Anyone have a child with a Trigeminal schwanomma ?

[All6craxykids]

Is there anyone that has a child diagnosed with a Trigeminal schwanomma? My now 14 year old daughter was diagnosed at age 9. She had surgery to remove he tumor and has side effect of right sided numbness of he face. She is now having to deal with severe headaches that the dr can't seem to figure out what to do. We are sitting at chop now trying some IV meds that are seeming to make her worse rather then better. Any help or ideas would be great!
Thanks
Lisa

[rumpled]

I hope so too - pain is not fun.

Are they looking into removal of the lesion as well?

[All6craxykids]

Thank you so much for responding. I just starting looking into acupuncture for her, waiting for the Dr to call me back. I did hear Botox may also be an option. This poor child is missing so much school and just missing out on being a teenager! She is already on topamax, trileptal, and magnesium. Hoping they find the right combo of meds soon!

[rumpled]

I am sorry to hear about your daughter. I hope someone chimes in with the same tumor. I seem to recall hearing someone post with the same but it was a while ago if I remember correctly. Unfortunately our search comes up with older posts first rather than newer ones (ugh!) which makes it harder to find recent people posting about specific topics.

I have trigeminal neuralgia myself and I am on a class of meds such as neurontin, keppra and topamax that they give for nerve pain - so I assume the docs have tried that.

Other options I have heard is botox to deaden the nerve but if the eye is effected they cannot do that. They can do a temporary try with another anesthetic to see how it will work.

I would also consider acupuncture. The needles may seem freaky at first, but I find it really works well if you find a good person and it can really reduce inflammation and pain. There is a website where you can search for "medical acupuncturists" and get doctors (MDs) that are also acupuncturists and they may be able to help you.

I control my headaches and pain using acupuncture as well as using topamax so it may take a multi-pronged approach.