left v.s. right

Since my brain injuries in March 2014 I've been having occasional pain on the left side of my brain and in the back of my head by my cerebellum. The pain in the back of my head I've been told is from the type 1 chiari malformation I have, a result of my shunt over draining.

I figured out the pain on the left side of my brain and tingling sensations on the top two corners of my head are because my nervous system is ''looking'' for the shunt to be on the left side.  The tingling feeling I have is from what I suspect is body believing it's still about to have a stroke again....

Prior to all of this, I've always slept on my right side where my shunt was, it's a comfort thing.  Yet I noticed I've been sleeping on my left side. I believe this is because the shunt was on that side of my brain which led me to sleep on that side.  Because of this, I've decided to get used to sleeping on the right side again because that's where my shunt is now. I feel once I've convinced my body the shunt is where it's suppose to be, the pain I've been feeling on the left side of my brain and tingling sensations should stop.

I've tried this for about two weeks now and I've noticed the pain on the left side of my brain is less.
Much better solution than being given various medications which don't work and alter my mood.

Mirtazapine

Saw two neurologists on Tuesday. It was a marathon. I had an appointment with one in the morning, then learned upon returning home at 11am the doctor who I was suppose to see on Wednesday at 5pm wasn't going to be available and they had rescheduled me for Tuesday at 2pm.

I had told the 1st neurologist I've been having pains and throbbing in the left, right and back of my head.  I also have tingling sensations at the top right and left corner of my head.  This has been going on since before March 2014.

He prescribed me an anti-depressant, Mirtazapine to help with sleep.

In the afternoon, I went to the 2nd appointment in the city. The doctor I saw told me the pains I was feeling was from depression, even after I had mentioned how the pain is related to what happened to me in March 2014. I feel it will take some time for the pain to go away.

Apparently no one (besides myself) wants to talk about the elephant in the room. In my case, the elephant is wearing sun glasses and a shirt with palm trees. (I'd rather be somewhere warm)

I went home and took half a Mirtazapine before going to bed.

As a result, I had severe mood swings and became extremely depressed right away after taking half a pill.

Before taking the prescribed medication, I wasn't depressed. If anything, my mood has been getting better depending on the pain I feel during the day.

Over the summer, I was prescribed Celexa by a neurologist. It made the room spin around.

No more drugs.

I haven't had a CT, MRI or X-Ray done of my shunt since 2014.  I'll need to find a doctor who will agree to do one.  I'm suppose to have one once a year. The two neurologists whom I saw this week told me an X-Ray, MRI and or CT scan wasn't necessary, just take prescribed anti-depressant.

November

I have an appointment with a new neurologist in the middle of next month in the city. The social worker I saw with from September 2014 until May 2015 said she would speak to him/her prior to me my appointment. I had expressed my concern about being ignored by various doctors from 2009-2014 and as a result I have trust issues.

From what I was told I'm not going to have any more shunt revisions, yet it was never explained why. I'll have to inquire about this when I see him next month.

My last doctor withheld information from me regarding what was going on with my shunt.

This will not happen again.

Since I'm not having surgery I don't need to see a neurosurgeon. My new neurologist will have to acknowledge what happened to me as no medical professional has done so yet.

I believe some medical professionals don't understand this concept.

September

September is Hydrocephalus Awareness Month. Millions of people are affected by this chronic medical condition.

Several organizations are dedicated to spreading awareness, below are some examples:

Pediatric Hydrocephalus Foundation

Hydrocephalus Association

Remember September

Hydro Bears

Radio

Last week, I was on a local radio station discussing my film, Shunt Chronicles: My brain, art and school.  There are many different types of Hydrocephalus. Some examples are mentioned in the interview below:

Right eye in third month

Right eye as of June 3.

The redness is completely gone from my right eye.  As expected, it took exactly three months for my right eye adjust to the surgery I had in March. I still have some double vision when I move my head to the right. Driving is a lot easier than it was when I started in April. I hadn't driven in 1 year and 13 days.  It was an adjustment getting used to operating a vehicle and all the multi-tasking involved.

Now in June, I feel I'm driving the same way I was a year ago.  Not as disturbed by the concept of the physical space between me and the steering wheel. In April, I would see more double vision when I looked in the car mirrors on the right side and at the blind spots on the right. Now, I don't have double vision as much in the car as I used to. It's fascinating how the brain and the eyes are able to auto-correct.

Eye Update Part II

My eye is getting less red with each day. I'm sure by the end of June the redness will be completely gone. Still have issues with double vision  when my head is in different positions, when I'm laying down or turning my head to the right.

Eye Update, Part I

Right eye as of 4.1.14

Saw the eye surgeon today. He said my stitches have almost all dissolve. There are stills some at the top of my eye and behind my eye which are melting away slowly. I had the option of having the one currently glued to the top my eyeball removed

At the time I declined the offer because it hasn't been bothering me as much as it was two week ago when I had the surgery. It still hurts to blink and when I move my eye to the right, I can still feel the stitch behind my right eye poking out a bit. The surgeon explain on

ce all the redness goes away which should be in about a month, I may still see the stitch at the top of my eye.

I drove for the second time this week today. So much easier to drive with single vision and both eyes uncovered. I don't get double vision when I turn my head from side to side as needed while driving. I've gotten used to blinking each time I move my head so I don't see images shifting around.  Still some dizziness when I stand.

Eye Surgery, Part VI

Image of my right eye as of March 20

Around 8:45am yesterday, I was getting dressed to enter into the pre-operating room.  The surgery I wasn't worried about since I would be asleep. I was more livid about the situation and why I was having eye surgery from the brain injuries I had last year. Happy my eye was something which could be fixed.   Once I had the IV inserted into my arm and my glasses removed the eye surgeon asked me if I still had double vision. I replied, yes and he put up two thumbs and said good.

When I entered into the operating room I laid down onto the bed with a small circle pillow. The last words I heard before I fell asleep was the nurse telling me she as putting a warm blanket on my legs to keep the warm even though I had on a full body suit.

The eye surgery started at 10:30am. The procedure took an hour and a half. I have single vision, sort of.  When I woke up "five minutes later' at 12:30pm the surgeon was measuring my eyes to see whether they were aligned or not. Since they were he didn't need to make any adjustments. My right eye was given numbing drops and a very small metal prop was placed inside my eye to keep it open.  I looked up to see what I think were metal tweezers plucking away at the two remaining stitches inside my right eye.

I was home by the afternoon. When I look straight ahead I see single vision. When I look from left to right while looking straight ahead images don't shift. However, when I move my head to the right or the left the image shift slightly to the left or right and I have some double vision, then realign automatically after a second. Looking down then up again there is a shift again back into single vision, the same when looking up.

It's an adjustment seeing in widescreen when I've had one eye covered for one year and 10 days. The shifting of the images is odd, and will take a while getting used to. I've discovered when I close my eyes for a second while I turn my head I don't notice the shifting of images as much.  I can drive again in a few weeks.

 My right eye has some redness which should go away in a 3-4 days. The eye surgeon said it would take three months for my eye to fully adjust to the surgery. For now my eye is swollen, bumpy and in pain which should go down in a week. I still have the expectation I'm going to see double when I look above my glasses which is going to take some getting used to.

Eye Surgery, Part V

The surgeon said he is focused on me
being able to see single vision again when I look straight ahead.
They can achieve this part through surgery
which will take an hour under general anesthesia. 

Met with the eye surgeon today. The last time I saw him was in October. He told me there was a slight improvement in how my eyes were aligned since the last time I saw him six months prior.  He commented on how it's unusual to see any kind of improvement over that time period.  There's an 85% to 90% percent chance the surgery will work and I will have single vision again.There's a possibility I may have double vision when I move my head from side to side and then my eyes will have to learn to adjust back to single vision again.

Example of double vision I've seen for a year.
When I move my head the right, the images separate further.
 I move my head to the left, the images move closer together.
There's a chance after surgery I will still
see double a little when I move my head.
The brain may auto correct this and merge the images together.
 It can take 3 months for the eyes to adjust to the surgery.

The surgery will take an hour and then once I'm awake I'll be able to tell whether or not the vision is corrected. If an adjustment needs to be made, adjustable suture stitches will hang from my right eye.I will receive eye drops to numb my eye and they'll be able to make the adjustment with me awake. Which should only take 20 minutes if needed. 

It's outpatient surgery and I'll get to go home the same day. See the doctor for a follow up the next day then again in three months. After the surgery it will take three months for my eye to adjust to the changes. 

There's a chance I'll need to have prisms added to my lenses to fix any remaining double vision after the surgery. 

I am both happy and angry about the situation at the same time. Angry because in these situations you make if/then statements. If doctors had listened to me in 2009 and corrected the issues I was having then, I wouldn't be dealing with this now.

Eye contraption

But that's not what happened. I may animate what I feel like doing to the medical professionals responsible for this happening.

2nd view from the waiting area

All the changes in my body over the last year from these brain injuries is an adjustment to make. It's like grief, you have to adjust to living without the relationship. You still grieve for what is no longer there. but You're able to function again like you did prior again over time.  

1st view from the waiting area

Flowers by the front desk.

The doctor asked me whether I had a preference to using the adjustable stitch method or having the correction done. I didn't have a preference for one or the other, however I commented how I could handle seeing the adjustment being made if needed because as I stated, 'After what I've already been through, I shouldn't have any issues with 'seeing" anything once the procedure is complete. I've survived being up at 2am with feeling and hearing the shunt overheat inside my brain multiple times prior to the March surgery. I've had a camera stuck up my nose and down my throat while awake. I don't feel 'seeing' the last part of the eye surgery will freak me out too much. Still weird though.

1 year and 12 days

Today its the first year anniversary of my multiple brain injuries. Part of me is grateful I survived the ordeal and I'm able to resume most of my activities. However, I am apprehensive about seeing another neurologist/neurosurgeon regarding future care for my shunt. I've spent the last year with double vision and on Monday, March 9, I will meet with the eye surgeon to go over details of my eye surgery, the date and time.

I've been pre-occupied with having surgery to correct my vision from what happened to me 12 months ago.  I have extreme trust issues regarding hospitals and my shunt being revised.

I've had people say fairly insensitive, rude comments to me regarding how I'm suppose to be recovering and what I should be feeling.  I don't talk to these people anymore. A family friend had made the following a few months ago:

"What happened to you wasn't that big of a deal and you need to get over it. There are people who are worse off than you."

Me thinking: Would you like me to crack your head open with a golf club and demonstrate what I mean by brain injuries?

My response: "I was in rehab for three months, I saw people who had lost both their legs and had to walk using prosthetic legs, people who had strokes in their foreheads and could no longer speak, or people who were paralyzed from the neck down and could no longer move any part of their body at all. So I get I am very fortunate and grateful. However, I didn't just bump my head. My brain was bleeding in three places and I had a traumatic brain injury. I had to re learn how to walk, speak, stand, swallow, interact with people/environments and breathe.

And then there was silence.

I've been feeling a lot better (Physically, neurologically) these last few months. I think because my body is continuing to heal itself. My hand writing is close to what it was a year ago. My hand moves almost as it did. The hand writing isn't exactly as it was before, but it's close enough. Others may not notice a difference, but I do.

I think some people are quick to assume because I'm in school means my injuries were not too bad.  I do have some brain damage - processing is slower. It takes me longer to get things done. I'm getting closer to where I was cognitively last year, but there are still some issues.  I had a cognitive test done last week (three hours) and I'll find out the full report of " what it all means' most likely during the week I am to have my vision corrected. 12 more days left to go until I have single vision again.

Plastic Teeth

I went to the dentist today and received my jaw guard to wear at night to prevent my teeth from grinding and possibly help with the TMJ disorder I started having after the brain injuries... it will be a year in two weeks, I have mixed feelings about it - both happy and stressed, as I will be having eye muscle surgery to correct the double vision I've had for a year.

I had cognitive testing today with a neuro-psychologist to measure my ability to reason, make decisions logically. I have to say it was intense neurologically. My functioning has been impacted  in some ways from what happened to me. Some things I am able to do such as read, write, follow directions. I do have some short term memory issues and solving problems.

I will try the plastic teeth thing I was given today when I go to sleep tonight.

Curious to see how/when it relives my TMJ issues.

My new jaw splint which I received on Friday. I am suppose to wear it at night. 

Seven Weeks

Still dealing with a lot of trauma and PTSD. The triggers are a bit much though....being in a hospital three days a week at the Recovery Center for Substance Abuse. The unit I am interning in is on the same floor as the acute stroke unit. I would pass by the stroke unit on my way to the Recovery Center. I started to enter the Center through the Outpatient side so I wouldn't have to walk by the stroke unit...

For the first two months I was there in September and October, I wouldn't leave the offices because just walking on the until, seeing the patient food trays, patient rooms and the smell of the hospital is also a trigger...

Funny enough we're reading about all the different type of traumas in school. I just closed a case at the hospital this week where I was working with a 29 year old veteran from the Marines who has PTSD.

Because of the experience I had, now I'm hypersensitive and feel each time when the shunt over drains or pumps too much in my stomach. I also have occasional pain in my abdomen and have had what I think is nerve pain and throbbing in two parts of my brain. On the left side and on the top right corner. There is numbness there too. Not sure what it is when I go see the new neurologist perhaps he/she can offer some insight. Counting down the weeks until I get my eye fixed which will be on the third week of March. 

I have an appointment next month to meet with my dentist to get fitted for a stabilization splint to wear inside my mouth at night. It's suppose to help alleviate the symptoms of TMJ disorder I developed after all the brain trauma experienced last March. 

When I'm not going crazy with everything that's been going on I make some time for art. Currently dealing with the PTSD and trauma slowly through EMDR therapy. It's hard to get people to understand therapy is a process. I think some people just want everything to be better instantly because they themselves can't handle or don't want to think about the pain you are experiencing. 

Seven weeks until I get my eye fixed the third week of March. 

Anniversaries

 I'm in pain most of the day in some part of my body. Sometimes I can take a pain reliever and it will go away only to return again at some point later on in the day. It never ends.

I will be having eye muscle surgery towards the end of March. Also around the same time as the 1st anniversary of my multiple brain injuries. I've had some people say really insensitive comments regarding my recovery: Things such as,  'I should just stop being angry or there are people worse off than me. 'I understand all of these things, I was in rehab for three months I saw people who lost both
of their legs and had to use prosthetics, others had strokes in their foreheads and could no longer speak, some were paralyzed from the neck down. I understand I am fortunate to be able to continue the work I was doing prior to when this happened. At the same time, I had four different injuries and have pushed myself to finish things like school or other projects I am working. It's hard enough getting people to understand why I have issues with regulating my emotions now. I've had to correct these people (some family, friends) and remind them of what I'm trying to do is not easy.   I wonder how others would react to experiencing the following: re learn how to walk, stand, swallow, feed yourself and breathe after you've had two brain bleeds ( one intracrainial on the left, another on the right side, an intraparenchymal ) a hemorrhagic stroke and a traumatic brain injury.

I laugh and cry for longer periods than I did before.  I have less patience for people using their car horns just so they can get somewhere quickly. Not to say poor me or anything (I'm usually very good about not doing so ) The entire recovery process has been a struggle.  I have a lot of ptsd and trauma associated and multiple grieving processes with how my body used to work and how things are now.

Besides the issues with my eye I may be at 85% back to where I was before all this began. However, I still regularly have pains behind the muscle in the my eye, inside the iris and nerve ( it's nerve damage and not related to my eye muscle according to the neuro-opthamologist. I feel every time the shunt over-drains in my lower abdomen or at the top of my head. I've become hyper sensitive from everything that has gone on over the last five years. I've also come to the conclusion holding on to some anger will not let this happen again and forgiveness is overrated in certain situations. It's been difficult functioning with only one eye exposed. I've had double vision for 10 months now. Lately, I've been struggling with transportation and having to wear the tape on my glasses.  It will be a year in March.  I have mixed feelings about the 1st anniversary. Grateful to be able to do the work I do, as there were good things which developed out of this horrifying experience.....at the time it makes me both angry and depressed.

My drawings are better than they were before, but my hand writing is different. My had doesn't move the same way it did before...