My neurosurgeon had a very difficult time trying to find someone to treat me. He called all over the Portland area and everyone turned me down. Finally another provider in his office that hadn't met me yet agreed to see me.
Upon meeting him, he said that he didn't think he could help me or anyone else for that matter. He said that they are seeing this kind of situation in patients that have been shunted for life. Their ventricles basically shrink up and become non-pliable because the CSF is being taken out unnaturally. He also noted that because of the condition my ventricles are in now, I will feel any bit of difference in pressure within my brain and the environment. I need something called a smart shunt but they haven't been invented yet and may not be ready for patients for many, many years.
He did run some tests but didn't see anything new. He suggested that I move back to CA because I had so many less problems there and the barometric pressure is different than where I live now. He thinks I am very sensitive to barometric pressure changes. The weather is much more constant and stable where I grew up. Then he basically wished me luck and sent me on my way.
I immediately spoke to my ex-husband about this. He has agreed to let my son and I stay in CA for most of the summer to see if I feel better there. I have to stay in Washington long enough to see my neurologist and get my optic nerves checked again at the beginning of July and then we will be on our way.
Since that neurosurgeon brought this to my attention, I have been checking the barometric pressure daily on my phone and have been keeping track of the headaches. In just a month and a half I have determined that I am in horrific pain and have more vomiting when the pressure is above 30 hg (whatever that means). Also when my son and I were visiting in CA over Christmas break we were in an earthquake and I knew something was about to happen before it started. I got extremely dizzy and the headache intensified. So I think the surgeon is on to something.
This past mother's day I went to CA. Although my headaches weren't better in the 3 short days I was there, I did notice some other changes. I didn't have any vomiting. Also on my shunt side, my left ear has been making a whooshing sound and ringing noise in it for about a month. That stopped while I was in CA and my first night back in Washington it started back up again and continues to this day.
I am counting down the days until we leave. The thought of being around my family, my support system, for 44 days just brings a smile to me and my son's face. I am pretty sure our family is counting down the days as well.
I am also very, VERY excited about the possibility of feeling better. I want to really start living life again. Right now I am just going through the motions. So my California family and friends let's finish some dance videos, do some book parties, go on some outings and spend some quality time together. Oh and to my nephew-I will read many, many books to you because I will have plenty of time. How fantastic is that?!?! So get ready California!
This blog is about living my life with Hydrocephalus. I acquired it shortly after birth so I have many experiences to share. I will be very open about my journey. Feel free to comment, ask questions, suggest a topic for me to write about and share the posts. Please keep in mind that I am just one person out of millions. We may not all share the same symptoms and experiences but we can certainly be there for one another. Thanks for reading!!
