hydrocephalus in the news

Read two stories this today about hydrocephalus:

The first, is about a woman who was denied healthcare coverage because she was attempting to get care out of her state: Insurance denies woman with hydrocephalus

The second, is about one of my favorite authors, Roald Dahl. He had a family history of hydrocephalus: Roald Dahl and hydrocephalus

About Empathy

Well, my theory about the scalp pain may have been off...There was some throbbing on the left side of my scalp today and yesterday after not feeling anything there over the past month. Not sure what that means....it's weird.

I read an article today about the differences between empathy, compassion and sympathy and how doctors need to learn more about using empathy with their patients. I mentioned in my film, Shunt Chronicles: My brain, art and school (2015)  how my previous neurosurgeon lacked empathy in regards to my situation.

Link to Article: Why Doctors Need to Show More Empathy. 

Scalp Adventures

About a week ago, I discovered I had an abscess on my back and it was drained at my doctor's office. Once the abscess began healing, the throbbing pains I've had on the top left front side and back right corner of my head are gone.  I'm convinced I had the abscess since 2014, as I was in a wheelchair for a month while I was in rehab.  I still have pain issues with my shunt interacting with everything in the area: weather, magnetic fields.

The throbbing pains in my scalp had been there since my brain injuries in 2014. I was told the abscess had developed over months and could take months to fully recover.

Alternatives to medication

While my proGav shunt continues to act like an unruly child with the cold weather, I've decided to distract myself in the meantime. This weekend, I went to see the Marvel film, Dr. Strange. I was surprised to learn upon watching the movie that the main character, Dr. Strange was a neurosurgeon.  I found it awkward watching a few scenes were there was surgery. I couldn't help but think about my past shunt revisions.  I didn't know in advance the movie was about a neurosurgeon. A large portion of the film focused on how the body heals itself after an injury.  It made me more interested in how the body heals itself.

Treatments for brain injuries

I don't know whether or not I'd be a candidate for the medication used to treat Parkinson's which is also being used to treat some forms of brain injuries....I've taken a break from taking anything for my pain issues. The full article can be found here: goo.gl/zkSs5k

After my injuries, I found it a challenge to interact with people...There's a lot of calculating our brains are doing, synchronized with muscles and nerves....Like navigating how to sit in a chair with or without wheels....there's a big difference....as I learned during a physical therapy session one day in 2014....

Upon leaving rehab in March 2014, I struggled to interact with more than one person at a time and in a group setting it was even more overwhelming. After time though, it got a lot easier. Now I would say I'm back to where I was on a cognitive level before my brain injuries....so there is a lot to celebrate....

Interesting article about socializing after brain injuries: goo.gl/LJQ6a8

Traumatic Brain Injury and Animal Therapy

The scar tissue pain is getting less and less frequent. I believe it's because of my nervous system continuing to heal.  I expect at some point in the near future, I won't have any scar tissue pain.

Tomorrow is my cat Stella's 16th birthday. October 16, 2016 will be her golden birthday.  It's been a blessing to have her for such a long time. She's been a good companion and has helped me recover from my brain injuries.

Stella and I relaxing at our usual spot on the couch. 

There was a post from an online brain injury support group I belong which mentions the benefits of pets on the healing process: TBI and Animal Therapy

My Shunt's Daily Activities, Part VI

It's been raining the last four days where I live and my programmable shunt valve is causing pain and throbbing from the scar tissue....Makes me wonder why I feel what I do  on specific days depending on the weather. Could be healing issues associated with what happened in March 2014.

From online hydrocephalus support groups I've seen people discussing how barometric pressure affects shunt valves: Barometric pressure and shunts

There is a correlation between the two, I just wonder why...It's too bad I can't check the settings myself or just get the same kit they use to make adjustments at the neurosurgeon's office.

My Shunt's Daily Activities, Part V

Today was a good day. Some shunt and scar tissue pain this morning around 3am. So far it's been a nice pain free day. I won't write too much, as I suspect the programmable shunt may hear my thoughts and retaliate. I will continue to enjoy this calm.

My Shunt's Daily Activities, Part IV

Dear Programmable Shunt Valve,

I hate you, because you cause me pain. I'd like my old shunt back. I'd also like the brain I had before the multiple brain injuries I had.

Thank you.

I know one thing for sure, my programmable shunt valve reacts to the weather and causes scalp and nerve pain. I also know it responds to the slit ventricle syndrome I acquired between 2009-2014.  I can feel when csf fluid is being pushed through the valve. It could be because of the resistance level ( level 11 ) which is considered high, however it's what I needed as a lower level ( 8, 10 ) caused my head to bob up and down involuntarily and I could feel explosions going off in my skull.

So we'll see what happens....

My Shunt's Daily Activities, Part III

June 2014 MRI. Neurosurgeon says some of
the white space ( top left corner ) is scar tissue from my brain injuries.

The rain will be here soon and it's humid outside. I can tell because of how my shunt and scalp feels. Since the early hours of 3am, I've had throbbing pains on the shunt valve, occasionally in my abdomen where the distal catheter ends and in different parts of my scalp from the scar tissue.

My brain looks like a walnut.

In response to my cerebral shunt attempts to predict the impending rain tomorrow, I've posted a question on a hydrocephalus support group I'm a member of online about how other people who have programmable shunt valves cope with pain issues associated with the changing weather patterns.

*Update as of 9/19 - It's been raining all day today and sure enough, my shunt is responding to it with pain on the shunt valve and upset stomach were distal catheter ends.  Some of the responses I've received from my original question posted online have been the same: Pain is from changes in weather patterns, sometimes pain medication helps, others just lay down to deal with the pain. If I don't have to go anywhere, I stay home curled up somewhere. Pain medication works for headache pain, not for my shunt, scalp and nausea pain. Other people with shunts have said they can too can predict when it's going to rain before it occurs because of how they're shunt responds. 

My Shunt's Daily Activities, Part II

Today was better than yesterday. This is largely due to the lack of humidity in the air, the first day in about a month where I was free of shunt pain.  I've been enjoying today with less pain than before and there are times when occasional throbbing in the back of my head and on the shunt lingers. The can tell it's going to rain soon, so I am taking advantage of the calm before the storm (pun intended)

My Shunt's Daily Activities, Part I

x - ray of my shunt 2014 to present

I have a love and hate relationship with my cerebral shunt. This new version causes me pain depending on the weather outside and other magnetic fields in the area. The last month it's been somewhat difficult emotionally and physically, as I've had head and shunt pain for the most days.

This morning, I got up early due to pain on the left and right front parts of my head as well as in the back of my head. The cerebellum headaches, from what I was told by a neurologist are from the chiari malformation (type 1) which I have. These don't happen often.

Into the evening, I'm feeling better than I was this morning. A shunt with status updates would be appropriate.
Through a hydrocephalus support group, I found an awesome website which talks about research actual research and tests being done to develop more effective shunts. As I mentioned the shunts with status updates: They're working on something like that - improving diagnosis of failing shunts, finding out why shunts get obstructed and improving treatment for hydrocephalus.  The website is: www.healinghydrocephalus.com 

Medications No More?

I stopped taking my prescribed pain medication and had informed my neurologist of my decision to do so. My reasons behind this was because there was no improvement in the pain I experienced from my shunt or in different parts of my head. The pain I feel, as I explained to my doctor, was a result of the trauma I experienced while having surgery in 2014. When I saw the new neurosurgeon a new months ago, he discovered patches of scar tissue which were still healing.

I have to consider the that my brain is recovering from five years of brain damage from my shunt being placed incorrectly from 2009-2014. I believe it may take time to heal itself and I wanted to wait a few months without medication to see how my body reacts and when things recover on their own. I don't expect the pain from my shunt to improve as the model I have reacts to the weather always adjusting itself. It's temperamental.  There's also the issue of pieces of the old shunt still inside my body which cannot be removed...still trying to figure out how to cope...art can be therapeutic at times....

The neurologist listened and told me if I ever change my mind about taking medication I can just call her and she'll send a prescription to the pharmacy.

Last year, I did a radio interview where I discussed my experience with hydrocephalus and my shunt. September is Hydrocephalus Awareness Month, the full interview can be seen here:

Hydrocephalus and Brain Injury Awareness

Watched the movie, Shaun the Sheep yesterday after borrowing a copy from my library. I didn't realize until I watched the film that one of the main themes was about brain injury. A character in the film, looses his memory and it shows how his brain injury impacted not only him, but also of the other characters in his life.   It was also animated by one of my favorite studios, Aardman Animation. This summer, Regal Cinemas was having a $1 Summer Movie Express where you could see selected films for $1. I won't be able to see Shaun the Sheep on the day it will be at Regal Cinemas for $1, and I got a copy from my library.

September is Hydrocephalus Awareness Month.  I found this interesting article explaining the lifetime commitment of a shunt. For example,  ''Having a shunt is a lifetime commitment. Once a shunt is implanted, it is not a "one time" operation. Life expectancy of a shunt averages 10 years. However, a shunt can last 5 minutes to many years. It is wise to always be aware of the warning signs for a "shunt malfunction." Retrieved from http://nhfonline.org/what-is-a-shunt.htm

During the last week, I've had nothing but discomfort from my Aesculap ProGav shunt.  I've come to the realization that it reacts to the weather and other magnets in the area. The last week or two it's been either severe thunderstorms and extremely hot outside.  Both situations haven't been good for my shunt. I have pain and throbbing on the shunt valve plus in my abdomen from the distal catheter. There are also pieces of my old shunt (which was falling apart in 2014) behind my right ear and in my abdomen.  This causes pain as well and I can sometimes feel pieces of the old shunt in my abdomen. I'm still trying to figure out to effectively manage the pain.  Not much seems to be known on the medical end about how these programmable valves actually work. I think if more was known about them, they wouldn't be used as much. My new neurosurgeon even told me when I saw him earlier this summer, that he doesn't use ProGav shunts because they're temperamental and it takes a while before you even know the correct setting for the patient.  We need Star Trek level technology when dealing with the hydrocephalus.

2015 Eye Surgery Notes

I had to have eye muscle surgery in order to correct my double vision after having multiple brain injuries in March 2014. I was able to get a hold of my operative report from my eye surgery in 2015, which I had been curious about. After each operation I have, I order the images ( X Rays, CT and MRI scans ) plus the operative reports from the doctor. I like to read about what happened to me while I was under general anesthesia.

Here are some excerpts from the long report:

Part I:  The patient was brought into the operating room and

placed under general anesthesia. The eyes were prepped and draped in sterile

fashion. The right eye was in a slightly adducted position. Forced duction

testing demonstrated mild increased tone to the right medial rectus, and reduced

tone to the lateral rectus. The left horizontal muscle tone was normal.

An eyelid speculum was placed into the right eye. A radial fornix incision was

created in the inferonasal quadrant and the medial rectus muscle was placed onto

a Guyton hook.

And later...

Part II: The muscle was reposited and verified to be hung back 3.5 mm from the insertion

against the noose. The pole sutures were left untied to allow for post-operative

adjustment. A four-limbed traction suture of 5-0 Mersilene was placed through

the insertion and the sclera near the limbus. 

Towards the end....

Part III: The remaining stump was excised from the globe and hemostasis was established with cautery. Both ends of the Vicryl were passed partial thickness through the original insertion and tied with a surgeon's knot. The conjunctiva was closed with interrupted sutures of 6-0 plain.

The eyelid speculum was removed. One drop Betadyne ophthalmic solution followed

by several drops Blephamide were placed into the right eye. A patch and shield

were placed. The patient was awoken and taken to the recovery room in good

condition.

Sort of Glued

Went to see the new neurosurgeon today. He looked at my previous MRI's from 2014 and my shunt x rays from 2014. He also saw the x rays I had done last week. In the MRI he showed me how there was a patch of scar tissue on the left side of my brain where my shunt used to be. He said the pain I've been feeling could be nerves still repairing themselves from the injuries I had in 2014. I also have slit ventricle syndrome from the damage caused by the incorrect placement of my shunt for 5 years. He said the type of shunt I have, proGav is temperamental which is one of the reasons why he doesn't use them on his patients. He had said they're tricky to program because you have to wait and see what the correct number (pressure setting) is for the patient. The some of the other types of programmable valves, you know instantly what the correct pressure setting is for the patient. He wasn't sure if the pieces of my old shunt (which are still inside my neck behind my right ear and in my abdomen) could be removed. Attempting to take them could cause additional problems for my shunt or cause another stroke. Unless there's a reason for surgery (obstructed shunt, infection) then I have this shunt until it gets obstructed again. I have to continue and take medication for pain,  I've already decided I won't continue taking any medication after three months.

Pieces

At 1:30am this morning I was awake because I had shunt, scalp and abdominal throbbing and pain. I was up until 5am with my cat, Stella as we watched some early morning television. I went to sleep around 5am and the was up again at 7am for breakfast. Took a nap from 12pm-2pm and awoke with the same forehead, shunt and abdominal pains I've had off and on since 2014.

I had a much anticipated Shunt Series of X-Rays done after my appointment with the neurologist on Thursday. I received a phone call yesterday from the neurologist and she gave me the results. She had said the shunt system is in tack, except she noticed something: Pieces of my old shunt are still inside my neck behind my right ear and in my abdomen. I wasn't exactly happy to hear about this, as I thought these pieces had been removed from the inside of my neck during the surgery I had in March 2014. Not sure what the new neurosurgeon will say about this when I see him later this month.  Does it mean I will have another surgery again to remove these pieces?

In the meantime, I've looked at the different type of programmable shunts based on the one I have and there are different types besides the proGav one which I have. Wondering whether or not I can get switched to either a non programmable valve or to an Aescula shunt which doesn't have an anti-siphon device. The anti-siphon device is suppose to stop the shunt from over draining. It was doing this when it was on the wrong side of my brain from 2009-2014. It wasn't over draining when it was on the right side of my brain. Therefore, I don't believe I even need a shunt which is both a programmable and anti-siphon.  The anti-siphon device could be the cause of the shunt pain I have. The abdominal throbbing and pains could be from both the shunt and the fragments of the old one....

Progress, Part I

Saw the new neurologist for the 2nd time yesterday. During my 1st meeting with her (in May 2016) I had asked to see a new neurosurgeon. At the time, she had told me most doctors don't take on new patients because they don't want to deal with the work of another doctor. She had said she would "see" if a neurosurgeon was available and would be willing to take my case, but she couldn't guarantee this would happen. I left her office feeling extremely frustrated because I couldn't go back to my former surgeon because my not so good experience with him: Photos of shunt placement.

I decided to contact the social worker who I had seen in 2014 - 2015 to help me deal with the trauma I had experienced with my brain injuries. I went to see the new neurologist yesterday and she was like a different person. I had expressed my need to see a new neurosurgeon and to have a shunt series done. Without hesitation she gave me a referral to see a neurosurgeon at the hospital and to have a shunt series before I left the building that afternoon.  I'll see her again at the end of September. I have an appointment with the neurosurgeon later summer and I asked my social worker to call him before my appointment. Having the social worker advocate for me expedited the process of getting new x rays and a new surgeon. This past Monday, I had a follow up with my eye surgeon who corrected my eyesight in March 2015. As far as the tests go, my eyes are in good health and have adjusted well to the surgery. I haven't had any issues with my right eye drifting to the right. It did do some drifting from March 2015-April 2015. I haven't had any since then. I still have some double vision when I look above my glasses, this doesn't affect my ability to look straight ahead, as I have single vision when doing so.

A Good Day

Today was a better shunt day. For the last two months, I've had frequent nausea and pain/throbbing on the shunt valve multiple times during the day. Sometimes, I have pain on the top left part of my head which I believe is from the injuries I had in 2014.

Today was a better, as the pain on the shunt valve wasn't as strong as it's been. For example, today the pain on the shunt valve has been a level 5 which is better than it was a few days ago, which was a 10.  I didn't feel any pressure in my forehead today which was good.  I've been playing phone tag with my neurologist and will have an appointment with her soon.  I'll also have a new shunt series which will show how my shunt is working.  The x rays will show whether the shunt is broken and the CT scan will show how the shunt is functioning.  I expect my new neurosurgeon whenever I see him/her later this summer won't misread my x rays/scans like my last doctor did.

Not sure why I'm still have the shunt pain issues. Maybe as I may have mentioned in previous posts, it's because of the type of shunt I have....I just don't know yet...We'll have to see once I get the images back.

In the meantime, I saw through an online support group the Hydrocephalus Association is having a conference in Minnesota this weekend.  I found the history of hydrocephalus online which is interesting: History of Hydrocephalus

Aesculap proGav Shunt

After a week of stopping my medication, for the time being, I no longer have tingling pains on the top left and right corners of my head. I have some throbbing on the left top corner of my head and pain from the shunt valve.  This goes away and returns at different times during the day. I read my medical records from 2014, (curious to know more about the small device which throbs at the top of my head) I had thought the anti-siphon device could be disabled, as I thought that was the cause of my shunt pain. 

However, upon reading about the specific model I have: Aesculap proGav Shunt and it does the following: proGAV combines the advantages of an adjustable valve with unsurpassed over drainage protection of the ShuntAssistant valve to create a system that provides the ultimate in patient care and treatment. With this combination, physiological drainage can be maintained in any body position-from supine to upright. 

I realized maybe turning of the anti-siphon device isn't an option because this shunt has a combination of anti-siphon and adjustable valve.  No end to my shunt pain...yet it makes me wonder about the other shunt models and maybe I can get a different one....I most likely won't see a new neurosurgeon until the end of August early September....

Three Weeks Later

I've been on a tricyclic Anti-Depressant for the last three weeks for treatment of the various pains and tingling sensations I've had in my head.  The medication was suppose to suppress the nerves affected by the multiple brain injuries I had; make my head and scalp numb so I wouldn't feel anything. Everything was working for the first week. I would take one pill each night before bed ( they would help me sleep ) the following day I would feel a drowsiness and not myself. The pills  helped to alleviate the tingling and throbbing pains around my head (front and back) however after one week, the sensations would return.  The second week, I would try two pills at night before bedtime.  Doing so made me even more tired during the day. My reflexes slower, I felt as if I had been taken over by the pills emotionally and physically.

On two pills a night, I wanted to sleep during the day. I'm home all the time, and taking two pills each night made me want to spend all day sleeping under warm covers.  And yet again, after the first week of trying two pills each night, the throbbing and tingling returned in various parts of my head.  I could tell where this was going...I knew if I increased my dosage each week, it would only ware off after one week.   The third week, I continued the two pills a night and the slowly reduced the number down to one, then half a pill.  

The good news is after taking myself off the medication, I noticed the pain had been reduced. Maybe my body got used to taking the medications that it's learned how to suppress the pain on it's own. I haven't heard my cerebral shunt beep in three weeks. The TMD I had since my brain injuries in 2014 has been reduced.  I haven't had pain inside my right ear for three weeks. I've had occasional tingling at the right top corner of my head and some throbbing pain at the front of my scalp and on the shunt valve. However, these sensations go away on their own sometimes....I was introduced to lavender chamomile body lotion and body wash which has helped me sleep a little better.  The throbbing on the shunt valve returned while I am writing this post. Not as intense as before three weeks ago....I believe I'll get to see a neurosurgeon at some point this year. Maybe he/she will be able to figure out whether or not I need the anti-siphon device, which I believe might be the reason behind the shunt pain I've been feeling.

4th

Yesterday, I saw a new neurologist who for the first time ( after seeing 4 neurologists ) suggested the pain I feel in my head and scalp is a result of the trauma I experienced in 2014.  She said it was a reaction of my body to what had happened and she prescribed me a medication to take which is suppose to help with the pain. She prescribed me an anti depressant for the pain, which I'm not sure whether or not I'm going to take it or not. However, I liked how she actually listened to my symptoms instead of assumed I was just depressed and dismissed what I was saying.  The issue I had was when I had suggested seeing a neurosurgeon and she told me most neurosurgeons don't take on patients whom they don't know. They don't want to interfere with another doctor's work.  I think that's a cop - out really... It's not realistic to say the person who put your shunt in is the one who has to do the surgeries, it doesn't make sense. You know how unpredictable shunts are and when you have to get it revised, whether or not your doctor is there someone has to fix it.  I've already experienced situations when my doctor wasn't available and who ever was there fixed my shunt.   We know how well that turned out.....

My mom and I had explain to her how I had been treated by my last neurosurgeon ( ignoring me) which was why I didn't want to see him again. She said she would refer me to a neurosurgeon whom I'll see this summer.  I'll see her again in June. I'm tired of fighting with these doctors to 'convince' them I know what I'm taking about when it's related to my shunt. 

Self-Adjustments

I heard my programmable cerebral shunt beep several times during the early morning hours and I had what felt like small explosions inside my head. I can only hear the device make noises inside my right ear.  (where I am tone deaf) Since my brain injuries, I have special powers now. I can't fly or lift buildings, but I can hear the shunt do all kinds of things inside my body.

The beeping and small explosions happened three times this morning between the hours of 1am - 5am.  Perhaps it was adjusting itself.  I hadn't felt sensations like this in months. The last time I felt the same small explosions and beeping sounds was over the summer in 2015.

If I were on the Starship Enterprise, my shunt would've told me verbally what it was actually doing. Like a status update or something.

The elevated pressure inside my head continues as do the scalp pains in different parts of my head. Is it scar tissue? Parts of my body still healing?  Is the shunt working too well? Again, a status update would be helpful.

Once more with feeling....again

For the last two months, I've had consistent pain from both my shunt and around different parts of my brain. I'm not sure what to do in order to deal with the discomfort.  Pain medication doesn't work.   However, I get scared when I feel pain like this.

The pain in different parts of my head from nerves and muscles may be scar tissue healing itself form the injuries I had. I believe this to be the possible explanation.

For the last two months I've had the following:

February 2016

2/2/16 – Felt fluid buildup at base of spinal cord. Backup of CSF? While in bed. Had issues with sitting up because of lower back discomfort.

2/6/16 – Pain, swelling, tingling sessions on left side of brain where ventricular catheter used to be and on top right corner of head.  Felt pains in abdomen, distal catheter and in urethra in the morning.

2/9/16 – Pain on top right corner of head at 4am with pains in distal catheter while in bed.

2/18/16 – Swelling, sharp pains on left side and tingling pain on top right corner of head both in the morning and afternoon.

2/19/16 – Pressure in forehead during evening.

2/24/16- Pain in back of head, and forehead around 6:33pm.  Nausea.

2/28/16 – Tingling, sharp pains on top right corner of head during afternoon hours after 12pm. Pain on left side of brain in the early morning.

2/29/16 – Pain and tingling on top right corner of head in afternoon/evening hours at around 6pm.

March 2016

*The following symptoms have continued each day at different times during the day:

*Pain on shunt valve, feelings of fluid moving slowly behind right ear. I can feel the shunt over draining and I have pain in my urethra.  Since February, I’ve had pains in different parts of my head specifically in the back of my head and top left and right corners of my head.

3/18/16 – Pain on shunt valve multiple times in the morning and afternoon hours. Pain when moving head from side to side. Pain and tingling at top of head on right and left corners of head in the afternoon. Pain from shunt on top of the valve and in the stomach/abdomen.  Throbbing and pain on top left side of head.

3/23/16 - Pain on shunt valve multiple times specifically during the afternoon around 3:43pm.  Dizziness in forehead during early afternoon 12pm-3pm.  Felt light headed and dizzy with pains in abdomen/stomach. Throbbing and pain on top left side of head. 

3/24/16 – Pain, throbbing in distal catheter in abdomen at 1:04am, pain behind right ear throbbing on distal catheter. Sharp pains on left side of head and on shunt valve multiple times while trying to sleep between 9pm-12am.  Pain at top, back of head when moving head from side to side. Cannot sleep on right side due to pain in distal catheter behind right ear.

Anniversaries, Part II

Today is the one year anniversary of the eye surgery I had to correct my vision as a result of my multiple brain injuries in March 2014.  I've been driving for a year and I've gotten more comfortable in the car.

I'm still trying to navigate how to effectively deal with the pain from the injuries I had. I have throbbing pain on the left side of my brain (where my shunt used to be) Additionally, the shunt causes pain as well and has a mind of its own. There's throbbing in the back of my head by my cerebellum (from the chiari malformation from the shunt over-draining from 2009-2014) Tingling on the top right and left sides of my head. There are pains from the distal catheter portion of my shunt in my stomach/abdomen.  The distal catheter pumps csf fluid into my abdomen, it burns. I hear the shunt too, only in my right, ear where I am tone deaf.

Pain medication does nothing to alleviate my symptoms. The neurologist I've been seeing since 2014, thinks the pain I feel in my head is because I'm depressed. I know this is not the case. The medication I was given to treat my 'depression' does nothing to alleviate my symptoms.  The good news is he was concerned about me when I saw him earlier this month. I'm convinced when I see him again in June, he'll finally see my symptoms are not from "depression' and are a direct result of the trauma I experienced in 2014.

Signed copies of the film based on my brain injuries is available here.

2nd

Anniversaries can be both weird or not so weird. Today it's been two years since my multiple brain injuries. I consider myself very fortunate that I didn't develop hydrocephalus ex-vacuo as a result of my injuries. The first anniversary was a challenge to get through as I still had double vision and was anticipating my upcoming eye muscle surgery on March 19, 2015.  My misaligned eyes was a reminder of what had happened to me.  However, the second anniversary was easier mostly due to my eyesight being corrected and I'm feeling better than I was last year (when I still had numbness in my muscles and tendons. )

Still trying figure out a way to deal with the pain I feel as a result of the injuries I had.  Since 2014, I've had pain in the back of my head by my cerebellum due to the chiari malformation I acquired from the shunt revision in 2009.  I also have slit ventricle syndrome as a result of my shunt over draining between 2009-2014.  I feel pain in the nerves and the ventricles due to the damage and my body still searching for the shunt to be on the left side of my brain. I've tried sleeping on my right side, which has helped a little with the pain issues on the left side of my brain.

I'll be celebrating my injuries as a second birthday all month. In 2014 I was in rehab from March 11 - April 5.  Today I went to the movies and it was nice to get out of the house.  I'm not able to work right now and I'm home 90% of the week. Things will be this way until I start vocational rehab sometime this summer.

My brain on paper

On 1/19/16, 1/26/16 and 2/2/16, I received psycho-education testing to determine the level of brain damage after my multiple injuries in March 2014.  Each session was two hours long and there were three in total.

According to the tests I took which included Benton Visual Retention Test, Haptic Visual Discrimination Test and the Woodcock-Johnson Visual Education Battery exams I scored at different ranges. Overall,  there's been a slight improvement in my IQ since 2014. Still having math and some memory issues, but that was always the case I just need extended time.

I'm still unable to work right now and I can take Adult Education Courses at Rockland BOCES which will be paid for by Rockland County Association for Learning Disabilities.

I can receive employment assistance through ACCESS-VR to help with interview skills and job placement.

I'm still dealing with brain and nerve pain as a result of my injuries. Trying to figure out how to deal with the pain. The shunt causes me pain more than it did before most likely because of damage and two conditions I have now: slit ventricle syndrome and chiari malformation. Both were as a result of my shunt being place on the wrong side of my brain.  I learned through online brain injury and hydrocephalus support groups that programmable shunt valves can be affected by the weather. I've noticed when it gets cold outside (depending on the barometric pressure) I have pain on the shunt valve and on the distal catheter in my brain. Because I am hyper sensitive now because of what happened to me, I can hear the shunt as well and feel when csf gets re-absorbed into my abdomen.  The csf burns.

As mentioned in previous posts, I can hear my blood pressure behind my right eye.

It's kind of cool and very bizarre at the same time.

Three Days and the Weather

The last three days the shunt has been causing me pain and throbbing frequently. This is followed by over drainage in my forehead, pain in the back of my head ( I suspect from the Chiari Malformation or from the Slit Ventricle Syndrome or both ). Pain medication doesn't alleviate the sensations I feel. I've also been very tired, more so than usual and I think it's again because of the shunt. Everything is working the way it should be.  I do believe the pain and sensations I feel could be due to the weather.  The temperature where I live has dropped quite a bit since the beginning of January.  In November and December we were spoiled with Spring like weather in the winter time with temperatures at 60 degrees.  Now it's January and the temperature has plummeted to 15 degrees.

I believe there may be a link to the weather and my programmable shunt valve. 

Found other people talking about the very same thing I am:

Life with a severely disabled child.

Barometric Pressure and VP Shunts

I would ask my brain doctor about this but.... Oh wait...That's right, I can't find one who will listen to me. 

The search for a competent doctor continues...

In the meantime, I'm finding ways to keep my mind off of my shunt discomfort.  I am grateful the it's actually working correctly.

Coping Skills

Read an article today about how some people deal with adversity and find creative ways of coping.   I originally made a film about my shunt not working and my movie changed because of things which happened while I was in the operating room.

Sometimes people have disassociated or separated themselves in some way emotionally, psychologically from the situation they are in.

I've looked in on the lives and stories of my characters through the years and it made sense for me to disassociate from my own situation and tell my own story. Doing so allowed me to filter through my own feelings.

The surprising benefits of going through hard times can be found here.