intracranial hypotension, nonstop severe headaches, hearing disparity, and mental fog; symptoms that had significantly impacted my wife's life quality for more than 14 months.

The doctor was so thrilled with the myelogram images that he sent them to a colleague in the UK whom he had recently trained, as an example of what to look for. He explained that this image revealed exactly where the problem was. As perhaps the world's foremost expert on this condition, this doctor had performed hundreds (perhaps thousands) of similar surgeries with good results. He said that this was the sole problem and that he could fix it. So we were hopeful.

Hours passed as I sat in the waiting room working away. I quite enjoyed watching one family that brought six adults and one older teen to accompany their loved one. This family obviously loved each other. Finally, seven hours after arriving, I was guided to the post-op center, where my wife was groggily recovering from the anesthesia. Bit by bit, she became more coherent.

The doctor dropped by and jauntily explained how he had put an aneurysm clip on the veinous structure, completely stopping the leak. He made it sound like a 30-second procedure. But my wife had been in surgery for hours and ended up spending three days in the hospital following the surgery. This was no minor procedure.

During the three days my wife was in the hospital, she was given a lot of drugs for pain management. She shifted from having low-pressure headaches to having high-pressure headaches. The doctor explained that it would take time for her body to stop over-manufacturing CSF, which it had been doing to try to compensate for the leak.

They gave my wife a medication that helped reduce the CSF overproduction. It contained a sulfa derivative. We knew that my wife had a sulfa allergy, but we determined to use the drug anyway. The drug was very helpful, but my wife later developed some histamine responses before she was able to discontinue the drug a week and a half later.

About a day and a half after being released from the hospital, my wife was finally "herself" again. She never thought she wasn't her normal self. But I knew otherwise. She did much better as she dialed back on the drugs they sent home with us.

Speaking of home, we were many hundreds of miles away from home. During our July trip to Cedars-Sinai, we stayed in a hotel that was a little over a mile away from the medical center. The room was clean. But it was cramped. We grew to despise being in that puny room. The neighborhood and the facility itself felt unsafe. Sometimes you could find homeless people crashed in the corner of the tiny parking garage or using the tiny restroom across from the little main office. We were so glad to leave.

This time around, we opted for an Airbnb apartment a block away from the hospital. For a few dollars more per night than we had spent for a crappy, puny, less-than-safe hotel room, we got an entire apartment with two bedrooms, two full baths, a living room, a dining room, and an equipped kitchen, in a safe building with a gated parking garage. The neighborhood felt relatively safe. We didn't get a free continental breakfast like we did at the scary hotel, but we hardly cared.

At the apartment, I had a desk to work at, a nice couch, and an entertainment center. I liked the beds so well that I pulled up the mattress to get the info from the tag. I seriously wanted to replace our mattress at home with one like we had at the apartment. This was our first time using Airbnb, and we were very pleased. It really felt like a home away from home. Two thumbs up.

It's a good thing we had a decent place to stay. We had to remain in LA for several days to await my wife's follow-up appointment with the surgeon. They checked her over pretty carefully and gave us final instructions, before clearing her to go home. We had been told all along that my wife would need to restrict bending, twisting, and lifting for a month following the surgery and that she would then need to do some physical therapy to rehabilitate the surgical site.

It has been almost a month since my wife's surgery. Her high-pressure headaches have pretty much abated, as the doctor said they would. She has been careful, as prescribed. Unfortunately, she caught a virus that kept her down for awhile. She now thinks this was a boon, because she otherwise would have felt good enough to undertake activities she was supposed to avoid. Physical therapy will begin later this week.

While my wife is still dealing with the aftermath of the surgery, she says that it was worth it to get rid of the CSF leak. When I asked her to compare how she feels today with how she was feeling before any of this CSF leak mess started, she told me to ask her again in three months when she is fully recovered. But she affirms that the surgery and its aftermath were small prices to pay for the relief she is experiencing.

The surgeon told us that after my wife fully recovers from the surgery, she should have no restrictions and that her condition should pretty much be as if she never had a CSF leak at all. Well, except for the three-inch incision scar in the middle of her back. I suppose we can consider that a souvenir of this interesting experience. That, and our stack of medical bills.

Even with good insurance, this CSF leak has cost us a lot of money out of pocket. We count ourselves lucky to have found one of the world's greatest experts in CSF leaks and the facility where he works to be on our insurance preferred provider list. How many people lack such a boon? How many people with CSF leaks are struggling with daily pain like my wife was, but without any knowledge of how to fix it, or even hope that it can be fixed? We have many blessings to count.

Update 1/21/2020: This story isn't over yet. More problems have ensued. We're headed back to Los Angeles in a few weeks for more invasive surgery. They can't even really tell us what that will look like until they do more imaging the day prior to the surgery. But my wife's hospital stay is slated to be longer. I will write about how it all goes.

Wednesday, October 23, 2019

A Tribute to My Magnificent, Flawed Mom

Mom never felt a need to be important. Rather, she was strongly motivated by a need to reach out and serve others, as well as a desire to develop and nourish relationships with others. Mom was always juggling a hundred different things to meet our family's needs and to bless the lives of others. I'm told that this started when she was a little girl who took frequent opportunities to care for nieces and nephews.

Being the 11th of 12 children and growing up during the Great Depression likely prompted Mom's lifelong obsession with fairness. A few years ago I found a small notebook that included a list of prices under the names of my brothers and me for the Christmas when I was 13 years old. The sums of the columns differed by only a few cents. Dad thought that fairness had more to do with customized individual needs, but Mom's version of fairness seemed to be more a matter of mathematical equality.

Despite never needing to feel important, appearances were important to Mom. While in high school, she worked three jobs in the summer and then worked at the local drugstore during the school year to earn money. More than a little of that money went toward clothes much nicer than her parents' family economy could afford.

When I was young, our family's approaches to matters were more than a little bit governed by what the neighbors might think. More than one of my brothers chafed at the idea of being controlled by some nebulous group of "they" out there. I now believe that we sometimes got Mom wrong on this. She was likely more concerned about being charitable to others than about trying to superficially look good.

Mom was not afraid of difficult things. She might grouse about it along the way. But she would still forge ahead and deal with whatever the path brought. I was around seven years old when I became aware that Mom had suffered her third miscarriage in a row. Years later I learned that following my birth, Mom had carried a son to full term, only to have the child stillborn. I could tell that Mom was a little melancholy following her third miscarriage, but she took all of these things in stride and moved on with the normal duties of life. Only when I was much older did I realize how devastated she might have been.

Since hard things were not to be avoided, Mom extended this sentiment to her five sons. We tried to grow vegetables in the back yard a couple of years, but Mom had a distaste for the Wyoming farm life of her youth and Dad had grown up as a city boy in Germany. So our agricultural efforts fell flat. But every single time a neighbor called during harvest season to ask if Mom wanted whatever it was they had growing, Mom would say, "I'll send my boys over to pick some." I liked to eat some (but not all) of those things, but I never liked picking any of them.

My oldest brother got a newspaper route when I was a kid. This was back in the day when news carriers had to go door to door to collect subscription fees each month. They also had to manage the finances for their routes. For the next decade, that route and the neighboring route cycled through the boys in our family. Who do you think was the main support staff for us? You guess it: Mom.

In a remarkable occurrence, Mom served a two-year mission for The Church of Jesus Christ of Latter-day Saints in Germany at the personal invitation of Gordon B. Hinckley when she was two years younger than the minimum age for sister missionaries. Toward the end of her mission, she met a young German man who joined the Church. They corresponded after she returned home. He eventually emigrated to the States, married Mom, and became my dad. So, I guess I owe my very life to Gordon B. Hinckley.

Mom was not above being manipulative to motivate her sons to do the right thing, or at least what she thought was the right thing. I was scarred for years after Mom told me as a young child that I would sustain a skin crease between my eyes if I didn't stop pouting so much. It took many years before I realized that this was a genetic trait that would be little affected by the faces I pulled as a kid.

As a young adult I took a break from the rigors of college for a few terms so that I could pursue other opportunities. In her desire to get me to go back to school, Mom once embarrassed me in front of some of my friends who were still in college. That hurt. But it didn't get me to go back to school at that time. Only my wife's gentle persistent encouragement and sustained confidence in me brought that about years later.

There was no internet during my youth and the TV shows we watched were mostly inane and uninformative. So when we were young, Mom was often our chief source of information. I could always tell when one of us broached a topic that was dicey for Mom to deal with. She would sometimes avoid direct answers, but most of the time she would parse through a children's version using terminology with which we were familiar.

I still remember the time she responded to my question about what rape was when I was young. Her child-level explanation was roughly factual but was crafted to shield us from the horror of such a violent act. Despite my youth, I can remember thinking about Mom's words and developing a strong sense of revulsion to sexual violence on my own.

Mom had her own vocabulary for many sensitive things, such as certain body parts and bodily functions. I recall coming to the realization at one point that this was private family jargon that was foreign to my peers. Being boys, we often wrangled these terms into newfangled lingo that was usually intended for comedic or insulting effect. Mom frequently complained about how every family gathering at some point ended up devolving into scatological discourse. Such is one of the problems with living in a house full of boys. My poor mother.

When I was five years old, Mom took a seasonal swing shift job as a data entry clerk so that she and Dad could save money for a dream trip to visit Dad's family in Germany. They wanted to take their children with them, but they ultimately realized that the kids would be grown before they could save enough money. So when I was eight, Mom and Dad farmed us out to gracious neighbors and spent a month in Germany.

I hated the seasons when Mom had to work her swing shift job. She would be gone by the time I got home from school. She would get home so late at night that she would still be in bed when I left for school in the morning. After we went to bed on Sunday night, we sometimes wouldn't see Mom until late Saturday morning.

I liked it better when Mom moved to the day shift. But she didn't, because her part-time seasonal position suddenly shifted to a full-time job. It later became a career, at which she excelled. Dad once told me that the day Mom went to work was a good day for us kids, because prior to that she had a penchant for micromanaging our play and activities. All with the best intent, of course. After going to work, Mom had to leave us to our own devices much more. But that doesn't mean that we left her to her own interests.

Mom was always there to help with every school project that arose. I was never very good with that stuff, so Mom usually had to provide a lot of ideas and do a lot of work. She would never take over. She would insist that I make the decisions (with her careful guidance) and that I stay in charge every step of the way. My projects never looked as slick as those of other kids who were more creative or whose parents did more work on their projects. But I felt like each project was mine.

Some of my earliest memories revolve around Mom sewing with her antique Singer sewing machine. In my mind, Mom had a love-hate relationship with sewing. She insisted on making matching shirts for Dad and all of the boys. She sewed book bags for us to use for school and crafted toddler sized boy dolls. In the 70s when bizarre leisure suits were all the rage, Mom literally sewed leisure suits for all of us boys.

Mom must have loved sewing, because she worked so hard at it, often late into the evening. But she also seemed to hate it because she knew that her projects never quite matched the quality of store bought clothing. It particularly chagrined her when better fitting store bought clothes started becoming much cheaper than lovingly hand sewn items.

Even after Mom got a swanky newfangled sewing machine, she often pulled out the ancient Singer machine to do certain types of stitches. When my youngest brother married, Mom gave him and his wife her old Singer machine. My sister-in-law didn't sew, so they saw no use for the machine. They donated it to charity, only to later learn that Mom had hoped to sell it for the antique that it was.

Speaking of machines, Mom was a master of the typewriter. I remember when Mom got her first electric typewriter that had a correcting function. Her typing speed was very high and she rarely needed the correction function. Mom was also an early adopter of the home PC and the word processor, at which she learned to excel.

When I was a young adult, a family that had a long term relationship with our family invited us to enjoy an evening of swimming at their backyard pool. Mom and Dad had always been quite conservative financially. So it shocked me to the core a week later when a local firm was in our back yard digging a hole and installing a real in-ground swimming pool with a diving board.

My parents later explained that they had been thinking for years about how to keep drawing the family together as the children got older. They had gone back and forth between getting a pool or getting a boat. After the swim party, they went with the pool. And it really did work. Over the next three decades the family spent many days gathering, swimming, cooking out, and hanging out.

When grandchildren came along, Mom threw herself into blessing their lives, especially after she and Dad retired. Sometimes this meant spoiling them with more birthday and Christmas gifts than their parents gave them. One of Mom's specialties was making personalized birthday cakes for each grandchild each year. As the number of grandchildren grew, this task started to become overwhelming, although, the grandchildren loved their cakes.

Several years after they both retired, Mom and Dad served a mission for the Church in Hamburg, Germany, the same city where they had met many years earlier. Mom tried to keep close tabs with family members while they were away, just as she had written each of her sons weekly while they served as missionaries. Upon arriving home, Mom and Dad felt somewhat disoriented, like they had just climbed off a wild carnival ride and were suddenly standing still.

3½ years later when Dad suffered a debilitating stroke, Mom became Dad's main caregiver, just after having serious surgery on her foot. The next year and a half were nightmarishly overtaxing for Mom, who continued unwaveringly devoted. Dad wasn't always able to express himself and he often behaved irrationally. It wasn't always clear how much of this was due to the stroke damage or the complex array of medications they threw at him.

Mom made the best of Dad's situation. But in trying to cope with this new reality, she tried to help Dad by putting him on a healthy but miserable diet that might have helped prevent congestive heart failure had it been implemented decades earlier. Following Dad's second stroke, Mom almost never left the hospital until Dad passed away a week and a half later.

On his deathbed, Dad had me promise that I would get Mom out of the home they had moved into 4½ decades earlier. But Mom wouldn't go. She had difficulty relinquishing anything Dad had touched, including the home, his truck, his clothes, etc. That's one common way that some people deal with grief.

After several years, aging (both Mom and the house), arthritis, etc., Mom finally relented and allowed us to sell her house. We moved her into a lovely single level home that was more manageable. Mom continually complained to everyone she encountered about the new home's shortcomings. It wasn't really the home that was the problem, it was widowhood and aging. The house was just a scapegoat. She still continued to reach out and serve others as much as possible even as life became increasingly challenging.

I now realize that Mom was already several years into vascular dementia by the time Dad had his first stroke. Mom never had significant heart problems, but we later discovered that she had been experiencing regular cerebral microbleeds.

We were told that doctors have little understanding of the causes and treatments for this condition. They do know that each microbleed results in a small amount of permanent cognitive impairment. While most episodes are hardly noticeable, the cumulative effect can be debilitating. That's how it worked for Mom.

Over time it became increasingly challenging for Mom to manage her own affairs. We were glad when she admitted that she could no longer safely drive a car. But cognitive impairment also impacted Mom's gait and stability. My wife became Mom's principal caregiver and companion. She also became Mom's service arm, performing many acts of service on behalf of Mom. But my wife couldn't be with Mom all the time.

After 5½ years in the new home, it became clear that Mom was no longer safe living on her own. Our home is full of stairs and was completely unsuitable to Mom's condition. Mom ended up moving to a nice smaller assisted living center just a few blocks from her home and our home. She again made the best of the situation, although, it bothered her to be there with many people who were obviously more impaired than she was.

Over the next 2½ years, Mom went from being one of the lesser impaired residents of the facility to being one of the more impaired residents, both physically and cognitively. She eventually moved to the cognitive care unit that provided a higher level of care. Several small strokes resulted in Mom becoming confined to a wheelchair.

During the final half year of Mom's life, she declined fairly steadily both cognitively and physically. She would have periods where she would stabilize and other periods where she seemed to improve briefly. Following yet another small stroke, which didn't seem much different than previous small strokes, Mom's condition deteriorated rapidly until she passed away peacefully a week later.

After 87 years of living Mom didn't leave behind any notable things, other than her posterity. She didn't write music or create serious artwork. She hadn't accumulated nice collections of things. If her life could be boiled down to two words, those words would be work and service. Underlying those two words is really one word: love. Her way of showing love might differ from the way others do it, but it's who my mom was and is. I know that she is continuing this pattern. She is busy working and serving even now.

Thursday, September 12, 2019

Our child survives a suicide attempt. Is there a better way to address this issue?

I wasn't shocked when I saw the bloody wounds on my son's arm; I was disappointed. And tired. I wondered why my son's crisis moments seem to always come right when we are trying to go to bed. Maybe it's his way of crying out for help when he's at the end of his rope and he realizes that we won't be readily available a few minutes later. Or maybe it's just that he's more likely to reach the end of his rope at the end of the day when his energy is spent. Or maybe it's a combination of many factors. But I was also grateful. My son was, after all, still alive.

We have struggled for years to understand our son's mental illnesses. And maybe the term 'mental illness' is part of the problem. Neuroscientist and psychiatrist Thomas Insel was the director of the National Institute of Mental Health when he gave a famous 2013 TED talk about changing the way we think about and approach disorders of this nature by changing the terminology to more accurately reflect what is going on.

In the talk, Dr. Insel decries both of the common terms used to describe these conditions: mental illness and behavioral problems. Mental illness means a disease of the mind. This suggests that the issue is mainly a moral failing and that the problem can be fixed simply by changing one's mind. While changing one's mind might help, it cannot fully address issues based in the biological structure and function of the most complex organ in the body.

Behavioral health approaches the matter from a third party viewpoint rather than describing what is going on with the patient. It essentially says, "The way you act is a problem for others." Another problem with this view is that behavior is a lagging indicator. It is the last thing to show up in the progression of the disease. So we end up treating the disease the wrong way and we don't even recognize the need for treatment until very late in the game.

Insel contends that disorders such as depression, anxiety, bipolar, ADD, ADHD, schizophrenia, OCD, and Autism are brain disorders. Unlike Huntingtons, Parkinsons, or Alzheimers, "where you have a bombed out part of your cortex," these illnesses involve "traffic jams, or sometimes detours, or sometimes problems with just the way things are connected." He likens these diseases to heart "arrhythmia, where the organ simply isn't functioning because of the communication problems within it" and where you will find no major lesion.

If we can change the terminology to more accurately reflect disorders of the brain, it will not only affect the way we think culturally about these issues, it will affect the way research and treatment are approached. It will help us find ways to discover the disorders earlier so that early treatment can be undertaken. Insel notes that this same course has been followed with many diseases, so that rates of death and disability have plummeted for the likes heart disease, stroke, AIDS, and Leukemia.

Despite being tired and disappointed at seeing my son's wounds, I had complete clarity on what needed to happen next. I lean blue with a strong dose of red on the Hartman Personality Profile. I crave closure and decisiveness. So knowing what to do next helped take the edge off the horror of the situation.

I could readily see that the wounds were too superficial to require stitches. Yet I also knew that my son needed to get to an emergency room as soon as possible. While the physical wounds could have been treated at home, the psychological crisis needed more than just a home remedy because my son was still in danger.

As I thought about spending hours in a busy ER department at the other end of town, I suddenly remembered that a nearby emergency center (not physically attached to a hospital) had opened recently. We hardly spoke a word on the short ride there. The staff quickly showed us to a room. There were other patients in the facility, but it was quiet and free from noticeable drama.

My feeling of disappointment mainly surrounded my son's relapse. I had hoped that increased maturity and stabilized treatments had gotten him past feelings of self-harm or suicide. Maybe I should have known that this view was overly optimistic. Not long ago he quit a job that proved to be too demanding for him. I underestimated the resultant feeling of failure he felt.

A smaller portion of my disappointment involved the expense of emergency and in-patient treatment. We've ridden this train before, so we have a fair idea of the thousands of dollars it will cost us out of pocket, despite decent insurance. It will pinch our budget big time. Especially in this medical-bills-R-us year. (See 4/2/19 and 8/7/19 posts regarding my wife's rare condition.)

I'm not complaining. We will make it all work, even if it involves quite a bit of discomfort. This life comes with zero guarantees of smooth sailing unencumbered by physical and financial challenges. Marriage carries the risk that your partner could develop significant medical issues, as my wife discovered when I was diagnosed with Multiple Sclerosis two years into our marriage.

One neighbor quipped that when you choose to become pregnant, you are inviting a new person to join your family, and you have no idea who is coming. It makes no sense to whine that the child that comes differs from what you expected. Among the chief requirements for the job of parent is the task of learning to love the children that come to your family, whatever challenges they might bring. We applied for that job, and now we're trying to do it as best we can.

I believe that Dr. Insel's suggestion to change terminology surrounding brain disorders is sorely needed, because at present we simply don't know enough about the underlying causes of these disorders to comprehend how to properly treat them. We need better understanding. How well do those who have never struggled with major depression understand how it affects its victims?

Writer Andrew Solomon discusses his own struggle with depression and anxiety in this heavily viewed 2013 TED talk. He exclaims how grateful he is that he didn't live 50 years earlier when the available treatment was barbaric by our standards. But he also hopes that 50 years from now, those with brain disorders will be happy that they didn't live in our day because our treatments will seem barbaric by their standards.

While suffering from depression, Solomon says that you know that your response "is ridiculous while you are experiencing it." You know that others readily deal every day with the factors that discombobulate you, and that it's no big deal to them. "And yet," he exclaims, "you are nonetheless in its grip and you are unable to figure out any way around it." He says that the opposite of depression is not happiness, but vitality. Those grappling with major depression feel their vitality drain away. It hurts to think that my son has grappled with this kind of thing for years.

During the four hours we spent at the ER, there was a lot of waiting. They dressed my son's wounds and gave him a tetanus shot. He spoke privately with a physician. They took a lot of blood for a whole battery of tests, mainly to ensure that any outstanding medical issues were addressed before sending my son to an in-patient psychiatric care unit. It takes time to process all of that stuff.

Finally, my son spoke via a teleconferencing device with a mental health social worker, who ended up making all of the patient transfer arrangements. The closest psychiatric unit with availability was 45 minutes away by ambulance. Pretty much everyone involved in the system knows that mental healthcare needs are dramatically under-served in our area.

We chatted during the periods of waiting. I read to my son from a book I had on my Kindle. Another son dropped by with some fast food. He shared some videos on his phone. My son calmed down and felt that the crisis might be past. But the healthcare professionals felt that it would be best for his safety and their legal responsibility for him to get in-patient care for a few days. I completely agreed.

As he rode away in an ambulance, I reflected on the anxiety from which my son suffers, which was actually the proximate cause of this self-injury episode. In his TED talk, Andrew Solomon says that the difficulty of clinical depression did not prepare him for the onset of acute anxiety. "If you told me that I'd have to be depressed for the next month," says Solomon, "I would say, 'As long as I know it'll be over in November, I can do it.' But if you said to me, 'You have to have acute anxiety for the next month,' I would rather slit my wrist than go through it."

Solomon describes acute anxiety as being "like that feeling you have if you're walking and slip or trip, and the ground is rushing up at you, but instead of lasting half a second the way that does, it lasted for six months. It's a sensation of being afraid all the time but not even knowing what it is that you're afraid of."

His struggle with acute anxiety caused Solomon "to think that it was just too painful to be alive, and that the only reason not to kill oneself was so as not to hurt other people." It has long been known that those who attempt suicide do so mainly because they feel that they are out of options and have no hope of things ever getting better. It's not that they actually want to die. Researchers also know that many sufferers endure the pain partially due to thoughts of how their death would affect their loved ones.

Perhaps these grim descriptions can help those who don't personally grapple with depression and/or anxiety to understand a little better those who do. Perhaps understanding these issues as malfunctioning brain tissue can help drive a little compassion, and maybe even better research and treatment.

My son didn't ask to have Autism, or the kind of depression and anxiety described by Andrew Solomon. His suicide attempt is not a moral failing. It's an unhealthy attempt to address overwhelming psychological pain caused by communication malfunctions in his brain.

And yet, we need him to be safe. Tolerance of self-harm would be a twisted form of empathy. So I am glad my son went to the hospital, even if our daily visits during the strictly limited one-hour visiting time require a nearly three-hour round trip. Still, I can't help but wonder if there isn't a better way.

Solomon has traveled the world interviewing people who have or who treat these brain disorders. In doing so, he has seen a very broad variety of treatment approaches that have been successful for various people. In one humorous exchange, Solomon tells of a Rwandan who describes Western mental health practitioners who came to the country after the genocide.

"They would do this bizarre thing," said the Rwandan, "where they didn't take people out in the sunshine where you begin to feel better. They didn't include drumming or music to get the people's blood going. They didn't involve the whole community. They didn't externalize the depression as an invasive spirit. Instead what they did was they took people one at a time into dingy little rooms and had them talk for an hour about bad things that had happened to them. We had to ask them to leave the country."

Too often I have defined my son's condition in terms of how it affects me. Sometimes I audibly tell myself, "He's not giving you a hard time. He's having a hard time." That doesn't mean that it's not incredibly challenging to deal with the occasions where he lashes out at others, or when he tries to manipulate others in a desperate attempt to control his environment when he's feeling out of control.

Researchers say that most people who have these types of brain disorders get little or no treatment for them. Undertreatment is especially pronounced among the poor, who tend to accept their condition as endemic to their miserable life situation. Our son is one of the lucky ones who has received psychiatric and psychological treatment for years. But he is also among the massive number of those discussed by Thomas Insel and Andrew Solomon for whom treatment has so far been inadequate.

It's difficult to meet with any psychiatrist in our area. We love our son's therapist, but like pretty much all therapists in our area, his schedule is overloaded. And frankly, I'm not sure if even daily visits with professionals of this nature would fully address our son's conditions. That's why Dr. Insel's discussion about changing terminology so that we can improve the culture, the research, and the treatment surrounding these diseases appeals so strongly to me.

Since this isn't our first rodeo with in-patient psychiatric treatment, we won't walk around on eggshells when our son returns from the hospital, as much as we did the previous times. We will work to integrate him into normal life as much as possible. We will continue to work to get him the best treatment we can. And we will deal with whatever comes. After all, we love him.

Wednesday, August 07, 2019

Adventures in cerebrospinal fluid leakage: part 2




Image result for csf leak

In an April post I discussed my wife's rare (or at least rarely diagnosed) spinal condition known as spontaneous cerebrospinal fluid (CSF) leak. The resulting intracranial hypotension led to severe headaches, tinnitus, hearing disparity, and mental fog.

My post described more than half a year of treatments that required many MRIs of various types, a month of bed rest, and two epidural blood patch procedures. Today I am reporting that all of these efforts and the expenses incurred relative to those approaches haven't helped much.

Curious about what kind of beneficial treatment might be available, my wife undertook some serious research. Eventually she discovered that there are three clinics in the US that specialize in treating CSF leaks: Duke University Hospital in North Carolina, Cedars-Sinai Medical Center in Los Angeles, and Stanford University Medical Center in Stanford, CA.

Doctors from each of these clinics participate in the nonprofit Spinal CSF Leak Foundation. As luck would have it, the foundation was holding its annual LeakWeek conference in early June. My wife took the opportunity to watch many of the online sessions of the conference. She saw a glimmer of hope that there was somebody out there that might be able to help her.

After research and consideration of various factors (including which clinics and doctors are covered by our insurance), my wife decided to reach out to the clinic at Cedars-Sinai. They requested that we provide every scrap of medical record (including images) of any kind for the past 10 years. It took awhile to pull all of those records together and get them shipped to the clinic. Following extensive reviews of my wife's medical records, the clinic agreed to take my wife's case.

This led to numerous phone calls and emails. One day my wife answered a call from the clinic, expecting to speak with a member of the clerical staff. She was surprised to find herself speaking with the lead doctor at the clinic, who is perhaps the world's leading expert in spontaneous CSF leaks. They spoke for more than 15 minutes about the details of her case.

Initially we were told that we could expect to be scheduled for sometime in August for a three-day series of appointments that would include additional imaging, consultation with doctors, and likely surgical treatment. But later the clinic called saying that they had a cancellation in July and asked if my wife wanted to take that spot.

Image result for cedars-sinai medical centerBefore long we found ourselves winging our way to LA. Can you say, "traffic nightmare"? Why in the world does anyone want to live there? (Apparently, more than 10 million people do want to live there.) Our hotel in West Hollywood was, um, better than a Super 8, I guess, although; it appeared to have been built in the 1930s and probably spent many years as a wino flophouse before being renovated. For the rate we paid you could get very fine lodging where we live.

The same day we traveled to LA, we spent many hours at the imaging center at Cedar-Sinai for multiple extensive MRIs. I don't know how late that place is open. Patients were still arriving at the imaging center when we left around 9:30 pm. The neighborhood in which our hotel was located, which was only a mile or so from the medical center, felt uninviting at that time of night.

On our second day in LA we had some time to kill before meeting with the doctor, so we visited the La Brea Tar Pits, which was both fascinating and smelly. (The tar pits are still actively bubbling up to the surface.) We also had some time after the doctor appointment, so we visited the Los Angeles Temple, which was closed for its semi-annual maintenance. But the visitor center was open. Despite these diversions, we weren't in LA for any kind of sightseeing. We only went there for medical treatment.

When we met with the doctor he explained that doing two blood patches at different locations in the spine was likely to permanently resolve my wife's CSF leak issues. At least, he suggested that it was successful for 90% of patients with similar scan results. If it ended up not working well, she would be among the 10% of patients that would require more invasive imaging and probably more invasive surgical approaches. The doctor was confident that if these initial procedures didn't solve the problem, a second round would do the trick.

Image result for bored guyWe returned to the medical center on our third day in LA and spent roughly 11 hours there. I was allowed into the operating room until they were ready to begin sedating my wife. This blood patch procedure was much more intensive than my wife's previous blood patches. Following the procedure my wife spent some six hours lying in various positions that were designed to enhance the healing process. My wife was instructed to go directly to bed at the hotel, only getting up to use the restroom for 60 hours.

That was pretty boring for me. While my main job was to see to my wife's needs, I kept having to escape the room. I walked around the busy neighborhood during daylight hours. Despite the number of homeless guys sleeping against buildings at the edge of the sidewalk as countless people walked and drove by the noisy zone, I was only panhandled twice.

The next day brought a lot of nausea from the general anesthesia and a nasty headache, which we deduced was now due to high intracranial pressure. They said that the procedure could cause high pressure for a day or so. We called the on-call doctor and received instructions for my wife to drink dandelion tea. Fortunately, there was a swanky organic grocery store just up the block, so the tea was easy to obtain. My wife's condition improved the day after that.

Image result for delta boeing 737When my wife got up to get ready to travel back home on our last day in LA, she was doing better. Her hearing disparity was gone. But she wasn't anywhere near 100%. The trip to LAX, the hours in the busy airport, the noisy flight back to SLC (we were seated near the engines), and the drive home in rush hour traffic didn't help her condition. But she was undeniably better than she had been before we undertook the trip.

Unfortunately, within a week, my wife's condition had pretty much relapsed to where it was before we undertook the trip. My wife is apparently among the 10% for whom the procedures didn't work well. To top it off, the bills for the treatment amount to around $100K. The rate allowed by the insurance is closer to 40% of that. Nobody really pays the exorbitant list price. It's just part of the dumb pricing game played by the medical industry. Our portion of the "allowed amount" is plenty, but I'm glad we have insurance, even if they do play pricing games.

The clinic has called and spoken with my wife. They want to let things settle for another couple of weeks before checking on progress again. My wife is under orders to take it very easy. No lifting of anything more than 10 lbs. No twisting of the spine. Lots of reclining. Then the clinic will assess next steps. But we have already been told that the recommendation will likely involve another three-day round that will include more invasive imaging and more invasive surgical procedures.

Image result for crossed fingersWe have learned a few things from this experience. One is that decent lodging in LA can be expensive. But we have heard that there are some decent AirBNB places that are reasonably priced. We will consider other options and pay closer attention to the neighborhood next time around. As to whether another round of treatment will be successful or not, we will just have to keep our fingers crossed.

Update: See part 3 (11/18/19) for the rest of the story.

Thursday, May 02, 2019

What is awesome?

Is anything really awesome anymore? If so, what and why?

Dictionary.com defines awe as "an overwhelming feeling of reverence, admiration, fear, etc., produced by that which is grand, sublime, extremely powerful." Awesome is defined as "causing or inducing awe; inspiring an overwhelming feeling of reverence, admiration, or fear."

Ammon Shea, author of  Bad English: A History of Linguistic Aggravation, notes in this post that awesome originally "referred to feelings of severe fear or dread." It pretty much paralleled the word awful. Both words come from the root awe.

Although the word awesome has evolved to a generally positive connotation, most official definitions still suggest that awe is an overwhelming emotion. But Shea notes that today awesome is often "used as a general purpose exclamation of approval."

When we try to bolster someone's confidence by telling them that they are awesome, we don't usually mean that they are literally astounding or breathtaking. We mean that they're OK. When we use awesome to express mild approval of anything, we leave ourselves with little terminology to apply to true awe.

That doesn't mean that awe does not actually exist. Pretty much everyone has at some point experienced overwhelming feelings of reverential wonder due to an encounter with something truly "grand, sublime, [and/or] extremely powerful." It may have been a natural wonder such as a spectacular waterfall, an eagle snatching its prey, or even a small complex insect. Maybe you listened to a grand musical concert, were present for the launch of a space rocket, or watched a truly astounding athletic performance.

Weber State University professors Luke Fernandez and Susan Matt write in this Standard Examiner op-ed on the topic of the human emotion of awe. After a decade of research, they "find it difficult to say categorically that awe is rising or declining." But they "can say it’s changing shape."

The professors note that while past generations often found awe in connection with nature and Deity, our modern culture is more often awed by its own inventions and technologies. Comedian (and sexual predator) Bill Cosby used to quip that when God created a world and all things on it, he called it "good" (see Genesis 1). But humans create a skyscraper and say, "It's AWESOME!!!!" The extension of this is, "We're AWESOME!!!! I'm AWESOME!!!!"

In "the raw, surging power and ambition of humanity" where we look mostly within our own human constructs and technologies for inspiration, access to the divine characteristic of humility seems to diminish. We become like the brawny bodybuilder admiring his physique in the mirror at the gym, heedless of his own arrogance and limitations.

Fernandez and Matt call for us to look to nature, the god of the modern hippie secularist religion, for inspiration. Most who worship God see nature as God's creation rather than as divinity itself. Indeed, all realms of God's creation, whether they be as large as a universe or microscopic "are kingdoms, and any man who hath seen any or the least of these hath seen God moving in his majesty and power" (see D&C 88:41-48). Nevertheless, nature can inspire awe and wonder. Those who worship God ought to recognize a fiduciary responsibility to care for God's magnificent work.

But a humble disciple should also be able to see evidence of the divine in the works wrought by humans who they believe are created in God's image, including the technologies, aircraft, buildings, and roadways denigrated by the good professors. I doubt the professors have much real desire for a world that lacks these amenities. Like most who believe in actual Deity, they are likely looking for some kind of balance; although, the definition of balance may differ greatly between viewpoints.

So, what about awe? Fernandez and Matt suggest that "we are suffering from what one clever psychologist dubbed A.D.D. — Awe Deficit Disorder." Maybe. But it seems to me that humans are designed to seek out the awe inspiring. Why is Yellowstone National Park crammed with visitors from around the globe each summer? Why do people tune into the Olympics or attend grand concerts? Why do tourists go to the top of the highest buildings in the world? Why was the world saddened by the fire at Notre Dame Cathedral? Why do people pray or attend church? Why do we marvel at the tiny fingers and toes of a newborn?

Perhaps humans seek out these kinds of experiences because their daily lives are so lacking in awe, unlike the earlier generations favorably painted by the professors as living in simpler times and experiencing wonder more often due to their close contact with nature. Or maybe the awe moderns experience isn't as minimal or as awful as the good professors would have us believe. Maybe the book they are touting amounts to little more than virtue signalling to the like minded.

Then again, perhaps we are so surrounded by factors our predecessors would have considered truly awesome that it becomes too mundane for us to experience its wonder.
We cannot dictate to others how they ought to experience awe. What inspires me may not inspire you and vice versa. A hike along the Teton Crest may bring rapture to one and simply rocks and blisters to another. An interpretive dance may inspire awe in one and revulsion in another. Time kneeling at an altar may seem sacred to one but simply boring to another.

While I am in favor of returning the word awesome to its meaning of inspiring overwhelming awe, I suppose that it will continue to be watered down to mean anything mediocre or better. I am also in favor of individuals regularly experiencing true awe in ways that are meaningful to them. I suppose that some of what people find inspiring will mystify me. But that's their business, not mine.

Tuesday, April 02, 2019

Brain drain for real: Adventures in cerebrospinal fluid leakage

A few months ago my wife began experiencing a nonstop headache that became increasingly severe over the space of a week and a half. Having experienced tension, sinus, and migraine headaches with some regularity throughout life, my wife is very familiar with headache treatments and their relative effectiveness. But nothing she tried eased the pain at all.

Eventually my wife began experiencing tinnitus and an odd hearing disparity, along with cognitive fog. My wife visited the local instacare one day when she was at her wits' end. The doctors there said that an MRI was needed but that "they" (whoever that is) don't like it when instacare doctors order MRIs.

Due to my wife's persistence, an MRI of the brain was ordered anyway. Then she called the imaging center and pestered them. Conveniently, the imaging center had a cancellation so that my wife was able to get her MRI done later that evening. We perused the results as soon as we knew they were available and discovered that the observations were consistent with intracranial hypotension.

The information we read online about this condition seemed rather alarming. At this point the instacare folks said that this was outside of their area of treatment and that my wife needed to see a neurologist. But due to the way things work in our heavily regulated, insurance focused healthcare industry, my wife would need a referral from her primary care physician.

The whole reason my wife had gone to instacare was because her primary care doctor was out of town for a couple of weeks. She ended up working with the office staff of one of the doctors who was covering for her doctor. It's a good thing that doctor was not physically within reach when a staffer told my wife that the doctor didn't think the finding was significant. She would have reached through the phone line and throttled the guy.

In reality this doctor isn't a bad guy. Let's just say that he comes across as more detail oriented than patient oriented. And let's just say that my wife was persistent enough to get that doctor to refer her to a neurologist. It still took several days to see the neurologist after taking the first available cancellation spot.

During the visit we were pleased that the neurologist had gone to the trouble to personally analyze my wife's MRI. Since intracranial hypotension is generally caused by a cerebrospinal fluid (CSF) leak, the neurologist carefully questioned my wife to try to determine the cause of the leak. Spontaneous CSF leaks are considered very rare (see National Organization for Rare Disorders discussion). But all indications were that this is exactly what my wife was experiencing.


The neurologist explained that he understood that most spontaneous CSF leaks can heal up on their own. He ordered four weeks of strict bed rest accompanied by relatively high doses of caffeine. It turns out that caffeine's vasoconstriction properties can help alleviate some CSF leak symptoms, as can lying down. Painkillers are completely ineffective for this condition.

My wife felt somewhat OK while lying down and taking caffeine. She could get up to take care of necessities, but she couldn't stay up for long before the nasty headache returned. That was a terribly boring month for my wife. She isn't much into watching TV. She loves to read but the cognitive fog she was experiencing made that difficult.

When a month of bed rest yielded no positive results, the neurologist ordered an extensive MRI of the spine. Upon reviewing the results he ordered an epidural blood patch procedure. In essence, they suck some blood from your arm and inject it into the epidural space of the spine. It is supposed to work like slime in a bicycle tube to form a clot to patch the leak. But it costs $6,000 more than a bike tube repair.

The blood patch was helpful. My wife was soon functional, but far from 100%. In follow up appointments with the neurologist it seemed clear to us that his expertise in my wife's precise condition was quite limited. Our research suggests that this is common. Very few neurologists have knowingly interacted with anyone experiencing a spontaneous CSF leak.

The UK-based CSF Leak Association explains that spontaneous CSF leaks "are not rare, yet are generally under-diagnosed; misdiagnosis of migraine, sinusitis and other headache disorders is common place...." Specialists in the condition believe that it is far more widespread than understood by the medical community and that ignorance of the condition and its treatments is rampant among healthcare professionals.

A couple of months after the blood patch it became clear that my wife was experiencing more CSF leaking. It seemed obvious that another blood patch was needed but the neurologist wanted more MRIs to get a better idea of what was going on. This chagrined my wife. Even with decent insurance, MRIs are not cheap and she couldn't imagine what benefit additional imaging would provide.

Hospitals use MRI machines like cash printing presses. Last year Forbes reported that "the national median network rate for a scan at a freestanding center is $504—a third of the $1,567 rate in a hospital." Which is why hospitals and their industry compatriots work to squeeze out private imaging centers. Moreover, a full set of MRIs covering the brain and the spine amounts to four images. So multiply that $1,567 by four every time my wife makes a trip to the imaging center. Ouch.

Thanks in part to the MRIs and the blood patch, for the first time in our lives we were able to take advantage of the medical expense tax deduction for last year and we're shaping up to repeat that performance this year. That's small consolation. Since you can only deduct the amount of qualified medical expenses that exceed 7.5% of your adjusted gross income, any tax benefit covers a tiny pittance of actual out of pocket medical expenses.

We didn't want to pay for more MRIs but the neurologist would not budge on the requirement for a third round of MRIs. The thinking was that locating the leak source would make the second blood patch procedure more successful; although, the doctor had told us that even with the best imaging they can't find the actual leak location in 80% of cases.

The third round of MRIs revealed nothing new, which made my wife even less happy about incurring the related expense. Still, the neurologist ordered a second blood patch. But when we went for the procedure a physician's assistant explained that the neuroradiologist who was to perform the procedure wouldn't do it until my wife had yet another set of MRIs that were tuned to look at fluids. I didn't even know there was such a thing as a neuroradiologist until that moment.

This fourth round of MRIs revealed a number of perineural cysts (aka Tarlov cysts) on the spine but there was no clear indication of where the current leaks were. The doctor was especially suspicious of a very large cyst near the base of the spine. When we took my wife in for the rescheduled second blood patch, the doctor took us into an alcove that had three large computer screens. He rotated the images around to show different angles and slices so that we could see what he was seeing. He called my wife's case very unusual.

The second blood patch temporarily caused intracranial hypertension. But after a few days my wife was doing much better and was much more functional. In a follow up appointment the neuroradiologist suggested that no further treatments would be helpful unless significant leakage is once again detected.

The doctor explained that my wife must appreciably alter her lifestyle so as to prevent rupture of any of the multiple cysts on her spine. She must avoid anything strenuous and any kind of motion that might cause problems. No riding on bumpy roads. No picking up anything heavy, including small children. Only very light yard work or housework. All bending must be undertaken with great care. Etc.

Even extreme care will not guarantee freedom from problems. It is believed that the large cyst near the base of my wife's spine acts as a CSF reservoir. The longer my wife is upright the more CSF drains into the reservoir, causing brain sagging which results in nasty headache, hearing problems, and cognitive issues. Caffeine can help. But the real thing is a significantly different lifestyle than she has been used to.

We aren't complaining. Many people deal with far worse conditions. This isn't fatal; just unpleasant. We are learning more about spontaneous CSF leaks, perineural cysts, and other factors surrounding my wife's condition. We will see where this adventure takes us.

Update: See part 2 (8/7/19) and part 3 (11/18/19) for the rest of the story.