Headaches after Brain Surgery

[AmySurber]

My daughter had a JPA - juvenille pilocytic astrocytoma - Brain tumor removed 3 years ago from her cerebellum.  She is having awful headaches that started 5 months ago and were random.  Now they are almost daily.  3 months ago we repeated MRI and place were tumor removed is ok.  Not sure why the headaches.  We have had her eyes checked and allergy tested also.  Both doctors said the headaches could not be from their areas.  Tumor removed from back of brain but headaches are in front sides of head.  Like temple area.  Most headaches occur after sleeping or when really tired.  We have seen 2 Pediatricians, 1 Optamologist, 1 allergist, and our regular neurosurgeon so far.  What else can we try and what might be causing her headaches?  She just turned 7 years old when the headaches started.

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

If there is a family history of headaches then she may simply be developing a headache disorder. The worrisome things such as tumor recurrence and hydrocephalus have been excluded with the MRI that has not changed. Children can develop migraine or tension type headaches just like adults. Also, if she is recieving more then 2-3 doses of an analgesic per week, this could also be causing her symptoms. The best advice I can provide is to have her see a Pediatric neurologist, and preferable one who specializes in headache. If you are in the area we have an excellent Pediatric headache doctor named  A. David Rothner. Good luck.

[Tara-Renee]

How does she explain the headaches.....are they like normal headaches? Are they very sharp or severe and in one particular spot? Do they feel deep within or more on the outer surface, how long do they last, does she get them while she is tired or do they cause her to get tired? Does she have any other problems while she is having these headaches? (vision, dizziness)

[AmySurber]

Headaches occur when she first wakes up or they wake her up.  If it later in the day it is when she is already really worn out - like after being in school all day and then to church on Wed nights she is so tired and her head starts to really hurt.  Sometimes she can still watch TV or what ever but sometimes she just cries and does not want to get out of bed.

No other symtoms - no sick stomach, no dizzy spells, not blurred vision.  Only change we can see is they went from once in a while to almost every 1-3 days she has one.  

Most of the time with 1 hour of advil she is better but some last hours and hours.  Never more than 4-5 hours.  If she goes back to sleep after Advil she usually wakes up feeling better.

Eyes have a wild look when she has a headache like she really is not adjusting to seeing you in front of her.  They headaches are always in the same place.  Temples - to the side of her head slightly higher than her eyes.

We have checked her eyes with a eye dr and her sinuses and allergies.

[AmyD]

That is so interesting.  My son experienced the exact same symptoms starting about a year after having a JPA on his cerebellum removed at age 2 1/2.  We went from doctor to doctor (scans, eye exams, ENT specialists, etc.) but didn't get any answers and nothing seemed to help him.  We always thought it was related to his v.p. shunt.  One hope I can give you is that his symptoms resolved themselves after two years, almost as quickly as they came on.  (It was a rough two years however.)  He just turned 8 the other day and now only has an occasional mild headache when he is tired or coming down with something.  I am always afraid they will come back however.

[AmySurber]

Well we went 3 years before the headaches started.  Katelyn had surgery May 9, 2000 and she turned 4 on May 25, 2000.  We had her last MRI done the last of June and they said no change from the last one.  The headaches had just started so we saw her Prdi NeuroSurgeon and he told me then to take her to her Pedi to try and resolve them.  He has no answers except to say she is clear from sinsus infection and to take her to have her eyes, hearing and allergies checked - which we did.

Katelyn turned 7 May 25th this year and I hate to put her through anything else.  We go to the Pedi Neurologist in 2 weeks but he said since the MRI was ok in June, he really did not know if he would have any answers.

We just need to know where to go from here.  I do not like unexplained symtoms with the history she has.  What did the DRs tell you were the chances of the JPA coming back?

[AmyD]

He had a complete resection and they said the chance of a recurrance was 5%.  They say that chance gets smaller as the years go by.  His surgery was May 22, 1998.  He had an MRI in August 2002 and all was well.  I also have a 5-year old (I was pregnant in 1998 while going through all this) and I've always wondered if JPA runs in families but I've never gotten any answers.

[AmySurber]

We had our surgery in Dallas, TX.  They told us the reoccurance was much higher than that.  They did tell us that is kids made it to 5 years without any regrowth, the tumor probably would not return - if it did, it was usually when their hormones started to change is early teen years.

We also have a 5 year old son and I have asked about running in families.  They said there was no way for it to be something we passed to the kids.  Katelyn's was caused from an abnormal cell that went crazy and there was no way to know ahead of time and it would be highly unprobable for anyone else in the family to ever have anything like this happen to them.

DO you get on the boards at the National Brain Tumor Foundation?  There is a  lot of info there.

[AmyD]

Evan's surgeons were pretty confident they'd removed all of the tumor and gave him a very good prognosis.  His surgery was at the University of Rochester's Strong Memorial Hospital here in New York.  I'll have to ask his doctor about the puberty thing.  I'll have to check out the National Brain Tumor Foundation.

It's nice to hear it's not hereditary.  I can relax a little.

One thing I forgot to mention, in addition to the symptoms you described, Evan also sometimes threw up.  Of course whenever he got a headache and got nauseous I was terrified that the tumor was back.  

One thing they did for Evan that seemed to help his headaches was prescribe Diamox which is a diuretic-type thing that reduces the amount of brain/spinal fluid.  I think they tried this because he has a v.p. shunt so it might not help your daughter but it might be worth asking about.

[beano]

did you have to get any radiation procedures after the brain tumor was removed?
i have heard that radiation can cause other complications that could cause headaches, or nearby structural damage.

i know one mother whos daughter had this type of tumor removed, and the radiation she received for it-- damaged her pituitary gland functioning. sometimes with pituitary gland and assocaited hypothalamus damage (controls appetite)-- you can get vomiting and headaches, and then hormone problems like:
growth hormone deficiency
hypothyroidism
adrenal gland problems
sex hormone problems

[AmySurber]

We did NOT do radiation - although we have had her pituitary gland questioned in the past.  Last November they did extensive testing on her pituitary gland including CAT and MRI and lots of blood testing that was over $2000 worth.  All was well at that time.  The concern was she put on 20 lbs in less than 6 months - she was 6 years old then.

We are going to the Pediatric Neuro Oct 3rd to start testing again to try and find out what the headached are - they bother her so often.

Thanks!

[beano]

hello
try magnesium for headaches in the meantime-- or look it up on the web-
magnesium and migraines.
also-- even though they do say they did extensive endocrine testing-- they often leave out growth hormone-- and it is the GH that causes so many problems that mnay doctors dont realize.
to test for GH you need a IGF-1 test, then a GH stimulation test-- it takes about 2 hours to do the GH stim test. a simple blood draw for "GH" will not be accurate.