Atypical Chiari Headache

[MrsBri]

My 14 year old son was diagnosed with Chiari Type 1 in January of this year.  Thanks to his wonderful pediatrician we were able to get a diagnosis with two weeks.  However, his headache is not typical for Chiari.  He had never had a headache, neck pain or any other Chiari symptom before January.  He laid down for a nap and woke up with a headache in what he describes as the center of his brain.  It is not pounding, throbbing, pressure, tightening, etc.  He said there are no words to describe the pain except that it's something he has never felt before and it's really bad. The headache has not gone away for one minute since January and It varies between  6.5 and 9 on the pain scale.  It has incapacitated him to the point that he only attends school a few hours a week and spends most of his time on the couch or in bed.  He has been seeing a neurosurgeon who specializes in Chiari and was told that he has a 20mm extension but no Syrinx yet.  He does have a little more fluid in his spine than normal (3mm) but the neurosurgeon said that he wants to monitor it to see if the fluid increases.  He said he did not want to do the surgery unless it is required for his spine, as his headache may not improve with the surgery, especially given the abnormal pattern.  We recently found out that his great aunt also has Chiari, but did not find out about it until she was in her sixties when she had an MRI to find out why she leans to the side a little when she walks.  She is 80 now and she has never had any other issues from the Chiari.  This makes me wonder if his headache is even related to the Chiari.  He has had Two MRIs and a MRA of his brain along with a MRI of his entire spine and no other issues were found.  Has anyone else had this type of headache with Chiari?  We go back the the neurosurgeon in a couple of weeks for more MRIs and I'm hoping his spinal fluid has not increased, but I also don't know what to do about my son's pain.  He goes to physical therapy twice a week, he no longer eats sugar or gluten, his is taking Migrelief, fish oil and vitamin D, we have tried acupuncture and a looking for someone who does neurofeedback.  He has also tried over the counter pain killers which upset his stomach and do nothing at all for the pain.  I would appreciate any other suggestions you might have.            

[selmaS]

  Just a FYI- allergies or what I came to find is an over production of histamines....and many with EDS can have this....I am now on a regular dosage of anti histamines  which is helping not only my PND, but my reflux and I am sleeping better too.

Sometimes we do not realize we have "symptoms" of something and consider how we feel to be "normal" as it is our normal....so your son may have symptoms he has not reported as he considers how he feels to be the way he always feels....I know I also found that to be true for myself......

Do keep us posted if anything else is found...best of luck

[MrsBri]

Thank you for your reply.  I spoke with the neurosurgeons office yesterday regarding the possibility of other related conditions.  After we meet with them to review the next set of MRIs (two weeks from now), they will refer us to their neurology department for further investigation into other conditions that might be present.  From the research I have been able to do myself, he does not seem to have any visible symptoms of other related conditions.  The only thing I have noticed it that he stared occasionally waking up with swollen eyelids and lips about 6 months before the headache started.  His pediatrician said this was just allergies.  He is being seen at our "local" children's hospital, however between the crazy traffic and the long wait times it is easily an 8 hour trip each time we visit (three so far).  The last trip was so hard on him that we are staying over in a hotel this time to avoid too much driving in one day.  Do you know if they do all of the testing for other conditions in one appointment or are we looking at several trips back and forth?      

[selmaS]

  Hi and welcome to the Chiari forum

I know the size of the herniation is not an issue, but if there is an obstruction to CSF flow or compression of the brain stem...(retroflexed osontoid) could explain the constant pain..as it is not common for someone with Chiari as the symptoms cycle.

What other related conditions have they ruled out beside Syringomyelia?