Sandy, 58

Rare Disease Advocates Hydrocephalus

Sandy (front with the blue scarf) joins other hydrocephalus advocates for Rare Disease Day 2016 in Washington, DC.

I was diagnosed at age 12 and then received a VA shunt at age 18 in February 1977. From 1979 to 1981, I was in and out of the hospital. In 1979 my shunt became disconnected in my neck and the vein collapsed, making it impossible to put the shunt back into my heart. So I had a VP shunt placed. Between 1979 to 1981 I had 14 shunt failures and revisions. In 1981 I they replaced my VP shunt with a VA shunt again, and I also had an appendectomy. After a little break, from 1985 to 1991 I was in the hospital once a year, for a leak in my shunt tubing, followed by a shunt infection in 1991 leading to 2 surgeries and an entire year to fully recover. In 2004 and again in 2005 I experienced shunt failures.

I was known as the patient where anything that would or could go wrong, did. It was hard to diagnosis my hydrocephalus because I had a blockage in the center of my brain that would close off and then open and release on its own. Then, at age 12, it did not release as in the past and I had headaches and slept A LOT! I was taken to Barnes Hospital in St. Louis and there they found I had hydrocephalus. Then the headaches stopped again. There was only one test to do at that time to find where the blockage was. It was 1977 and we did not have a lot of options. The test was a pneumoencephalogram, an invasive test in which most of the cerebrospinal fluid (CSF) was drained using a lumbar puncture and then replaced with air, oxygen, or helium to allow the structure of the brain to show up more clearly on an X-ray image.

In 1977 late January or early February, I had the pneumoencephalogram performed. It was truly terrifying, to say the least. Writing it here – which I’m sharing for some of the younger folks reading my story who are lucky to not have to be subjected to this test anymore – does not even began to show the real the truth of what it was like. They took me to the basement of hospital and as the doors opened and we started down the hall, I asked why we were in the basement. The women replied so that no one would hear me screaming. When we got to the “ROOM” and they put me in a chair and strapped me in, I could barely move my fingers or toes. Every part of my body was strapped down, including my head, so that I could not move at all. I tried my best to focus only on what the technicians were telling me to do or what was going to happen next. Then the needle was put in my spine. To me, it look a very long time. I was given no pain medicine of any kind because I had to be awake and alert during the test to answer questions. Then the air and or gas was injected into my spine to my brain. It was such a horrible pain. Then the chair was put in different positions and pictures taken. The female technician was by me, asking me questions throughout the test. The male technician was running the machine that took the pictures.

At one point I was truly frightened for my life. During the test they moved me into different positions. While I was facing down looking at the floor, I could not answer the woman. The two technicians began to talk amongst themselves, deciding if they should stop and call the neurosurgeon and tell him I could not speak and see if he wanted me to be taken into surgery without finding the blockage. I could hear my voice inside my head speaking/screaming, asking them to sit me upright. In my head I was screaming, “I can hear you and I can speak.” Finally they sat the chair upright and I could speak again. They restarted testing and found the blockage. I was taken back to my room and surgery was scheduled for the next day.

I will never forget  that day as long as I live. In years since, several neurosurgeons have told me that the pneumoencephalogram is no longer done. They were glad about that because it was akin to torture. For me, it was like being a prisoner in the electric chair being put to death. I was only 18.  And while that test almost killed me, I also believe I would not be here today had they not performed it.

Over the course of my care, I have had so many procedures – one pneumoencephalogram, 19 brain surgeries, one shunt infection, one subdural hematoma, and too many x-rays, CT scans, and MRI’s to count. 1979 was a particularly hard year. I had seven surgeries and 13 hospital stays in 12 months. I was there every holiday and my birthday. Each hospital stay I was in the hospital 14 to 21 days. I only had my mom there when she did not have to work. My dad came the day of my surgery; my brother never came because, he could not drive (he was legally blind) and lived too far and it cost too much. One of my two sisters visited twice, but the other never came. I had a friend come twice. Other than that, I was alone.

When I got home, it was like nothing ever happened. Life in our family just went on. My mom nor the rest of my family wanted to talk about it or deal with my hydrocephalus. In the hospital it was like my own world with those other patients and families that were on the neuro surgery floor, there for a number of different reasons. We were like family and gave each other support and laughter in the face of death or waiting to see which way our health was going to go. Amongst all odds, we all hung in there and gave each other support and encouragement as we shared our life stories.

With the exception of 1979-81, I have worked full time and sometimes 2 or 3 jobs to pay my bills. I would return to work as soon as the neurosurgeon would release me. I have never used hydrocephalus as a reason or excuse not to work when I was able. I am thankful and blessed to be alive, to live on my own and to work. Most days I am in pain. I have other health issue that are unrelated or a cause and effect of my hydrocephalus or the many surgeries and procedures. Some days I think, “This is it. I have to give up working.” But then I find that deep down inner strength and move forward and upward! I keep going and keep believing in working hard and giving back. I am involved in 8 different organizations and I volunteer at events and raise awareness and funding for each! I am blessed to be alive!!!

One thing is for sure. Our hydrocephalus family is filled with love and support for each other! We each have our own unique stories!

Sandy is an active advocate for hydrocephalus and a member of our Hydrocephalus Action Network. She also attended our 14th National Conference on Hydrocephalus and entertained the children at our Kids Camp as Eddie the Elephant!

Eddie the Elephant

Eddie 2

Eddie 3

Eddie 4

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

 

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