My story: Living with EPM
When I sit down to write my post, I never have a true idea as to what is going to be written. There are several things that float through my head each day that I believe would make an excellent topic to discuss. At some points, I even will start to write ideas down on pieces of paper or this small notebook that I’ve been carrying around, but eventually through out the course of a day or several days those things become “misplaced” and my ideas become scattered.
I’m still looking for the notebook that I lost a week or more ago.
Anyway, I’m sure you’re dying to know what happened once the diagnosis of EPM was made. Did they start rounds of drugs, tons of tests, hooking me up to machines and monitors?
I had another IV started when I was first admitted to the neurology department.
Tom left early in the afternoon because Izabel was tired, and he needed to get settled into the hotel.
The doctor, who was the resident who first told me that I was right, told me that they would give me anything I needed. He told me that the main doctor that was going to see me would get me everything I needed.
The other doctor that was supposed to come from home to check on me got there around midnight or a bit after.
I was exhausted but I couldn’t sleep. No, it wasn’t the kind of you can’t sleep because you’re waiting for Santa kind of sleep, but the I really want to sleep but can’t sleep. I had only had three hours or sleep in the past 48 hours, and every time I closed my eyes, I would see blackness and my mind would melt away but I wouldn’t sleep.
It was exhausting and frustrating.
So the “head” doctor (seriously can’t recall the name for them right now..not resident..ugh, anyway, the doctor who is supposed to be in charge of the other doctors, but isn’t the chief) was there. She told me there’s nothing they can do. There’s not any treatment, but because I had EPM, she felt I was going to make a complete recovery.
The doctor told me that I would receive my glucose treatment, ambien for sleep and pain medications for the ongoing splitting headache. However, a hour and a half later, none of that had been provided. I paged again at 3 am and by 6 am I started to scream and cry.
I was literally screaming and crying at the nurse. I knew it wasn’t her fault, but WHY WAS I IN THE HOSPITAL??!! I had a HUGE bottle of percoset that I could take if I was home to help temper the nausea inducing headache. It was a headache that I had for OVER THREE DAYS. It was the kind of head that made blinking painful. My stomach felt like someone was hollowing it out with a spoon. I COULD NOT sleep. I was at the point of utter exhaustion.
I could have had treatment if I had stayed home. I would have been able to call my hematologist, continue to take my percoset which at least helped dwindle the mind numbing pain.
WHY was I in the hospital if they were going to give me LESS treatment when they knew that I had a life threatening injury?!!
I was ready to leave! I called Tom to pick me up. I was at the point of becoming hysterical.
Around 7 am, the very disgruntled resident came in. What do you want!?
Pain medications, IV glucose, and ambien.
Anything else?!
No.
Fine.
He left and about an hour later they gave me something for the headache. Literally, before they wouldn’t even give me a TYLENOL.
None of the nurses or doctors would tell me why.
(It turns out that they didn’t want anything to impact me physically. They didn’t want the pain meds to cause any complications neurologically. They didn’t want the glucose to destabilize my sodium levels, and they wouldn’t be able to give me Ambien because it was now early morning. It would have been nice to find that out earlier.)
I was not going to be able to sleep for another 14 hours.
Around 8 am another neurologist came in. He had about 6 to 10 medical students with him. I didn’t mind that. After all, I want to be a doctor. I understand how it works.
What I did not understand and still do not understand is how this doctor acted. I thought this was a doctor who was going to be able to explain things to me. He would be able to answer my questions. He would be able to tell me what was going to happen to me.
Instead he started to examine me. He had me do several tests. He was testing my reflexes and balance. He did not use my name. He would say things like: notice how the patient’s xyz reflex is abnormal. This is a sign of xyz abnormality. The patient’s xyz reflex may or may not be indicative of xyz. It might be that the patient is just hypersensitive to the motion. Could you please stand up and try to walk over here?
I really thought that at the end of these tests he would then explain what they meant to me. I thought, at some point he’s going to send the students out of the room and then address me personally. He would let me know what was going on.
I didn’t stop to ask him questions because I didn’t think he would leave and not come back.
After I tried walking across the room, tilting to one side, almost falling over, he and the students left. I kept waiting for him to come back. I could hear him discussing my case further in the hallway, but I couldn’t understand what he was saying.
This was one of the worst feelings I have ever had. I felt that this guy had the answers. He knew what was happening to me. He saw abnormalities in my movements and he would be able to describe to me what was going to happen.
Instead, I was a specimen. I was not a person, but something to be studied. I was an “it”.
I was at a loss. When I stayed at this same hospital about two weeks earlier for my pituitary surgery, NONE of this happened. I didn’t have ANY complaints regarding my stay. The nurses were amazing. My doctors were fantastic and caring. I had NO idea that things would be different when I came back for the EPM.
This type of “non” treatment continued the entire time I was there.
I was not allowed to go to the bathroom without an escort due to my balance issues. I was EXTREMELY happy that I didn’t have to be catheterized, use a side bed potty or a bedpan.
I demanded to just use the regular bathroom, but there was the stipulation that I had to have a nurse walk me there. I would call for the nurse and she would not come. I would page and 15 minutes would go by, so I would page again and another 15 minutes would go by. At this point, despite the pain medications and the mind numbing headache and fatigue, I was able to unplug my leads on my own, and roll my iv bag around to get to the bathroom.
You can only hold off using the bathroom for so long. I made the mistake of waiting to call the nurses until the point of when I had to go to the bathroom.
I was having issues with walking, but I made it fine to the bathroom and back.
Of course, once I got back into bed and all of the machines plugged back in, the nurse came in.
I have to stress that with my first stay at this hospital (it was a different ward), the nurses were extremely attentive.
A little while later, my neurosurgeon that handled my pituitary surgery came into my room.
God Bless this man! He was awesome. He told me that there was no way to tell how this thing was going to workout. He told me that a 1/3 of the patients made a complete recovery, 1/3 had continuing health issues, and 1/3 got worse.
He explained to me that there were no guarantees, but it was important for me to stay optimistic. He explained that the areas that were effected were the “best” areas in the brain to be effected. The pontine area is the control center in the brain. It is an area that directs signals that the rest of your body produces to the outer regions of the brain for processing.
If you’re injury is here, then you have a greater risk for going into a coma, or developing locked in syndrome or having a much higher risk for dying.
I really trust my neurosurgeon and even though all of the doctors at that point told me honestly that no one there had ever seen a case of CPM/EPM, I felt confident that my neurosurgeon had the most current and correct information. He told me that there was nothing that could be done. He told me that there were no treatments that could be used. I would just have to wait and see.
I was worried. I was scared, and I was alone. I started calling my friends and family. I wanted to reach out to them because I had NO real idea what was going to happen. I could become paralyzed at any moment. I could lose my ability to speak.
I wanted to be able to tell my family that I love them encase I wouldn’t have that chance later.
It was hard. My heart was breaking.
If I knew what I know now, I wouldn’t have been in this situation. I could have stopped it from happening at all. I could have reversed the EPM damage by having hyponatremia induced again.
No one should EVER be in this situation. There is no reason why someone should live through this.
I hope you will help prevent this from happening to someone else by spreading the word regarding it. You can make a difference in someone’s life.
More to come later.
Hyponatremia and Central Pontine Myelinolysis 