Shunt Chronicles

2014, Part 2

2026-04-03T14:25:00.000-07:00

I went to rehab after my injuries in March 2014. I would go in an out of consciousness for like a week after my injuries while I was in rehab. I would be in Speech Therapy and then everything would go black next thing I knew I was back in my room. The numbness I felt throughout my body after my injuries continued for about two weeks afterward while I was in rehab. I also had double vision as my right eye since it had been moved as a result of my injuries.

While in rehab I had Physical, Speech and Occupational therapy twice a day. I had to do everything with someone watching me, eat, shower, bathroom in case I fell and needed assistance. Being in rehab was quite depressing as you can imagine. I'm not the first nor the last person to have injuries (brain or other type) then go to rehab to begin recovery. It was exhausting physically, emotionally and mentally since you're trying to do this rapid recovery all at once while your body/brain are also recovering.

The distal catheter in my stomach was still broken when I was in rehab. When learning about to walk and stand, this was an additional challenge. When you walk and stand you have to suck in your stomach to keep your balance. Every time I did this, I had pain in my stomach as the distal catheter was broken and scraped the inside of my stomach.

Dr IN who had done my surgery in March 2014 had told myself, my family and the therapists in rehab that I had one stroke. I learned during physical therapy that this was not true.

While I was learning how to stand again ( it took a month for this to happen ) I was holding onto a table while in the hallway when the Neuro Psychologist came to get an update from my physical therapist about my progress. He would then give these results to my neurosurgeon (Dr. IN) The conversation went as follows:

Dr NERO: How is she doing?

PT: She's doing good. She had one more than one bleed though.

DR. NERO: She only had a stroke.

PT: No, she didn't. She had more than one bleed. I can tell because of how her legs are moving.

Upon hearing this I was both shocked, angry and curious...

My legs were doing what they call scissoring. This is when one leg crosses over the other like scissors. For example, my right leg would cross over my left leg causing me to lose my balance and fall on my face if I'm not aware of it.

My legs still do this sometimes, I have to pay attention.

I returned home from rehab the first week of April 2014. My cat Stella (2000-2023) brought me all of her toys. I also ordered a copy of the operative report from March 2014 to read about what really happened.

Then I returned to see Dr. IN for a follow up appointment on April 23, 2014. He marveled and how great I looked because I was sitting up on the examination table. Then I said the following:

VB: The distal catheter is broken in my stomach. I can taste cerebral spinal fluid and I can smell it. It's leaking out of the distal catheter into my abdomen and it's very cold.

Dr. IN: You're having heartburn, Veronica. Take medication for that and call me back in a week.

Oh no he didn't....

Both my mom and I got angry at him.

VB's Mom and VB: Here we go again!!

Dr. IN repeated what he said about the heartburn.

At this time, I had been out of school for almost two months. I returned to classes on April 26. Since I had stayed 1 - 2 months ahead of my assignments by the time I returned to school, I only had two papers to write for one class. I struggled to write those two papers as I was mentally, physically and emotionally exhausted. I also still had the double vision. I only had a month of school left before the semester was over. My mom would drive me to class ( they were once a week ) and I would start sobbing before going into the building because I was just overwhelmed. I was tempted to drop out like five times before the semester was over.

I was able to complete the semester and handed in my last two papers.

As I mentioned in the previous post, I had expressed concern about appetite symptoms and vibrations in my head....This went ignored by Dr. IN. Those are symptoms that the shunt is broken and it is a medical emergency.

The first week of May 2014....I called his office and left him the following voicemail quite angry:

"Hello Dr. IN. This is Veronica. The distal catheter is hanging my a thread and it is going to poke a whole in my stomach and other organs if you don't fix this now."

Then he schedule surgery for May 12, 2014:

Diagnostic Studies: A CT of the abdomen and pelvis performed in May 2014 demonstrated the catheter intraperitoneal and positioned within the pelvis.

Description of Procedure: The patient was transferred to the operating room. She was given preoperative prohylactic IV antibiotics.

Anesthesia: The patient was sedated and intubated without difficulty by the anesthesia service. Eyes were taped shut after ointment was applied to prevent corneal abrasion.A Bair Hugger was placed over the exposed lower body to maintain control of the core body temperature.

Positioning: The patient was positioned in supine with the head rotated mildly to the left. A small roll was placed underneath the shoulder. All pressure points were carefully padded. Hair was clipped over the right side of the pre prepping was then done utilizing alcohol. Superficial landmarks had been identified including the right external auditory meatus, the right sided prior ventricular peritoneal shunt incisions.

Operating Technique: The head, neck and abdomen were then prepped and draped in standard sterile fashion. The mark cranial incision was infiltrated with the 1% lidocaine with epinephrine. Incision was made sharply with a #15 scalpel blade. Hemostasis was was promptly achieved utilizing self-retaining retractor. The shunt valve was disconnected distally and CSF was noted to be dripping from the valve. A rubber shod was then attached to the distal portion of the valve. The distal catheter was removed.

In summary, using diagnostic laparoscopy, the peritoneal cavity was entered, the previous VP shunt catheter was noted and removed. An adequate position for the new VP shunt catheter was then determined. At this point, a pass was then made form the belly incision to the scalp with an intermediate incision over the clavicle.

It was then tunneled from the incision behind the ear to the clavicular incision then to the abdominal incision with a 2-0 silk ties. At this point, the distal catheter was then connected to the distal portion of the valve and secured in place with a 2-0 silk tie. The distal catheter was then inserted into the peritoneal cavity with the assistance of general surgery. All wounds were then irrigated with antibiotic solution until clear. The galea was closed using sequential 2-0 interrupted inverted Vicyl suture followed by running 3-0 Vicryl suture and a running 3-0 Monocryl suture for skin. The abdominal incisions were closed using sequential 2-0 Vicryl suture, followed by 3-0 Vicryl suture, followed by a 4-0 monocryl suture for skin.

The shunt was tested with irrigation and Dr. IN then re hooked it up to the shunt. So, at this point, then the abdominal cavity was examined there was no injury to the bowel, there was no other pathology there was good homostasis and no drains left in place.

All needle counts, sponge counts and instrument counts were correct at the end of case x2. The patient tolerated the procedure well, and was transferred to the recovery room in stable condition.

I was told later there were pieces of the distal catheter floating around my abdomen which were removed. There were also pieces behind my right ear.

Above: Stitches after distal catheter revision in May 2014.

I didn't get any sleep the night of this surgery. I could feel the new catheter which had been added in my abdomen. I tossed and turned all night maybe I managed to get 20 minutes of sleep.

You what happens when you don't get any sleep.

In the morning I got up and sat in a chair next to my bed. Around 9am, Dr. IN came into my room with who I believe was a student. He was making his rounds checking on all of his patients. I don't recall him asking me if it was okay or not for this person to be there.

The first thing he said to me was:

Dr. IN: Well, I guess when Veronica's shunt is not working, I should listen to her.

I almost kicked him in the face or somewhere else. I probably would have had I actually gotten sleep the night before. I was livid. I didn't look at him. I just said:

"Discharge me, I want to go home."

He agreed then left the room with the student.

Moments later, my family came to visit. I then expressed how angry I was at his comment. I also asked the nurse to shave the other side of my head... This way hair could grow back evenly. As mentioned in previous posts, surgeons shave the side of the head they are working on. Whenever you have surgery on your scalp, the hair doesn't grow back, it grows around and over the scars. See photo on the right of hair growth after surgeries in 2014.

For the first time in 5 years, my shunt was working properly.

The type of shunt he had given me was one of those programmable ones...

This one in particular wasn't one of those were you know the exact setting as soon as it's placed. This one you have to wait a while to see what the right setting.

It took an additional three months to get the shunt on the correct setting. The first time I went back in June 2014...Dr IN told me I had to get used to the shunt on my own. Another doctor had told me different. He had said he didn't use that type of shunt because it takes months to know what the right setting is.

When I saw Dr. IN for the last time in August 2014. He made an adjustment and told me to call him back in two weeks to let him know how I was feeling.

I didn't call him back.

My eyes were still crossed by the end of 2014. I would get my vision corrected in 2015.

2014, Part 1

2026-02-22T13:07:00.000-08:00

I started writing this blog in 2013. In the spring of 2013, I started a Master's degree in Social Work. Because of what happened with my shunt in 2009, I decided to stay 1 to 2 months ahead of my homework assignments out of paranoia. This way, if I needed surgery and/if would be out of school for 3 weeks I would at least be caught up by the time I returned to school.

In August 2013, I was standing up and felt a vibration throughout of spinal cord and head. I almost fell on the floor involuntarily. This only happened once. The vibrations in my head continued...

I saw Dr. IN and told him about this and he said the following:

'"If it continues to happen in December, We'll fix it."

Now he was having me do a X Rays like every three months. I'm surprised I didn't glow green from the radiation.

At that time I was starting to loose my appetite. I would only eat when I got hungry which was once a day.

Anytime you have a lack of appetite and vibrations in your head and you have a shunt it is a medical emergency. Why? Because it means the shunt could be broken.

I had more tests done and Dr. IN didn't know what to do.

In the middle of February 2014 I had an MRI because things were getting worse. The radiologist had mentioned there was a 5ml stroke developing on the right side of my brain. I didn't know this at the time.

When I saw Dr. IN again at the end of February, I had insisted I needed surgery.

VB:" I need to have a full revision. It's suppose to go on the right side." - A full revision is when they change the shunt valve, the catheters in my stomach and neck. The last time I had this done was in 1993 when I was 11 years old.

*I had never had this thought prior to seeing him, I just blurted it out. I suspect it was divine intervention or my late grandmother whispering in my ear or something...

Dr IN - "It is on the right side."

VB: "No it isn't. You need to fix that."

Remember, in 2011 Dr IN. had moved the valve to the right side and left the distal catheter on the left side.

Dr. IN - "I've done a million of these surgeries and I know when shunts aren't working."

VB: "I'm sure you're very good at what you do. I've had this in my body since I was a baby and I know when it's not working and you need to fix it."

More divine intervention.

Dr. IN - "You could have a stroke."

I realize now he was saying this because of the MRI results.

VB - "That's the risk for any surgery."

Dr. IN - "Ok. We'll schedule surgery for March 6."

My mother and I had brought in my x rays from 1995 (I was 14 at the time) We wanted him to see them and as soon as we mentioned this he said:

Dr. IN - I don't need to see those."

VB and Mom: "What do you mean?!''

Dr. IN - "I don't need to see those."

He literally put his hand up before we even took the x rays out of the envelope. Prior to the use of digital imaging -You were given the actual X Ray images on large sheets.

Again, I realize Dr. IN ( Dr. Incompetent ) didn't want to see them because had we been able to compare the 1995 images to the February 2014 ones it would have been obvious something was wrong.

When I was being taken into the operating room on 3/6/14 - I was talking to Dr. IN for a few minutes asking about what everything looked like. He was confused as to why I would be curious about this. ( I didn't tell him or anyone I was making a short film about my shunt.) Next thing I knew - Everything went black.

I suspect my shunt stopped working at that moment.

Operative Report

Date of Surgery: March 6, 2014

Preoperative Diagnosis: Ventriculoperitoneal shunt failure

Postoperative Diagnosis: Ventriculoperitoneal shunt failure

Anesthesia: General Endotracheal Anesthesia

Estimated Blood Loss: 25 mL

Findings: Opening Pressure approximately 15 mm of water.

Complications: None *This was not true as we will see later..

Procedure:

The patient is a 32 year female who presents with signs, symptoms and radiographic evidence of slit ventricle syndrome. The patient had had increasing headaches and unchanged ventricular size on CT imaging. The patient underwent ICP monitoring and was found to have no elevation ICP verses headaches. Given these findings, it was recommended that the patient undergo exploration of her VP shunt under presumed diagnosis of a partial proximal obstruction.

Anesthesia: The patient was sedated and intubated without difficulty by the anesthesia service. Eyes were taped shunt after ointment was applied to prevent corneal abrasion.

Operative Technique:

We first began by disconnecting the valve from the distal catheter. Once this was accomplished, a manometer was then inserted. Once this was accomplished, attention was then turned to the left frontal area, which was then opened sharply with a #15 scalpel blade using a combination of blunt and sharp dissection as well as monopolar electrocautery. The left front bur hole was then identified. The ventricular catheter was then disconnected from the valve on the right frontal incision and minimal CSF was noted to be dripping. At his point, the neuroenddoscope was then brought into the field. The NeuroPEN was then navigated through the left frontal catheter and was found to be stuck; however, the ventricular system could successfully be navigated. Once this was accomplished, it was noted. However, there was slow pulsation of CSF through this catheter. Given these findings, we decided to proceed with a right frontal ventricular insertion using an 8 drill bit, a burr hole was then created in the right frontal region. Once this was accomplished, the dura was then bipolarized and incised with a #11 scalpel blade. The ventricular catheter was then inserted to a depth approximatley 6 cm. Brisk CSF flow was noted upon entry. Next, the NeuroPEN endoscope was then brought into the field adn the ventricular system was navigated critical landmarks including the right sided choroid plexus. formamen of monroe, and septal epllucidum were identified. The catheter was then inserted through the right formen of monro. The third ventricle catheter was left withing the third ventricle.

Next, the programmable valve was brought into the field along with a 10 cm anti siphon device. The valve was then connected to the distal catheter and then connected to the proximal catheter. The shunt was again tapped verifying the patency. The wound was then copiously irrigated with an antibiotic solution until clear. Both wounds were then closed with sequential 2-0 Vicryl suture followed by running 3-0 Monocryl suture for the skin. Sterile dressing consisting of Mastisol, Steri Strips, Telfa and Tegaderm and Coban was then applied. All needle counts, sponge counts and instrument counts were correct at the end of case x2.

Admitting Physician: Dr. IN.

Signed by Dr. G at 12:15PM.

Dr. IN had told my family while I was in a coma in the ICU that when they moved the distal catheter to the right side was when I had a stroke.

This was not true.

Dr. G the other physician in the OR had written the following:

The patient is status post VP shunt revision with removal of the left frontal approach ventricular catheter and placement of the right frontal approach ventricular catheter with tip near the froman of Monroe to anterior third ventricle, there is expected postoperative pneumocrephaly, intraventricolar air within the frontal horms of the lateral ventricles, and subcanous emphysema within the right frontal scalp, T=

There is a focal hemorrhage in the region of the left thalmus measuring 7x10 mm at the site of the tip of the prior ventricular catheter Acute 5 mm intraparenchymal hemorrage in the right paraedian pons has developed since 2/22/2014. The size and configuration of the ventricular system is similar to prior exam. No hydrocephalus. no depressed calvarial fractures.

Impression:

1. Shunt revision as described above.

2. Focal acute 10 mm hemorrhage in the left thalmic region.

3. Focal acute 5mm intraparaenchymal hemorrhage in the right paramedian pons has developed since 2/22/2014.

There was blood coming out of my right ear - I know this because I heard a nurse make a comment that there was dried blood in my right ear.

In summary I had the following:

10 ml hemorrhage on the left side of my brain followed by a hemorrhagic brain stem stroke and a Traumatic Brain Injury. Then on the right side of my brain, I had a 5ml stroke. Technically the injuries I had were what you would get from external head trauma. I.e car accident, blunt force trauma to the head.

When I woke up in the operating room, my entire body was stiff and numb. I thought when I died I would go back to a spaceship. (I like science fiction and I think I came from one.) Or I would see a white light or hearing music playing, maybe see a dead relative and there was none of that. I was just in this room with one eye shut closed. My right eye was pointed down and inward toward the inside of my left eye. I was able to move it out a little. My first thought was: What happened and can I still breathe? I took a breath through my nose - When that worked, I thought, Ok! This is good, this is good I can still breathe, let's try that again. I took another breathe through my nose and thought 'Good! I can still breathe"

Dr IN came to me and said "You had a stroke you're going to rehab."

VB: (thinking) What?!

I was still confused about what had happened. I was trying to analyze the situation, do an assessment.

Moments later, my mom walked up to my left side and I told her the following:

VB: Everything is numb. Everything is numb.

When I told her this, I could just barely lift my arms up ( they were stiff as a board like the rest of my body)

Then everything went black (again).

While I was in a coma....I saw all these pretty swirling colors of green, blue, pink and violet. I learned later those were the same colors in the machine I was hooked up to.

Dr. IN told my family the following:

Dr. IN: "We did what you told us to do. At least she didn't have a stroke in her forehead."

Meaning that he was only following my instructions. Yes, having a stroke in my forehead (prefronal cortex) would have meant I wouldn't remember how to speak.

Why would Dr. IN tell my family and myself that I only had a stroke?

I learned while in rehab, that I had multiple brain injuries during surgery...I would have surgery again in May 2014...

2011

2026-01-25T07:52:00.000-08:00

For about two weeks this month I had elevated pressure in my forehead and nausea from the shunt adjusting itself as it does at times. I also had a headache in the back of my head from the chiari malformation in addition to pain behind both eyes. Medication reduced some of the pain and then it just returned again. It's for this reason why I don't bother with pain medication unless it's really making me uncomfortable.

Let's continue reading about my shunt revisions leading up to 2014:

In out last exciting adventure, I had surgery in 2009 after my shunt became obstructed weeks before I was to graduate with a Master's in Art Education. I started seeing Dr. I at a different hospital since Dr. RH never returned my multiple phone calls after I had experienced concerning complications post surgery. My shunt had been moved to the opposite side of my brain and I almost died. I didn't know at the time the shunt was on the wrong side of brain.

The morning of February 16, 2011 my shunt became obstructed. The night before I had felt a pain behind my right ear which I had never experienced before and I didn't suspect anything. The morning of 2/16/11 I was unable to walk and I was vomiting everywhere. I couldn't lift up my head because of intracranial pressure. I went to the emergency room for another shunt revision surgery:

Preoperative Diagnosis: VP Shunt Malfunction

Postoperative Diagnosis: Same as above.

Operation: Exploration of VP shunt and placement of new left ventricular catheter and new medium pressure valve.

Anesthesia: General Anesthesia

Estimated blood loss: 20 cc

Specimen: Old ventricular catheter and old medium pressure valve sent to lab

Counts: All sponge, needle and instrument counts for this were correct.

Complications: None.

Findings:

Indications:

The patient is a 29 year old female who had intraventricular hemorrhage at birth and was premature. The patient had a VP shunt placed after birth. The patient has had multiple VP Shunt revisions. The last revision was done approximately two years ago.

The patient came to the ER and a CT scan showed that the ventricular system was enlarged compared to the previous rapid MRI done in March 2010. The patient also had a shunt series which showed that the shunt was intake. I had a shunt tap done at that time. ( this is when they insert a needle inside the top of the shunt is to determine how CSF is flowing. I've had these done before like in 1992 when I had a partial revision in the summer.)

The patient had a shunt tap done and there was very poor proximal flow seen. CSF was sent to the lab for routine gloucose, cell count and gran stain culture. The patient was preoped and taken to the operating room for VP shunt revision.

Procedure:

The patient was brought to the operating room and placed under general anesthesia. Once the patient was intubated and sedated all the appropriate lines were placed. Patient's head was placed in a horsehoe head holder. The head was turned to the right. The hair was clipped with a hair clipper. The patient was known to have a left ventricular catheter and the ventricular catheter crossed midline to the right of the frontal valve. The distal catheter ran down the right side into the peritoneal cavity. The patient was prepped out for an entire VP shunt revision. (This refers to a full revision, like the one I had in 1993).

The head was turned to the right and alcohol and Chloraprep were used to clean the skin. We planned to use the two scalp incisions, one on the right and one on the left. We also planned to use the previous abdominal incision if necessary. Chloraprep was used to prepare for the final incisions.

The drapes were placed in the usual sterile fashion. Once the drapes were on, the head midline. We used a scalpel blade to open the two scalp incisions. The Bovie cautery was used to dissect down to the skull.

The tissue was quite adherent and scarred. We irrigated thoroughly with antibiotic irrigation. We placed two self-retaining retractors to gain exposure to the proximal ventricular catheter as well as the valve. We cut the proximal catheter at the left sided incision and saw that we had very poor proximal CSF flow. We therefore diagnosed a proximal shunt obstruction. We clamped off the proximal catheter. The fluid column ran very poorly through the valve and distal catheter. We then cut the distal catheter at the right scalp incision. We discarded the valve at that point. Then we connected the manometer to the distal catheter with no valve. The fluid column ran down fairly well and therefore the distal catheter was working.

We irrigated copiously with irrigation. We connected a new medium pressure vale to the distal catheter We secured it with a 2-0 silk tie. We then removed the proximal ventricular catheter. It was slightly difficult to remove so we passed a stylette first through the old ventricular catheter. we coagulated the stylette with the Bovie catuery and gently removed the ventricular catheter. Once it was removed we passed a new antibiotic coated ventricular catheter in a similar trajectory but we used a stylette and aimed slightly more medial. We saw good clear CSF proximal flow. The catheter was then tunneled from the left scalp incision to the right scalp incision. The new ventricular catheter was cut to the appropriate length so it could be connected to the new valve. It was also secured with a 2-0 silk tie.

We then took a 25 gauge needle and inserted it into the reservoir of the valve. We had good proximal flow. We then irrigated again with antibiotic irrigation.

We closed the two scalp incisions with 2-0 Vicryl suture. We closed the skin with 3-0 Monocryl. We placed the antibiotic ointment and Telfa over the incisions. We placed Tegaderm on the Tefla. The patient was extubated and taken to the PACU in stable condition.

During the surgery, the shunt valve had been moved from the left side to the right side where it belonged. However, the distal catheter remained on the left side. Dr. IN had told my mother this during an update phone call. When we saw him for my follow up appointment, I had brought him a small box of cookies to say thank you. We had thought at the time that only the valve had been moved to the wrong side during the 2009 surgery. After this surgery, I didn't have issues with my shunt again until 2013. I started writing this blog that year as I didn't know what was going on at the time. Something felt 'off' to me. As mentioned above, I only have hydrocephalus when my shunt isn't working. When it is working I am 'cured' until it stops working again. Make that make sense.

There's a reason why I refer to Dr. IN as Dr. IN - I'll explain more later...

2009

2025-12-02T10:05:00.000-08:00

In 2003, I was told the pediatric neurosurgeon who had done my previous surgeries had moved to adult medicine and wasn't available. I was given a new surgeon, we'll call him Dr. S.

In the Spring of 2009, I had survived student teaching in art education the previous year (2008). I was getting ready to graduate in May.

Of course, six weeks away from graduation...My shunt decided to stop working at the worst possible moment.

On the morning of April 7, 2009 - I woke up to my shunt obstructed. I was vomiting everywhere, stumbled around as I was unable to walk and my head tilted to the right as cerebral spinal fluid filled up inside my skull. This also causes an incredible amount of pain because of the intracranial pressure inside the skull.

I was 27 and as an adult, I had a little more control over my body. I could get dressed and walk a little. With previous surgeries as a child, I would have to be carried into the hospital.

I was taken to the ER at the hospital I had always gone to. However, upon arrival I was told my doctor Dr. S wasn't there and someone else would have to do my shunt revision. Dr. RH was assigned to my case.

As I may have mentioned before, a vp shunt are different parts to it. For example there is the valve, the ventricular catheter and the distal catheter that runs down the side of my neck into my stomach. See picture here

I arrived at the ER early in the morning. One person came to put an IV in my hand. Several attempts were made and the person wasn't successful. The needle was dropped on the floor and they left and never returned. Hours later, I was then moved to a private room in late afternoon. I was dehydrated having not fluids in my system for over 10 hours. I was also in a lot of pain. I was wheeled in to the Operating Room fully awake with no IV in my left hand. My shunt is on the right side.

There was a debate about where to put the IV. I had suggested the left hand and was told:

"The vain in busted and we can't use that one."

I suggested my right hand.

"No we can't do that because the side your shunt is on. Maybe we can put it in your left foot.''

I was horrified by this suggestion.

Putting it in my neck wasn't an option either. I had IV's placed in my neck when I was a baby. This wasn't done again as I got older.

Then someone said:

"What about the wrist?"

Again, I was horrified by this suggestion. I had no choice though....

An IV needle was inserted into my left wrist. In my right hand, I was squeezing the hand of someone in the room as it was very painful.

Then I fainted.

Before surgery, the anesthesiologist is suppose to see you and ask you to open your mouth this way they can properly measure what size intubation tube to use.

I never saw anesthesiologist before going into the OR.

The intubation tube used on me was too large.

In my previous surgeries the only side of my head that is shaved is the side they are working on. For example, my shunt is on the right side of my brain and only that side of my head is shaved. See previous surgeries.

Pay attention to the following Operative Report.

Procedure Date: 4/7/2009

Preoperative Diagnosis:Ventriculoperitoneal shunt failure with hydrocephalus

Postoperative Diagnosis: Ventriculoperitoneal shunt failure with hydrocephalus

Operation:

Right Sided Proximal revision of vetriculoperitoneal shunt

Anesthesia: General

Estimated Blood Loss: Minimal

Complications: None

Indication for Surgery:

This is a patient who underwent shunt placement a long time ago and now presented with headaches. She had a CT scan that shows clear increase in the size of the ventricles as compared to previous imaging studies. Therefore, a decision was made to offer revision of the shunt system.

PROCEDURE:

The patient was brought into the operating room and was intubated and anesthetized by anesthesia. She was positioned on the operating room in supine position, and the patient's right side of the head was shaved and the left side as well, the right side of the neck was shaved and then prepped and draped down to the abdominal area.

There were two scalp incisions, 1 on the right side, 1 on the left side, and the bur hole had been placed in the left side. Both incisions were opened, and the shunt system was identified. The proximal part was disconnected, and there was no spinal fluid flow of the proximal catheter. The distal runoff was fine and therefore, the decision was made to keep the distal part of the catheter in place and replace the proximal aspect. The ventricular cathether was removed carefully, and the new ventricular catheter was placed through the same hole and it was then connected to the valve.

Before connecting it to the valve, there was clear CSF flow out of the ventricular cathether. The connection was then secured with Vicryl sutures, and the area was irrigated with antibiotic solution.

Again, it was closed using 2-0 Vicryl sutures. The skin was closed using running nylon sutures. The area was then irrigated with antibiotic solution. The patient was extubated and brought to the recovery room in stable condition. Preoperatively, the patient received 1 gram of Ancef, and a verbal order was given to continue this for 24 hours after surgery. A verbal order was also given to start DVT prohylaxis with low molecular weight herparin within 24 hours after surgery.

DD: 4/07/09

The intubation tube was too large for me and I stopped breathing after the surgery. Not sure how I survived my shunt being moved to the opposite side of my brain. At the time, I didn't know that my brain had almost herniated during surgery. This is where I developed the chiari malformation (type 1) by my cerebellum.

I opened my eyes to feel my lungs burning. I tried to take a air into my lungs and the oxygen stopped in my throat as I could still feel the tube there. I gasped that I couldn't breathe, a nurse came in to give me oxygen. When she told me to breathe, I still couldn't take in air as I could still feel the tube there. I gasped again tears running down my face as I was finally able to get some air into my lungs. Then she left.

The only time I saw the attending doctor (Dr. RH) was when I was in the OR. I never saw him again afterwards.

Then a nurse came in to discharge me. My mother asked:

"Where's the doctor? Doesn't he want to see her.?"

The nurse replied: "He's in surgery right now."

No one gave me instructions on what to do when I came home. I wasn't given antibiotics or anything. This is different from what was written in the report.

I returned home and was having severe headaches and had problems waking up when sleeping.

We told the hospital about this and we were told:

"Well, if it happens again, let us know.''

This was concerning....

I would think that if a patient who just had a shunt revision surgery complained about severe headaches and problems waking up from sleep that would be a serious problem.

I called Dr. RH and my phone calls weren't returned.

About week after I was home, a white substance was leaking out of the wounds in my scalp. I returned to the hospital and it was determined I had an infection. I was then given antibiotics.

Again, the surgeon wasn't available, and the nurse practitioner was the one who saw me. Again, we asked to see someone. A physician assistant came to see me. We looked at my X Rays and he said: "Everything looks good to me."

Frustrated, we took the copy of the X Rays on CD and left.

I continued having severe head pains and again returned to the hospital. Now the doctor who I was assigned in 2003 was now back at the hospital. I was examined and X Rays looked at again. I had some issues with balance and walking and Dr. S determined everything was ok I was sent home again.

I didn't return to see Dr. S or that hospital again.

I returned to school after being away for three weeks. The semester ended two weeks later. I drove myself crazy trying to get everything done before the semester ended. I was still having severe headaches and had to leave class one day because the pain was very bad.

In May I graduated with my Master's degree in Art Education. Then in September, I found another hospital and a new neurosurgeon. Also at that time, my cat Luna died (1999-2009). When I came home from the hospital in April, she would sit in my room on the edge of my bed.

This new doctor, Dr. IN, couldn't figure out what was wrong with me either, he was willing to take my case.

In 2009, after my surgery, there are some people who were yelling at me saying I needed to be more responsible about my shunt.

As if I had control over when my shunt gets obstructed.

It was explained to these people that I have no control over my medical device and condition.

It just stops working.

Anyone who has a shunt or knows someone with a one would tell you the same thing.

After 2009 I wouldn't have surgery again until two years later.

1992 and 1993

2025-10-07T04:54:00.000-07:00

In July 1992 when I was 10, I had a partial shunt revision. Not half my head of hair wasn't shaved.

However, seven months later my shunt stopped working in February 1993. I woke up one morning to the following symptoms from intracranial pressure:

Vomiting, inability to walk, and very severe headache. I needed to be carried into the Emergency Room. Of course, in the ER you have to wait a very long time before anyone can actually see you. Eventually I was moved to another room.

As we were waiting for my neurosurgeon to arrive, another doctor came into the room and said the following:

'We have to wait until tomorrow morning to do the surgery.'

Upon hearing this, I knew I was going to die and how unfair this was.

I was 11.

My mom and another woman in the room started yelling at this doctor explaining why they couldn't wait until the following day.

Then, my doctor came into the room and said:

"We can't wait until tomorrow because she is under neurological stress and will be in a an irreversible coma by the morning. We have to do surgery now.'

Intracranial pressure from cerebral spinal fluid will cause brain herniation - Which would cause the brain to be pushed toward the spinal cord. It's a life threatening situation.

I was then taken into the operating room for a full shunt revision. Where they changed both the valve and the distal catheter for a full shunt revision.

Again, I was 11.

Preoperative Diagnosis: Obstructed Ventriculopetrioneal shunt

Procedure: Removal and replacement of vp shunt.

Anesthesia: General Endotracheal Anesthesia. Utilizing Frane Administered.

Procedure: The patient was taken to the operating suite, anesthetized and intubated and placed on the operating table in supine position. Head, neck, chest and abdomen were suitable shaved and prepped. The old curvilinear incision in the scalp was reopened. The abdominal catheter was disconnected from the Rickham reservoir and there was found to be no flow from the Rickham reservoir.

Nanometer was used to test the flow through the abdominal catheter which was found to flow down to a valve of approximately six centimeters of water. The Ventricular and Rickhan reservoir were removed. A brand new ventricular catheter was placed in the left frontal horn on a single passage with a flow of clear fluid under pressure. This was connected to a new Rickham reservoir. The Richkam reservoir was connected to the abdominal catheter and connection secured with 2-0 surgilon ties. The wounds were irrigated with saline solution and closed in layers from inside out utilizing 3-0 interrupted, stainless steel staples in the skin. A standard dressing was placed on the wound. The patient was taken to the Recovery Room in satisfactory condition.

I had surgery the day before the Michael Jackson and Oprah Winfrey interview. Everyone on the children's floor was watching this interview that night (2/10/93) I left the hospital on 2/12/93.

Ah, stainless steel staples....

I was home from school for a week while the wounds in my abdomen and scalp closed. I got to wear a hat at school which made me stand out more than usual as they weren't allowed. I was the only black student in the elementary school...

My classmates (who sent me a card) and teachers knew why I was wearing a hat. The rest of the school did not know this. I would walk by students who would whisper 'She's wearing a hat...'

The staples had to removed with a tweezers at the hospital after some time. I was taken out of school for this. I could feel each staple coming out of my skin which was painful.

I'm just one of many people who has had major surgery during childhood....

After this, I didn't have surgery again for almost 17 years....

1985, Part II

2025-09-01T06:02:00.000-07:00

Well, like most 3 year olds, I was running around crashing into things. From what I was told, my family and I were out of state on vacation. I was running around and crashed head first into the corner of a table. This turned off my shunt. My body went limp and I was unconscious. We returned home to the hospital to have another revision:

Veronica is a 3 1/2 year old female who did well until recently when she had a VP shunt replaced approximately six weeks ago. The course over the last 48 hours, however, she once again developed headaches, nausea, vomiting and lethargy. Was taken by her mother to the hospital ER where the tap of the shunt revealed no spontaneous flow of fluid out through the Richham reservoir Fluid could be aspirated with a syringe. A CT scan revealed frank ventricular dilation and there fore the patient was taken to surgery this morning for a revision of her shunt.

DATE: 11/1/85

PROCEDURE:

Operating Suite, anesthetized, intubated placed on the operating table in supine position with her head slightly turned toward left shoulder. The right and left sides of the head were shaved, prepped and draped. A curvilinear incision straddled the cornal suture was made on the left side of the midline, carried on down to the skull.

A single burr hole was placed in the intrapupillary line just rostral to the cornal suture on the left side. A ventricular catheter was placed into the left front horn on a single passage with the return of clear ventricular fluid under high pressure.

The ventricular catheter was connected to a Rickham reservoir and the Richham reservoir connected in turn to a medium pressure anti siphon containing Heyer Schulte device. The connections were secured with a 2-0 interrupted ieurilon ties. The old right frontal incision was reopened. The Richkam reservoir disconnected from the ventricular catheter and there was no spontaneous flow of fluid. The holter valve was drained up into the wound and disconnected from the abdominal catheter and the manometrics into the abdomen tested and found to be satisfactory.

The spring distal abdominal catheter was then connected to the multipurpose device and secured with a 2-0 interrupted neurlon tie. The ventricular cathether on the right side was removed. Wound was irrigated with saline and bacatracin solution. The wounds were then closed in layers from inside out utilizing 3-0 interrupted Dexon sutures and 3-0 running ethilon sutures in the skin. Standard dressing was placed on the wound and the child was taken to the Recovery room in satisfactory condition.

I remember hearing the surgeon say 'Oh she just turned off the valve, we'll reset it.' Next thing I knew, I was awake in the hospital.

1985, Part I

2025-08-13T14:57:00.000-07:00

In 1985, I was 3 years old and my shunt became obstructed:

10/9/85

Postoperative Diagnosis: Obstructed and distracted ventricular peritoneal shunt.

Operation: Right Ventricular peritoneal Shunt, Removal of Old VP shunt with abdominal alparotomy for removal of abdominal catheter.

Note:

Patient is almost 4 years old and underwent VP shunting at birth. She has done well until just recently when she had some headaches and recently had a CT scan which revealed essentially normal size ventricles and intracranial pressure of approximately 200. She was sent home to be watched by her mother and then returned on this date, approximately two weeks later complaining about pain in her head, abdominal pain with nausea, vomiting and lethargy. Richham reservoir was tapped and no fluid could be obtained.

A shunt series revealed the abdominal catheter was completely contained within the abdominal cavity, Patient, therefore underwent a repeat CT scan which revealed dilated ventricular wire cath and patient was taken to surgery for replacement after removal of the old VP shunt.

OPERATION:

Patient was brought to the OR Suite anesthetizes, intubated and placed on the OR table. The old curvilinear incision in the head as extended. A brand new burr hole was placed. A flange barium ventricular catheter was placed in to the right frontal horn with a return of clear fluid.

The old Rickham reservoir and ventricular catheter were removed from the old site and the new ventricular catheter connected to the new Richkam reservoir which was connected in turn to a medium pressure Holter valve (mannometrics tested prior to placement).

A new abdominal incision just below the old one was lateral on the right side of the abdomen. A brand new spring distal low pressure abdominal cathether was brought up to the abdominal wound up to the head by the means of two stab wound incisions and a subcutaneous tunneler device. The peritoneal and posterior sheath were closed with a #4-0 interrupted Nurolon suture except in a small segment in which a purse-string suture was placed around the catheter which was in the abdominal cavity.

The wounds were irrigated with saline and Bacitracian solution and then closed in layers from inside out utilizing #3-0 interrupted Nurgulon sutures. The skin was closed with #4-0 running Ethilon sutures. Standard dressings were placed on the wound.

The child was taken to the Recovery Room in Satisfactory condition.

I was discharged and sent home.

I had to return to the hospital six weeks later....

1982

2025-07-12T05:14:00.000-07:00

Time to take a look at previous shunt revisions. Beginning with the first one. I was born three months early in December 1981. I was not expected until March 1982. In May 1982 when I was 7 months old, I had a brain bleed ( which is common for preemie babies) I wouldn't stop crying. My pediatrician couldn't figure out what was wrong. I eventually had a seizure and was rushed to the Emergency Room:

The following is the operative report and diagnosis:

Surgical Operative Note

Date: 5/7/82

Operation: Right Ventricular Peritoneal Shunt

Post Operative Diagnosis: Hydrocephalus

Anesthetic: General Endotracheal Utilizing Halothane

Procedure:

The patient was brought to the operating suite, anesthetized, intubated and placed on the operating table. Head was turned toward the left shoulder. Head, neck and abdomen were suitably shaved, prepped and draped and then a curvilinear incision in the intrapupillary line just in front of the cornal suture on the right side was made through skin carried on down to the skull.

Small craniectomy was performed. The dura was coagulated and divided as was the pia archnoid. a Rickham ventricular catheter was placed into the right lateral ventricle in a single passage and connected to a standard Richkam Reservoir which was connected and turned to a medium pressure spring distal abdominal catheter.

The spring distal abdominal catheter was brought by means of a subcutaneous tunneling device down to a skin incision which was made just above and lateral to the umbillius on the right side of the abdomen.

The abdominal incision was approximately 5 cms long. It was made through the skin, carried on down to the anterior rectus sheath and peritoneum were opened sharply whereupon a spring distal abdominal catheter was placed into the abdominal cavity.

All wounds were irrigated with Bacitracin solution and then the posterior sheath and peritoneum were closed with a #4-0 suture of neurilon. The anterior sheath as closed with #4-0 dexon sutures and then the subcutaneous tissues and the gale were closed with #4-0 interrupted dexon sutures. The skin was closed in all instances with #4-0 ethilon sutures.

Standard dressings were placed on the wound and the patient taken back to the Recovery Room in satisfactory condition.

Dictated by M.D.

D: 5/10/82

T: 5/11/82

I am not the first or last person to have major surgery at such a young age. From what I've been told, after I had my first shunt was placed, I was the happiest baby ever. Nothing bothered me again after that.

The next revision would be when I was three....

The Timeline Series is a good review of things that were going on in 1982.

New Images

2025-05-07T07:23:00.000-07:00

I had new X Rays and CT scans done to make sure everything is working. The imaging

in these scans is different from the ones in 2023. The 2023 X Rays weren't as bright.

X Ray Image of Shunt October 2023

Report below as follows

My VP Shunt X Ray April 2025.

EXAMINATION:

SHUNT SERIES

CLINICAL INFORMATION:

Baseline shunt series for patient feeling well with vp shunt Z98.2 Presence of cerebrospinal fluid drainage device.

TECHNIQUE:

AP and lateral views of the skull, chest, abdomen and pelvis

COMPARISON:

CT head dated 11/29/2023. Cervical and abdominal radiograph dated 10/18/2022.

FINDINGS:

Right frontal approach ventricular catheter traverses the soft tissues of the neck, chest wall, and abdomen and enters the abdomen with distal tip in the left lower quadrant. No kinking or discontinuity of the shunt is identified. An additional abandoned catheter projects over the soft tissue in the right neck and catheter coursing below the diaphragm with tip projecting over the right mid abdomen as before, unchanged.

*Abandoned catheter refers to the original distal catheter from a 1993 revision that couldn't be removed during the 2nd surgery in 2014. The distal catheter had been in place for 26 years and had fused with my body. Therefore, a new catheter had to be added.

IMPRESSION:

Right frontal approach ventriculoperitoneal shunt without evidence of kinking or discontinuity. Other findings as above.

CT Scan of Shunt April 2025. Reminds of my cantaloupe....
My shunt is the little white dot. I'm not sure how they can tell I have slit ventricle syndrome. I didn't have slit ventricle syndrome until my shunt was moved to the wrong side of my brain in 2009.

11 years and a Blue Octopus

2025-03-01T11:11:00.000-08:00

This week marks eleven years since surviving multiple brain injuries in March 2014. I needed two surgeries to fix my shunt. The incompetent neurosurgeon at the time didn't listen to me when I told him I needed the entire shunt repaired the first time. I had a 2nd shunt revision surgery in May 2014.

I am both grumpy and grateful. Grumpy like the blue octopus on the right. Like many people living with a chronic illness and chronic pain most of the time...It reminds me of this scene from The Avengers (2012).

My incompetent neurosurgeon reported I only had a stroke. The resident doctor working with him in the Operating Room ("Dr. 2") reported I had multiple brain injuries. Now why would the surgeon only report I had one stroke? Denial is not a river...

Let's look at resident doctor's operative report from March 2014:

Patient is status post VP shunt revision with removal of the left frontal approach ventricular catheter and placement of right frontal approach ventricular catheter with the tip near the formen of monroe to the anterior third ventricle.

There is an expected postoperative pneurocephaly, Interaventricular air within the frontal horns of the lateral ventricle and subcutaneous emphysema within the right frontal scalp.

There is a focal hemorrhage in the region of the left thalmus measuring 7x10 mm at the site of the tip of the prior ventricular catheter.

Acute 5 mm intraparanchymal hemorrhage in the right paremedian pons has developed since 2/22/2014.

The size and configuration for the ventricular system is similar to the prior exam. No hydrocephalus. No depressed calvarial fractures. The visualized para-nasal sinuses and mastoid air cells are unremarkable.

This critical result value was discussed with "Dr. 2" at 4:45pm on 3/6/2014 with feedback verification.

Impression:

1. Shunt revision as described above.

2. Focal acute 10 mm hemorrhage in the left thalamic region with a component which may not be intraventricular or intraparaenchymal.

3. Focal acute 5 mm intraparanchymal hemorrhage in the right paramedian pons has developed since 2/22/2014.

"This critical result value was discussed with "Dr. 5" at 4:45PN on 3/6/2014 with readback verification.

Resident Radiologist. Attending Radiologist. Finalizing Radiologist. Transcribed date: 3/6/2014 14:32. Finalized Date: 3/6/2014 17:05.

While in rehab in inpatient therapy, I learned I had more than one brain bleed while listening to a conversation between my physical therapist and the neuropsychologist. The physical therapist knew I had more than one bleed - My right leg would cross over the left leg. The neuropsychologist was confused by her comment as he said. 'She only had a stroke." (as reported by the incompetent neurosurgeon) Where she replied "No she didn't. She had more than one bleed. I can tell because of how her legs are moving."

When I got out of inpatient rehab and started outpatient therapy I ordered the reports.

In 2015, I made a film about this to spread awareness about hydrocephalus and brain injury. I was also angry about what happened. ( no reason, right?)

My film, Shunt Chronicles My Brain, Art and School (2015) turns 10 this year...

I am not famous, I am a starving artist with a chronic illness. Creating art, reading, and listening to music is just one of many to cope with chronic pain and past trauma. The good news is today, I feel better than I have been recently. That's all I'm saying for now. My shunt is like an unruly child sometimes...

Like every year, I have a piece of cheesecake ( see right ) to celebrate surviving and not having any additional surgeries since then. This year, I've been shunt revision free for 11 years...

Strabismus!

2025-01-18T10:44:00.003-08:00

Recently, I've been playing specific NES or SNES games just for the soundtrack. Like Castlevania II and Megaman X. Also, when I'm not feeling well, it's fun to play Mario 2 just because I can throw vegetables. I've added board games to my list of things to do as coping mechanisms. The Simon game is fun ( for short term memory ). The flashing lights on this game may make it not suitable for all people.

This year is 10 years since having strabismus surgery to correct my eyesight after my brain injuries in March 2014. After my injuries, my eyes were crossed and I had double vision for a year and twelve days. I couldn't have surgery to correct my eyesight until March 2015. This was because the surgeon needed to wait a year to see if there is any improvement on it's own before operating.

I was told before the surgery, there would be a chance the doctor couldn't get my eyesight back 100%. That there was also the possibility I would need additional surgeries through the years to maintain my eyesight. Since 2015, I haven't needed to anymore operations on my eye. I do get occasional double vision and my right eye (surgery eye) hasn't drifted to the right in a long time. I am grateful for this.

I continue to have shunt, scalp and eye pain (needle like pain in eye) associated with both my injuries and unruly shunt. After my strabismus surgery, the surgeon said to me: 'If your your eye drifts too far to the right and falls out, let us know. That means something is wrong.' Some may find this comment odd, I found it funny.

vitamins and then some

2024-10-19T16:02:00.009-07:00

I been prescribed a variety of medications from my neurologist for the chronic pain I have experienced from my injuries in 2014. Nothing worked in alleviating my head and shunt pain issues. I recently started taking an extra magnesium supplement when I have chronic head pain. The pain is from the injuries I had in 2014. In 2009, when my shunt was moved the 1st time - It caused a chiari malformation by my cerebellum. Since then, I get headaches in the back of my head. After my injuries in 2014, I have pain on the top of my scalp (both left and right side).

Taking an extra magnesium was recommended to me after a visit to a local vitamin store. This helps alleviate my the chronic pain in my head. However, it doesn't stop the shunt, distal catheter or occasional nausea. The pain relief is temporary. I take the extra supplement when I need to.

At least this is an improvement. Magnesium and chronic pain article.

I asked my neurologist for a referral to see a neurosurgeon. I have questions I would like to ask the doctor. I also wanted to establish a relationship with the hospital and get a 2nd backup neurosurgeon. In 2009, I had surgery and my doctor wasn't available. I was given the next available doctor and my shunt was put on the wrong side of my brain. I almost died.

I haven't see a neurosurgeon since I fired the last one in 2014.

Since it's October and almost Halloween, I decided to introduce my cat to The Twilight Zone. He falls asleep. It's a good distraction from my occasional shunt issues.

Fall again

2024-08-09T17:56:00.000-07:00

People fall on sidewalks all the time.

Last week, I fell on a sidewalk. It wasn't from my balance or walking issues, the sidewalk was uneven. I landed on my side and bruised my knee and elbow.

It's gotten better since then.

I'm glad I didn't hit my head or break my glasses.

The last time I made a crash landing on the floor, was in August 2023. I lost my balance, twirled and hit the floor again, on my right side. My glasses flew to my right on the floor unbroken.

I saw the ophthalmologist in June who corrected my eyesight in 2015. I still have occasional double vision. I still have pain behind my eyes from my injuries.

My shunt has been behaving itself until the weather gets warmer, it rains or the phases of the moon changes.

For some reason today, music from the film, Suzume have been on repeat inside my head.

Sun, moon and a garden

2024-04-23T16:32:00.000-07:00

Before April's eclipse, I was concerned my shunt would have the same reaction it did during the eclipse in 2017. I was pleasantly surprised this year. I had a some valve pain and shunt adjustment issues (nausea and pain from the catheter) the day before and a little during the morning of the eclipse. It wasn't as bad as the experience I had in 2017 where I felt like my head and shunt were being squished by gravity.

Seeing the eclipse was exciting and a little bittersweet, as it made me think about my late cat, Stella (2000-2023). We watched the eclipse in 2017 together. The fun part of the 2024 eclipse, I had a new friend ( left ) who I believe was trying to watching something out the window that day.

Later during the week, I went with a friend to a flower garden (below right). Being outside was great even though it was very windy out that day. The wind bothered my shunt and I was still able to enjoy being outdoors.

For some reason today, songs from The Hunchback of Notre Dame (1996) are in my head...

10 years later, part II

2024-03-06T11:13:00.000-08:00

This week, I had pain behind both eyes, nausea and pain along the distal catheter in my head and down my neck. My shunt is working, just making adjustments and my past injuries causing chronic pain... I had a good cry about this one afternoon. I don't speak for everyone who has an unruly medical device and/or chronic pain - Sometimes you just have bad days and you cry a lot. That was me for one day last week.

Then I played Star Fox (1993) on Super Nintendo and it made me smile. I felt accomplished when I beat one of the levels. The end title music is wonderful.

In 2009, after my shunt was moved to the left side of brain I changed doctors and saw another neurosurgeon who I thought would listen to me. We'll call him Dr. Potato ( Not to be confused with Dr. Potato head who is smarter than this physician) In 2011, I had a shunt revision and Dr. Potato moved my shunt valve to the right side of my brain, leaving the distal catheter on the left side.

In 2013, my shunt began to fall apart inside my body ( unknown to me ) except around November 2013, I started to not have an appetite due tot he distal catheter being broken in my stomach. I also started to have vibrations inside my head which would indicate part of the shunt is broken ( a medical emergency by the way ).

Again, this went ignored by Dr. Potato. Until I insisted on doing a shunt revision where my shunt stopped working during surgery and I had two strokes, a brain hemorrhage and and Traumatic Brain Injury.

Like anyone who has experienced a traumatic event and/or living with a chronic illness... I still experience the following:

Survivor's Guilt

Chronic Pain

Brain Damage

Like every brain anniversary, I enjoy something sweet. This year, I decided to be adventurous and had a slice of cheesecake. I also treated myself to a new friend ( How I feel when I experience chronic pain).

Additionally, I treated myself to a new game, which I've heard is a good memory game...

I made a film about my injuries. Again, I am just one of many people who has a cerebral shunt, chronic illness and has experienced a traumatic event. My film can be viewed here.

10 years later, part 1

2024-01-24T16:20:00.000-08:00

I woke up this morning with the theme from Teenage Mutant Ninja Turtles: Turtles in Time (SNES) in my head. I didn't have much luck playing Mega Man X due to chronic pain issues. I was more successful with Super Mario Bro 2. I got a lot of satisfaction with throwing vegetables at various characters...

This year, 2024 marks ten years since I survived multiple brain injuries while having a shunt revision surgery in March 2014. The shunt drama began in April 2009, a month before I was suppose to finish my first graduate degree in May 2009. A late friend of my mine would refer to this as Murphy's Law. On April 7, 2009 my shunt became obstructed and stopped working. I went to the hospital for emergency surgery.

I'm just one of many people who has a shunt in my brain and has a chronic illness.

When I was in the hospital in April 2009, I was taken to the operating room for surgery. During the surgery, my shunt was put in backwards. I suspect this was because the x ray was in the wrong way and no one checked this.

The reason I believe my x ray was in backwards during the surgery was because of what the surgeon wrote in the operative report:

The patient's right side of the head was shaved and left side as well and the right side of the neck was shaved and then prepped. There were two scalp incisions, 1 on the right side, 1 on the left side and the bur hole had been placed in the left side. Both incisions were opened and the shunt system was identified.

(LEFT) X Ray image of my shunt placement birth to 2009.

Upon waking up after the surgery, I felt my lungs burning as I had stopped breathing. I could still feel the intubation tube in my throat, as they had used an large size.

I'm a petite person, I need small intubation tubes.

Before I've had any shunt revision surgery, the anesthesiologist is suppose to check you before you go in for surgery to make sure they know what size tube to use.

No one saw me before the surgery.

After surgery, I couldn't breathe because I could still feel the tube in my throat and struggled to get air into my lungs. After what seemed like a very long time, I finally was able to breathe on my own with assistance from a nurse.

( LEFT ) incorrect shunt placement X Ray image (2009-2014)

The surgeon who performed the surgery never saw or spoke to me again.

I was never given antibiotics after surgery and developed an infection.

Upon coming back for a follow up appointment, I saw an assistant who gave me medication for the infection.

I developed a chiari malformation type 1 by my cerebellum after this surgery. I suspect because my brain almost herniated after this surgery.

I now get headaches in the back of my head. If I lay on my back, putting pressure on the back of my head, I will have headache pain on the top my head ( both left and right ) among other issues....

Since this doctor had refused to see me, I changed hospitals and found another doctor.

And that was only the beginning...

Mermaids and the some

2023-11-04T13:59:00.002-07:00

No chronic pain issues this week. Today is mild.

In October I experience a variety of the following:

A day when head and shunt pain didn't go away for three hours, without medication. I had the usual pain behind both eyes. I try not to take pain reliever unless I really need to.

Taking regular over the counter pain reliever usually reduces the pain I feel in my head and neck. It doesn't always eliminate it completely.

Individuals and families with an unruly medical device and chronic illness have a variety of symptoms. I'm just one of many people.

Today, I enjoyed returning to Nintendo Therapy which included Super Mario World (SNES) and The Little Mermaid (NES) I was able to focus for like one hour despite having some head pain.

Let's not forget other coping mechanisms like Music by Joe Hisaishi and reading...

in the summer

2023-09-09T16:13:00.003-07:00

September is hydrocephalus awareness month. During the summer, I attended a Pediatric Hydrocephalus Conference. It was great meeting other individuals and families who are living with hydrocephalus. Always nice to talk with others who truly understand what it's like to live with this chronic illness.

It was 10 years ago this month that I started making a short film about my shunt as it was doing some weird things inside my head. At the time, I didn't' know it was on the wrong side of my brain. I later figured this out on my own in March 2014.

Whenever I talk about my brain injuries with anyone, I always emphasize how you have to listen to your gut, as it doesn't lie to you. Had I not listened to my body back in 2013 when I felt vibrations inside my head and on my spine, I would not be here. Had I not advocated for myself and insisted my neurosurgeon do surgery, I would not be here. I later fired this doctor ( since he wasn't taking my complaints seriously ) and he got animated in my film. I always tell people if you can't advocate for yourself, then get someone else to do this on your behalf.

Like any brain injury survivor, you're just never the same afterwards. I've been having walking issues again and I'm back in physical therapy. With chronic pain issues in my head and leg this week, I found myself again listening to movie soundtracks such as Treasure Planet (2002), Blue Beetle (2023) and Sailor Stars (1997).

11:30PM

2023-08-13T07:30:00.001-07:00

Sometimes around 11:30pm last night, I was awakened by a severe thunderstorm outside. I also had pain from:

1. The chiari malformation in the back of my head.

2. Nausea from distal cathether in stomach.

3. Pain behind both eyes

4. Pain from the shunt valve and distal catheter at the top of my head.

It's been like four hours and the pain has been reduced, still lingering in the background. I'm doing this new thing where I don't take pain medication unless I really really need to.

Not sure if I'll do nintendo therapy today, as I have pain behind my eyes. It may be a reading and listening to movie soundtracks type of day. Music from films like Suzume and Spider Man are in my head today.

Two weeks and water from the sky

2023-06-30T16:35:00.003-07:00

Since it's been raining in my area. I know I'm not the only one who experiences chronic pain issues with the changes in barometric pressure and the weather.

This week:

Pain behind right eye with needle like pain in both eyes. The feeling of having a needle being pushed inside your eye all the way into the my eye socket.

Pain on the shunt valve with nausea from distal catheter.

Headache pain from the Chiari malformation in the back of my head.

Some walking issues with my left leg.

As a distraction from the chronic pain issues this week, I enjoyed reading and of course, Zelda.

Several Days

2023-05-07T17:35:00.003-07:00

For a week and a half or what feels like longer. I've experienced:

Pain behind both eyes.

Pain from shunt valve and distal catheter followed by nausea

Dizziness

Ringing in my right ear

Pain on top of scalp both left and right sides.

Today (5/7) I am feeling better.

Lately, in order to distract myself, I've starting reading various books such as Bunnicula, manga and anything else I can find.

And of course, the Reading Rainbow theme song has been in my head....

May is Stroke Awareness month.

Super Super

2023-04-11T12:19:00.006-07:00

The last few days have been pain free.

Then there was today.

Sometime this afternoon I began feeling the following:

Headache pain the back of my head (from Chiari Malformation)

Nausea from my shunt adjusting itself....

Pressure and pain the forehead

Pain behind both of my eyes.

Pain on both sides of my head.

Pain on the shunt valve and along the distal catheter down the back of my head and into some of my neck.

I took two different pain medications about a hour apart from each other starting around 12pm and then again at 2pm.

Three hours later, I still have head pain.

I attempted Nintendo therapy with Super Mario World (SNES) and was not very successful. Let's just say lots of game overs....I felt compelled to play of course after seeing the film recently.

Maybe it's because the weather is warmer now, satellites, drones, the moon.... whatever else is in the atmosphere that effects these programmable shunt valves many people ( of various ages ) have to deal with....

9

2023-03-08T07:32:00.006-08:00

This week marks nine years brain surgery free and nine years after surviving multiple brain injuries during shunt revision surgery in 2014. I needed two surgeries to fix my shunt that year. It doesn't feel like it's been that long. I feel the shunt all the time now because of the injuries I had to my brain. No two shunts are the same and everyone ( both children and adults ) have different experiences.

Every year I have a cupcake or a pastry and put a candle in it to celebrate being surgery free and surviving all of this nonsense. Photo is below. The only year I didn't do this was in 2015 ( the first anniversary), as I was waiting to have surgery to repair my eyesight.

It's windy outside today and my shunt is behaving itself, for now.

I've been into music from some movie soundtracks such as: Iron Eagle (1986) Hercules (1997) This song was playing in the background while I was at the store earlier this week Daft Punk. Made me think of this whole brain birthday celebration I do like every year. Not in reference to having more surgery, obviously.

I made a film about my brain injuries to help spread awareness about brain injury and hydrocephalus it can viewed here . I'm a starving artist with a chronic illness. One of many out there living with hydrocephalus.

the weekend

2023-02-19T16:03:00.000-08:00

Many people both adults and children who live with a chronic illness, unruly medical device and/or chronic pain have various symptoms they deal with daily. I'm just one of many.

Sounds are bothering me this weekend. I had to put on noise canceling headphones because the sound of cabinet doors closing and radio was hurting my right ear. Since my injuries in 2014, I have some tone issues with that ear as it was bleeding after my injuries.

I took pain reliever in the morning, it reduced my symptoms. They were still lingering even after taking medication.

The rest of the day I still had:

Pain behind both eyes.

Noises from behind my right eye.

Nausea

Pain from the distal catheter in my head and pain from moving my head from side to side.

Pressure in my forehead.

And my left leg crossed over my right leg while I was in the kitchen. I was able to catch myself and avoided landing on the kitchen floor.

Music helped me yesterday and a today to distract me..I'm still waiting for that Powerline Album...

Themes

2023-02-01T16:12:00.002-08:00

Last month in January, I had the following:

Pain behind my right eye (where I had strabismus surgery) I was told the pain I feel behind one eye or both is not from the surgery I had in 2015. Rather, it's from the internal injuries I had. I also had pain in front of my eye. Felt like a needle was being pushed into it. This is the same pain I've experienced at the top of my head sometimes.

My shunt making self adjustments with a side of nausea. This is better than when it was beeping in 2015 and 2016...I haven't heard any sounds from my shunt since then.

Scissoring issue with my right leg crossing over my left. I didn't fall - I was able to catch myself in time. This is random, as I've mentioned before and happened this morning when I went to turn on a lamp.

Hearing sounds from behind my right eye. I was told this wasn't from my surgery, it's from in the injuries I had.

Right eye drifting issues.

Sometimes pain reliever it helps, other times it doesn't. Depends on where the pain is coming from.

One thing which makes me smile with all this chronic pain nonsense is the soundtrack to Ducktales which encompasses music from both the television series and the nes game Ducktales (1990).

Let's not forget how awesome the music is from Chrono Trigger (1995)

Nintendo therapy with Starfox (1993) was unsuccessful last week - I was having drifting eye and eye focusing issues. You have the point of view of the pilot in this game and there are times when objects are flying towards you quickly plus you have to save your teammates while being attacked by enemies. I was having visual sensory overload - Doesn't usually happen for me with Starfox and I blame atmospheric pressure and brain damage.

I did make a second attempt the following week and only had one game over and was successful in finishing the game on level 1. Of course, this second attempt made me think of a song by Aaliyah.

I'm just one of many people with a shunt, I have my own coping mechanisms. Many children, adults and their families live with chronic pain and chronic illness. Everyone has their own way of coping with this and dealing with pain management.