Souvenirs

I never really realized how much I took for granted.  Immediately following the injury, I had very poor body awareness because of the head trauma.  It took a little while for the deficits to reveal themselves to me and for me to truly understand these deficits. A lady from my support group has renamed deficits as “souvenirs”, I like that term.

Since the epicenter of my brain injury was located on the right side and branching out everywhere into the frontal, temporal, parietal and occipital lobes and hypothalamus, I will share the deficits that affected me and are fairly specific and typical for a right hemisphere injury.  An injury to the right side of the brain leaves the majority of noticeable deficits on the left side of the body.

I have broken down my deficits into the following categories: Motor, Sensory, Cognitive, Other, and Vision.


Motor:

When I woke up from my coma and surgery I was hemiplegic (half paralyzed).  I was completely unable to move the left side of my body. I currently have hemiparesis (left sided weakness). No surprise, my balance was off.  Hemiplegia impacted my ability to sit without falling over and, therapists were concerned if I could swallow food safely. Even today, I still drool a little bit, especially when brushing teeth, since I still have some facial paralysis.

I also experience spasticity (muscles continually receive a message to tighten, stiffen and contract) and clonus (a series of involuntary rapid muscle contractions).

Because of the lack of movement from hemiplegia, I began to develop shoulder and hip subluxation (joint instability or, a partial/temporary dislocation of the ball and socket joints) and scapula winging (the shoulder blade sticks out like you are growing a wing. Trust me there is nothing angelic about it).  My muscles in my shoulder, arm, and hand do not work the way they should, resulting in limited fine motor function.

Flexor synergies, Internal rotation, Inversion: Results of spasticity, where the resting posture of limbs are in a flexed position.  The easiest way I can describe it is a very primal reaction of the body wanting to return into the fetal position. For example, my forearm wants to elevate towards my chest with my fingers curled into a fist, my toes curl, I have drop foot, and toe drag,and my leg rotates inward. When I think hard, sneeze, yawn, or challenge my body physically these flexor synergies increase. A few other motor deficits I have are related to abnormal gait like knee hyperextension, walking with a flexed knee, inability to get heel strike on my affected side. My abnormal gait pattern has started to impact my unaffected side, in that, I am beginning to experience knee pain.

In 2011,  I was diagnosed with equinovarus contracture deformity (club foot).  This is a result of spasticity, flexor synergies, and internernal rotation.  I walk on the side of my foot with my toes clawing the floor, with a high ankle arch, and knee hyperextension since my heel does not touch the ground.  I am considering the tendon transfer/ toe fusion surgery.  I decided to try a new afo with Botox before doing the surgery.  My recovery page has a photo of my latest afo.

If you were to put xray glasses on, this is how equinovarus deformity looks like.  Pay special attention to looking through the hole in my ankle bone (the ankle bone is supposed to stack nicely, without holes), clawing toes, rolled foot.


Sensory:

I do not feel the left half of my body. At about a year post injury I began to get some feeling in my thumb however, the feeling I experience in my thumb is not accurate to pressure being applied. A very dense sensory loss adds a whole other dimension to relearning how to walk and regaining fine motor skills. My proprioception (ability to know where I am in space) is terrible.  Police Officers typically test proprioceptive tasks in a field sobriety test.  How can I touch my nose if I do not know where my arm is?


Cognitive:

Left Neglect is an attention deficit where I neglected or was not aware of the left side of space. I am half the woman I used to be.

Topic Maintenance was my inability to stay on topic during conversation.

My pragmatics (ability to pick up on social cues) was non-existent. My “filter” was turned off. I would say socially inappropriate statements.

Divided Attention, the ability to divide my attention between two or more tasks, was impossible.

I had executive function impairments like the inability to plan and begin tasks.

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My decision making ability was impaired, even on simple decisions like choosing menu options.

I was impatient and a little bit impulsive and verbose.

I would need a quiet room to be able to focus on a task I was supposed to do. My short-term memory was impacted.

My orientation, knowing what day, year, country, city and who was president was inaccurate.

It takes me a lot longer to do things.

My overall thinking is slower.  I have difficulty doing mental math, or figuring out complicated structures.


Other:

I have some other deficits that really don’t fit into any other category but, are worth mentioning.

I experienced a tremendous amount of fatigue. Rest is an important element of the healing brain.

In the beginning, I would hear and feel a sticky clicking noise in my head.  That noise is the skull bone settling and healing.

I experience swelling at the craniotomy site from time to time and, more often in the morning.

I get headaches and nausea from time to time. Sometimes the headaches are normal, other times it feels like I ate too much wasabi.

Sometimes, I get extremely lightheaded and dizzy, to the point where I have to hold the wall to not fall. I cannot function.  I have to lie down.  Along with this feeling I have the feeling of blood rushing away from my face, warm earholes, headache, nausea, and like heavy eyelids.  It is very weird. This feeling usually passes in a few hours.

I had one “drop-attack” seizure post injury.  The lights went out and I fell.  EEGs were conducted showing I have epileptiform potential and brain “slow” brain waves in my temporal region especially (another word for “damage”.

 

The extremities on my affected side get ice cold and a little bluish from time to time.

I gave myself a few gray hairs. When I shampooed or brushed my hair, there seemed to be more hair that would fall out.

My monthly menstrual cycle has still not regulated.

I do not dream when I sleep.  I am unable to sleep through the night.


Vision:

I acquired four major visual deficits post-injury:

  1. Left Homonymous Hemianopia (or, Hemianopsia)
  2. Terson’s Syndrome
  3. Double vision
  4. Afferent Pupillary Defect

The first 2 visual deficits were not discovered until about 2 months post injury.  A formal diagnosis of Hemianopia was not determined until 8 months post injury and after the vitrectomy.  In 2009, I began noticing  intermittent double vision, which was formally diagnosed in 2012.

Left Homonymous Hemianopia is when you lose the left half of the visual field in both eyes.  Each eye receives images from the right side and left side of the visual field.   These images from each eye join and cross over to be interpreted by the opposite side of the brain (left visual images are processed by the right side of the brain). My brain injury happened to the right side of the visual pathway beyond the optic chiasm.  Basically, the junction that brings the images from my left visual field no longer exists.  That part of my brain passed away.  I am told that this condition is permanent and legally cannot drive because of this deficit.

Hemianopia is, by far, the most difficult deficit for me to deal with.  Objects appear and disappear out of nowhere.  I walk into things and knock them over. I almost got hit by a car because I did not see it.  I sometimes miss the first or second letter or number when reading.  At first, I would only see half a car or one headlight which shocked and unsettled me.  Now, I think my brain has filled in the other half of the image so it looks like I see a whole image.

I met with Dr. Greer at UC Berkeley’s Low Vision clinic and tried prisms.  Prisms are affixed to your glasses and you must glance or scan constantly to pick up images from the non-seeing side.  I tried prisms for a week. They were confusing, distorted my visual field and did not give me enough warning for objects I might walk into.  The more time I spent scanning to my left, I would have inattention on my right and walk into things.

Vision uses 50% of brain power and is the sense most difficult to regain and is not very hopeful to grow another pathway.  You can relearn to move your finger because it is an action.

A lady from my support group, who had hemianopia tried hyperbaric oxygen therapy and vision therapy.  She regained enough of her vision to return to driving.\

I tried hyperbaric oxygen therapy and vision therapy.  There was minimal graying along the half way point of my visual field test.  A subsequent visual field test showed a solid hemianopia.

I would still like to prove the Doctors wrong and build a bridge to restore this optic tract.  I guess that’s a bit of my stubbornness shining through.

I developed my own experiment in 2009 to try to “solve” hemianopia.  Fashioned after the upper limb constraint therapy, I created custom contact lenses with UC Berkeley to block off the seeing half of my eye…essentially forcing the non-seeing half to see.  How would you “regrow” vision if you cannot separate out each side and make it work?  When I have statistically sound results. I will present my findings and protocol.  Stay tuned, I think I am on to something. 🙂

Terson’s Syndrome is when there is so much pressure and blood inside the brain that it hemorrhages into the eyeball.  The eye is considered part of the brain.  It is believed, but uncertain, that the blood travels up the optic nerve and pushes through the retina into the vitreous of the eye.  Terson’s Syndrome affects 3-13% of severe cerebral hemorrhages.  In 2011, I was diagnosed with phantom pain behind my right eye, due to the residual from the severity of my brain and eye hemorrhage.  This pain is best explained as someone is trying to pluck out my eyeball with a meat-hook behind my eye.

It is like a snow globe of a floating blood clot in the eye.

In my right eye, most of my vision was occluded, with the exception of the right periphery which I could see a little but, only through tendrils or, cobwebs of clotted blood.  If I moved my eyeball or head, the tendrils or, cobwebs would move.  I was told to wait six months to see if the large blood clot would resolve on its own (be absorbed by my body).

After six months the blood was still there so a vitrectomy was recommended and performed.  A vitrectomy is when a retinal surgeon sucks out your eye juice (vitreous) and puts new eye juice back in.  The new eye juice is clear plasma that, over time, my body will replace with its own vitreous.

After the vitrectomy, we were all hoping for a curtain lifting so I could see.  My vision was very blurry after the vitrectomy, in part due to the dilating eye drops.  After about 2 weeks or so I began to “see” some improvements.  Unfortunately where the blood pushed through my retina, there was damage to my macula (roughly the center of my retina responsible for detailed central vision).  The vision in my right eye was very blurry due to this damage.

I started taking eye vitamins and patching my eye.  I patched my left eye at least half an hour a day to make my right eye work and possibly rebuild my macula.  How can I expect my right eye to get better if it is lazy and tags along with the left eye?   I have improved my visual acuity.  It is not 20/20, but 20/50, a vast improvement from when the curtain was first lifted.  Fast forward a couple years and I have improved my vision in my left eye to 20/30 with corrective lenses.  My central vision is still impaired but, all a vast improvement. 🙂

In my left eye, the hemorrhage is encapsulated behind the retina (sub hyaloid).  I do see a little floating cobweb when I move my eye.  If this clot ever dislodges and occludes the vision in my left eye, I would need to have a vitrectomy of my left eye.  For now, it’s status quo.  Fast forward a couple years, in 2011 I visited my retina surgeon and that clot in my left eye has been absorbed by my body. 🙂  There is still blood under the retina in my right eye, nasally, so it is on my hemianopic side and should not “impact” my vision.  In 2015, I learned that blood was finally reabsorbed.  Very cool.  See the body is always trying to heal.

I have pain directly behind my right eye, as if you were to scoop out my eye, right back there.  I have been referred to an occular orbit specialist, a.k.a. the eye socket doctor.

Double Vision I have another image superimposed lower and to the right.  This is due to my right eye not aligning to focus.  It is more noticeable when I look at a PowerPoint presentation and also at times when reading.  I have a small prism affixed to my right lens in my glasses to correct this.

Afferent Pupillary Defect (a.k.a. APD)  This means that my optic nerve of my right eye was damaged, quite possibly from when the blood in my brain hemorrhaged into my eyeball.  What this means is my pupil does not react (constrict down) to bright light as much as my left eye.  Only a little more than 5 years later did I learn this diagnosis.  My first neuro-ophthalmologist mentioned APD to his entourage of medical students but, this was not explained to me back then.

my-scar2

This photo of my very cool scar taken about a month and a half post surgery.  This was after the 78 staples and the stitches were removed.  The incision is a question mark so I guess I will always be inquisitive.  While I was still in ICU at UCSF, my Mom brought over my hair stylist to do something with my hair.  My head was half shaved and the other half was in an “ICU Braid” (a bloody matted braid that no one could comb through.)  Pre-Injury I had long blond hair and never would have thought to shave my head.  It turns out I have two cow-licks, a cow must have licked me twice when I was born, and something new I learned about myself.
Before
Before
16 months post injury
16 months post injury