Post Brain Injuries and then some

Next week I will see the neuro-opthmologist I had seen during the summer. He had suggested I wait until the 6 months after my multiple brain injuries to begin discussing options for surgery.

I am however, getting restless at times regarding my upcoming eye surgery. I know everything will go well, it's just I have to wait until January of next year to have my eye corrected. Which means I'll continue to have double vision until then in addition to the tape covering my right eye.  It will be nice to  see out of both my lenses.

I have trust issues with neurosurgeons since my surgery in 2009 and the most recent one this past March.   Like in any profession, there are good eggs and rotten ones.  I have had both good and bad doctors. There is a part of me that knows my shunt won't be put in backwards again. However, there is portion of me which is doubtful and doesn't trust surgeons. It will take some time for me to earn the trust of another neurosurgeon.  According to the doctors at Columbia Hospital ( in New York City ) I cannot see a neurosurgeon until I have surgery. In the meantime, I have to see a neurologist. I understand why I need to see a neurologist, however my concern is who will be operating when I come into the ER with an obstructed shunt? Apparently I will have two doctors when this occurs: one main surgeon then a backup for him in case he's not available. I don't think this will happen again for maybe 7-15 years since the shunt it on the correct side now....

My hope is sometime soon, these genius inventors will come up with a way to predict when the shunt is going to stop working.  It doesn't make sense I know when the orange juice expires but not when the shunt is going to stop working.....

We need Star Trek technology where you know in five minutes what's wrong with  the patient and how to resolve the issue.

Once more with feeling

I went to a stroke support group meeting on Wednesday and met several other people who had also had a stroke. All of the people except for the group moderator were over age 65.  It was nice to hear other people stories of their recovery.  A point which was made which I found to be true.  There are some people who just don't understand what it means when you tell them you had a stroke. A stroke means the brain's blood supply is blocked or a blood vessel within the brain ruptures. I had a stroke on the left side of my brain. I also had a brain hemorrhage on the right side of my brain. A  hemorrhage is when blood from brain trauma irritates the brain tissue. This causes swelling in the brain. Another name for this is cerebral edema.

The reason why I had additional bleeding in the brain at the time was because the ventricular catheter of my shunt was on the wrong side. When it was moved back to the right side of my brain according to the doctors I had an additional bleed on the right side of my brain. In my opinion, I think I had the stroke before I went in for surgery and I had an additional bleed when the ventricular catheter was moved to the right side. I passed out before I got to the Operating Room. I hadn't been given any anesthesia yet, just the IV had been inserted.  The stroke it caused traumatic brain injury. TBI happens when the brain is hit by a sudden force or when an object pierces the skull and enters brain tissue. 

Side effects of stroke include behavioral changes, memory loss, physical and emotional changes. Six months later, I'm still having some walking and balance issues. I still struggle with the emotional and behavior changes. I'm more anti-social than I was before.  On certain days sleeping in past my usual time of 7am is too easy.  Which is why I only allow myself to do this sometimes.

The changes in my brain haven't prevented me from continuing the work I was doing before March. It took me seven weeks, but I was able to finish a graphic novel I had been working on since January. In order to get back into illustrating it took me about four months before I was able to continue working on anything. At first it was too overwhelming and having to sit down and draw for various periods of time was too much multitasking for my brain to handle.

ENT

I went to see an ear specialist at my local Ear, Nose and Throat doctor (ENT) regarding my right ear. Since returning home in April, I noticed my right ear feels full, there is a continuous tone and the sound quality is slightly distorted and diminished. I thought it would go away on it's own, but it hasn't. Today after getting a hearing test and speaking with a doctor I learned the hearing in my ear will not improve as it has permanent nerve damage from the stroke and traumatic brain injury I had in March. I have two options, I could get a hearing aid for my right ear. I can still hear, but it  needs to be amplified by a lot. According to doctor, I have something called Tinnitus in my right ear. Another option I have is to go see another specialist about getting Tinnitus training which could eliminate the tone I hear in my ear through brain training. I still need the hearing aid because of the diminished sound. Since it's been almost six months since the stroke and brain injury the ear doctor said my ear most likely will not improve. Not happy about the hearing being damaged permanently. At least I can still hear with amplified sound in the ear...

Sexy Patch

I went to see a neuro-opthamologist yesterday regarding my right eye. According to the doctors ( I saw two ) the reason I have double vision five months after my stroke in March of this year is because my right eye has been moved out of place. I had senses it had been shifted since March because when I look at a lamp with both eyes open and tilt my head to the left (for example) the image of the lamp in my left eye will stay in place while the image of the lamp in my right eye will move either up or down depending on if I tilt my head up or down. I was tested for prism lenses to see if this would correct my double vision. The level I would need is a 30.

I had been tested for prism lenses in the beginning of May with a different doctor and the level I was tested at was 30. This means the thickness of the lenses would be about an inch. They don't make prism glasses at that high of a level and thickness. Overall my best option is to have surgery (3rd time this year) to realign my eyes.  Since it's been five months I have to wait until the sixth month before any surgery can be done. He wants to see me again in September to look for any changes. He doesn't think anything will change too much between now and the next six weeks.

According to him, anything that was going to heal on it's own already fixed itself. I still have some balance issues and feel a little numbness around my lips and tongue.  I'll also have to meet with an eye surgeon during September. I can drive around the county during the day and when it's nice outside for now. 

Eye alignment

Eye with patch

Glasses with tape

The eye doctor told me I didn't have to wear an eye patch anymore because I'm not 7 years old. He took some medical tape and attached it to my right lens. I don't have double vision because the tape on the right side blocks me from seeing out of that eye. At the same times no one knows whats wrong with my eye and I'm not sweating underneath the patch anymore. I will use this for now until September.

Almost..

My right eye has improved and I don't look as crossed eyed as before. The images are starting to align in the far corners first then moving inward. The pain is still there from the muscles putting themselves back into place. There are times where it feels like my eye is being stabbed with a sharp object. Pressure is also being relieved off the left eye, but not as much as the right. I believe I could have my right eye back by the end of July. If not then, it should be before the end of August.

Right eye as of July 10

There's still something going on with the catheter in my stomach. Everyday I feel sharp, throbbing pains where the catheter is both underneath previous revision scars and from the top to the bottom of my stomach. I was given an adjustment in May and that helped alleviate some of my symptoms. I suspect I'll need another when I see my doctor again next month. The challenging part is having to wait until then. 

3rd

Scarring from distal revision last month.

I'm going to have plastic surgery sometime this summer to correct the scar left behind from the distal catheter surgery in May. The incisions made on my stomach during that operation didn't leave any scarring like the one on my clavicle ( pictured ). It's an odd looking mark as I don't think it's suppose to look that way. The good news is the entire shunt is in working order.  Before they had made the adjustment for me earlier this week I was having pains in the stomach catheter ( as mentioned previously ) The discomfort in my stomach is minimal compared to how it was on Monday. Shunt is correcting itself. The bad taste is gone from the back of my throat and I now I only occasionally feel discomfort in my abdomen.

Magnets and then some..

I've been having pain from the catheter in my stomach which isn't normal when I'm suppose not be feeling anything at all. I'm also burping too much and have a metallic taste in my mouth.  I had an adjustment made on my shunt valve yesterday while at the doctor's office. It used to be on a level 8. Now it's at a  level 10.  In a few days ( by Friday ) I should be feeling my symptoms alleviated. Next week I have the joy of getting another CT scan of my abdomen to see what could be going on there.