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