[Sharyn]

My partner is 26 years old,

in the past year he has started having severe headaches, pressure in his head and behind his eyes, pain behind his eyes, collapsing when he laughs, constantly tired, sleep paralyisis, blurred and double vision, loss of co-ordination, loss of balance, constant dizzyness, loss of muscle strength, agressiveness and loss of perception to name a few

He had an MRI which shows he has enlarged ventricles and a narrowing of the passage between the third and fourth. He had ICP monitoring, but his intracranial pressure is normal.

The surgeon intern we spoke to said surgery would not help him, as some people have enlarged ventricles its just the way they are - but my partner has only had these symptoms come on in the past year and they are getting worse everyday.



When looking at cases online, the normal protocol for enlarged ventricles is to try and resolve the blockage and narrowing, but he has been told there is nothing surgically he can do??

I dont know if anyone has any experience with neurosurgery who can help me, but any views would be greatly appreciated

We are in the UK so we get our treatment free on the NHS, which means we dont have much choice in regards to second opinions unless we go private- but with him not working now this seems like an unlikely option



Thanks in advance

[Sharyn]

infact im not even sure if this should be in hydrocephalus? as hydrocephalus normally needs treatment?!

Im so clueless about all this, I do hope someone can shed some light

[jeff179120]

I'm not a doctor, but I do know that when I had an MRI and CT done here in Canada showing enlarged ventricles, they told me it was hydrocephalus. I never had ICP monitoring, so I can't say anything about that, but the headaches, vision problems, balance problems and lack of strength were all part of my symptoms. If there's increased pressure, maybe a shunt could help, but as I've said, I'm not a doctor, so I'm not sure. I think if I were you, I'd want to get a second opinion from a different neurologist and/or neurosurgeon. I have a VP shunt, but my balance is still off and I still get the headaches and balance problems. But after the shunt was in, I did have some dramatic improvement and I'm still better off now than I was before the shunt was put in. It might be worth a try to see if a neurosurgeon could do something. Jeff

[Rudy Parr]

Originally Posted by Sharyn

My partner is 26 years old,

in the past year he has started having severe headaches, pressure in his head and behind his eyes, pain behind his eyes, collapsing when he laughs, constantly tired, sleep paralyisis, blurred and double vision, loss of co-ordination, loss of balance, constant dizzyness, loss of muscle strength, agressiveness and loss of perception to name a few

He had an MRI which shows he has enlarged ventricles and a narrowing of the passage between the third and fourth. He had ICP monitoring, but his intracranial pressure is normal.

The surgeon intern we spoke to said surgery would not help him, as some people have enlarged ventricles its just the way they are - but my partner has only had these symptoms come on in the past year and they are getting worse everyday.



When looking at cases online, the normal protocol for enlarged ventricles is to try and resolve the blockage and narrowing, but he has been told there is nothing surgically he can do??

I dont know if anyone has any experience with neurosurgery who can help me, but any views would be greatly appreciated

We are in the UK so we get our treatment free on the NHS, which means we dont have much choice in regards to second opinions unless we go private- but with him not working now this seems like an unlikely option



Thanks in advance

Sounds like aqueductal stenosis. That's what strated my case of hydrocephlaus when I was 25 days old. he might need a shunt to control the ventricular size

[Sharyn]

Originally Posted by Rudy Parr

Sounds like aqueductal stenosis. That's what strated my case of hydrocephlaus when I was 25 days old. he might need a shunt to control the ventricular size

I have requested another appointment with the neurosurgeon, and have printed off lost of research ive found.

In the uk...operating on the brain doesnt seem to be a popular option unless life threatening, its so frustrating

thanks everyone

[peaches217]

Originally Posted by Sharyn

I have requested another appointment with the neurosurgeon, and have printed off lost of research ive found.

In the uk...operating on the brain doesnt seem to be a popular option unless life threatening, its so frustrating

thanks everyone

Hello,
I have the same problem. My ventricles are enlarged and the symptoms all started at once. After having a cisternogram done, they said there was no blockage or leak. They said I would have to live with it. They said I was probably born with it.. So I dont know what to do now. Also they found a clover leaf aneurysm on my basilar top artery measuring 8.5 and cant do surgery on it either, because it has 5 other arteries feeding into it. To dangerous to operate. One doctor told me i'm screwed..(JERK). I know how you feel and I'll keep you in my thoughts and prayers. Cheri

[bboberg]

I was diagnosed at 2 mo of age with a Dandy-Walker cyst in my 4th ventricle which led to hydrocephalus. I had my first shunt at 2 mo of age, my second at 11 mo, my third at 5 yrs, and then didn't need to be shunted again until I was 32. My first adult experience of hydrocephalus was scary, vomiting, gait, bad headaches, and I received my first adult shunt tap Halloween 2003 and was hospitalized over then next 4 days for a shunt revision. Since then, 2006 and 2009 have been hard on me surgically, as now I face sharp pains in my forehead and back of neck that are not migraine in nature at all. I have had 6 shunt adjustments in 5 weeks, 3 head CT's, and 2 head X-rays. I got my first shunt tap since my last hospitalization last July. I hope my surgeon can find out how to "fine tune" my shunt valve to the right setting, because my original setting at 12 showed overdrainage. I have been set at 15, 18,
20, 16, and now 14 to see if the pain will go away on its own. I'm getting another head CT on Thursday, and I hope it can show something that these past 5 weeks of agony could not.

[Jurie's mom]

My 15 year old daughter, Jurie, has Partial Agenesis of the Corpus Callosum (P-ACC). We knew she had dilated lateral ventricles, but we were just told that she has hydrocephalus. The neurologist has said she doesn't need a shunt. I am not so sure because she has all the classic hydrocephalus symptoms and has had them for years. She has had severe headaches and vomiting since she was around three years old, but the doctors never knew the reason why. She has also always been a little too aggressive and is getting even more so to her brothers and sister. She also had her eye pressures taken for the first time recently, and they were fairly high: right eye-28 mm Hg and left eye-25 mm Hg.

[TEC49]

Originally Posted by Sharyn

My partner is 26 years old,

in the past year he has started having severe headaches, pressure in his head and behind his eyes, pain behind his eyes, collapsing when he laughs, constantly tired, sleep paralyisis, blurred and double vision, loss of co-ordination, loss of balance, constant dizzyness, loss of muscle strength, agressiveness and loss of perception to name a few

He had an MRI which shows he has enlarged ventricles and a narrowing of the passage between the third and fourth. He had ICP monitoring, but his intracranial pressure is normal.

The surgeon intern we spoke to said surgery would not help him, as some people have enlarged ventricles its just the way they are - but my partner has only had these symptoms come on in the past year and they are getting worse everyday.



When looking at cases online, the normal protocol for enlarged ventricles is to try and resolve the blockage and narrowing, but he has been told there is nothing surgically he can do??

I dont know if anyone has any experience with neurosurgery who can help me, but any views would be greatly appreciated

We are in the UK so we get our treatment free on the NHS, which means we dont have much choice in regards to second opinions unless we go private- but with him not working now this seems like an unlikely option



Thanks in advance

Hi Sharyn,

I thought I was reading my symtoms as I read your post. I was diagnosed with enlarged ventricles in 1987. It wasn't until 2005 That things went into high gear. I had lost job after job because of my condition. If your partner is having these things happening now you need to get a second opinion. I was almost to late. My vision went out while I was driving on HI 35 in Austin TX at 70 miles per hour I started to see 8 lanes instead of the two going in my direction. God took over and got me off the road. Why am I telling you this? I didn't get any warning, it just happened! If those ventricles are enlarged and your partner is having the symtoms you mention I would get a second opinion right away. If you like I can give you my neurosurgeon's information he's in Texas, but maybe he can put you in contact with someone where you are. At any rate don't wait to long. Share my story with his doctor.

God Bless you both

TEC49

[kaprina0510]

SEE I HAVE A VP SHUNT IN MY HEAD. AND I'M STILL HAVING THE SAME PROBLEMS YOU ARE. STILL EVEN THOUGH I WAS DIAGNOSE WHEN I WAS 27YRS OLD. MY FOURTH VENTRICLE IS ENLARGED TOO. SO I KNOW WHAT IT FEELS LIKE. I'M HAVING ALOT OF PRESSURE DOWN MY SPINE. AROUND THE VALVE AND DOWN THE SHUNT TRACT. HAVING DOUBLE VISION TOO, HEADACHES TO THE 10TH POWER. CONSITENLY. FORGIVE MY SPELLING I HAVING PROBLEMS IN THAT TOO. TALK TO YOUR DOCTORS ABOUT A VP SHUNT.::I'M confused ALOT TOO.I FEEL YOUR PAIN TOO. BUT MOST OF ALL PRAY ABOUT IT. YOU WILL BE IN MY PRAYERS.