Hi, I was just wondering what the main symptoms of hydrocephalus were for someone who might be developing it later in life? It's a bit confusing trying to find information, when most people developed hydro from birth, or at a young age. I know that many of you here have lived with it all your life, and I'm sure that must be difficult.
Anyway...I had surgery for an Arachnoid Cyst over 10 years ago, (age 30) I had cyst fenestration and not a shunt. I was told the the CSF flow was blocked by the cyst, but when it was removed, they said it was normal again. I had an MRI 2 years ago, and they say the CSF flow was normal then, and the cyst hadn't regrown. But over the last few months, I've felt increased pressure in the back of my head (where the cyst had been), and increased dizziness and some pain. I was diagnosed with Occipital Neuralgia in late '06, and now the pain is mostly controlled by nerve blocks, but the pressure feeling and the constant dizziness has got worse recently. My Neurologist doesn't think it's in the head this time, so he's sending me for balance tests, because he thinks it is inner ear problems now. I asked for an MRI, but he wasn't going to do one until after I've had these balance tests.
So, can CSF flows/build-up show on an MRI? Or are there other tests for that? I hope it's something simple like inner-ear problems, but I don't have all the symptoms for that, just the pressure and dizziness...

~Jaime~

Hi:

The increase in pressure from csf build up can be seen with an mri catscan, spinal tap ad if you had a shunt they could see it in a shunt tap.

Never had a shunt...maybe I might need one this time...hope not!
Have just had balance tests, to see if it's anything else, but still waiting on results. Will see my Neuro next week. The next thing will probably be another MRI...

Went to see my Neurologist yesterday, and got the results of the balance tests, and they were what I thought they might be. There is no middle ear/vestibular problems, no infection or anything like that and my hearing is normal, and the report did say that the vertigo/balance problems are probably in the brain and not the inner ear! (I could have told them that! lol) My neurologist said it could be very mild hydrocephalus! But because I don't have all the symptoms, and they are not severe, (I just have the dizziness, nausea, some head pressure and some pain), he has decided to leave things alone for now, and hopes the cooler weather might help things. But he said if the symptoms get worse, then come back and he'll send me for an MRI. He didn't think I needed an MRI yet, although my last MRI was 15 months ago now. The symptoms aren't as bad as they were a month or 2 ago, but then we have had a very hot summer here in Australia, and the pressure seemed to be worse on a very hot day. Is it possible to have pressure changes that go with changes in the weather?

~Jaime~

Hey, Jaime.

You need to see a neuroSURGEON about this. A neurologist can't treat you for hydro, bottom line. He isn't trained to. That's the nsg's job.

It also sounds like your hydro is more than "mild" if you're having these symptoms, and if they're worsening, I think any reputable nsg would tell you surgery will be necessary sooner rather than later. Please get to a nsg right away.


Good luck!

LIZARD

My Neurologist is in contact with my original Neurosurgeon (both are at the same hospital), and will consult with him. But for now, they don't seem worried about it, considering I've never had any hydro symptoms for over 10 years after my cyst surgery, and these symptoms I have now are just recent. I can go back anytime if the symptoms worsen, and get an MRI fairly quickly. But for now, they have lessened a bit. Mild symptoms can be treated without surgery, so I'm told, unless they get worse. So, they won't do any surgery unless it's really necessary...and I hope it never comes to that, once is enough!
~Jaime~

I am new to this, I was wanting to talk to someone who has survived arachnoid cysts, how did you do it, how old are you and what has it been like?

Hi Irisheyes,
Well, my arachnoid cyst was discovered in mid '96. I was 30yo at the time (I am now 42yo.). I had surgery a few months later, and had fenestration of the cyst. For me, removing most of the cyst worked, and it hasn't reoccured since. Many people need shunts, but it seems I didn't need one at the time. I've had other associated problems like occipital neuralgia (nerve pain) from the surgery, and balance problems from having Dandy-Walker Syndrome Variant. But things have been mostly good since the cyst surgery, and I'm so glad I haven't had to have more surgery since.
But it all depends on whether the person gets the right treatment from a good specialist at the right time. Often doctors/neurologists/neurosurgeons don't take symptoms of arachnoid cysts seriously. Luckily I found a great Neurosurgeon the first time who was willing to operate...and all went well with the surgery!

~Jaime~

What were your symptoms and how was it diagnosed? I am searching for an answer to my problems after 6 months of being bounced around. I just found info on Normal Pressure Hydrocephalus on Wikipedia and it sounds really familiar. The thing that seems to hang the Drs up is that my symptoms are all episodic. I just found a description of Episodic Ataxia too. Honestly I am grasping at straws at this point. Anyway, any help would be appreciated.

Hi Lizzy,
My symptoms with the arachnoid cyst were mostly constant headaches, pressure feeling in the head, dizziness, weakness, vision and balance problems, but mostly I had a migraine-like headache that never went away. The arachnoid cyst was eventually diagnosed with an MRI. A recent MRI has seemed to rule out hydrocephalus, thankfully...
I haven't really been much help, but I hope you are able to find some answers soon. I think you need to find the right doctor, preferrably a good neurosurgeon, and to have an MRI.
~Jaime~