My experience with missing hydrocephalus/shunt related symptoms as an adult.

I hit my valve hard in Janurary 2009, which had happened multiple times without any problems. Between my history of being fine after, and not having insurance at the time I didn't seek medical attention. I developed headaches soon after which varied when it comes to pain level, but got consistently really bad for a long time after. I had a CT Scan in June of that year which showed no signs of increased ventricles which I was able to pay for out of pocket. When my insurance from my job started at the end of the year I went to the ER. The scans came back the same, and I was referred to a neurologist. He gave me a diagonisis of TMJ, and it seemed that I couldn't get a refferal to my neurosurgeon. I had issues with my finances soon after including not always getting enough hours to have my health insurance through my job every month. When I was getting the health insurance. Between the two, and other issues I flkaed out for a while. I went back in 2013 after I was promoted at my job, and was able to get things in order. The scans including an MRI all came back looking normal. I was sent to a neurologist, and she tried multiple medications. It was mostly meds like low dose seizure meds that can also be used to treat headaches, because of not knowing for sure what the source was. She also tried botox, and the only time time that I noticed that it had been working was when I could tell it was wearing off months later. Between feeling like I was hitting a dead end, and having to deal with other issues I stopped going to appointments for what was supposed to be a short break in 2015. Due to finacial issues, and a lack of motivation I didn't go back until 2019. It started with more scans, and a couple other routine tests that I had done before. It ended with the same results, and no option to continue on at that point. I had a incident at work several months later that I was, and still am certain that it was shunt related. I went to my neurosurgeon, and got the same results. The scans were close to the same, but I was told that the previous neurologist had given me a referral to a neurologist with more experience that was right for me. From there I was referred to another neurosurgeon in the same office that the neurologist is at. After the routine scans, I was given a lumbar puncture which showed that the pressure of my cerebrospinal fluid was way higher than it was supposed. Since it's been confirmed that we found the source, I've been a lot more hopeful. I've had symptoms the whole time, some of which has gotten worse over time, the most noticiable one being dizziness. But since my scans looked normal, and I wasn't showing a lot of the major symptoms I wasn't able to start to get the needed help for over 10 years. Below is a link to my first post on this subject about having a similar experience as a baby. http://timothy-landry.blogspot.com/2022/06/my-experience-with-missing-major.html

My experience with missing major hydrocephalus symptoms as an infant.

 My shunt was placed when I was 16 months old. But I was showing symptoms long before that, possibly as early as when I was born. But it only became obvious that something was wrong with me when I missed multiple milestones. My major symptoms were missing milestones that involved having to pulling myself up. I was eventually hitting them, but it was a very slow process. My other major noticeable high pitched screaming. But I was either missing the majority of the others, or they wasn't noticeable enough for my Parents to get a referral to a neurosurgeon. What got me my referral was a nurse at a free clinic noticing me. She showed up to my Parent's apartment did head measurements, and got me a referral to my childhood neurosurgeon. It all happened so quick that my Parents didn't realize what was going on in time to thank her. My developmental delays that I had as a infant immediately got better. I had other delays that I still struggle with, but most of them got way better with different therapies as a child. Most of them are normal with people with hydrocephalus, or other neurological disorders. But there are two that my parents were told directly involved my late diagnosis. Those two are my speech impediment, and my hand tremors. I couldn't speak until I started speech therapy in Preschool. It slowly got better, but it got to the point in high school where being pulled out of class was a bigger issue than not getting the last few years of speech therapy I would have gotten before finishing high school. My hand tremors started around the time I started puberty, and hasn't stopped since then. My current neurosurgeon told me that it's not necessarily because I was diagnosed late, but it may have been caused at that age because of certain hydrocephalus symptoms coming back, or starting later on in life. I'll talk about both more in future posts. I'm hoping to write another post this week, about my experience with a lack of shunt malfunction symptoms this week.