🙋Finding a Cure for Hydrocephalus

What is Hydrocephalus?

Hydrocephalus is a brain condition that is technically described as fluid building in the brain causing the head to swell up and cause permanent brain damage. There are several global associations dedicated to providing information on neurosurgeons, neurologists,health and shunt installment options and sponsors not willing to give up on this disease. Studies show that there isn`t any correlation between genetics and the disease. I was diagnosed with Hydrocephalus when I was an infant and have had a Ventriculo Peritoneal shunt ( it connects from the back of the right side if my head to my abdominal cavity) all of my life that drains CSF into my abdomen.

Shunt Systems

  • Ventriculo-atrial is Cerebral Spinal Fluid( CSF) being drained into the heart
  • Ventriculo- Pleural is a shunt surgically implicated into a ventricle and connected to the pleural cavity
  • Lumbo-peritoneal is located starting fro the lumbar spine to drained into the peritoneal cavity.

Community Network

There are several community networks local and online that you could advocate with and join WALKS to meet others that live with hydrocephalus. There is a picnic every summer in Missouri that gathers loving people into fellowship and great food.

The Hydrocephalus Association updates their website 2-3 times a month on campaigns, education about Hydrocephalus and what new sponsors have joined the movement.

References:

http://www.hydroassoc.org/category/ha-updates/

http://www.hydroassoc.org/cause-view/community-network/

http://www.hydroassoc.org/shunt-systems/

 

 

 

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18 thoughts on “🙋Finding a Cure for Hydrocephalus”

  1. I can’t imagine how challenging it has been! Still Hydrocephalus has got nothing on you. Your positive attitude would break a Richter scale. Keep on riding and inspiring others to appreciate the things they have.

    Liked by 1 person

      1. Yes – after they took out the brain tumor she had spinal fluid build up it wouldn’t drain her brain swelled they put it in, then later on realized they could have drained it and probably the scar tissue and inflamation would have gone down and she would not have needed the shunt. They wanted to put the external shunt in but she didn’t want that (can’t blame her) so they did the internal one. When they realized she didn’t need it anymore they turned it off as much as you can (it’s a magnetic one) but she really wanted it out because she has a small head and it hurts the back of her head etc, and they said they could not take it out because scar tissue would have grown over the tube etc and they felt the risk outweighed keeping it in, so she feels it was extraneous. I’m so sorry you have gone through having one, I know from her, that it is very challenging, I hope yours does not hurt as much as hers does, the doctors told her that it was unsual to hurt and she can feel it in her stomach even. xo

        Liked by 1 person

      2. True. I did but only in babies with water on the brain. I definitely did not know how debilitating it could be, or how despite what doctors say, you can feel it. The doctors also said her subsequent seizures had nothing to do with the shunt but we worked out they did, the shunt must have been taking too much or too little spinal fluid or in such a way that triggered seizures, she’d never had them before. The brain tumor was non cancerous and unlikely to come back, she’s very healthy and well aside having the constant pressure in her head of the shunt and pain in her chest/groin from the tubing. But prior to their turning it off, she had a-typical seizures, they put her on a butt-load of medication but we worked out it was the shunt. It’s incredible what doctors do NOT know. I realize they may care (‘may’) but they also don’t seem to understand how debilitating a shunt can be for a person and you’re so right, people don’t get it or want to know. Just so you know I care and any time you want to rant or talk I’m here. xo

        Liked by 1 person

      3. Dear Feathered Sleep, it gives me great hope to know that someone out there knows what a shunt feels like. I will be blogging more about this. I have talked to associations in Africa dedicated to the cause. I am studying psychology and social work in college so that I could help children that have Hydrocephalus. I just moved to Missouri from California and applied for Medicaid . No state sees my shunt as a disability but they do not understand that if I didn’t have it, I would be permanently I’ll or suffer a demise. I am still fighting to get the medical insurance I need. The ironic thing is that I have been dedicating myself to the medical field yet not many doctors are keen to my medical necessities. They only want to prescribe medication.

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      4. They don’t see a shunt as a disability? Good grief. That speaks volumes. I admire that you are helping others. Cali is so expensive I hope Missouri is an easier pace. That’s wrong that they don’t see how much it can impact your life. Your experience is the same as my friends, she was just told take Topomax etc, even though they never proved they were actual neurological seizures as no EEG showed them, but instead of considering the damage via the shunt they did what you said, just piled on the meds which left her half-out of it. Good luck with your studies. You’re a rare person you care about others enough to want to do something about it. I respect that very much. Did they ever tell you it would need replacing? They told my friend shunts usually last around ten years. It seems like a series of contradictions. On the one hand they ‘cannot’ take it out because it’s dangerous, on the other, it doesn’t last (what?) I wonder why kids get hydropcepalus? So much? You are so right though, everyone thinks meds are the answer WRONG. I wish you better health, if ever I can help (doubt I can, you know more than me!) I’m here my violet friend

        Liked by 1 person

      5. Thanks Feather, I want to make it known and yeh they told me I needed it replaced. I had an xray done 2 yrs ago and they said te shunt wasnt in it’s initial place anymore so they referred me to a neurosurgeon (which wad a waste of time) and he told me I didn’t need it replaced. I told them I was getting dizzy spells and I couldn’t eat the way I wanted to. They told me to take vitamins. He barely talked to me for 15 min after having me wait for an hour. The healthcare system is messed up, really. It is much cheaper in Missouri. Luckily, I am blessed to have my fianxe who has supported me a lot. If you find out anything else about the shunt let me know! 😊❤ xoxo my friend

        Liked by 1 person

  2. Dear fellow poet,
    Well, this is a new condition for me to read up on. I would love to hear more about what it feels like to live wth a shunt, have you written on this before? Never considered before the possibility that it was a distasteful experience, frankly. Only knew it saved lives, though like my brother-in-law’s implanted defibrillator, there are downsides to that as well. Like being shocked back to life every so often!

    Liked by 1 person

    1. Dear Pamela,

      Thanks for sharing interests in this post. I havent really written on it before but I will be writing on it more as I discover the affects of it in other people. I am an advocate with the Hydrocephalus Association and they are dedicated to sharing stories of those with cerebral shunts. Your relative’s defibrillator downsides are a shocker! I’ll have to write a post about that

      Liked by 1 person

    1. OMG, I never heard of that and I hope he remains in good health. What’s worse with me is that I could feel the shunt. It sucks that not many people know about Hydrocephalus but thousands of children die every year with it in Africa due to lack of medical supplies in some villages. Heartbreaking. I know some non profita that ate dedicated to spreading the word.

      Liked by 1 person

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