LP Shunt

So Tuesday was the BIG visit with the Neurosurgeon. I have to say the overall the news was very encouraging!! Given my current vision, which is basically none in my right eye, the decision to do a lumbar shunt was made, within the next week. The encouraging part: No skull drilling, no head shaving, less recovery time and the duration of surgery is significantly less.
So what does this mean???
Well, they will insert the "catheter" like tube and silicone mechanism you see above into my lower spine area. It will have a larger tube, at the other end,  that will then drain the excess CSF fluid into my abdominal cavity, where it will be absorbed. The control valve, which has 5 settings,  will be placed under the skin next to my spine and can be adjusted with a magnet, if needed. Three small incisions (spine, side and abdomen),  hour to two hour surgery and a few days in hospital! All good news.
The tough part will be the days to follow coming home. For 10 days I will not be able to do anything at all. (If you know me then you know that this part is going to be extremely tough.) The reason for this is to allow your body to adjust to the new CSF pressure. They will set the drainage to a medium level, to begin with and it must stay there for about 30 days. If I am not feeling any relief after the first 30 days then they can adjust the drainage, in office, with the magnet.
The worst part of this is I can expect to have what is called a low pressure headache for the first few weeks. This is considered normal. Painful but normal. This is caused from the drop in CSF pressure levels and can be unbearable.
The brain normally sits inside a “bag” filled with spinal fluid which extends down from the skull into the spine. The “bag” consists of membranes called the meninges (as in meningitis). The CSF fluid helps to circulate waste products out of the brain and provides cushioning and support. When the pressure of this fluid is too low, the brain may “sag” downward when the patient is upright, stretching the meninges and nerves lining the brain and causing SEVERE pain.
These are the same type of "headaches" I get after a spinal tap and from what he said, until my body gets accustomed to the lower pressure, I will have a continual "spinal" headache. This is the part I am not looking forward to the most.
There are of course risks and complications as there are with any surgery, but I really think the benefits out weigh them at this point.
However, I know that once I get over the initial "hump" things should increasingly get better. The goal is to have my vision be somewhat restored and the daily pain subside.
I am truly blessed to have such a wonderful support system, whom I could not get through the day to day without. I know that with them and God by my side I will be able to survive those first painful days and I look forward to a much brighter future ahead.

Is there a Silver Lining?

We often take for granted how good life is and forget how quickly things can take a turn for the worst.
While these last few years have not been a piece of cake for me, or my family, I would like to think that I have done my best to find the silver lining in  EVERY grey cloud along the way.
Although, lately I feel as if there is not a silver lining or a blue cloud in sight.
After LOTS of tests and procedures over the last few months I have been forced to face the realization that I am not going to get any better on my own, regardless of what I would like to think or what little magic pill I am forced to take.
I had a visual field that left the doctors telling me I have a 90% chance of going completely blind in the next few months. A nerve test that resulted in the confirmation that I have severe damage to my brain and right side of my body and a spinal tap that resulted in a elevated CSF pressure reading. Think that's alot to take in........ well you have not even heard the best.
Apparently the severe pain upon standing that followed the tap confirmed that I have a defective "ball valve" in my brain. What is the ball valve and Who the heck has a defective one? and why in the world am I the special one who gets the defective one? Is this some cruel joke??? Did I skip class the morning these were being handed out? I mean as if my already dysfunctional brain was not enough, now I get defective valve? If I were an old Buick they would put me down!
In my case a PT Cruiser, but hey that's a whole other post!
Learning this explains alot. It explains why some mornings upon awaking I throw up and others I don't. It explains why sometimes upon standing I get extremely dizzy, why I can only sleep flat on my back because lying any other way causes an extreme burning sensation, why I have so much pressure behind my eyes and a gazillion other things. See the defective valve thingy does not allow the CSF fluid into my brain or it's ventricles properly. Sometimes it rushes in and other times it trickles and apparently if it is stuck it can flood my brain and / or not flow at all.
So what does all of this mean? Well I will find out when I go see the surgeon on the 21st. Looks like there is a shunt in my future. I can not say that I have decided 100% (or even 10% for that matter) that I am on board with this option. While my neurologist does not think I have any other option and he assures me that I will see a dramatic improvement, I am terrified. Terrified of the operation, terrified of the potential complications, terrified by all of the stories I have heard and read about shunt malfunction but most of all -  terrified it will not work.
See truth be told - I am tired. Very tired!! Tired of being sick, tired of being in continual, non-stop agonizing pain, tired of being tested, poked and prodded and tired of watching my family watch me go through this.
I would not wish the ups and downs of this horrible "disease" upon anyone.
My poor sweet babies do not deserve this. Sometimes I feel like if I would just forget about it or suck it up - it would be so much easier on them. But then I have to remind myself that recognizing my limitations is what allows me to be able to get up and move forward with each day. It doesn't determine how fast I will move... just that I am moving and for right now I guess that's all I can ask.