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.