headaches/vomiting in child with shunt when CT scans are normal

[Amy]

My son, who is now nearly 4 years old, had surgery in May 1998 to remove a juvenile pilocytic astrocytoma from midlevel on his cerebellum.  Following surgery, although his fourth ventricle was no longer obstructed, he again developed hydrocephalus.  The surgeon felt that certain proteins produced by the tumor may have clogged the reabsorption areas.  A low pressure v.p. shunt was installed to address the problem.

My son was fine until April of this year when he suddenly developed headache and vomitting spells.  He had four CT scans on different occasions and all appeared normal.  (His ventricles are slit like.)  When the doctors pump the shunt's reservoir the shunt seems to function fine.  Neurological test were normal and opthomalogical tests were normal.

The headaches, which may or may not be accompanied by vomiting, tend to occur in the evening or after winding down from physical activity.  They may last from an hour to a few hours during which time he usually wants to lie down and may fall asleep.  Only once has he had one first thing in the morning.  They seem to come in a monthly cycle - sick on and off for a week to two weeks,  no problems for a few weeks, then they come back again.  He usually says the pain is at the very top of his head and it tends to come on fairly quickly.  When he's in a headaches period, he will have one every few days.  Sometimes he throws up once and is fine after that, other times he may throw up several times.

His neurosurgeon doesn't know what's causing the headaches but doesn't think it's the shunt.  My son  saw a ped. neurologist who said the headaches were nothing to worry about and he wouldn't do any tests or prescribe anything unless they got much worse.

Needless to say, I'm still worried.  I still think that with the

[nickirwa]

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[Laurie]

I just read Amy's story about her son and I am a mother of a 17 year old son who has had hydrocephalus since birth, discovered at 4 months.  I am fortunate he is otherwise a normally funcitoning teenager.  I have seen it all when it comes to shunt revisions, infections and problems.  My son was told for 4 years his headaches and nausea were "all in his head" by the neurosurgeons and his ventricles were slit like, better than they had ever looked acording to the Doctor.  After moving to another state and thus becoming involved with another neurosurgeon because of continuing problems with headaches and nausea especially after activity or being up all day, a different shunt to raise his pressure was inserted and I saw within 3 weeks a different child, he was able to hike for the first time, play basketball without getting sick, laugh and feel like a "normal kid".  I would say don't give up, it sounds like your son as well is suffering from low pressure.  The Doctors don't like to operate for much else than large ventricles showing a malfunction.  Ask about the new programable valve shunt.  It has worked for my son for the first time in many years.  ***@****

[CCF Neuro[P] MD, RPS]

Thank you for your comment.

CCF Neuro MD

[Ronnie]

Dear Amy,

My son has Dandy-Walker Syndrome. He recently got hit on his neck and his shunt broke. Since his revision, he has constant headaches. I'v e read the responses to you and I wonder if He has too low pressure in his cyst (6-7).

[CCF Neuro[P] MD, RPS]

Thanks for your comment.

CCF Neuro MD

[Stacy Hansen]

Amy,
I don't know if this will help, but I was diagnoised with Hydrocephalus Aquaductal Steneosis almost four years ago at the age of 31.  I've had approx. 25  operating procedures.
My neurosurgeon had me have several CT and MRI's, but what wasn't done is one when the symptoms were happening.  My shunt was tapped off too (several times) and found to be fine AT THAT TIME.
I had a CT done when the symptoms were happening and there it was, my ventriciles were huge - my shunt had failed again.  (Slit ventricles aren't good.  Maybe the valve is draining off too much fluid?)
Come to find out, the obstruction was based on my CSF fluid draining so slow that it was (proteins)crystalizing at the distal end of my shunt into my stomach and this would cause periodic hydrocephalus.
After this you'd think I'd be fixed, but I wasn't.  The distal end was moved to my heart and a third ventriculostomy was done.  Unfortunately, this was draining off too much CSF and causing bad, bad side effects.  Lot's more happened, but I finally found a doctor thru the Hydrocephalus Assoc. in San Francisco.  His name is Dr. Samuel Ciricillo.  TERRIFIC doctor and office.  
He externalized my shunt and redid the third ventriculostomy AND removed the shunt.  I'm still sick, but better then I was.  I could tell you more, but the only thing I really wanted you to know was to have a CT or MRI done when he has his symptoms and about the crystallization of fluid causing "periodic" hydrocephalus - which fooled alot of doctors.  And, of course, Dr. Ciricillo, Hydrocephalus Association and NOT TO GIVE UP!  
GOOD LUCK!  There is help out there, keep searching.  At least your kid can tell you what he feels.  I feel for the babies with this that can't

[CCF Neuro[P] MD, RPS]

Thanks for your comments.

CCF Neuro MD

[Bethany]

Dear Amy,

I am very sorry to hear that you're son is doing so poorly.  I also have a shunt, so I do know some of what he is experiencing.  The headaches he is having sound like a classic low pressure headache that is caused by the shunt draining too much fluid off.  A headache with similar symptoms can also occur from the pressures in the head changing very frequently. My shunt was inserted because I have a disease called Pseudotumor Cerebri, and it is common for someone with this disease to have a shunt.  Conseqeuntly, I know of several people you could talk to who have had similar headaches to what your son is experiencing.  If you would like to know where you can contact these people please feel free to email me at ***@****.

[Amy]

Dear Amy-I have a shunt for hydrocephalus. I have had six revisions in four yrs due to complications. Once for overdrainage, which caused such severe pain with activity, and vomiting. It got to the point I couldnt stand up well anymore. It turned out the valve was not working right, which he did not know until surgery when he looked at it. The initial scans were normal. I guess its hard to tell in a young child, but does he feel better lying down. I would imagine if it persists your nsgn will take a look at the shunt. Best of luck.

[CCF Neuro[P] MD, RPS]

Thanks for your comments.

Sincerely,

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

Dear Amy:

There is an article by Abbott et al. in Neurosurgery 28:72-77, 1991.  The options cited in this paper for headache associated with small ventricles is shunt revisiona, bifrontal shunting, incorporation of antisiphon or horizontal/vertical valves into the shunt, subtemporal craniectomy and posterior calvariectomy.  Once a shunt problem has been ruled out then medical management is the proper way to go.

Sincerely,

CCF Neuro MD

[Amy]

Thanks so much for all your help.  I'll check with the opthamologist to see if the checked his retinas during his exam.  The ped. neurologist also looked in his eyes.  

I'll have to have some further discussion with his neurosurgeon about his shunt and having it tested.  (The pressure in the shunt has not been checked so low pressure is still a possibility.)

Can you tell me about the "shunt headaches" you mentioned in your first post.  I've never heard of them.  We have no history of migraine in our families.

[CCF Neuro[P] MD, RPS]

Dear Amy:

I am sure what you want to hear.  I believe you that the headaches are real. Since the headaches have been going on for alittle while, go get his retinas looked at and see if there is papilledema.  If there is then it is increased ICPs inducing the headache.  Slit-like ventricules are associated with overdraining type headaches (could be like you described) but you indicated that the pressure was checked and found to be okay. If you compare the ventricle size to right after the shunt was replaced, are they identical?  

A note to you.  Just because the pump in the shunt can be used does not necessarily mean that the pump functions as it is intended.  But usually it is not over draining but under draining and the ventricles would look big not slit like.  

Sincerely,

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

Dear Amy:

In general, what you were told is true.  However, we have seen an occasional child who gets low pressure headaches without any symptoms when changing position.  We found this out when one of the children looked like he had slit ventricles and there were some CT changes in vent size.  When we changed the pressure release higher, his headaches went away.  

Sincerely,

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

Dear KD:

Thanks for your comment.  However, in this case there is no arachnoid cyst by CT.  Since all previous studies were CT, it is difficult to compare MRI to CT and may confound the issue in this case.  If there were some indication of a cyst, I would agree with you.

Sincerely,

CCF Neuro MD

[Amy]

Can you tell me more about shunt headaches?  I've never heard of them.

Neurosurgeon ruled out low pressure since he doesn't get headaches when moving from lying down to sitting up.  But does low pressure ever present another way??

Thanks so much for your help

[kd]

My son had nightly headaches for most of 2 years.  Sometimes with vomiting.  Sometimes with neurological effects.  The doctor said they were nothing.  Prescribed tylenol with codeine.  I kept pushing.  He sent my son to a neurologist who said migraine (I didn't think they were b/c I have migraines and many people I know do and the headache is not in the center of their foreheads every night when they lie down or following going over a bump in the road.)  He gave my son an EEG and an MRI.  My son had a very large arachnoid cyst which caused some hydrocephalus.  He has had 2 surgeries (age 7 and 9) with decent results.  However, occasionally - especially when he has allergies or a virus or a storm is coming in, the pressure seems to increase and his headaches come back.
One thing that seemed to help for a while after the surgeries was to have him sleep on double pillows.  It seemed to keep the pressure distributed more like when he was sitting and he didn't get the headaches when he lay down.
I would suggest you ask your dr for an MRI.  MRIs show different things than CTScans.
Of course, the dr here might have a different opinion.
Good luck.
Don't give in.  Mom's intuition often is correct in the long run.
kd

[Amy]

To continue:

I still think something is going on with the pressure in his head.  Any idea what the problem might be or what I should do next?  I'm continuing to keep a diary of the headaches as the doctors advised me to do.  

It's very difficult to watch my child suffer and he always asks me why his head hurts and I don't have an answer.

[CCF Neuro[P] MD, RPS]

Dear Amy:

Sorry to hear about your son.  There are three things that come to mind.  The first is overdraining of the sunt to create slit like ventricles and headache.  This is a know quantity and happens with moderated frequency and just requires fine tuning of the pressure valve.  I assume that this has been ruled out.  The second is a  shunt headache.  This also is a known entity and can present as you describe.  The third is that your son is expressing migraine headache.  This is also a known quantity and we have seen young children as yours present as migraine headache.  One needs to fully exam the child, take a detailed family history, and always double check the CT scan and shunt series.  

If there is a family history of migraine, then one tends to lean in the migraine direction.  If there is no history then the tendency is toward the shunt headache.  The other entities are pretty well known and as you have had the shunt pressure checked and it is not overdraining then it is likely not this.  I would persue the migraine or shunt headache angle.  

Sincerely,

CCF Neuro MD