Pseudotumor Cerebri

This is a post that I have been wanting to do for quite some time. Mainly because this is supposed to be a journal about my family. I want my kids to read this sometime and be able to understand why thier mom was the way she was. Also, alot of people that I run into always have the question "what is it you really have?" So I thought maybe I should do a post all about Pseudotumor Cerebri (PTC) or Benign Intracranial Hypertension (BIH). I completely understand if this post sounds way boring to some of you so feel free to skip. I mainly just want of record of what I have been dealing with for the past five years now.

My battle with this disease began when I was four months pregnant with Lucy. I was diagnosed with a viral meningitis. It was really scary and was hospitalized for it. The pregnancy was very difficult. The dr.s all assured me that Lucy would be ok and life would go back to normal as soon as I would give birth to her, but that I would be alot more susceptible to headaches. After I delivered Lucy I still suffered from extreme headaches but I thought it to be normal and didn't check back with my neurologist like I was supposed to.

Our life moved on and we sold our Hamlet townhome and we moved in with Karol. A few weeks after living with her I had a horrible headache and could not function. I was scared that I had gotten meningitis again. Tyler took me to the hospital and they did a spinal tap. Good news was that it was not meningitis but that I had Pseudotumor Cerebri. By the name of it it makes it sound like I have a tumor in my brain. There is actually no tumor. A phantom tumor is what a lot of dr.s call it. The minengies in my brain were not functioning properly. Your body is constantly procuding spinal fluid and the minengies around your brain secrete it. Mine were not secreting it properly so therefore fluid would build up around my brain and put pressure on it making my brain think that it had a tumor. So my body would act as if I had a tumor. Mainly I had alot of nausea and a lot of swishing sounds in my ears. The only way to relieve it fast was to have a spinal tap. Spinal taps, oddly enough, became my best friend. It was the only thing that kept my head from hurting. The hard thing about spinal taps is you have to be flat after them. As of today I have had around 13 or more spinal taps. The blessing in disguise was us moving in with Karol. Not really a blessing for her though. She had to take care of my family because I couldn't. To this day, I really believe that one of the reasons I was ment to marry tyler was because I needed to have the mother-in-law that I have. She kept our little family together.

I worked with a neurologist for quite some time and was started on medication. After a while he decided he could not help me and referred me to Dr. Digre up at the Moran Eye Center at the U of U. To this day she is still treating me along with a neurosurgeon Dr. Richard Schmidt. Dr. Digre tried me on every medication possible to treat this disease. All the while I am dealing with headaches every single day. Waking up with a headache and going to bed with a headache becomes a very hard life to deal with. I mainly felt bad for my kids. I just didn't have it in me to take them and do the fun stuff a mom should do. Luckily I was blessed with wonderful kids who are very understanding and patient. And with wonderful family and friends who help me with my kids. I am truely a product of family and friends helping me raise my kids. I honestly have not raised my kids.

Here I am five years later and still dealing with all the same issues. It has been a very frustrating last few years. Tyler and I decided to have a surgery to try and help me out. There are two different shunts that they can use to try and relieve this pressure in my head. The first is a VP shunt that is actually placed in the head with a tube that goes down the neck and end in either the heart area or the stomach area. Which ever the surgeon decides is best. The second shunt is an LP shunt. This shunt is placed in the spine with a tube that wraps around the waiste and end with a drain in the stomach are. Tyler and I decided to start with the LP shunt.

This is as close as a picture I could find to show what it looks like. I had the surgerly done on July 27. Today is August 14. and I am still down because of the surgery. I have had some headache relief. The last few days I have been feeling some tightness in my head and so I am to stay down hoping that the shunt will unclog itself. There are many things that can go wrong with this shunt. It can cause Chiari (where the brain is sucked down the spine), it can cause many infections, or it can just simply malfunction or pop out of the vertibret that it is in. We are hoping that none of this happens to me. This surgery has been a lot more difficult to heal from than I had expected but I am hoping that it will all be worth it. If I do have to many problems with this shunt, then we will try the one in my head. Strangely enough, I almost wonder if I would rather have the one in my head. I don't think I would feel it as much as I feel this one. It is very uncomfortabel moving with it. I can feel the tube around my waist, which makes it difficult to get in a comfortable position to sleep in at night. But then I always think, "Would I rather be uncomfortable or would I rather have part of my head shaved?" Tyler thinks I am crazy that I am most worried about getting my head shaved with the other shunt, but a girl needs to worry about her hair!

I am very glad I got the shunt because it has given me headache free days, and I forgot what that was like. It is very frustrating to still be down but I know it won't be forever. So far I think the shunt is a success. Anyone out there that has this disease.....I highly recomment this procedure.

Poor Ellie.....It is her 9th bday today and I am down. Tyler is having to be quite the Mr. Mom. He is making her birthday dinner tonight and is doing her friend bday party tomorrow. I feel like I have missed out on so much with my kids. All Lucy knows is me being this way. Ellie and Philip keep asking me if I am ever going to get better and that really breaks my heart. They remember before I got pregnant with Lucy and all the things I would do with them. The kids today think Tyler is the only one who can have fun with them. I am soooo greatful to have such a wonderful husband who will take over the whole household. I am not trying to be cheesy by saying this about tyler. I honestly don't know who else I could have married who would have taken over this family the way he has. He literally works his more than full time job and takes care of the household and kids. He is teaching Philip quite the cooking skills. I am proud to be apart of this family!