Research Matters: What We're Learning About Shunts

[@hilaryweiner893]

These presentations are very helpful. Improving shunt function is a worthy goal, but I am still waiting for the day shunts and ETVs are no longer necessary.

[@davidleavesley4925]

Hi Jenna. Your brief vod-cast updates reporting Hydrocephalus @/researchmatters is great. I for one appreciate how well you write and present these, ensuring they are accessible to a wider audience. While I am now located in Australia, I have lived in EU, UK, USA, China, India and Singapore! Identifying clinicians who understand something about NPH from the patients perspective is challenging and very rare. As the recipient of a VP Shunt about 10 years ago (as a 52 yo), that has both threatened my life (infection) and saved my life (manages NPH), I am grateful to those who seek/continue to improve clinical strategies to manage CSF disorders. Knowledge is strength, and gives one the power to manage effectively. I recognise that I am unlikely to have the opportunity to benefit from current R&D outcomes, but it is comforting to know that others will benefit in future. I encourage the Hydrocephalus Association/you to continue supporting this outreach activity!

[@popgoestheweasel95]

Jenna, what are the symptoms of a shunt infection? …pf

[@deborahlynnjohnson2474]

I am Deborahlynnjohnson. I was a fire fighter back in 1982, when I fell off a forty foot cliff. Because of that I started have headaches which I found out was really just pressure caused by spinal fluid buildup on my brain. All the people around me just thought I was just an angry person.

[@frankmorris4790]

I'm comin' 70 and scheduled for a shunt in January at Barrow Brain and Spine. As I find out more , I wonder if it's worth the pain and bother? I'm on a remote ranch @6500' , and I like it well enough to be buried here.

[@amandaallen9460]

I have had a shunt since I was born in 1988..I am on my 6th one currently.. coming up on 13 years surgery free as of July 1st this year if I can make it .

[@armilli1198]

Hope u continue from strength to strength

[@pandey_87_ji]

It seems to me that no trial or work is being done to end the dependence on shunt forever, because it took only 2 years to make the vaccine for Covid 19, but a century has been spent in making the medicine for hydroceplus, and Till now people are just waiting. They don't feel our pain with vp shunt😢😢😢

[@TinthiaClemant]

Thank you for these videos. ❤

[@laurelglasgow7445]

ThaNks for this info

[@jenniferpotts905]

Are they any research done on arrested hydrocephalus. It seems I run into not many knowing about the condition. There for lack of care.

[@kiearaandrews3990]

What if my shunt is terminating in my pelvis?

[@BrightwellVentures12]

Good job. Please, my baby was shunt on 7th February this year, he is 11 months and still can not sit and carry his head. What should I do?

[@HighImpact2019]

Hi, my daughter is two and has shunt. Since she is 1year old her head circumference is 53cm and she is very much delayed in her development. She is not even crawling yet but she gained head control- just recently. Even she is slow she is developing. The doctors and therapist are amazed. So please don't give up and let your baby try again and again. They are so strong, they will do it. But you also have to be alert because sometimes they just use your softcorner- I experienced this a lot. Put your trust in the almighty God. Jesus may touch your baby and heal him. God bless you and your family.

[@admffun509]

@@HighImpact2019 how I your baby doing now??

[@HighImpact2019]

@@admffun509 Hi Angeld Munoz, By Gods Grace my daughter is doing fine. Her hydrocephalus is in same condition and she us very much delayed in her development but she is progressing. All Glory to God. Thank you for asking

[@krystalwesley7043]

When diagnosed with hydrocephalus are you qualified to be on disability

[@susanekuhn9798]

Yes

[@krystalwesley7043]

Yes

[@krystalwesley7043]

Thank you

[@jamesepperson6087]

yes but be ready to make a lot of visits to the doctor and your @@krystalwesley7043