Just diagnosed with hydrocephalus! Help!
 

I am a 33 years old. I was in a car accident a few weeks ago and about five days after the accident I had trouble speaking, putting papers in alphabetical order or number order, and trouble hearing out of my left ear. I went to the doctor and he ordered a ct scan and said I had severe hydrocephalus. He said it looks like I've had it for awhile but that the accident brought on my symptoms. I've had an MRI but the neuro said he was not in a rush to put in a shunt. He put me on a medication called Diamox. Does anyone else take that? My symptoms started to improve before the medicine and the medicine has helped them improve even more, but I'm not where I was. Now, I think even with the medication I have leveled off and I am not improving anymore. So far, what I have read on here about shunts is not good. It seems like I'll be better off without one. Any opinions on that? I need some feedback all this waiting for answers from the doctors is inhumane.

Any information will be appreciated.

Thanks,
Miche

:welcome_sign: Hello Miche, and welcome to NeuroTalk.

I don't have the same medical condition as you do, but I'm sure some-one from this forum will be along soon to give you a bit of information.

In the meantime, I wondered if you've seen the useful websites that are up above this post, in the stickied threads? There are 2 other links up there as well that might be helpful.

Please let any of us know if there's anything we can help you with. :)

Hiya,
Im so sorry to hear that you've been diagnosed with severe hydro. :(
But welcome to our little family on here. We will help you with as much as we can :)

As for the shunt issue, you would not be better off without one. You dont want the fluid inside your head to increase, having hydro means your brian is underpressure as it is. Having a shunt placed with decrease the pressure and help you to feel better.
Of course there is a catch but i guarantee the benefits outweigh the negatives of a shunt.
A shunt is prone to malfunction, blockage, infection etc.
But if it were to malfunction/ block then you would be in the situation that you are in now, it means the shunt would not work, therefore leave the fluid to accumulate in your head.
The chances of infection arent very big but that doesnt mean they are rare, but its treatable with antibiotics.
&& of course there is complications in surgery, as with any surgery.

I had my shunt fitted at 13 months old and revised at 4 years old and was absolutely care free until i was almost 17 years old, where my shunt got a bit old and clogged up which needed replacing. 9 month later and here we are today, 2 weeks ago, my shunt packed itself in and so i had it removed and had a craniotomy and fenestration done instead.
This now means im shunt free and new pathways in my head have been made to drain the fluid. I should be feeling better, but to be honest, all i've had since are headaches. I would prefer to go back to a shunt.

Please dont be put off by the stories on these forums, remember most people come looking for answers on here when something is going wrong. Just think of the amount of people who have had a successful life following shunt surgery :)

Good luck and please dont hesitate to get in touch x :grouphug:

http://i489.photobucket.com/albums/r...welcomecat.gif

Hello Miche, and welcome to NeuroTalk! We're so glad you found us! :)

This is such a nice place with lots of friendly, caring, and helpful people. :)

Below is a link to the hydrocephalus forum, if you haven't found it already:

http://neurotalk.psychcentral.com/forum14.html

[QUOTE=jadiee-x;533494]Hiya,
Im so sorry to hear that you've been diagnosed with severe hydro. :(
But welcome to our little family on here. We will help you with as much as we can :)

As for the shunt issue, you would not be better off without one. You dont want the fluid inside your head to increase, having hydro means your brian is underpressure as it is. Having a shunt placed with decrease the pressure and help you to feel better.
Of course there is a catch but i guarantee the benefits outweigh the negatives of a shunt.
A shunt is prone to malfunction, blockage, infection etc.
But if it were to malfunction/ block then you would be in the situation that you are in now, it means the shunt would not work, therefore leave the fluid to accumulate in your head.
The chances of infection arent very big but that doesnt mean they are rare, but its treatable with antibiotics.
&& of course there is complications in surgery, as with any surgery.

I had my shunt fitted at 13 months old and revised at 4 years old and was absolutely care free until i was almost 17 years old, where my shunt got a bit old and clogged up which needed replacing. 9 month later and here we are today, 2 weeks ago, my shunt packed itself in and so i had it removed and had a craniotomy and fenestration done instead.
This now means im shunt free and new pathways in my head have been made to drain the fluid. I should be feeling better, but to be honest, all i've had since are headaches. I would prefer to go back to a shunt.

Please dont be put off by the stories on these forums, remember most people come looking for answers on here when something is going wrong. Just think of the amount of people who have had a successful life following shunt surgery :)

Good luck and please dont hesitate to get in touch x :grouphug:[/QUOTE



Thank you for your advice. I have to say some of the stories I read on here had me a little worried. I read yours and I'm so sorry for all that you've had to go through. I had already started praying for you before you sent me a message.
I have had headaches all of my life but as I've gotten older the intensity and duration has lessened, but I've never had a headache like the ones described on here. Not to mention, every other symptom that was mentioned.
I was encouraged to learned that having children may not effect the shunt if I get one or if I have children they can be healthy without hydrocephalus. I've read conflicting things about it though. Some websites say it's hereditary some say it's not. I was not born with it or as far as I know I wasn't so maybe that's the difference. I don't know. Anyway, thank you for your advice and kind words. Good luck to you!!:D

thank you thats very kind of you :)

The shunt placement will not affect having children, many have had children without a single problem, my neurosurgeon also confirmed this for me. :)
&& hydro is NOT hereditory, i can say that much. Its complete chance of whether a baby will be born with it, 1-2 in every 1000 births.

good luck to you and your decision.:grouphug:

Hi Miche, Sorry about what you are going through.* I just lost 5 min of typing.* I don;t know how to get it back. To much to fast. I just turned 50 and had my shunt nearly 3 years. Keeping it short, checkout my story and I'll be in touch.* There is hope and a light at the end of the tunel, at least 2+ and counting.* God Bless You.

When you sign in to NeuroTalk TEC49, if you tick the box that says "remember me", you can usually retrieve lost posts by using the 'back' arrow at the top left of the page.

If you're using Firefox, you can also retrieve your post by going to the top left of the page and clicking history. This will bring up every page you've used recently. I don't know if the same thing works on IE because I don't use that browser, but it wouln't hurt to check.

I know these options have helped me find posts I'd thought were lost on many occassions. Good luck, and I hope you find the one you lost.

Miche,
Number one thing you have to realize most people here are having complications and looking for answers. The millions of hydro peeps that live nearly normal lives don't have the need to reach out for help and support like when we are having complications.

If you chech out my blog I have alot of different links to hydr support sites and different shunt types.

As hydrocephalus progress it becomes lees of an option of weath you want a shunt. It becomes more of a quality of life issue.

I am susprised you are not having issues with controling your bladder. That is usually one of the first systems after a head injury.

There is also another procedure done but I knoe little about it besides a shunt which is called an ETV. Only certain types of hydro people are able to get this.

Please come check out my blog and I hope you find some information that may help.

http://pepperknowsbest.blogspot.com/

PS
 

WOW!!! I should have done spell check...

Greetings, I had a VP shunt put in to control the hydro which was caused by Chiari Malformation. The shunt has done wonders for controlling symptoms and have not had any. However, my neurologist says that my double vision and epilepsy has been caused from the shunt putting too much pressure on the brain. Soon after the shunt surgery, I experienced severe short and long term memory for about 9 months, some long term is still coming back. But this is me, it could be different for you since all bodies respond differently. And there are the tradeoffs, I no longer have the severe headaches.

The doctor that did the surgery is named Noel Tulipan associated with Vanderbilt hospital here in Nashville. He is considered the world leader in shunt surgery, so might be worth looking up if you can.

Peace,
David

hello,
i was diagnosed with hydrocephalus also. I dont have a shunt yet.
I will find out tomorrow whats going on and why they decided not to do the shunt. My ventricles are all enlarged. I hear the shunt helps a lot of people. So dont be afraid. It's better than letting all the fluid build up in your brain. Good luck to you and let us know what your neuro says.
Cheri

How old are you?

Putting a famous face to Hydro... Rev. Billy Graham has hydrocephalus.

His developed in his later years but I thought it might give you someone to relat to.

When it comes to getting a shunt or not it is usually to improve your quality of life. If you can live with the systems of the hydro it may not be what you need. I support trying other options. But most of us need the shunt not just to help a headache. And everyone is different with different systems. No 2 hydro peeps are the same.

enlarged ventricles
 

Hi I'm a 47 year old woman. I have hydrocephalus but they say no shunt. I have to go to cleveland clinic soon for a second opinion. My ventricles are all enlarged but they say no leakage? I have all the symptoms that comes with it though. Also found out I have an aneurysm size 7mm on my basilar artery tip. Gonna have an angiogram done next week for that. Any one else out there having coiling or clipping done for a basilar tip annie?
Cheri

Diagnosed w/Hydro
 

II have the same condition, I had 2 surgeries before having a shunt put in, now at least the headaches have eased.

Hello everybody. I am so glad that I found this wonderful website. I was diagnosed recently with mild hydrocephalus. Few months ago, after a transphenoidal surgery to remove a tumor, things got complicated with a CSF Leak, then with a spinal meningities. After almost a month in the hospital I was released. Headached never went away, neither the CSF leak. I decided to look for second opinions which provided me with the news that due the the meningities contracted earlier, I had hydrocephalus. One Neuro Surgeon didn't care too much about it and propossed to see me in 6 months. The other neuro surgeon suggested me to get a Shunt. A neurologist that I also saw, confirm the mild hydrocephalus.
My question to all of you is if I should go for the Shunt Surgery or not. I have read many reports and data about the surgery, the complications, but if I don't do it, what can happen? If any of you had the surgery, would you be better now without doing it? I am confused and very concerned. Thanks for your time.