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Written Debbi Fields, Executive Director

For some time now, I’ve received requests to share my story, I decided that now would be a good time.

All my life I knew there were a few different things about me, like headaches, but they ran in my family, no big deal. I also had bad balance. Among other things, was the fact that I could never lay on my stomach or back, when I did, it was like the blood was getting cut off from going to my head.

When I was 36, I got the headache from hell. I tried all my tricks to get rid of it, but nothing worked. I tried to get a doctor’s appointment, but the office staff kept telling me it was a Cluster Headache and to lay down in a dark, cool room. (Didn’t they think that I had already tried that?) I was still on Michael’s employer’s insurance plan and they had their own medical facilities, so I made an appointment. I saw a Physician's Assistant, she gave me a prescription for some pain medication and asked me to come back in two days. Needless to say it didn’t work, so she got me in with a neurologist and he ordered a CT scan. The morning after the scan, I was at work when the neurologist called and said that the results were in and that he was referring me over to a neurosurgeon and that I was to call him immediately. (Yikes!) Ok, the brain was not working on all 8 cylinders (as I often tell others), BUT, I knew that this wasn’t good… a SURGEON!! (Yikes again.)

I really lucked out with the neurosurgeon I went to see. (I do not like doctors and wasn’t brought up with medical care and am leery of them.). Michael and I went to see the neurosurgeon and he told us that I had hydrocephalus and needed to have surgery to put a shunt in which would relieve the pain and get the fluid under control. He even brought a shunt out of his drawer and showed us how it is placed inside. He was so patient and kind, we felt completely comfortable with him. I had surgery a few days later.

A month later, I had surgery again as the distal tubing (the tubing that goes into the abdomen) was really bothering me, so it was re-positioned.

Then, to cut the story down a bit, on an average of about every 18 months, I had a revision as I kept developing a blockage.

After about the 3rd or 4th time, the doctor wanted to know what I ate - Food! But, as he inquired, he discovered that I ate a lot of red meat. (Hey, I’m from the Midwest!) He then told me about the different things that we eat that contain protein and how the proteins are designed for different areas of our body. He told me that the protein in red meat is sticky and that it goes into our brain and some of it goes over to the production of the CSF (spinal fluid), and that I needed to cut some of the red meat out of my diet. I did… and guess what? Darn it! He was right, because, I went a lot longer when I needed another revision.

Shortly after my original surgery, I was curious as to what the heck hydrocephalus was, so I went to libraries. All I could find was one or two paragraphs about the condition and it generally had to do with newborns, nothing beyond that. Mind you, the Internet was just an infant and had not grown up to the point that it is today. Thankfully, my neurosurgeon told me about the medical journals and how to gain access to them at larger libraries.

My neurosurgeon suspected that I was born with a very narrow aqueduct that eventually closed. After my surgery, he wanted me to talk to my parents about my childhood. Oops, I raised my hand to stop him and let him know that my parents were deceased. He asked me to talk to my older brother and sister. I chuckled to myself, went home and called my sister, joking about all this. She then began to confirm some things that I had always kept to myself. Whoa! So, when I went back to the neurosurgeon, I told him. He then told me that I was born with a mild case, that my body compensated until it could no longer do it itself. (Made sense.)

I’ve had many a surgery during the last 26 years and each one has educated me. Especially in 2002. I had put off seeing my neurosurgeon (too busy) and when I finally did, he told me that the tubing was old and cracking, but said ‘let’s wait until it completely breaks and we’ll give you a new shunt.’ I had been in pain for a year and I told him of this. He was suppose to get the authorization from the insurance company and then the surgery would be set up. Well… it was taking too long and I do know how insurance companies work. I paid attention to my own advice and went for a 2nd opinion to the head of my medical advisory board, Michael Muhonen. He looked at the scans and said that he really didn’t see the tubing cracking, but that it was calcified thus causing the pulling in my neck.

To make a LONG story short, I changed doctors and had surgery done by Dr. Muhonen and his partner, Dr. Louden. They replaced the distal tubing (the tubing that drains in the abdomen). But, I had further trouble and had another surgery to replace the valve and reservoir (Medtronic Strata) ...oops that didn’t work! Everything was removed and they performed the ETV (Endoscopic Third Ventriculostomy) and monitored me… oops, again. I was then externally drained and had pressure monitoring. It was then that they suspected, that at some point in time the original (fixed) shunt valve had broken and was running wide open, thus over-draining me. So, now it was to find a shunt with a low enough pressure setting to handle my situation. That is when they came up with the Codman Hakim shunt (which has 18 settings). It was placed on the my left side of my head instead of the right. Although I came back to this reality (as I put it), they had to take me back into surgery as the Anti-Siphon valve was causing me to have “problems”, so back to surgery to remove that. As soon as I awoke - things were great! In my mind, I had just had that first surgery… I didn’t realize that it had been a month! But, what a LONG recovery that was! AND, it was three years before I had to have another revision. I have now gone 4 years with no surgery! (A record in my book.) I feel better than I ever have and am still very thankful to Dr. Muhonen and Dr. Louden!!

Now, I would like to share with you how I got involved with NHF. During my quest for education on hydrocephalus, I was grocery shopping, passed by the magazines and happened to notice one that said Top 800 Numbers for Self-Help Groups. I thought to myself "Yeah, like there will be something on hydro…" Sure enough there was, so I wrote down the name and number and called them when I got home. I connected with their Executive Director, Warren Barshes. First, he was surprised that I was an ADULT with hydrocephalus, but was more than willing to answer questions and send me information on hydrocephalus. He also asked for me to write down my story, that they would like to put it in an upcoming newsletter (and I did).

I became a peer-interactor for NHF, whereby I talked to parents or met with them to help educate and befriend them. I also started a local support group.

A few years later, I went back to the university to finish off a degree that I had started long before hydrocephalus entered my life. During that time, I received a call from Jim and Linda Mazzetti, the parents who started NHF. They advised me that they were going to shut down the foundation, the Executive Director (at the time) had quit. I told them that I would like to see what I could do to keep it alive since the foundation had helped me so much. So… in 1999, I took over the reigns of National Hydrocephalus Foundation, and finished my last year of education at the university.

I’ve always kept the intentions that NHF started off with - to help educate parents, patients, and caregivers. We now have a new website, additional brochures, and conferences to further educate those affected by hydrocephalus. We make contributions to research - and - for those of us who are involved with NHF, we do NOT receive any kind of salary or compensation.

I owe a lot to NHF and am dedicated to helping others. I’ve always believed in paying it forward and in doing whatever I could to help others.

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