absence of septum pellucidum

[lil sunshine]

My 11 yr old daughter has a PTC due to her MRI showing Aof SP with enlarged ventricles.She had a spinal tap 04/04 and a blood patch with continued headache pain with nausea for 6 wks and put on Topamax which helped.H/As are now at 3/10 on pain scale as opposed to 7/10.
After a flight on small commuter planes H/As came back with nausea and 7/10 pain.My daughter also went from 104 lbs to 87 lbs from spinal tap and cannot gain the weight back.She has no venous pulsation in left eye and nysygmus in right eye, with loss of perpheral vision in both.Last year her head circumference was 54.5cm.Still no dx of NF1 due to only CALs criteria.Neuro dr says MAYBE glioma/harmatoma ?but no official dx.
She is 5'2and 1/2"and started puberty at age 7.Bone age at 10yrs put at 14yrs from xrays.
She went to Ped dr who ran blood tests and xrays and funny enough after she did the blood tests it was like a leeching effect.The next day after resting ,her head pain was back to it's daily 3/10 pain.She has a H/A EVERY day,has for at least since 3 yrs old that I can remember.With that came throwing up at least once a day then she was fine.She is a straight A student,but has difficulty with balance issues.She was falling down the stairs last year almost everyday before her spinal tap.
My question is do we need to seek a neurosurgeon consult in addition to her neurology dr?He doesn't seem to be to concerned about the worsening headaches.She has seen a Psych Dr who cleared her of depression.If she continues to have spinal fluid build up can't a NS do more for her?
Thank you

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

Your daughter's case is obviously complicated, so without knowing the full history, doing an examination, and seeing the MRI scan, it is difficult for me to comment on her case.

Several points also are not clear from your note - I presume by PTC you mean Pseudotumor Cerebri? but blood patches are done for low, not high CSF pressure, this is not clear.
Also not clear is whether the neurologist thought there was a glioma - based on the MRI?

You must be wary of having brain surgery done, unless really needed. For a high CSF pressure headache the type of surgical procedure would be a shunt - a tube from the CSF space around the brain to the abdominal cavity. In some cases this can be beneficial, for instance in conserving vision (has your daughter had her visual loss confirmed by formal visual field testing, if not this should be done), but it also has risks of surgery, infection etc

A second opinion can be a good option before making such as important decision. The pediatric neurology department at the Cleveland Clinic have a lot of experience in this area as does our pediatric neurosurgeon, Mark Luciano

Good luck

[lil sunshine]

Thanks for your Reply.

The blood patch was done 22 days after her spinal tap. Yes she does have Psuedotumor Cerebri due to high pressure. I kept her down for a week and drinking water and Mountain Dew  but she already had the worsening headache before we left the hospital.She missed a month of school and really another 6 weeks of only attending for hours thereafter due to throwing up.They did the blood patch at the insistence of Neurologist 22 days after spinal tap, with a hospialization inbetween with 3 days of IV DHA? {caffiene} that didn't help at all. The Ped drs all wanted to know why she hadn't been diagnosed with NF1 due to her cafe au lait and visual findings{nysygmus and loss of peripheral vision}.She did have the visual field tests and Opthamology screening every 6 months, no lisch nodules yet.

Her dr has only done MRI without contrast. He wrote in her records and told us possible glioma in hypothalamus which would account for the early puberty at aged 7 I would think. This is a child who wears short sleeves in the winter and has had regular monthly periods since aged 10.She was put on Topamax as a last resort , even though she had the weight loss , but it has reduced her H/As and nausea to a tolerable level allowing her to go to school and function.Until we took this flight on this commuter plane and then her H/As worsened. We are flying again on the same type of plane this weekend so I guess we will see if that makes a difference in her pain.

Thank you