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.