Osteoma Question

[DMarty1966]

I posted in Oct about my 14yr olds abnormal CT scan with mass w/calcifications. MRI showed no soft tissue. My daughter is still having problems and was referred to a Headache Specialist. She sent her for another MRI and told me that the last MRI showed that the lump is a 6mm Osteoma. This last MRI which assessed the Osteoma again grew now to 7mm. Because she still has numbness in her lips when she wakes up and has some gait problems she referred us to UCONN childrens hospital in Farmington, CT to have the assess it. She thinks it should come out because it is growing so she wants another opinion with a pediatric Neurosurgeon. In the meantime, my daughter noticed that there are soft, painful indents on each side of her head. The Osteoma is in the occipital area of her skull. Could this be related to that? Or something different. I want to call her Dr and ask her but don't know if I should ask her if this could be something else. I know you can't diagnose, but can you give me some ideas that I can tell her when I call her? Thankyou. You provide a wonderful service here and I'm very grateful for any info you can give me.
Dee

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

Without knowing where exactly the mass is and where exactly your daughter is experiencing the pain it is difficult to comment. It would seem unlikely that the two are related, but a phone call the doctor would be reasonable. It should be a quick call for them since they have evaluated her. Good luck.

[DMarty1966]

Also, which I forgot to add is that for the past few weeks my daughter also says that her head feels "bloated", like its full and heavy. Could this also be in relation? She is seeing her headache Dr on 1/3 and already talked to her nurse today and said the Dr will look at the indents, but when I see her and the neurosurgeon on 1/11/04 is there anything else I should ask them to check her for? I'm just afraid the neurosurgeon is just going to send us away telling us to leave it alone, but I know this Osteoma is the main cause of her headaches and neuro problems. What would you reccommend I do or say if that also happens?????
Thanks again for providing this wonderful service and giving us all your time. I greatly appreciate it.

Dee

[DMarty1966]

The Osteoma is located posteriorly in the occipital region of the skull. She has pain directly on and around the lesion that is protuding from her skull. The indents are on each side of the lesion as well and when she touches the sides of her head their is some discomfort in the indent area. The CTScan also showed calcifications in the occipital region. First mri said it was 6mm the second mri a few weeks ago showed it grew to 7mm. Between the two mri's, they were about 2-3 weeks apart, so the osteoma is growing a mm every few weeks. I know you can't comment on this, but does the above information give you a better idea??
Dee

[DMarty1966]

I'm sorry for so many comments. The mass on the CT Scan was in the Occipital area. I'm assuming that the mass is the Osteoma. Is that correct??
Dee

[Nancy 1019]

I'm sorry for sounding like a broken record ( again), but I hope you can find out  about Chiari Malformation and CINE flow studies at the craniocervical junction.  Also, please ask your doctor if your daughter has spina bifida occulta ( missing section of the bony part of L-5). It is possible to inherit all kinds of  "glitches' along the spine and lumbo-sacral area as part of the SBO. Most are harmless.
( I have small holes in my sacrum, missing lateral section of
L-5, hemangiomata at T-8/T-9, and cervical ribs.)  I have  read about anomalies of the occiput associated with
spina bifida . Since spina bifida occulta is considered to be a mild form of SB, it certainly isn't a stretch to think that some SBO people may get occipital /craniocervical junction abnormalities.  Plus, gait difficulties can be an indication of a tethered spinal cord.
Don't give up. Someone will know.