Stepping Out of Your Comfort Zone

Be Brave and Share Your Story!
You Never Know Who Will Step In and Support You

By: Mindy Weinstein

At the age of fourteen, I didn’t want to be viewed differently. I didn’t want to be labeled as “the girl who had brain surgery and almost died.”  Years later, I have tried to change this way of thinking.

Unlike many people who suffer from hydrocephalus, I wasn’t diagnosed until I was a teenager. The signs were there for years: excruciating headaches, nausea and blurred vision. For my parents, though, the diagnosis was still a shock.

Each and every person who has battled hydrocephalus has a unique story and account of his or her struggles. My hydrocephalus story really began in July 1994 when I was finally diagnosed. What should have been an average summer day was anything but. I woke up in the early hours that morning with a headache I had never experienced before. I had other symptoms, as well, that caused my parents to be alarmed. They decided to take me into the local urgent care.

I don’t remember a lot from that day, so most of what I know is based on my family’s explanation. When we reached the urgent care, my father had to carry me, as I had fallen into a deep sleep. Despite the signs I was exhibiting of hydrocephalus, the doctor diagnosed me with the flu and sent my parents and me home. That is when things took a worse turn. I became unresponsive and, call it a parental instinct, but my mother recognized something else was happening. My parents rushed me to the hospital where I was diagnosed with hydrocephalus. My brain had swollen to four times its normal size.

I was fortunate to survive, but I actually look at it as being blessed. At that time, I received my first shunt and the doctors determined I was born with an abnormality in my ventricles, which led to hydrocephalus.

Why Wouldn’t I Shout it From the Rooftops?

You would think that I would have told everyone how it was a miracle I survived and had no side effects from hydrocephalus or the surgery. Instead, I kept it a secret from my schoolmates and went about life as normal.

Fast forward seven years when my shunt failed for the first time. I had been married a month and found myself at the hospital awaiting brain surgery—it was terrifying. Again, I made it through. However, a few months later, the shunt became infected and was removed. We opted for the endoscopic third ventriculostomy (ETV) procedure, but really, we didn’t have a lot of options.

It was an unnerving struggle during those years, because I had many close encounters with death. Even though there was uncertainty whether I would ever be able to have children, I am here almost twelve years later with two adorable sons. My severe headaches are also now a thing of the past.

I Stepped Out of My Comfort Zone

To this day, I don’t talk about my condition often. I have had a hard time shaking the concern of being labeled and I don’t want pity. It wasn’t until last year that my husband pushed me to get the word out about our participation with the Phoenix Hydrocephalus Walk. He encouraged me to post something on Facebook for all of my friends, acquaintances and co-workers to see. He said we needed to raise awareness, and he was right. As a result of that one post, the company I work for, Foster Web Marketing, decided to get involved.

One of my co-workers led the way, as she rallied the office to sign up for the National Capital 5K Run/Walk for Hydrocephalus held in Washington, DC. It was all done without my knowledge, so that they could present it as a surprise to me. I was in tears when I heard the news.

There were fifteen people who ran as part of the Foster Web Marketing team, which included one spouse and three children. They endured the cold weather and laced up their sneakers to run in my honor. While some ran the course, the other amazing members of the Foster Web Marketing team gave their support and cheers from afar.  Foster Web Marketing, along with the individual participants, was able to raise an impressive amount for the Hydrocephalus Association!

Why did Foster Web Marketing jump in and participate in for the National Capital 5K Run/Walk for Hydrocephalus? In their own words, “This is a cause near and dear to us because one of our team members has battled hydrocephalus.” I would encourage other employers to follow the example of Foster Web Marketing and get out there and support your employees who battle hydrocephalus.

My Lesson for You

The moral of the story I am sharing is this: Be brave. Tell others what you have gone through. We all know awareness needs to be raised regarding hydrocephalus. You may be surprised who gets behind you to support this cause!

 

 

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9 Responses to “Stepping Out of Your Comfort Zone”
  1. cyclingfisherman says:

    I’ve had hydrocephalus since I was 4 months old. I’m 45, and until June of this year, had no problems with my shunt. The whole process of figuring out why I was having pressure in my head, falling etc… was exhausting in itself. I had shunt revision surgery on December 4th. and am feeling much better. It was determined that I was disabled 5 days before my surgery. Up until then, I was not considered disabled, and had no insurance. Has anyone else had this problem. Why is hydrocephalus not considered a disability?

  2. Kim Crespo says:

    Hello…

    We found out that my grandson Shea has hydocelphus at
    At 6 months. His shunt was put in at 9 months. When we found
    Out it was the most devastating news we have heard. We knew nothing about hydrocephalus
    Our grandson is now 2 and never had a revision and is a healthy little guy.
    We do not treat him any different than my other grand children we just tell him that he has something special that Jesus needed him to have. Thanks to The Lord above and his dr’s we have
    A healthy and happy normal 2 year old. P.S yes he is in in trouble 2′s

  3. Amanda says:

    When i was 18weeks pregnant i found out i was going to be having a boy but that day we also found out that his head size was larger than normal amd the doctor explained the different things that could cause that and hydrocephalus was one of them. I had bever heard of it before and went home and started researching it. My son was born at 37 weeks and the doctors decided not to do surgery but he remained in the nicu for 3 weeks because he got a infection in his intestines when he was just a few days old and theu didnt allow him to bottle feed for a week. The last 2 weeks in the hospital were to teach him how to bottle feed. The day he was sent home was so exciting but scary at the same time. Unfortunatly we were home less than 14 hours before hos head size started increasing it had gone up almost 2cm in justthat short amount of time so we went back to the childrens hospital after being in the er for 12 hours he finally got a room and a few hours later was taken into surgery for a shunt. The next day we went home but had to go back 3 days later because of a 104.7 temp. He was so sick that when they did a spinal tap on him he did not even flinch or cry. After 10hours in the er he got a room and was there for 4 days waiting on the spinal fluid cultures to grow but they never grew anything so he was sent home. We have been home since then and my son is now 2 and a half and has had no revisions or any other complications. He even tested at a 37month level on speech when he was 26montha old. He is talking better and saying more than any other child in his class at daycare as well and amazes is more and more every day!

  4. Stephanie Lang says:

    I was diagnosed at 5 weeks old with hydrocephalus. I have had many revisions and still have memory, and balance problems. The scariest surgery I ever had was when I had my shunt “tied off” making it a non-fuctioning shunt. For 2 years I was fine and then I started vomitting, had a horrible headache, and lost my eye sight for just a few seconds. I was taken to the emergency room and had to have the shunt untied. I have sense been battling “slit-ventricle syndome” too little fluid in the ventricles. I am also currently try to be put on disability. Something that is not an easy thing to do for someone with hydrocephalus because Social Security does not see it as a disability.

  5. Catherine says:

    My Son Ben has just had his second shunt revision. His shunt was placed to relieve hydrocephalus from pneumococcal meningitis, which he contracted when he was nine months old back in England. At the time the US vaccinated babies against pneumococcal disease, the UK did not. One year later babies began to be vaccinated against pneumococcal infections.
    He had his first shunt revision at 5 yrs old then this one at 8 yrs old. He has severe literacy problems, and after the first shunt placement lost the use of his left arm, which returned gradually leaving him with muscular weakness. Since this current revision he apears very weak on hi left side again, but as usual is elated in his spirit. He charms those who know him and gets on so well with younger children. He is a very caring little boy. We pray for his future. So little seems to be out there about learning difficulties for hydrocephalus/shunt treated children, just depressing reviews of how poor their cognitive outcomes are.
    We are ever thankful for his survival, and my heart goes out to people who lose their children to hydrocephalus.

  6. amandagarzon says:

    Catherine, thank you for your emotional comment. But please don’t despair. There are definitely challenges that many individuals with hydrocephalus face but there are so many wonderful techniques and tools people use that assist them in living healthy, supported, and productive lives. We have resources on our website about learning difficulties and hydrocephalus. Check out these publications when you have time:

    http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf
    http://www.hydroassoc.org/docs/Social_Skills.pdf
    http://hydroassoc.org/docs/Learning%20Disabilities%20in%20Children%20with%20Hydrocephalus%20and%20Spina%20Bifida.pdf
    http://hydroassoc.org/docs/Nonverbal%20Learning%20Disorder%20Syndrome.pdf

    You can also access our Hydrocephalus Resource Library (http://www.hydroassoc.org/hydrocephalus-education-and-support/hydrocephalus-resource-library-3/) and search by keywords on topics you’re interested in learning more about. Finally, I really suggest you join our Facebook group (http://www.facebook.com/pages/Hydrocephalus-Association/97646191545?ref=mf) where we have a lot of lively conversation and consider attending a local support group, if there is one in your area, to meet other parents as well as children with hydrocephalus. As always, we’re here to answer any questions so please don’t hesitate to contact us.

  7. Pam Cain says:

    I was diagnosed with hydrocephalus as a baby, and have a shunt.
    Can anyone tell me if it is normal to shake your head periodically as though you have a tic.
    By the way I’m 47 and have 2 grown up boys who are both fine.

    Thanks

  8. NicNik says:

    Hi everyone! I am so delighted to find this page! I was diagnosed with slit-ventricle hydrocephalus at the age of 30, there are a few opinions on if I was born with it or a blood clot did damage. First, I was wanting to say that I am on disability for slit ventricle hydrocephalus, I have been since 2004-2005, so it is possible. I was approved my very first application, I had taken about six months and put together all my information, medical records and such, sent it all off with my application. Please don’t give up on that, it is possible! I have a very, very complicated case of hydrocephalus, maybe thats why? I have had 7 brain surgeries (placements, revisions, etc) in the last 6yrs, it seems that anything that can go wrong, does go wrong, I just stand behind my saying of “I have a brain disease, it doesn’t have me!” I try to be the most positive person I know and I will never stop trying to beat this! I have had the “holy grail” before with a shunt, so I know it’s possible and will achieve that again! The days recently have been really tough as I was over shunted, have “rigid” ventricles, yet still have high pressure. I am struggling right now with pain, nausea, dizziness & all the wonderful things that come with this, I WILL win in this! I will continue to look for a doctor to take my case, in there lies my question, who is a outstanding, knowledgable doctor that could help me? I have been to The Chairi Institute on Long Island and University of Utah, does anyone have ANY other suggestions? My case is very difficult & so complicated, I know there has to be someone out there that can help me get the life I deserve back! Thank you for reading this in advance, I have never reached out and I am glad I did! Much Love!

  9. Hilary says:

    This is for Stephanie Lang. You need to be persistent with Social Security. I was experiencing NPH symptoms that interfered with any type of working for 4 years before I was awarded SSDI. For most of that time, I was misdiagnosed with other causes of my symptoms. The thing about Social Security is they focus on how your symptoms affect your ability to do any work at all. Many people with hydro are able to work, so it is assessed case by case.

    My advice is to you and anyone else who is not able to work because of persistent hydro related problems is to get the best lawyer you can find who works only on SSDI cases. I went through all my appeals with one lawyer who did his best, but could only take the case so far, then switched to a specialty firm. Don’t be afraid if you have to appeal your case in US District Court, especially if the administrative law judge isn’t following SSA’s rules. I did this and it was referred back for a new hearing.

    I wish I could work, but the residual effects of untreated NPH don’t allow me to. The doctors didn’t recognize it for at least 6 years, and it took a toll. If it had been treated when I first had an MRI with enlarged ventricles, I probably would still be in the career I loved, hydro and all. It didn’t work out that way, so I’m glad to have finally received the disability benefits I earned. So keep up the fight!

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