Communicating Hydro/Enlarged ventricles, 32, no symptoms

[JamieSue]

Hi,
First off I just want to say how terrific your community here is. I read through a bunch of info before posting and you have so many wonderful knowledgabe posts combined with emotional support - it's just great.

I have been diagnosed with "big" ventricles...at first they said "enlarged" but now the neurologist is even avoiding that term. Here's the whole story.

For the last year and half I occasionally got a hive like swelling under my left eye. It seemed like an allergy except that it only happened on the left. My regular doctor finally sent me to an ears/nose/throat guy. He found nothing but he wanted to be sure so he asked for a CT of my sinuses. In the mean time, he sent me to an allergist who determined I'm allergic to just about anything green (though I never really have symptoms) and he recommended that I take allergy medicine. I don't like taking medicine so he recommended I at least try a sinus rinse. I tried that and it was marvelous.... I never realized I had felt pressure under my eyes, but the nasal rinse once every other day or so makes me feel like a new woman. Also, the nasal rinse made the mysterious occasional swelling disappear.

In the meantime, the CT scan showed enlarged ventricles and the ENT sent me for an emergency MRI the very next day after getitng the radiology report. The MRI came back saying everything looks like communicating hydrocephalus. The ENT sent me to a nuerologist. She did clinical tests on me and the only one I wasn't great at was the tight-rope walking test. My balance has never been stellar and I was a little wobbly. Everything else was fine. She said to wait and get another MRI in 3 months. I've now done that and this MRI showed the exact same thing - enlarged ventricles consistent with communicating hydrocephelus. This time she said a bunch of things like "you'll probably be okay" and "you seem to be high functioning" and that freaked me out a little, which I told her. She said she didn't know what to say because she had never heard of a thirty something getting communicating hydrocephelus with no symptoms. She said the enlarged ventricles are probably something I've always had and then she asked a bunch of questions which implied my IQ is low...and actually, I did extremely well in school. I read very fast. It's very easy for me to learn new things. I'm a software engineer and I design and code even though I never studied that in school...it just kinda comes naturally and I've known a few people who have made comments about me being particularly bright (I'm not trying to sound arrogant, but just to say that I think my IQ is okay).
I feel terrific. I very occasionally get work/stress temple headaches, but not even so much so that I take anything for it. I've been dancing swing and tango for the last four years and while I can't do multiple amazing spins like a lot of dancers who have been dancing that long, I'd say my balance is better than the average guy off the street, and it's certainly not bad enough that any of my partners have noticed it (because since all this I have started to ask them).

So, this whole enlarged ventricles thing is freaking me out. The neurologist says she wants one more basline before she talks to a neurosurgeon because the neurosurgeon will certainly want to put in a shunt, but she doesn't really recommend it because I have no symptoms. She prefers the wait and see approach. Wait and See is pretty horrible, but I could deal with that. Unfortunately, all of this has happened a few weeks after I have told my job I am quiting to travel for a few years. I have agreed to code remotely for my employer, but my plans are to go to travel in south america...probably not the best place to be if I'm going to have some major brain event. So, that certainly adds to the stress of this whole matter.

I haven't really been able to find anything on the internet about people under 50 with large ventricles or even NPH or communicating hydrocephalus who aren't showing any symptoms. Anyone hear of that? I don't think this has affected my IQ, but I will admit I wouldn't be shocked to find that my brain is a bit different. I've certainly been described as 'marching to the beat of a different drummer' in my life so the idea that there is some physical cause of some of my personality traits wouldn't suprise me at all. That said, I wouldn't want to get rid of them either. :(

Sorry for the rant. Basically, I'm thoroughly confused and frustrated about the whole situation, so any related stories would greatly be appreciated. I also have photos of my MRI and copies of the radiology report if anyone thinks those would help.

And, I'm getting a second neurologist's opinion in July (when I return from hiking for a week in Peru...yet another activity I now worry about given possible brain things.)
Thanks for your time.
-JamieSue

[LIZARD]

((((((((((((((JamieSue))))))))))))))).

Welcome to our li'l corner of the Net! :D I hope you find some comfort and reassurance here. :)

I will say that I know literally thousands of folks with various types of hydro, and your situation is unusual, but I'm also wondering a couple of things: 1) if it's really hydro or just what's called "ventriculomegaly," meaning a benign situation of just having bigger ventricles than normal; or 2) that it may be a slowly-progressing case that may not even need a shunt anytime soon. Quite honestly, I don't think a neuro could make that call. It sounds like yours knows a fair amount about hydro, which is fortunate for you, as so many are utterly clueless, but don't let that get in the way of getting an opinion from a nsg because they overwhelmingly know more than neuros. Your neuro should leave that decision to you and not be the one to control who you see. A good nsg will be honest with you about whether or not surgery is necessary and won't be hasty to do it, which is what your neuro seems to think. I'm just a lifelong hydro patient who reads everything :o, but I know that neurologists have a rep for thinking they know sufficiently about things like hydro when they often will unfairly judge a patient's situation. That can mean trouble. Get a nsg to read your films and examine you and go from there. It's your right and your duty to yourself. :)


Good luck, and please write me anytime with any questions I can help you answer. :)


LIZARD :)

[Austinsmom]

Hi, and welcome
Just to help ease your mind a bit, some people have larger vents than others the size matters, yet some people have larger sized vents , and you said you have very little trouble, so it is probably been with you all your life and a neurosurgeon(NS), with you having no symptoms will probably also say just wait and see The NS may do a CT every other year to make sure there are no changes. I would think there would be no problem with travel, go enjoy your life, but first get a check by a neurosurgeon at a large teaching hospital just to make sure,Maybe askthe NS for a MRI to make sure everything else is OK.I would call and talk with the www.hydroassoc.org ask if they can send you some info. they are just great, and very helpful.
The hard part is in the knowing you may have a problem that is watched by a neurosurgeon, it weighs heavy on your mind, our hearts go out to you,:( if you need go to a support group to learn how to ease off the worry, no matter what you will be Ok and will be able to travel.
Hope this helps, keep us posted and come talk with us about any questions, this is a great group of people who are all here to help.
Hugs,
Deborah

[CathyE]

In case you didn’t notice my reply to canadianlistener, I said:

“Well, if my 1st NS is correct & I’ve had hydro for most or all of my life (which I believe is highly probable), I can understand my brain not wanting big changes made to it! Starting at age 50 (56 now).”

Meaning I was shunted for the 1st time at age 50 due to Communicating Hydrocephalus.

My shunt has helped my brain/memory recover a lot. Unfortunately I have difficulty being totally upright for extended periods of time and doing very much physical work and daily headaches of various intensity. So I am on LTD.
I was a systems analyst and boy did I struggle the last year and a half! (memory, headaches, balance/dizziness)
At times I would change one number and forget before I got to change the other number related to it! Other times I would hit my desk and lament to my co-workers “I can’t think!!!”.

So, I would say unless the Neurosurgeon can give you a very good reason to be shunted when you don’t have any symptoms,
don’t! Shunts are wonderful, but they can cause new problems. However, if you start getting headaches, eyesight changes, gait problems (unsteady or off balance or dizzy when walking), short term memory problems,… notify your NS (our short form for Neurosurgeon!) & he should do another Catscan or MRI.

Sometimes the pressure on the optic nerve is the first symptom and most people recommend seeing a Neuro Ophthalmologist? (not sure if I have the right name as I’ve only seen a regular Ophthalmologist ). And there are often no symptoms of this to warn you!

Try not to worry too much! But see what a NS has to say & how frequently he wants to see you. The Hydro Assoc. can suggest NS’s if you want to go that route, or maybe your Neurologist.

I did very well until I de-compensated.
Good luck.
Cathy

[JamieSue]

Hi,
Thanks for the replies. I really appreciate it. I did call the Hydro association and they put me in touch with their adult specialist. She said she has had a few cases of people like me who have hdyro and don't have symptoms. Out of those few, some have gotten symptoms over time and some never had sypmtoms or any treatment. It's at least a relief to know I'm not the only person out there like this and even if the odds aren't good it does give me some hope that I won't get any symptoms. She also mailed me a booklet about this kind of hydro in young and middle aged adults. I guess it's a fairly recent discovery tentatively named SHYMA. That was also terrific because giving me a term for it also gave me a way to find more information on it. And, she did give me some NS names to look into when I get back from Peru.

Again, thanks for the information. It has been really helpful. Also, after reading more and more about congential hydro in children and the elderly onset...wow. It seems there are a lot of difficult lives out there because of it and a lot of stories of strong individuals. I guess if things don't go my way, I'm still pretty pleased I've had 32 good years.
Anyway, thanks again. I'll check back in when I get back from Peru.
Take care,
JamieSue

[LIZARD]

Hey, JamieSue. :)

You got the right attitude, hon'. :) I think you have every reason to believe you could go a long time without any real problems, too, and even if some symptoms do crop up, they don't have to be severe. I have lived all my life with hydro and have actually seen my symptoms and issues get less significant over time. It may be in part because of a lower dose of med (for epilepsy) and because my mind isn't as taxed with fear and trying to keep up with so much, now that my son's autism is improving. :) I think that, under the circumstances I had back then, even with healthy kids, hydro would have made everything difficult because of my memory probs associated with the med I was on and all the problems I had with headaches, which, thank God, are nothing like they were then! So, it is possible to do very well over time and even get better once you have had some problems. Just something to bear in mind. ;)


LIZARD, married to a real-life Dilbert :D

[TNbrain]

Jamie Sue -
My situation is very similar to yours. I was diagnosed in Feb this year with communicating hydrocephalus caused by congenital aqueductal stenosis. I am also 32 and had no real symptoms. I didn't have headaches, gait problems or some of the other things one sees with hydrocephalus. My only symptom is that my reproductive hormones are very low - I am wanting to have another child. My son is almost 2 and I guess when I conceived him my pituitary was functioning better than it is now. The hydrocephalus is placing pressure on my hypothalamus and pituitary and causing it not to function. I was sent for the MRI because they suspected a tumor on my pituitary - no tumor was found but the hydrocephalus was -
So - that was my diagnosis in feb. Fast forward to April after many tests - I went to New York Cornell/Columbia and met with a wonderful neurosurgeon there and had an endoscopic third ventriculostomy done. I decided to have the surgery because my neurosurgeon has seen cases where left untreated for many years the brain can start to dislike the extra pressure and you'll end up with the symptoms of hydrocephlus. While I am young and in good physical shape I decided to go ahead and do the surgery. I go in 2 weeks for an MRI - 3 months after my surgery- to check on the hole that they made. Then I can finally pursue fertility treatments to have another baby. I can notice some subtle changes since my surgery - I am not nearly as exhausted at the end of the day and I can now sleep on my tummy without my head pounding - conicidence? maybe - but I think it has to do with the pressure in my head.
It is a very scary thing to live your life until 32 and all of a sudden be diagnosed with hydrocephalus - It certainly sent me into a tail spin. Find a good neurosurgeon - not a neurologist - and if you ever need to talk - I'm here and I understand exactly what you are going through.
Hope Peru was fabulous!

~ Lee

P.S. I did go see a neuro-opthalologist and failed my visual field test - the hydrocephalus was placing pressure on my optic nerves so that was another driving force for me to go ahead and do the surgery. That would be one specialist I would go to before you decide whether to do the surgery or not.

[sue skinner]

Hi, ive had normal pressure hydro for 15 years and it very gradually got worse dont no what caused it or were it came from, i was adamont i didn't want a shunt till last year when i developed bladder incontinence so bad i cried all the time i was black and blue from falling used a walking stick all the time and wheelchair on occasions. I was a teacher but had to give my jobup i'd gone from being so sporty annd energetic it was so frightening nobody told me anything about my condition i didnt no what was happening to my body or mind. Then i met my surgeon my miracle man as i call him he put a programmable shunt in, and WOW! what a new person i am running enoying my children who have nearly grown up, my tears now are tears of joy i live each day like it's a miracle 44 years old and can't stop acting like a 20year old. My 13year old daughter as she was 3 years ago was amazing she cooked cleaned changed beds washed helped me to the toilet out the bath picked me up when i fell over cleaned my mess up she was amazing i love her dearly. So what i mean to say is while your well stay as you are, you will no if and when you need to take action, just don't leave it as long as i did. Nothing to be scared off. ***

[Zubenelgenube]

Jamie :

My situation is not dissimilar. It looks like I have had hydro for many years (I am 50). I noticed a forgetfulness that was getting worse, but slowly (You have not noticed anything, and that is good). Two years ago, my first formal symptom was a balance disturbance, nausea, and a strange neck noise like squishing water. Also limbs were mildly numb.

A lumbar puncture revealed an overpressure, of 351 mm H2O. Normal is about half that.

Jamie. It might not be a bad idea to get a pressure measurement via lumbar puncture. If you are overpressured, you need to know, and you can make your decisions accordingly.

Best regards...

Zubenel