July 09 Update. Hydrocephalus / arachnoid cyst journey.

[thefugue48]

Jade, how are you at the moment?? You are one BRAVE girl! Take care, God Bless..

[slydawg221]

i was born with hydrocephalus. i've had a shunt since i was 2 or 3 weeks old and i always will have it.

[mechiefslapahobitch]

I had shunt blockage this morning..I just turned the bathroom faucet on so I could hear water running and then pushed really hard for a few minutes and it finally came out. A real bowl winder.

[HadynsTVdoc]

I hate shunt blockage, when it happens, you dont have much control of your body and headaches are insanely bad and you cant help but constantly be sick. I actually felt better while being rushed to hospital in an ambulance., as long as I'm laying back.

And wow, I, myself, told the nurses to kill me, I couldn't take it anymore but I fought to the end. I know exactly how you feel.

And you're so pretty :) x

[CJD731ify]

I have two VP shunts due to having Hydrocephalus . I still have headaches and was wondering what do you do when you have them. I have to go back this August for CT Scans, but they have to turn them computer chips off before doing so.

[kmkrazyk]

Thanks for sharing. My son is 3 and has had countless surgeries. Diagnosed at 6 months with hydro. We have gone 1 year without a revision (keeping fingers crossed) I appreciate you showing us what its like.

[dianezcool]

i just had my shunt put in 20 days ago april 27,2011, has anyone had a good outcome????

dianezcool@comcast.net

[dianezcool]

i just had my shunt put in 20 days ago april 27,2011, has anyone had a good outcome????

[AddyW123]

Hey!!

I have hydrocephalus, had since I was a baby and have a shunt. I also have a noncompliant ventricle syndrome where my ventricles can't expand and are small. I've suffered through 23 brain operations and have severe damage to my eyes. I can't look up nor can my eyes track together. I will be stuck with this issue forever. The symptoms you have are very similar to mine, have you discovered more as you've gotten older? I recently had a craineotomy which failed seeing as I have excruciating

[tsarvas]

I also have hydrocephalus and a cyst on my brain stem. I would like to keep in touch via email, because i don't know anyone with Hydrocephalus. My email address is

COOLCHIC128@hotmail.com. I have a lot I wanted to tell you, but the post was too long and it wasn't able to be posted. I hope that you will find time to email me and hopefully stay in touch. I don't know anyone with hydrocephalus, so it would mean a lot to me to keep in touch and to talk to you. I hope to hear from you.

Taryn Sarvas

[dianezcool]

@tsarvas i have just had my shunt put in april 27,2011 20 days ago i have hydrocephalus and so far so good if anyone else has had a good experience with the shunt placement i would like to hear from you as this is a scary journey...dianeluke10@comcast.­net

[afropuffz1]

Hey Great video. My daughter was born with hydrocephalus and I was absolutely terrified of the possiblity of her having to life with a shunt. She is 8 months old now and has had one shunt revision so far. her development has been spot on and the doctor said once she is 2 years old, if the shunt fails again ( which we know it will) he can do a endoscopic third ventricolosopy (sp??) and she will be shunt free. We are crossing our fingers that all will go well. Your videos have given me hope.

[alfaandomega11]

I have arachnoidal brain cysta, should i remove it? do yu feel any bettter?

[MrWriter2991]

thanks for posting this. When i found out about my arachnoid cyst, i was terrified. I searched for arachnoid cysts and found this. made me feel so much better. Thankyou x

[omargr15]

hi, last week we learned that my nephew has hydrocephalus a year, I would like to contact you and talk to you:)

[keferdizlierdogan]

hi i have aracnoidits in my spinal cord in the lower back doctor are saying no cure for this is very pain full and is wasting my mussle on my legs do you know any doctor has go experience about this please halp me

[uk8ter]

Bravo to you darling you are one tough chick...I have never had to deal with a problem that bad but I have been so sick that I wanted to die so dont you think for one second that you are not tough girl...because you are,just because the pain gets REALLY bad for a little while and you dont think yer gonna make it,thats just called a moment of weakness.The reason you are tough is because you deal with this constantly and for like 90% of it you have a great attitude THAT is why you are inspiring.

[mikee286]

I have hydrocephalus as well. Did it do any damage to your vision at all? As a result of my hydrocephalus the CSF pushed my brain foreward and it damaged the optic nerve now I am 70% blind

[tobybelchy]

@mikee286

Hi mike,

my eyesight was absolutely perfect, i had brilliant eyesight until my september 08 revision, i woke thinking the blurriness in my eye was from the vaseline they put on your eyes during surgery. The blurriness went away a bit, partly because it was infact vaseline, but my right eye has never been the same since and is now short sighted. My cyst is behind my right eye so it makes sense that thats to blame :(

Sorry about your circumstances :(

[slydawg221]

@mikee286 i have hydrocephalus too. i can see just fine out of my left eye but my right one is a lazy eye and its about as bad as both of yours.

[mikee286]

@slydawg221 I have abour 20-60 in my right eye and 20-80 in left eye from nerve damage caused by the hydrocephalus when I was born and my eyes twitch uncontrollably. They won't let me drive because of it but I get around just fine I just can't read the names of streets and things like that. Is yours caused by nerve damage too?

[slydawg221]

@mikee286 i'm not sure. i don't know if i have nerve damage.

[bonesgirl1978]

@tobybelchy Are you still shunt free today? Are your symptoms any better? God Bless you!

[tobybelchy]

@bonesgirl1978

Hey, im afraid im not shunt free anymore. That procedure only lasted me 3 weeks and then it failed, the pathways blocked up and the pressure built in my head like crazy. So then had a whole lot of operations after it.

Had two in July, one to be put back onto an external shunt, then another op to put back in a proper shunt.

Then in oct, i had icp monitoring. Nov -programmable shunt placed. Dec-infection, so had to be externalised. Then another shunt put back in. :(

Take care x

[lizzejelly]

You sacred me so much! I myself have a very large arachnoid cyst too (mine is about the size of a grapefruit in the same area on the opposite side of yours). I have a shut too. I remember when I got my shunt put in (December 2007) I couldn't stand up or sit up for 3 weeks because being vertical gave me headaches, made me vomit, and actually gave me a fever. I thought I would never be able to walk ever again. I'm terrified for when they have to replace my shunt or take it out.

[lizzejelly]

@lizzejelly I already have seizures so that part doesn't scare me too badly, but I do not want the headaches. For the first twelve years of my life I had extremely painful headaches almost every day. My entire family on both sides suffer from migranes so nothing was done about it. Then one summer I had a seizure which led to a CT which led to an MRI which showed my giant arachnoid cyst. I still get headaches but not very often and they are no where near as terrible. Cysts suck!

[mbballw1]

what is the name of the artist that you use in your other videos...sound like christian r and b or something?

[topherlinc]

I am 22 years old and i have felt like i have had liquid in my head since i have been 17. It is really bad now, i get headaches every single day, my nervous system is all messed up, cant stop shaking. Mostly the left side of my head hurts the worst, but it goes around my head too. The back of my head is really sensitive to the touch now, almost hurts. I made an appointment on the 14th of May with a Neurologist, i will request an MRI. Hopefully it is just liquid, not a tumor =/ I am scared lol

[tharcourt100]

Thank you for sharing your story. My baby boy just turned one and has had two sets of surgery so far. He had a craniotomy (sp) to fenestrate his cysts and a shunt inserted at about 5 months (when the cysts were found) and then a revision at 7 months. All had had been going well. He's happy and developing fine, but unfortunately his head size has just jumped again. He's got another MRI next week and, most likely, another op after that, Good luck and I hope you turn out to be shunt independent! x

[stavrophotography]

You're a bright beautiful,incredible woman. I am so thankful to have found your page. I still have my shunt. But am told I am no longer hydrocephalic. If you ever feel alone. Please don't hesitate to send me a message

[gingergpg]

thanks for the videos... my op is in january and i'm quite nervous

Wish me luck

[Gummid777]

Thanks for the video its been 24 years since my last op. So I pray this will be your last

[sparkydannyman]

I have hydrocephalus and crap. It's not really fair but alot of things in the world really aren't fair. I haven't met other people with hydrocephalus so it is cool to see this. I've had 5 operations and almost died a couple times, but you definitely couldn't tell. Check out my page and you might be able to see it in my eyes. Peace!

[dayofthedead55]

yup This Sickness Can Kill you sadly umm is it Ture That you can Pass This On to ur Kids ( if you have any)

[lonesnipe]

alright jade, Mark here just wanted to wish you luck and to ask "how is your hair doing" lol soon ill be in your shoes because i am going in for icp monitoring and i might need a shunt replacement as well i haven't got a cyst but i do have hydrocephalus so get back to me and tell me how things went on

ciao for now

Mark ;)

[dylandior123]

I'm glad your OK.

I can't have MRI scans anymore because the shunt I've had put in since end of Feb 09 is programmable.

[TroyaE117]

Best wishes.

[JohnnySoul09]

I went to school with a guy that had the condition....I think he's okay.

You're a gorgeous looking girl and it's not fair that this has happened for you. Good luck brave and gorgeous girl. x

[tobybelchy]

I do hope he is ok :)

&& that you are too.

aww thank you, thats very nice of you. xx

[metallic1981]

Touch wood, I haven't had any problems with my shunt, though truth be told, I have had 2, one when I was a baby that got infected, and the one I have now which has been in me for the better part 17 - 18 years.

Talking about having to have your hair shaved off in areas reminded me of having most of my hair shaved off around the area where my shunt is, when I had mine inserted.

[tobybelchy]

wow, youre lucky :) may you continue to have success with your shunt :)

blimey you replied quickly, the video has only been on here for about 5 minutes. lol :)