Therapy

I finished therapy yesterday and was given the option of paying to get accommodations for my car so I can drive better. They gave me a driving simulation to see how well my reaction time is. It would be easier if I didn't have a patch covering my eye. Sometime in July (I hope) I'll see another neuro-ophthalmologist about my right eye and I might get glasses to wear while I wait for it to heal. I've been excising my eye in the meantime to help it remember it's not the only eye. Something good has to come out of all of this. I've been sharing my story with radio stations, news, talk shows so we'll see if anyone responds...U survived the last 5 years with my shunt in the wrong way. I don't want the same thing to happen to anyone else.

Hair growth

My hair is growing back, quickly as usual. Although I'm concerned about the gurgling sounds I hear from the middle of my stomach.  These sounds are associated with a bad taste in my mouth. My doctor is aware of this and I'll have to see him again next month. I suspect my shunt is not re-absorbing the way it' suppose to. It was in the wrong way for five years, since 2009 and it's now back in it's correct position on my right side. It wouldn't surprise me if it's having these issues because of what happened over the last five years. Or it could just be because I've had one since I was three months old. Since I can't be compensated for it being in the wrong way, because of the stature of limitations in New York, ( they only allow two years after the surgery to file for medical malpractice). I wrote letters to my state senator, because laws need to be changed. Many people have died from their shunts being moved from it's original location. It's obvious to me, that once this happens all sorts of problems can occur. I've heard stories from other people with shunts whose systems were moved and they started to have all sorts of issues. This should not be allowed to happen.

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 ).