My eyes! MY EYES!!

Ok I know, last time I made it seem like I would be updating on time. Well, it's hard to post when you are having trouble with your vision, and I'm a liar (no I'm not, or am I?). 

Also sorry if there are typos or grammar mistakes. I've been having difficulty with finding these. My attention to detail isn't so great right now. Also my attention to typing. I don't, however, mind if you tell me about them (in a nice way of course) so I can fix them. Now don't go crazy on me.

Anyway last time I mentioned I had a doctor's appointment with my surgeon coming up. I had that appointment and they told me basically they felt everything was good from their point of view, and I needed to be seen by an opthamologist (I was still having vision trouble), and I needed to follow up with my neurologists for my head pain. I broke down during this appointment, because I began to worry people were giving up on me, and they would eventually believe I was faking my blurry vision and pain. My neurosurgeon assured me this was not the case, but I still continued to cry from exhaustion with everything. I was having difficulty with my speech, memory, walking (I had experienced numerous falls that past week), I had gained 15+ pounds from steroids, and my vision and pain were not getting better. The nurse practitioner talked to me about my concerns and felt that most of these were side effects of medication. She suggested trying my Scopolomine patch again (a patch I had used for a while after surgery to help with nausea. I had been off it for a week or so once they had started me on the diuretic). She felt this would help my unsteady gait, and maybe some of the nausea from the vision issues (and it did). She got us set up to be seen with the neurologists and said she would see about getting me into the neuro-opthamologist I had seen my last hospitalization. 

That was a Thursday and by the following Sunday I felt my vision was getting worse. I was having trouble with close up vision, for example I had difficulty reading a menu at a restaurant and had to hold it further away. I experienced the same problem with my phone and computer. I wrote my nurse practitioner an email hoping this would mean she could get me a quick appointment. She wrote back Monday saying I needed to go to the ER. My mom and I debated going, because we were worried it would be just a bunch of needle sticks and no answers, but the nurse practitioner convinced us by saying this would help us get seen by an opthamologist. 

We arrived at the ER and they did numerous visual tests, mainly reading the eye chart from 20 feet away, which I was only experiencing minor difficulty with. I could see at 20/20, but things weren't clear. I tried to explain this and gave my examples, but it seemed to go no where. Doctors either weren't understanding me (due to my stumbling speech and word-finding difficulty) or they weren't listening. The neurologist said I seemed fine (even though her medical student was the only one that seemed to understand my problems), and the ER doctor said they were discharging me. She promised me that I would be seen by the neuro-opthamologist the next day.

On Tuesday I woke up and discovered I could not read anything close up. It was completely blurred. In order to make anything out I needed to hold everything at arm's length. I got a call from the neuro-opthamologist's resident, saying they didn't feel I needed to be seen. I told the resident that I did need to be seen, I could not read anything, and besides that my surgeon wanted me to be seen even before my vision got worse. I received other calls that day and felt like I was negotiating with them about whether I needed an appointment. Finally the ER doctor, from the night before, called to make sure I had gotten an appointment. She seemed upset about how they were treating me and told me she would do what she could to help. I appreciated this, especially because the night before she had told me that today was her day off. Finally I got an appointment for the next day.

This list I brought into my appointment

This next part is about how not to be a doctor, and how not to treat your patients.

My mom and I were worried about this appointment, because of how difficult it was to make them realize that I needed it. I went in and received a test of my peripheral vision by a nurse and waited to be seen by the neuro-opthamologist. He and a resident took me back into an exam room and did some basic tests (read the eye chart from far away and up close, follow my finger). He made a few remarks that took us by surprise. He laughed and said, "Why did you feel blurry vision was a reason to go to the ER?" I replied, "I was told to by my surgeon and his nurse practitioner." He laughed again and mentioned something about that not being an emergency. When he asked me to read the small chart to test up close vision I had to hold it at arm's length and squint. He told me this was all normal and to go home. 

I explained that I never had to read everything at arm's length, like an elderly person, and told him about how I discovered my mom's reading glasses were helping. He dismissed this and said I was fine. My mom interjected and told him that something was wrong and we needed help. I continued to give examples of my vision changes, and how I was nauseous all the time now from not being able to see. 

This is where things got bad. First he continued to say, "You can see just fine". I argued that I could not. Then he said "you know what, I think there is a bigger issue here." I asked what that was and he replied (and this is exactly what he said), "I think this is a psychiatric issue. For some reason you keep making up these issues. I think you have a fear of being independent." 

That's when we got up and left, after of course chastising him for being a neuro-opthamologist making a psychological diagnosis on a patient he barely knew. 

My mom and I were heart broken. We were both in tears from being humiliated and ridiculed by this doctor.  Luckily we were a short walk away from my surgeon's office, so we decided to go there. We found the nurse practitioner and broke down while telling her about the appointment. She apologized for this doctor and told us she would try and help anyway she could. She got me an appointment for an MRI to see if there was any underlying issues and told us to find out if we could see an optometrist, just for a basic work up. We left feeling much better.

A friend of our family, that lives in the Bay Area and had housed me during my internships and was housing my mom during all of this hospital business, mentioned they knew an optometrist. They called their friend and she said she could get me in the next day and wanted to help. This optometrist booked 2 hours for me, because she wanted to do every test she could to help me. 

We went to this appointment and I did a number of tests for my vision (pressure, periphery, eye charts, etc.). She took us to an exam room and asked me to give her a history of the problem. As I told her about the vision issues she looked over my chart and my current medications. She looked up at me and pointed to my neck. "How long have you been wearing that patch?" I told her I had been wearing it off and on after the surgery. She smiled. She explained that often times Scopolamine can cause your eyes to over dilate, which causes blurry vision (especially up close) and light sensitivity. She told me she bet that, along with medications I had just been recently taken off, had been causing my vision issues and that I should see if I could get off the patch and wait a few weeks for that to leave my system.  We could not believe the answer was that simple, and the neuro-opthamologist had missed something so obvious. She also mentioned her tests showed I needed bifocals, and my vision was normal, but for a 40 year-old. 

That night I removed the patch. within 4-5 days my vision drastically improved. I'm still having minor blurry vision, but at far distances, and the optometrist had mentioned my prescription needed to be updated (we are waiting to do this to make sure everything is settled medication wise).

I still went to the MRI appointment just in case, and as expected it came back with nothing on my vision issues. It did show a few lesions in the white matter of my frontal lobe, which my neurologists (whom I've seen recently) explained is related to my migraines. 

Neurology appointment! I got there all by myself by public transport. I was pretty proud of myself.

The appointment with my neurologists went well. I met with someone I hadn't seen before, but he knew my case well. He took me off one of my pain medications, because it was causing me rebound headaches (like my narcotics did). He explained this transition might be painful for a while and he was right. Fortunately my other medications are working better at controlling my pain and in the past week I've only experienced 2 headaches that were beyond my control. 

Everything seems to be looking up, finally! I feel like I am actually getting better now, and that we are on the right track, even with that awful neuro-opthamologist appointment.

I've also recently met a community of brain surgery patients/survivors/clients on Instagram and we have all been sharing our stories with each other, and sending each other encouraging words. This has changed my recovery significantly, because I feel like I found friends who understand my pain. I know people that are a few weeks out from surgery,and people over a year out. They have all different diagnoses, and are all different ages, but we all share brain surgery in common. What I found interesting is the other things we have in common. Most of us have been told we are faking some sort of symptom after our surgery, whether it's pain or blurry vision. We also all seem to be wanting the support and friendship of other who have had brain surgery. Brain surgery is a pretty lonely and emotional recovery. Even if you have great friends and family (which I do), you still feel a need to talk to people like you, and there aren't that many (especially close to your age). I'm glad that we all found each other, even if our only form of communication is filtered pictures and comments. It's nice to know that someone else out there is sharing my experience.

Two ER visits and a hospitalization...Oh My!

I know I know, another update? Yes! I'm trying to catch everyone up that way I can post more stuff right after it happens. Like for instance I have a doctor's appointment with my neurosurgeon tomorrow and I'd like to be able to post about it as soon as possible.

This post is about the two visits to the ER and the 24hr hospitalization that occurred after my 8 night and 9 day hospital stay.

As a side note I'd like to inform you that my head is "not all there" today. I just got back from Urgent Care, due to a sore throat and cough that they determined to be a virus, and my memory is shot. So bare with me.

The first ER visit happened on a Sunday. I was having terrible headaches and none of my medication would help. I had never experienced head pain like this before. On a scale of 1-10 I was at an 8 bordering on a 9. I was taking my pain medication every four hours, but nothing was relieving the headache. I was so medicated that day I was falling in my apartment, and slurring my words. I could barely keep my eyes open. But still, my pain remained an 8/10. 

We called the 24hr neurosurgery line at UCSF and they told us to come in. After a CT scan, some pain meds, and determining it was not due to increased pressure they sent me home. They gave me a prescription for stronger pain meds. That night I slept well, Monday I had a pretty good pain free day, and I slept well that night too.

Tuesday I woke up at 8:00am with a headache so severe I actually called it a 10/10. I never say 10, or hardly anything above 8, when they ask for my pain level, but this headache was definitely a 10. It was excruciating. I couldn't think, I couldn't open my eyes, and every sound (seriously EVERY sound) was painful. I was in so much pain, that while my mom left a message on the nurse practitioner's answering machine, I was packing my bags for the hospital. We headed to UCSF before the NP even called back (she said she was going to send us there anyway).

I was in so much pain my heart rate was 145. They gave me the traditional IV narcotic pain medicine, but I felt nothing. Immediately I was nauseous and dizzy, but I experienced absolutely no pain relief. Then the doctors gave me three different migraine medicines, and finally I felt the pain die down to a 5/10. At this point, though, I was completely out of it. Of course this is when the doctors decide to come in and interview me. I couldn't open my eyes I was so sedated.

They admitted me to the hospital. My nurses and techs recognized me, "Oh Alyssa! You're back? We just said bye to you!" They gave me more migraine medication and a couple sleep aides and I got some rest.

The next morning the decide to give me a roommate. Now, when you are experiencing the worst migraine you've ever experienced the last thing you want is to be sharing a room with a lady with poor hearing due to old age. Why? Because, everybody basically yells at her! And sound is now your enemy! They also turned on a lot of lights, and this headache I was having made every bit of light feel like a knife in my eye. I spent most of my time with earplugs stuffed in my ears, ice pack tied to my head, something wrapped around my eyes, my hands over my ears, and crying for everyone to be quiet and to turn the tv off. Television is hard to handle after brain surgery, even 5 weeks after brain surgery. It can be overstimulating, especially with headaches. (Also, this lady was actively bleeding...all over our shared toilet. Not her fault, but um, no! Not using that anymore...)

I looked beautiful at the hospital! Not creepy at all!

My neurologist came in and I broke down. "I'm dying! I'm miserable in this room! Please, I can't take it!" He looked at me and I knew he understood, and in a quiet voice he said "I know. This is the worst place for you. We're going to try and discharge you today."

He explained to me why my headaches were so vicious so far out of surgery. He said I had been on the narcotic pain medication too long. It's true. They expected my pain to be gone within 2 weeks, but because of the problems with my intercranial pressure and other complications, I had remained on them for almost 5 weeks now. He explained that some people get rebound migraines with narcotic pain medicines. He said these medicines numb the part of the brain that deals with pain, and once they start to wear off your brain has a tantrum and demands more. Eventually no matter how much narcotic pain medicine you throw at your brain, all you're going to get is migraines and nausea. The problem is these medications also make it difficult to switch immediately over to traditional pain medicines, or migraine medicines. So they are using Naproxen (or Aleve) to ween my brain off the other stuff and transition it to migraine medicine. They sent me home that day.

In other words pretty much all of my problems are caused by medications that are supposed to help me. Go figure.

Well now I'm taking the Naproxen and migraine medication regularly and I can tell a difference. The frequency of my headaches seems to be less, but I'm still having days where I experience 8/10 headaches (no 10/10 yet *knock on wood*). Also I still have the original pain from what I guess is the pressure??? I don't know. I have so many questions and I don't think they have the answers yet.

It's hard to have one of the world's best neurosurgeons look at you and say "I have no idea what's wrong with you." What's worse is I'm looking back at the days before surgery where I was JUST FINE! I don't think my doctors did something wrong, I know it's me. I react weird, I've always been odd medically, and I knew from the day we decided on surgery that I would be the one patient who would not have the normal recovery. 

One of the most frustrating things lately, has been that my memory, and really all of my problem solving, is just gone. It left. I have the cognition of a goldfish. The other night it took me 3-4 tries to remember to put the milk back in the fridge, and I ended up having Ethan do it. Just now I got my computer to write this post and I took off my glasses and set them on a table. My therapist friends probably all know about the three word test, where you ask your patient to remember three words and at the end of your visit you have them repeat it back to you. Yeah I fail that like every time now. I argued with my mom at a nail salon, because she handed the lady three twenties for her forty-three dollar manicure, until 10 minutes later when I realized that's perfectly reasonable. 

Also I walk like a drunk. I mean I am falling ALL over the place. It's kind of funny I admit, until I scrape up my knees and elbows on the carpet.

I hope we get answers tomorrow. I'm sick of feeling miserable, and I am sick of telling job recruiters that I still can't work yet.

Ugh...

Here's some extra pictures:

This is what steroids does to your face! DON'T DO STEROIDS! Unless it like saves your life or something... (by the way this stuff on my forehead is almost all gone!)

I got stickers at the neuro-opthamologist for being a good girl!

These are my emergency shots. I can only use them twice a week when I have a really bad headache. Unfortunately I react kind of weird to them (my neck, back, and shoulders start to hurt, my scalp feels all tingly, my heart races, and I freak out).

Left: Couple days after surgery. Right: 6 weeks after surgery.