Thursday, December 1, 2022

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.

One thing,  I found helpful to get me through my chronic pain and unruly medical device nonsense has been listening to the soundtrack to Spirited Away

Another thing that brings a smile to my face anytime during the year is brown Santa. This brown Santa Christmas display is at a holiday store at a mall in my neighborhood. The photo below is from 2020: 


Saturday, November 5, 2022

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.

Thursday, September 1, 2022

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.

 

 

 


Thursday, August 4, 2022

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.

Saturday, July 16, 2022

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?


Tuesday, June 21, 2022

More than 3 days and the rain

The rain and the barometric pressure caused my chronic pain issues.  Last week, there were three days of the following symptoms:


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

Pain behind my eyes.

Dizziness and some double vision when turning my head to the right.

Pain on the shunt valve. 

I sometimes take pain medication to better tolerate and or reduce the pain I feel. If I don't have to go anywhere and I feel this way, I don't go out. Last week, I had places I needed to be, and I didn't have the option to stay home.  I took medication during the day, and it didn't relieve my symptoms. 

I didn't feel better until a few days later. Today is a huge improvement from how I was feeling during the weekend and part of last week. 

I do find it comforting to talk to others who also experience pain from the weather and pressure changes. People who have medical devices, medical conditions chronic migraines experience chronic pain from the weather and who knows what else is in the atmosphere, like the phases of the moon and satellites.  It's just nice to know I can talk to others who can relate. 

When I don't have to be anywhere, and I have chronic pain issues there's always time for at least an hour of Nintendo or drawing. 

No Nintendo therapy today (6/30) due to pain behind my eyes and pain on the top of my head and down the side of my neck from the distal catheter. 

Saturday, May 28, 2022

Madness again....

 This week:

Each time I moved my head, I would have pain on the shunt valve because it was making adjustments each time I would move. The type of shunt I have is known to make adjustments constantly. I don't feel it all of the time except on days like this week.

Pain behind my both my eyes and sometimes behind just the right eye. I was told this was not from the surgery I had in 2015, that it was a result of the injuries I had in 2014.

Pressure and pain in my forehead.   

TMJ issues in my jaw and ear.

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

Right leg crossed over the left leg randomly as I turned - I almost fell,I was able to catch myself before landing on the floor. This happened while I was home.

Since I don't have to go anywhere for now it's time for exercise, watching cartoons and drawing.

That's the thing about resiliency, you just have to do things even if you don't feel well. People of all ages who have to deal with chronic pain and/or an unruly medical device like a cerebral shunt can relate to this.

Every time the weather changes my cerebral shunt decides what if feels like doing on that specific day.

I've tried a variety of natural and other types of pain reliever. 

Pain medication doesn't always work. 

There are people out there who might think we're making this up. Some will be dismissive because they are ignorant or they just don't want to feel your pain because it upsets them. 

In the meantime, while my shunt decides to be unruly I'm just find something to do as a healthy distraction. 

There's always time for Nintendo when you're home.