Five days out of surgery and into Limbo. For the past three days Ryan has had off and on profuse sweating thought to be withdrawals from his medications. Now Ryan and I question whether the sweating is really caused by withdrawals.
Ryan has had constant hook up to an EEG from the probes in his brain. The EEG is monitored by people trained to detect a seizure at any time. If Ryan notices anything odd or has a myoclonic jerk, he pushes a button to tell the people monitoring him. The monitors also have a camera on Ryan to follow his every move, which further helps them to give information about any seizures or incidents.
Nothing has indicated and no one has discussed whether Ryan should push the button when his sweating episodes start. The neurologist put Ryan back on a low dose of one medication once a day in effort to stop what was thought to be withdrawal sweating. When that only helped a little bit, the neurologist upped the lower dose to twice a day. After tomorrow’s dose, the doctor intends to start tapering the medication again. Yet Ryan continues to have episodes of profuse sweating.
As Ryan and I texted each other after visiting hours tonight, I speculated as to whether his body is trying to reject the foreign probes in Ryan’s brain. Almost like a body would reject a transplant or implant.
Then I decided to search the internet (with the knowing that it is not always reliable). I was surprised to find multiple publishing’s of a 2019 article about a man who had episodes of profuse unexplained sweating episodes for three years when the doctors finally diagnosed him as having temporal lobe seizures. The article went on to say that sweating can be an aura, or sign, that a seizure is on its way.
I also found on Epilepsy.com’s Community Forum, people chatting about autonomic partial seizures that cause extreme sweating.
Sweating has never been an aura or sign of a seizure for Ryan. In fact when he and I first started dating I would get concerned because he would do activities that should cause sweating but didn’t. He seemed to have more myoclonic jerks when he didn’t sweat.
Now Ryan has probes in his brain that were placed in areas of his brain that could trigger a seizure. No one said the seizures triggered would present as they had in the past or that Ryan might start having auras he never had before.
Is this profuse sweating really withdrawals? Or maybe Ryan should start pushing the button to let the monitors mark when it starts and see if there is any change in the EEG readings. Limbo day six will bring new discussion with the neurologist.
No change. No movement. Day four into waiting for seizures with the information needed to move forward with the next steps to know how best to treat Ryan’s epilepsy.
Ryan’s usual trigger is sleep deprivation. However he usually is moving and going about his day to day routine without much rest in before the seizure will trigger. Here, in the hospital, he doesn’t have his usual routine and isn’t able to go too far from the bed.
Even though physical therapy didn’t come today, Ryan was able to do some stretching and squats. However, that was about it in the way of movement. He still had excessive sweating from withdrawals, which didn’t help.
Maybe tomorrow, after he has another tweak in his medications, Ryan will feel more like getting out of bed throughout the day and getting his body moving. Through the movement on lack of sleep, Ryan’s body will not get the rest it has been to prevent a seizure.
It’s been four days in limbo. With movement I would bet we will see movement. Let’s see what day five brings.
Here we are the third day out from surgery. While it seemed like Ryan had some progress today, it wasn’t the kind he ultimately needs.
Yesterday ended with Ryan having withdrawal chills and sweats from the stopping of his seizure medications. Overnight did not get much better. Ryan’s sweating became constant. It was so bad the nurse had to change his gown and sheets at least twice. On top of that he was nauseous again.
By the time I got to Ryan today they were treating him with ice packs and a room temperature in the 50’s. The nurses continued to take his temperature and it was normal.
The doctors were so concerned about the withdrawal symptoms that they started Ryan back on one of his seizure medications but a very low dose. While the doctors need to see a seizure, they need to be sure it is not a withdrawal seizure but a true epilepsy related one.
It is difficult to say if it was the seizure medication he took this afternoon or if it was pure coincidence but the sweating finally stopped. Yes! Progress!
Now we need to see progress towards the next steps and surgery. The surgeon tentatively set a surgery time for tomorrow but it was unclear what type of surgery would be done because Ryan still needed to have one or more seizures. Today the surgeon said that the surgery time for tomorrow will be pushed to next week.
So that gives Ryan the weekend. He is so sleep deprived it is difficult to believe he hasn’t triggered a seizure. I speculated that maybe he needs to move around more. The physical therapist today helped Ryan to do some squats. It seems more activity like that on very little sleep should do the trick.
Whether or not he tries this, he can’t force a seizure. We never know when he will get one outside of the hospital so it won’t be any different inside the hospital. The progress needed is not there yet but it will…with patience.
Two days out of surgery brought withdrawals for both Ryan and me. My withdrawals involved a very restless night’s sleep without Ryan at home with me. For Ryan the withdrawals were from the stopping of his epilepsy medications.
Ryan has stopped taking all of his supplements the night he got the call that the surgery was moved from February 2021 to June 15, 2020, only a week away. The doctors told him to take his last dose of Epidiolex the night before the surgery so he went into the surgery this past Monday having taken only two of his three medications. Monday night he had the two medications again. Tuesday morning the doctors reduced his dosages on the two medications. Tuesday morning was the last time he took any seizure medications.
So it should have been no surprise when I visited Ryan today. I could tell immediately that something was off but I couldn’t tell what. He even complained of feeling horrible but he couldn’t pinpoint where or why.
I thought at first that maybe he was having a tonic clinic seizure on its way. He had woken up in the middle of the night with a myoclonic jerk. He also had a myoclonic jerk when physical therapy came to get him out of bed. However, two jerks were not enough to give the doctors the information they need. Nor are they enough to be a sign of a seizure coming.
Later in the morning Ryan started saying he was cold. At first I agreed because the room was quite chilly but then Ryan got to the point where he was shivering like crazy. His temperature was normal. The room thermostat was moved to a warmer temperature. The nurse brought Ryan warm blankets.
No sooner did Ryan get warmed up when his body went the opposite direction. He was hot. He was shedding his blankets. I turned the thermostat back down.
It occurred to us that he was going through withdrawals. The medications he had been taking for so long that were suddenly cut off were finally leaving Ryan’s body. There’s no telling how long this withdrawal process will be but Ryan indicated in his good night call that this cycle continued after I left.
As with some withdrawals and detoxes, this too might cause Ryan to have a seizure. The nurses are concerned enough that they have asked him not to get out of bed any more tonight.
So maybe tonight he will get the seizure he needs to move on with the next phase of this process. I know he will be safe whenever it is because someone is always watching his EEG readings and watching him through the camera that follows his every move in the room.
In the meantime, I will try to get some rest despite my Ryan withdrawals. Hopefully Ryan is almost to the end of his medication withdrawals. Day two of Limbo equals withdrawals.
Ryan’s surgery yesterday was a success. The surgeon inserted 13 probes into Ryan’s brain. The probes are held in by “bolts” on the outside of his skull. The bolts also feed the wires to the EEG machine, which monitors Ryan’s brain activity. And now we wait…
And we wait… we wait for seizures. The seizures will help the doctors to decide whether Ryan is a candidate for surgery, an implant, or neither. The doctors would like to see at least three seizures before making any recommendations but there is always the possibility that one will give them the information they need. Also, Ryan has been presenting in the past with both focal and generalized seizures so the doctors may want to see at least one of each type.
And we wait… they have already started taking Ryan off of his medications, which should cause him to have seizures. Ryan has his last doses this morning so tonight he gets nothing in the way of seizure medications.
And we wait… while we wait Ryan has to deal with the pain from the insertion of the probes. They are giving him a variety of pain medications depending on the intensity of the pain at any given time. The pain varies by the minute.
And we wait…but at least Ryan has had a lot of company today whether he likes it or not. The nurse comes in every hour. The neurology team made rounds. The hospitalist made rounds. Ryan even had evaluations by a physical therapist, an occupational therapist, and a speech therapist. It doesn’t look like the therapists are really needed given the great physical shape Ryan made sure to get in before all of this.
And we wait…we are in a limbo anywhere from one day to two weeks to as long as it takes to have the needed seizures and get the needed information.
No words can describe today. So if our followers can stick with it and handle the pictures, here is how the day went:
1:30 a.m. – I wake up and struggle to go back to sleep. The alarms are set to wake us in two hours.
3:00 – I wake up from a half sleep to hear Ryan moving around. Apparently he couldn’t sleep either. He starts his morning shower and second required body sterilization. This is for the surgery, not for COVID. He had to shower and sterilize before bed too. He was required to use clean wash clothes and towels each time. We also had to change the bed sheets before going to sleep.
3:45 – Ryan is done sanitizing but is now having myoclonic jerks. Go figure. He didn’t sleep well, is stressed, and has had to be off of his supplements all week. He takes a rescue med and his morning meds.
4:30 – We are at the hospital about a half hour early. We had our temperatures taken and received our hospital approved masks. Now we wait for someone on the surgical floor. We can’t find anyone yet. Maybe at 5:00.
5:10 – They are getting Ryan set up in the room. Once he is set up I can go back and sit with him until they take him into surgery. They have the surgery room blocked until 2:30. What?! Nine hours from now?! I realize from talking to the nurse that the whole time is not actually surgery time. Rather, they will do scans through the process to make sure everything is in place correctly. I am assured that once he goes into surgery they will call me every two hours with updates and I will get to talk to the surgeon face to face when everything is completed.
6:15 – I am finally back with Ryan in pre-op. He’s looking quite lovely with compression socks on, an IV in his arm, and betadine in his nose.
7:00 – Met the nurse who will be in the operating room. They won’t know how many needles they will use until they start. Ryan will be under anesthesia from the time he goes back to the operating room. They will still need to intubate him and do all of the other necessary prep work while he is under but will call me when procedure actually begins and then every two hours after. The best part of talking to the nurse was when she thanked Ryan for having his hair buzzed. Oh, and both of us getting warm blankets to wrap up in while we wait. Ryan and I are expecting another hour before they move him. The surgeon and anesthesiologist still need to stop by. Plus they are still waiting on the room to be ready.
8:21 – We have seen all of the doctors and they took Ryan back about 15 minutes ago. After everything this morning I had to get coffee and food (mainly coffee) to prepare me for the rest of the day. The day’s schedule is still very unknown. As we learned earlier, the amount of probes inserted will depend on what the surgeon decides at that time. In between inserting the probes, they have to scan Ryan’s head to make sure everything looks good. The whole thing could be finished as early as 11:30 (3 hours from now) or as late as 2:30 (6 hours from now). Ryan will be under anesthesia the entire time. That might be the part that scares me the most.
11:00 – I spent the past couple hours taking my mind off of things through work. I attended meetings via my computer. Even before COVID I was equipped to work on the road if needed. Today it’s coming in handy. My workmates were surprised I was in the meetings but like I said to them, “what else am I going to do? Sit in the waiting room wringing my hands until he’s out?” In the middle of my first meeting my cell phone rang with the hospital on the caller ID. It was the OR nurse apologizing that she forgot to call when they started the actual surgery. Turns out they started inserting needles/probes around 9. She reported that Ryan was doing great. Whew!
11:35 – Ryan is out of surgery. I am now waiting to talk to the surgeon to get the specifics. I won’t get to see Ryan until they transfer him to ICU. Hopefully that’s soon. I can’t wait to see him.
11:45 – That was quick…already saw the surgeon. They found places of interest from the beginning due to abnormal brain activity. Lucky number 13 needles/probes now in his brain. He will spend the next few days in ICU to monitor for a seizure. Then more decisions to be made.
1:45 p.m. – The past two hours have been spent notifying everyone of Ryan’s progress. I am overwhelmed by the support we have received. In the meantime, I am ready to see my husband! Yet I wait even longer.
2:30 – Finally was able to see Ryan. He was still in the surgery recovery and about to be moved to his room on the ICU. He will stay on the ICU while they monitor him and get the information they need. He complained of pain. He said he didn’t expect it to be so bad. Hopefully once he sleeps off the anesthesia and gets some food in his system he will feel better. I beat him to the ICU but I think he should be in and settled in his new temporary room by now. Time to go visit again.
4:05 – Poor guy. He’s in pain. He’s nauseous. He is falling asleep while trying to eat something. Given that he hasn’t eaten in about 24 hours, he would probably be better off having food in his stomach. I’m sure by tomorrow he should be feeling better. At least that’s what I keep telling both of us. I’m trying to get myself to believe it too.
5:35 – Ryan is finally sleeping. He wakes up every now and then and tells me his head isn’t hurting as much. There is not much longer for visiting hours. I’m going to hang out until he gets a chance to eat (I just ate cafeteria food for dinner). Oh, and perfect timing, his food just arrived. Once he eats I’ll head out and let him rest. Maybe I’ll get some rest too. It’s been a long day for both of us.
One day to go and it is all about dotting I’s and crossing T’s. Keep calm, take a breath, I’ve had to tell myself this and tell Ryan this.
Tomorrow is the big day. It’s Ryan’s brain surgery. Well, the first part of the brain surgery. The doctors will put their robotics to use by placing probes in Ryan’s brain so that they can monitor him and make some treatment decisions.
Many people have followed our story up to this point (and thank you to all of you for your support, concern, and interest). Our story through the preparations, through coronavirus, through the postponement, and currently through our one week freak out due to the surgery moving up again.
We are still faced with the unknown related to the surgery and recovery. We are also faced with issues of the still present coronavirus.
Just before the surgery was postponed due to COVID, Ryan recorded a video directed to Our son and a video directed to me. I was never able to watch either. Today, I finally watched the video for me and found it just on point today as it was three months ago.
As we finish the day with some crazy prep work ryan needs to do and prepping the rest of the household for tomorrow, I thought it only appropriate to share these videos again.
Be prepared, they are emotional but keep calm,..only one day to go.
Yesterday counted three days to go until Ryan’s brain surgery. Yet somehow the day flew by and now we are at two days to go.
Don’t get me wrong. Day three days to go was a great day. A productive day really. Ryan got the last of his pre-surgery lab work and hospital registration completed. We finished the last of our at home preparation. Ryan and I even ended the day with some amazing massages that Ryan arranged when we still thought his surgery would be in February.
It is very odd some of the things Ryan did the week before he got the call moving up the surgery. First, he scheduled our massages as if he knew that this weekend would be our last family weekend until whenever he gets home from the hospital. (Two weeks? Two months? It all depends on the results from monitoring after the first surgery)
Then, he decided to shave his head. This in itself is not unusual because he has been doing it since before he was supposed to have the surgery in March. What was unusual about this time was that after he did it he announced, “this is the last time I am shaving my head before surgery” to which I responded, “the surgery isn’t until February.” Two days later Ryan received the call from the neurosurgeon’s office telling Ryan the surgery is a week away.
It is almost like Ryan was sensing that call coming. Now the days are speeding by.
Day two days to go will likely go the same as yesterday. We are using the day for quality family time and Ryan has some house projects he might work on as well. While I like these days going quickly so as to not have time to dwell on the surgery, I also want them to slow down so that I can cherish this time together as a family.
I know there will be more quality family weekends in the future. It’s just a matter of when. There is so much unknown going into this surgery including, in part, how long will Ryan be in the hospital and how long he will he need to recover.
The answers will come…eventually…but for now I’m ready for a little more slow down and once Ryan is admitted into the hospital the time to go by fast until he is home again.
My fear really goes back to yesterday. Ryan shared with me his disability paperwork from his doctor for work. He is not estimated to return to work until mid-September. He is expected to have marked limitations in some functioning. I read the limitations and suddenly feel like I am reading a client’s application for government disability benefits. Worse than that, I think it would be a successful application.
Brain surgery… those words by themselves have scared both Ryan (a/k/a ROC) and me. However now that the brain surgery is a reality (again), they do not seem to scare me as much as the prep work. Today with four days to go until Ryan’s brain surgery, I am more scared than ever.
I remind myself that the doctor has to put the worse case scenario because we just don’t know. Ryan is otherwise healthy, he is in shape, he has been preparing his body and brain to be resilient and to recover quickly and well after this surgery. There is also the possibility that Ryan will end up needing only one surgery and not two. There is the best possibility that he comes home epilepsy free, seizure free, and complication free. The doctor is writing what he has to and not necessarily what will actually be.
So why can’t I snap out of this fear and need to cry? Ryan and I deal with the stress differently so while he ran around snappy and rejecting my offers to help with the preparations he was trying to do, I had to shut down in fear of saying something I would regret. I mean really, I can’t be mean right before a major surgery like brain surgery!
The events of yesterday kept me up all night. Tossing and turning all night if not wide awake. At some points I found myself crying. The dreams I did have were definite stress dreams. I got out of bed this morning feeling miserable.
When my eyes are finally open, I check Facebook to find a post from Ryan. He talks about being scared but keeping a brave face. He is more than a brave face…he is entirely brave. Maybe it’s the soldier in him. Maybe it’s what made him a soldier. Either way, I am trying to feed off his being brave and not the fear inside both of us.
We can do it. We will make it. Four more days and struggling but we will push through this countdown to surgery and the count to recovery.
As many remember, my husband Ryan (a/k/a ROC) was scheduled for brain surgery in March of 2020. We counted down the days, we checked things off the preparation list (bills, time off work, childcare, house maintenance, etc), and we waited. We felt ready but we were still nervous and scared. Mostly, it was a fear of the unknown.
What we never felt was that this surgery was elective. It seemed essential in order to get answers as to where in Ryan’s brain the seizures are stemming and maybe even what’s causing them. The first surgery, involving the insertion of probes in Ryan’s brain, will allow us to get these answers so that we can know how to treat or what kind of surgery would help stop his weekly to monthly tonic clinic (major) seizures.
With five days to go until this essential, life changing surgery, the countdown was brought quickly to a halt and the fear turned to tears. We were shocked to learn that this critically needed surgery in our eyes was considered elective. We couldn’t believe that it was canceled due to COVID-19. To make things worse, the surgery was postponed to February 2021.
The two and a half months that followed cancellation day have been a roller coaster for both Ryan and me. Despite the ups and downs of dealing with the cancellation, having to work full time from home, and all of the usual day to day stressors, Ryan seemed to have found a natural way of treating the epilepsy. Things were working so well his tonic clinic seizures turned into more like myoclonic jerks (and much less frequent), he was able to reduce his medications a little (with the oversight of his doctor), and we even considered if he could keep it up he might not need the surgery.
There was no sense in counting days until the surgery anyway. It was almost a year away. The plans made were put on hold or changed. We made new plans. Anything can happen in almost a year’s time.
Then it happened, the phone call came. The surgeon’s office called to see if Ryan was ready to have the surgery on Monday. Monday! One week from the date of the call! The frantic has now set in at our household.
Yes, we realize this is a good thing. We want to get answers. We want an end to Epilepsy. But wow, a week to prepare?! We went from 6 months time to get ready to 10 months time for preparation to one week.
Finally settling into reality, the hospital prep lab work has started and plans put on hold are being put back into action. It is now time to start counting down…again…five days to go.