Eye patch

The neuro-opthamologist examined my eyes yesterday and determined neither one of my eyes has any permanent nerve damage from the brain injury I sustained on March 6. I was happy to hear this news because it could've easily gone the other way ( i.e. color, peripheral vision damage ). He wants me to wait two months before getting prism lenses to wear which would allow for my vision to line up together. It appears my right eye is healing on it's own and it can take months for it to return where it was before. I can continue with the eye exercises, but the reality is my right eye won't sync to the  left eye while it's partially paralyzed. I suspect everything else will heal around the same time (.i.e  - numbness around my mouth, eye issues ). Not sure yet how I'm going to return to illustrating my books with one eye. It's going to be a challenge, but at the same time I don't have anything else to do while I'm home recovering.

9

X Ray Image of distal catheter November 2009.

On May 12, 2014 I had a revision of the distal catheter which runs from the shunt inside my brain all the way down my neck and into my stomach where the csf is reabsorbed into my system. This will be my 9th shunt revision and 2nd in the last two months.  I was told by the Resident who was with me in the OR that my catheter had been calcified.  They were easily able to remove the entire thing and it had been leaking behind my right ear and in two places in my stomach. It was also broken near my stomach which would explain why part of it was scraping the me on the inside. They were able to re-attach the new catheter to the shunt in my brain and run in down into my stomach.  A small piece in my brain was unable to be removed which they were able to work around. The catheter in my stomach and neck had been in place since 1993.

New Distal Catheter as of May 2014. The one on the right side was the catheter which was cut.
New one which was re attached is beside it. 

Since the surgery I no longer have the pain I was having behind my ear, leaking from the catheter into different parts of my body, pain on the catheter, vibrations inside head and bad taste in my mouth.

Cut where catheter was removed from neck

The stomach internist had to drain out all of the csf which had leaked into different parts of my body such as my intestines. I have four incisions in my stomach and lower abdomen from where they had to remove parts of the catheter and drain out excess fluid. They also needed to make an incision at the top of my neck to remove the rest of the catheter. Additionally the new catheter needed to be attach to the shunt in my brain, so a cut was made there was well.

  

Monday

On Monday, May 12th I will have the catheter in my stomach and abdomen revised. Originally when I saw my surgeon on May 6, he had told me I would have the revision scheduled for May 22. The day after my office visit, my symptoms got worse and I contacted their office to arrange for the surgery to take place as soon as possible before May 22. Since 5:46am this morning, I have had cramping in my stomach and abdomen along with feeling fluid leak from the catheter in my stomach and the usual pains I've been feeling in that region. I didn't feel like waiting until the end of the month because I worried about the symptoms and of having another stroke.  I don't know if I can handle it emotionally and physically to endure another stroke and the therapy involved in the rehabilitation process. The cramping I had this morning freaked me out because I hadn't experienced it previously. I should be home by Wednesday if not earlier. Thursday I get to see an neuro-opthamologist about my right eye. The right eye will get better the sooner the catheter in my stomach is fixed.

Stomach Surgery

5/4/14

Nausea, catheter pain underneath revision scars starting at 4:36am.  Clogging in catheter at 6:56am with nausea and pain in lower abdomen underneath revision scars at 6:58am.  No appetite. Burping too much with pain in middle of stomach at 7am. Pain in middle of stomach on catheter at 8:45am, 9:15am, 9:49am. Nausea all morning and burning underneath revision scars on stomach. Pain in stomach and abdomen multiple times during the day especially burning underneath revision scars in mid afternoon around 3pm.  Upset stomach, nausea, pain and cold fluid underneath revision scars.  Felt stomach catheter clogging during the day. 

5/5/14 – Pain underneath revision scars starting at 3am. Upset stomach, nausea and fluid leaking into lower abdomen.  Bad taste in mouth and no appetite during early morning hours of 7:23am. Pains in abdomen underneath revision scars and sharp pains in upper part of stomach all day long. First day ever having continuous pain in stomach and abdomen.

Doesn't sound like it's working to me. I had explained to my doctor my suspicions of the shunt not draining properly based on what I've read online.   Since it was in the wrong way for four year, it could have extra cerebral spinal fluid that wasn't reabsorbed properly.  It's just my opinion and I surprised no one else has thought of this yet. Technology just isn't there as far as I'm concerned.  I had told him numerous times before I had the revision/brain injuries in March I needed a full shunt revision which means changing out the entire system. He didn't listen to me. I took a huge risk learning how to walk again with the catheter broken in my stomach for an extra two months. I had complained about having stomach and abdominal pains for months before it was fixed. 

We need to have shunts that at least have the following:

1. Shunts that have expiration dates so you and your doctor know how much time you have left before it expires.

2. Shunts which give off an indication whether it's a light on your arm, head or something telling you it's about to malfunction.  

3. Technology advanced like it is was in Star Trek where once you're scanned with the laser gun you have a reading on the computer of what's broken and needs to be fixed. 

All these things would make life so much easier for both doctor's and patients.  There would be no guess work involved. Because as far as I'm concerned what they're using now ( MRI, CT, shunt tap, shunt series, brain probe, etc.) aren't really looking at the problem. Those things are only able to look at one area. What would happen in the patient couldn't speak and express how they were feeling? Now I'm curious to know who makes the decisions on technology and assessments used to treat this condition.

CT Scans and then some...

Correct placement of shunt valve after surgery
March 2014

In three weeks I'm going to have a CT scan done of my neck and abdomen to see why I'm still feeling pain in my stomach catheter, my neck and vibrations inside my head. I suspect it's because the shunt isn't draining properly, which I mentioned to my surgeon. I could be having these pain issues ( as I've had them for 8-9 months) before I had surgery and it could be because the distal catheter I have is 20 years old. I've been having vibrations and pains in my abdomen for 9 months now.

Incorrect placement of shunt. 2009-2014 

For now I'll continue to have the following (minus the headaches):

4/20/14 - Sharp pains in lower abdomen near ’93 revision scar, clogging in catheter in stomach multiple times around 3am-5am. No appetite starting at 5am. Bruising in stomach, upset stomach and vibrations in head at 8:33am. Pain down right side of neck on catheter multiple times between 6:35am-8:30am. Felt sharp pain (vertical) on stomach catheter around 9:13am. Nausea and clogging in stomach catheter around 9:24am-9:25am and again from 1pm-3pm. Experienced pain on stomach catheter, throbbing and pain in upper/lower area of stomach/abdomen all afternoon and into evening at 5:57pm, 6:16pm. No appetite all day. Sharp pains in stomach and lower abdomen at 7:39pm with nausea, pain on right side of neck on catheter behind ear and vibrations inside head at 7:40pm, 8:16pm, 9pm. 

4/21/14 – Vibrations inside head at 3am with sharp pain on right side of neck on catheter. Surface of stomach sensitive to touch. Sharp pains in stomach on catheter and lower abdomen near ’93 revision scars at 8:05am.  No appetite this morning, nausea all day. Sharp pain on catheter in stomach at 9:16am with pain in lower part of stomach near ’93 revision scar and pain on right side of neck on catheter. Pain in stomach and pain in right side of neck on catheter at 1:12pm. Pain on right side of neck on catheter multiple times and pain in stomach/abdomen at 2:23pm, 3:04pm, 3: 35pm, 4:11pm, 4:18pm (with bad taste in back of throat) Pain in abdomen underneath revision scars at 4:21pm. Vibrations inside head at 4:23pm with pain on right side of neck on catheter behind ear. Pain on stomach catheter (horizontal) underneath revision scars at 4:35pm, 4:48pm-4:49pm with vibrations in head at 4:49pm and upset stomach at 4:51pm. Upset stomach, nausea at 4:53pm with vibrations inside head. 

4/22/14 – Bad taste in back of throat and mouth starting at 5am. Pain on right side of neck on catheter and sharp pains in stomach/stomach sensitive to touch at 6:16am. Vibrations inside head at 6:23am with pain and upset stomach. Nausea at 6:56am with pain in stomach with burping and heartburn.  Pain on right side of neck behind ear at 1:45pm, 2:11pm, 2:36pm-2:37pm. Upset stomach and nausea around 2:37pm, 2:41pm, 2:44pm. Pain on right side of neck on catheter at 2:45pm. Upset stomach with sharp pains at 2:54pm, 3pm. Pain behind right ear on catheter multiple times at 3:19pm. Pain/throbbing on stomach catheter at 3:21pm, 3:53pm ( with nausea in stomach ).

Nerve 6

Original placement of shunt valve on right side
of brain 1993-2009

I've been home since yesterday and it's at times cranial nerve 6  ( where the hemorrhage occurred at the brain stem ) For the time being I have to wear an eye patch on the right eye when I'm not using it, because without it I'd see two of everything and can technically only walk when I have the left eye.  I feel some people who have both this eyes in working order can take things for granted at times.
disorienting.  My right eye continues to make attempts to move back into place.  All of this was caused by something called the

Incorrect placement of shunt valve on
left side of brain. 2009-2014

Shunt valve returned to correct side of brain
on the right March 2014.

Walking around the house can get dizzy at times because I spent a month in the hospital walking around a few times a day. I was told my eye would fix itself in a month's time. So hopefully it will be back in the right place by the end of this month...

Mis alignment of eyes in hospital in March 2014.

March 6

On March 6 I had my anticipated shunt revision surgery.  In 2009, my shunt had been placed on the wrong side of my brain by a different doctor.  During the surgery (2014) my shunt stopped working because it had been on the wrong side for 5 years. The ventricular catheter was leaking csf fluid all over my brain. While the surgeon was replacing my shunt valve, I had a 10 millimeter intracranial brain hemorrhage on the left side of my brain. The bleed led to a hemorrhagic stroke by my brain stem which was followed by a traumatic brain injury.

When the catheter was returned to the right side of my brain, I had a 5 millimeter intraparenchymal
brain hemorrhage.

Correct placement of shunt birth to 2009

Incorrect shunt placement 2009-2014

Correct shunt placement 2014 to present

I woke up in the operating room with numbness in my throat, tongue and lips. I had partial numbness from the waist down and had could barely walk. My right eye was turned so far towards my left eye I could see the other eyeball.

Since last week it's been moving back to the right where it's suppose to be or at least trying to.  I have a wheelchair and I'm able to move myself around via feet.

I've had to re learn to walk, speak, swallow, stand and breathe. All of these things are difficult when you are trying to recover from multiple brain injuries. It can be very frustrating and exhausting. I continue to have pains in my abdomen and vibrations inside my head multiple times a day.

Since March 12 I've had OT, PT and ST each twice a day for six hours a day.  My release date is April 8. I will have outpatient therapy twice a  week for 3 hours a day after I return home.