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.