IVH/Hydrocephalus

[Mom2one]

My daughter is 14 months old.  She was born 9 wks premature, and suffered a bilateral grade III IVH.  She had lumbar taps for a few weeks while she was in the NICU after she was born.  We began seeing a neurosurgeon when she came home at 2 months.  Her ventricles enlarged, and developed hydrocephalus.  She had serial ultrasounds and periodic MRI's.  In April, the surgeon said that "if it was his child, he would definitely place a shunt".  I do not profess to be a doctor, and I absolutely recognize the value of shunts, but I've done a lot of reading about potential problems associated.  I read about the ventriculomegaly possibly being due to atrophic dilation, and may not be helped by a shunt.  We saw another surgeon in May who suggested waiting on the shunt.  This summer we saw a neuro-opthamologist who saw absolutely no evidence of pressure on the optic nerve.  Her last MRI in the summer was stable.  My daughter has had three appointments cancelled by the surgeon's office because he was called in to surgery, which, of course we understand, but we've asked for at least phone consults, but have not gotten one yet.  My daughter is meeting or exceeding all of her milestones.  All of the developmental specialists say that she is doing phenomenally well.  I worry sick about her because the prognosis I was given for her at her birth was grim.  Is it possible that a child can recover so well from such a traumatic insult to the brain, and even live with the ventriculomegaly and not have a shunt?  I can't thank you enough for you help.  This service is a blessing!

[CCF-Neuro-M.D.-PW]

Children fortunately can bounce back from seemingly serious neurological illness and do very well. A major consideration in doing this kind of surgery depends on how well the child is doing, and your seems to be progressing. If there was increasing pressure/hydrocephalus this would probably not be the case. In non-communicating hydrocephalus, ventricular system is blocked by a visible mass such as a tumor. In communicating hydrocephalus there is no visible mass, but increased pressure is caused by, for instance blood clogging up all the small draining holes. Sometimes the holes can clear up and there may be residual tissue loss and ventricular dilatation but no increased pressure. This can be tested for by inserting a pressure probe in to the ventriclebut unfortunately this is invasive - if a surgical procedure is attemped, this could be tested for first before a shunt is inserted. Otherwise it is appropraite to follow clinically as you are doing. It is important to follow closely with your doctors, have a good pediatric neurologist following who can make any adjustemtns as needed.

[RoseTabor]

Hi your situation is a little differant then mine but I am 26 and I was born with Hydrocephalus it was not discovered until I was 24.  Since the Hydro was so advanced by then it has been very difficult to control I am getting ready for my 10th surgery this Wednesday.  I would strongly suggest that if your neurosurgeons recommend a shunt to do it ! I am not a doctor I am speaking from personal expieriance and I know that the last 2 years of my life have been a nightmare because the Hydro wasn't treated earlier in my life.  I know it's scary but shunt placements are rather simple.  I didn't have any problems with my Hydro when I was a child I developed normally  went thru school and my teenage years fine I didn't start showing symptoms until my early 20's.  I know a shunt earlier in my life would have eleviated alot of pain and surgeries.  

                     Best Wishes
                        Rose

[mtchina]

What tests are needed to find Hydrocephalus??  I'm having really strange symptoms.  I'll post the following.  Sorry it's so long.  I've been posting this everywhere trying to get some help.  Am scheduled for an MRA next week.  Condition getting worse:-(

Please help! 30 year old male, US born, currently living in China. It has been almost two months since these strange, almost unbearable, symptoms suddenly appeared. They are testing my career, my marriage, and my sanity.

In early October I woke up one day (regular night¡¦s sleep) with a really stiff neck. Didn¡¦t think much of it, except that maybe I slept on it wrong. Tried to shake it off and get through the day. Following morning woke up with a mild headache (over the eyes and into the right side above the ear), and even worse neck pain. The pain was more pressure than throbbing. This continued, non-stop! A few days later, sick of feeling, well¡Ksick, I decided to go out with friends. Had a few beers, nothing out of the ordinary, and woke up the next morning with a horrible migraine. I began vomiting for the next few hours, finally could take took a short nap and awoke with that same mild pressure headache and neck pain, but no more vomiting. Went to the doctor the following day and explained everything. Told him I have bad sinuses and he prescribed an antibiotic for a sinus infection?? This didn¡¦t help at all! Then, the lightheadedness began!! Ugh, this was even worse than the damn headache. Kind of like a floating, on a ship, foggy head feeling¡Kreally weird. Once again, let me stress, this never subsided! Woke up with the headache, lightheadedness and neck pain and went to sleep with it. Funny thing though, didn¡¦t usually wake up in the middle of the night with pain (only when my eyes first open in the morning). Was really tender at base of skull, mostly left side. Pressing on this region made symptoms worse, I thought. Most recent neurologist said it could be occipital neurologia. He gave me a nerve block. Didn¡¦t seem to help at all. Next day I was on a plane back to China, so it was tough to tell, really a mess knowing that things were not getting better and that I was returning to work in China without a true diagnosis.

Flash forward to today, almost two months later and the same symptoms continue, except that the headaches are always in the morning and now usually go away after a little while, only to be replaced by horrible lightheadedness, stiff neck (tenderness has subsided) and nausea. A definite decline as the worsening symptoms are really scaring the hell out of me! About a month ago I began having shooting, nerve-like pain up to the top of my head where it literally feels hot to the touch. This usually happens after an hour or two into the day, after the headache has gone down. Then this crazy shooting, tingling pain on the scalp, then the lightheadedness comes on with, of course, nausea. That¡¦s the order and it¡¦s unrelenting until I go to bed. Laying down or standing up does NOT make anything particularly better. Moving at work constantly, though, does increase the lightheadedness and nausea. Docs said it could be a ¡§stuck migraine,¡¨ which I highly doubt, seeing that the headache seems to be only a small part of the problem. Never a fever since all this began. Take a few meds., listed at the end of this rambling, desperate letter.

I¡¦ve left out lots of information with doctors, neurologists and others. I¡¦ll list the tests and results at the end. I¡¦ve ruled out environmental factors (I think) because I lived in China for two months before this all started. Also flew back to the States for a couple of weeks for tests and no let up while home. I¡¦m a fourth grade teacher and am really struggling here. Any help, advice or possible diagnosis would really help. I feel like this will never end. I can¡¦t believe pain like this can be constant, never letting up, and doctors can¡¦t seem to find what¡¦s wrong?! Can something last two months non-stop, and not be serious?? Getting worried that the doctors will never figure it outƒ¼

Doctors Seen
*Family Physician here in China (from California)
*Five Neurologists (most in the States)
*Four Neurosurgeons (two here in China, two in States)
*Chiropractor

Tests Done
*Brain MRI w/contrast in China revealed a possible brain lesion
*Brain MRI w/ contrast in States (much higher quality) revealed no brain lesion, but normal abnormality (what is that?), doctors not worried
*Chest X-Ray ¡V normal
*Neck X-Ray ¡V Chiropractor thought top vertebrae might be a little close to base of skull, no relief during adjustments, stretching. He ruled out a pinched nerve.
*Neck MRI ¡V normal (received info. over the phone, they said I was moving a bit, some parts a bad scan)
*audio testing ¡V normal
*vestibular testing ¡V normal
testing ¡V normal
*tors did not see evidence of intercranial pressure, but the location of my ¡§strange abnormal abnormality¡¨ is where the docs said my spinal fluid is ¡§formed.¡¨

Medication Taken
*over the counter pain meds ¡V don¡¦t even touch this pain - discontinued
*muscle relaxers ¡V no relief ¡V discontinued
*prescription pain meds ¡V very little relief ¡V discontinued ¡V except..
*Oxycondin ¡V this is the ONLY pain med that helps a little ¡V still taking, but only a half dose of 5mg with 325mg of aceptimophen (sp.?) ¡V I know, I know¡K.addictive¡Ktrying not to abuse but the only thing that worksƒ¼
*Nortriptyline ¡V anti-depressant doc said is used for chronic pain ¡V lasted five days but stopped taking after insomnia (reverse from danger of making drowsy?) and sores suddenly appearing in my mouth
*Valium ¡V taken only a couple of times when I was flying ¡V discontinued
**Only taking the Oxycontin now (half dose, I think very small compared to what I¡¦ve read) and my usual Lipitor for mildly high cholesterol, 10mg

[Spram]

A related discussion, Hydro, but are these the symptoms of overpressure...? was started.