Let me start by saying, while some may do it differently (even Mike at times) or not agree with sharing so much, I choose to be transparent about what Mike is going through because there are SOOOOO many people out there like him who suffer each and every day. If reading about his story helps just one person be able to get help they need, then it's worth it. The journey he has had with Chiari Malformation, Intracranial Pressure, Hydrocephalus, Syrinx's in his spinal cord, and the pain that comes with it has not been easy and is so misunderstood by most doctors. But we have learned that sharing and talking to others who live it too gives us hope that all will be well if we just keep pressing forward.
Now... for the update...
What a week! It started Monday when Mike woke up feeling not well AT ALL! He was experiencing dizziness again, was way off balance, hands and feet were numb/tingly, and had yet another massive headache. He was either about to have an "event" or he had one overnight. We just happened to have an appointment that morning with his seizure doctor at Mayo so I wasn't too concerned, I knew she'd assess him there. The ride to Mayo was AWFUL! On more than one occasion I thought we were going to have to stop (it's about an hour drive) because his dizziness was so bad. In the parking lot at Mayo he took a Meclizine in hopes of stopping the world from spinning around him and we slowly made our way up to 5W.
We knew going into this appointment that she was likely going to put him in the hospital for some more intense seizure monitoring even before the way he woke up. We prayed about being able to make a decision on whether or not to do it the night before in group. After Dr. N saw Mike and talked to us a bit about how he's been she gave us our options... continue to wait and see (which clearly wasn't working and he couldn't hide that from her) or an inpatient stay. She really felt that the inpatient stay was the only way they were going to see for sure what was going on. Mike was feeling so bad that I don't think he really knew what he was agreeing to, but he agreed.
We finally got insurance approval Tuesday morning (I HATE INSURANCE) and he was admitted around 1pm. The plan was to decrease the only anti-seizure med he takes and try to stress his body to have an "event" (they call seizures "events") while all hooked up to a 28 lead continuous EEG, 5 lead continuous heart monitoring, 24/7 video and audio surveillance of him. They had safety precautions like I've never seen before! Poor guy was belted and locked in to a bed with padded rails at all times unless I was in the room or a nurse was with him. I really thought he was going to turn and run when he saw it all!
You can see the padded rails on the bed Paige is sitting on and the white strap across the bed is the belt that LOCKS when he was in the bed! If you know Mike... you know he's a TAD claustrophobic! LOL! ,And just to add to the joy, if he had to get up for anything he had to be harnessed and attached to a walking system that was either on the ceiling (in his room) or portable (when he was walking in the hall).
The first 48 hours were pretty boring with nothing happening other than a bunch random testing. Thursday afternoon I was supposed to work late, but ended up leaving early to go to the hospital. I was also supposed to take the kids with me, but something told me not to and I called Jen to go get them from home and take them to her house. At about 3:30 we got Mike up walking the halls in the contraption above with his nurse. He did probably 20-30 laps around the unit and then went back to the edge of his bed. Sitting there he said his hands and feet felt funny, but told the nurse he was ok other than his headache was starting to really be "cranking". She got him locked back in bed and then the EEG tech came over the speaker and asked him to breathe in/out fast through his mouth for 3 minutes. Midway through it things started to get funny. I looked down at my phone to read a text that just came in from John Williams... it was 4:18pm. At 4:20pm it happened... I replied 4 words to John... "pray NOW, more later!". Within SECONDS of the whole thing starting the alarms were all going off and the room was flooded with nurses, he was totally unconscious by then and not responding.
When Mike finally came to they started asking him all kinds of questions. One of the nurses told him to remember the words "purple donkey" and Mike replied with "why the hell do I need to know that?"! That's when I knew it was over and he was ok. Once they had him stable he slept for the next several hours and then had another smaller spell around 6pm. It was such odd mix of emotions... we had been praying for him to "put on a good show" so they could get what they needed, but it was so hard to watch! I called a friend I work with to tell her I would not be in the next day and ended up just sobbing over the phone to her! The adrenaline had just let loose!
We also learned later that same night that his EKG earlier in the week wasn't quite right. I questioned it, but the doctor didn't seem to think it mattered. We didn't worry too much about it yesterday because Mike's seizure doctor was coming on the unit today for her 7 days on in the unit. This morning she came in and spent a great deal of time with us going over everything they found during the week.
First and foremost, he is not having "epileptic" seizures. They are "atypical seizure events" that are being caused by the pressure and pain in his head. No real surprise to us. She also went over everything else and gave us a good plan moving forward.
1) He will follow up with cardiology within the next 2 weeks to review the EKG findings and decide what (if anything) needs to be done and if it's playing any part in his constant headaches. The first neuro he had most of the week didn't seem to think so b/c there were no changes on the EKG strip during the event. But his doctor acknowledged that it does need looked into. The EKG shows mostly electrical stuff that can be benign, but it also indicates a branch bundle block that will at the very least need followed from this point forward for changes. And, common sense says if you're heart isn't beating the way it should and not pumping blood the way it should, you could have a constant headache.
2) We are to follow up with his primary neurologist this week. Chances are he will want another spinal tap to get an opening pressure to determine if that has any role in this at all. If it's normal, they will likely put Mike BACK in the hospital for a 3 day inpatient stay of a DHE protocol to try to KNOCK the headache totally out and then try to adjust or better manage it on his meds in hopes of preventing further events. If the pressure is indeed high and he gets some relief again from the tap, we may opt to pursue a 3 day hospital stay to do a 3 day lumbar drain to see if a shunt or something like that would help. We will have to talk it all through with his primary neuro and go from there. Either way, she said another stay may be coming within the next few weeks.
3) We will follow up with her in a few weeks but at this point, she is not going to add any seizure meds because they aren't a typical seizure or epilepsy. No reason to add more meds if a seizure disorder isn't the cause. The meds would be useless. If he has any more events at home I am to grab my phone and video tape the whole thing and then take it back to her. He also has to monitor his weight daily now because the one med he's on has a side effect of weight gain and fluid retention which is not good for his heart or body. If it starts to go up rapidly we have to contact her or his primary neurologist to make changes.
So, she gave him his walking papers and he was a happy man!
All in all.... it was a sucky week... but we have some direction and know definitively it's not epilepsy or a true seizure disorder. They do know for sure now that they have to get the pressures down and headaches under control to keep these events from happening which is way easier to do than managing a lifelong seizure disorder.
To those of you who also walk the same path he is walking, you are not alone!
To those of you that read all of this, prayed for us, or have helped in any way... thank you from the bottom of our hearts for walking this with us!
** Some have asked again how they can help. Loving the Lyons Family Fundraiser site is still set up from the garage sale/silent auction that was held last fall.
