2014, Part 2

 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.  

 

 

2009

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.  

 

 

 

 

 

Fall again

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.

10 years later, part II

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

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

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

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

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

 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

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

 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

 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

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

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. 

10

 This yea  marks 10 years since I started this blog and began documenting my cerebral shunt's daily activities. At the time, I wasn't aware my shunt was on the wrong side of my brain.  I would figure this out on my own while in the neurosurgeon's office in 2014. 

More on that later...

My shunt has been behaving itself today. Last week, I had shunt valve and head pain in different parts of my head.  Upon taking curamin, the pain on my scalp went away after a few hours. The shunt pain still remained. 

No pain behind my eyes over the weekend, which meant I had a little time for the Nintendo game, Snow Bros. Appropriate for the cold weather and the music can get stuck in your head.

Several hours and a santa

I had chiari malformation headache in the back of my head (by my cerebellum) starting at 5am this morning. This was followed by pain on the shunt valve and nausea. My shunt was adjusting itself. I haven't heard it beep since 2015 and 2016 which is a good thing. I'm even more thrilled that it's still working.

I took pain reliever early this morning  and mid morning (both times with food) pain was reduced by 60% still lingering in the background. This went on for 6 hours. Pain wasn't completely gone until 4pm.  

Today I had double vision issues, where my right eye was drifting and then snapped back to where it was supposed to be. It's disorienting because it's random ( like my balance and walking issues ) 

Again, it makes me nervous about the thought of having eye surgery again. My eye surgeon told me at the time, there was a chance that I may need surgery again. I'm grateful I haven't needed this yet. 

I've been having balance issues the last few days.  For example, getting up to stand and tipping backwards. Many people living with a chronic illness, chronic pain and medical devices deal with their own challenges and have different experiences from mine.

Others things I found helpful to get me through my chronic pain and unruly medical device nonsense has been listening to the soundtrack to Spirited Away. 

The holiday Santa (to the left) makes me smile especially on days when I have pain and walking issues.

4 hours and a soundtrack

 I was having right eye pain and nausea from the shunt today starting in the morning around 6:30am. I also had pain from the shunt valve all the way down the back of my head following the distal catheter. There was also pain behind my right ear, which I was told is from the fragments of my old shunt.   

I took pain reliever, curamin at 11am.  Four hours later, I had less pain. It wasn't completely gone, still lingering, just made it more tolerable. This will help with some of the pain (not shunt pain), it will not alleviate the following: TMJ, walking and balance issues.

 I still decided to stay home.

I saw my neurologist recently and she told me my shunt looks good and doesn't appear to be broken anyway ( like in 2014 ) 

It was suggested I try Botox injections to my forehead and in different parts of my head ( not near by shunt ) to prevent migraines. According to the doctor, what I am experiencing are migraines. 

I don't believe this. 

I've known since my shunt revision in 2014 that the pain I experience is from the multiple injuries I had during surgery. 

In 2009, when my shunt was placed on the wrong side of my brain, I acquired a chiari malformation.  Sometimes I get headaches in the back of my head, more so if I put pressure on that area. Like if I'm laying on my back ( which I avoid ) or leaning the back of my head against something. Because it was on the wrong side of my brain for 5 years, I also have slit ventricle syndrome.

For now, the curamin is working to reduce the pain in my head by 60%. It doesn't work on pain issues from the shunt valve or distal catheter. It also doesn't alleviate nausea from the shunt making adjustments or whatever it feels like doing that day.   I'm not alone dealing with chronic pain, an unruly medical device and a chronic illness. People of all ages have their own ways of managing their illness and or pain issues. I'm just one of many.

I resumed nintendo therapy yesterday and enjoyed time with Chrono Trigger. A fun way to escape lingering chronic pain issues. The soundtrack is great too and nice to put on as background music.

HAM 2022

I've been up since 4:30am with:

Pain and pressure in my forehead

Headache in the back of my head from the chiari malformation.

Pain on the shunt valve

Pain behind my eyes from injuries in 2014.

Pain on the top of my scalp on both the left and the right side. 

Some nausea in my stomach.

Medication reduced the pain a little, still have pain behind my eyes and in my head. We'll see how this improves throughout the day.

 I had three pain free days this week. 

 It was a letdown this morning because I made the effort to sleep on my left side to avoid head pain issues. Sleeping on the right side is risky as it can irritate the fragments of my old shunt that stuck inside my neck from my injuries in 2014.

Also the right side is where my shunt is and if I turn my head the wrong way on the right side, causes issues with the distal catheter. 

September is hydrocephalus awareness month. 

I'm just one of many people young and old who has a shunt in their brain and has to deal with all the drama that comes with it.

I made a film about my brain injuries in 2014. It can be viewed here. I am not famous, just a starving artist with a chronic illness.

Because of the pain behind my eyes no Nintendo therapy today. 

Maybe in the late afternoon, I'll attempt to color.  

It took four hours for my head pain to go away. By 11am I still had pain behind my right ear and some shunt pain.

 

 

 

side

For about a week now, I've experienced the following:

Pain from the chiari malformation by my cerebellum

Pain on the top of my head on the left and right side.

Pain in the distal catheter and down the side of my neck. I suspect over the last 8 years this is because of the brain damage I have from my shunt being on the wrong side of my brain for 5 years. I now have a condition called slit ventricle syndrome. 

Dizziness and right leg crossing over the left leg while walking. If I'm not aware of this as it happens, I will fall. When I was in rehab in 2014 after my injuries, my physical therapist had called it scissoring because I had multiple injuries on my brain which caused my legs to cross over each other like scissors. 

Nausea from the distal catheter in my stomach which meant that my shunt was readjusting itself.

I've had pain behind both of my eyes.

8/2 - Ringing in my ears from the left to the right side

Today 8/3 - TMJ issues in my jaw - it locked randomly while I was talking - There are exercises I do when this happens. It doesn't take away the TMJ completely just makes it more tolerable. Today some pain behind my right ear from the catheter. 

Many things such as the weather, satellites, the moon, barometric pressure, thunderstorms contribute to my shunt issues. 

At least I know that it's working and that I'm not alone in my chronic pain issues. 

What I've had in the last week makes me nervous sometimes as anyone with a shunt will tell you - There's no way of knowing when it's going to stop working. 

And we know medical technology is not that reliable in detecting these things.

Unless you're on Star Trek where they'd be able to tell you within 5 minutes what was going on and when the expiration date was. 

The pain I've had behind my right ear is from both the distal catheter and from the fragments of my shunt that fell apart inside my body in 2014 that are still in the side of my neck and in my stomach. 

When the pain is bad like it's been in the past and this week, it makes me sad and angry. 

And when this happens, I engage in health coping mechanisms like reading, coloring, and the occasional Nintendo therapy. 

No Nintendo therapy recently because of chronic pain issues. 

Today 8/4 - I had head and shunt pain issues for a few hours. By the afternoon, I was feeling better. I hope this continues through the weekend....

Pain issues continues off and on throughout the weekend on 8/6 thru 8/8. It's time to listen the theme song from Darkwing Duck.

friends, movies and books

This week in the world of chronic pain with my cerebral shunt:

TMJ issues in my jaw.

Pain and pressure behind both of my eyes.

Dizziness

Pain on the shunt valve and distal catheter in my head and neck.

Fell up the stairs after loosing balance because legs just got confused again. 

Knocking in my head from the left ear to the right ear. 

Chronic pain issues from my injuries and medical device sometimes makes me sad and angry. So as a distraction today, I turned to movies like Iron Man and reading.  I got to enjoy the film with some furry friends:

 

In this photo, the dragon is from Plush in a Rush, he was a souvenir from an escape adventure room like 5 Wits. The sock monkey was made from a sock monkey kit, the flamingo is from Build a Bear Workshop and Iron Man is from Ty Store.

Today, (7/16/22) I have pain behind both eyes, dizziness and walking issues, a headache in the back of my head from the chiari malformation. Pain on the top of my head on both the left and right side. Occasionally today, I've had double vision where my right eye (surgery eye) drifts and then snaps back into place. It's not that I can't take medication for this, I can. I try to me mindful of how much I take as some things like advil can harm the liver. 

I like having a liver.

When my neurologist has prescribed medication for me in the past, I have side effects like numbness in my legs that I didn't like. I've taken natural pain reliever with no weird side effects, there are days when they work and other times when they don't. 

The changes in the weather and barometric pressure effect my shunt and chronic pain from my injuries. I know I am not alone when I talk about this. Many people both children and adults who have cerebral shunts and/or other medical conditions also experience discomfort when the weather changes and anything else that's in the atmosphere. 

I'm convinced that satellites also impact medical devices and chronic pain. 

I just wish there was more to help us. On bad pain days, I get nervous and worry about when my shunt will need another revision. I hope to never have to experience that again. As I've mentioned in previous posts, I wish we had a way to we could predict when our shunts needed revisions. I mean people with diabetes can monitor their glucose levels with dexcom devices. People living with hydrocephalus can't do this with their shunts. Will the madness ever change?