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Dr. Rick
Dr. Rick, Board Certified MD
Category: Eye
Satisfied Customers: 8059
Experience:  Ophthalmology since 1994 with Retina sub-specialty interest
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Our daughter has neurofibromatosis and pale color of optic

Customer Question

Our daughter has neurofibromatosis and pale color of optic nerve on left eye. Rt eye is pink. Can the pale color switch back to pink. Doctor states she is 20/60 in both eyes. Should chemo be done or should observation be done. Already signs of ptoposis.
Submitted: 3 years ago.
Category: Eye
Expert:  Dr. Rick replied 3 years ago.

Dr. Rick :

Hi. I'm online and happy to answer your question today.

Dr. Rick :

Is there a lesion on her optic nerve or is the lesion in her orbit and compressing the nerve while it causes proptosis?

Customer:

MRI reads the following: Impression - abnormal thickening of the optic nerve bilaterally with multiple areas of abnormal t2 signal and the basal ganglia and pons compatible with neurofibromatosis. Small amount of fluid in the mastoid air cells.

Customer:

There is no mention of lesion(s) on the report

Dr. Rick, Board Certified MD
Category: Eye
Satisfied Customers: 8059
Experience: Ophthalmology since 1994 with Retina sub-specialty interest
Dr. Rick and other Eye Specialists are ready to help you
Expert:  Dr. Rick replied 3 years ago.
Oops....you accepted early!

I'm still here to work on your issue....
Expert:  Dr. Rick replied 3 years ago.
Thanks for that information.

It sounds like she has an optic nerve glioma in each optic nerve. In NF1 patients these usually become symptomatic before the age of 10, usually following a short period of rapid enlargement. In some patients they then slow their growth and in a few cases even show some spontaneous improvement.
Expert:  Dr. Rick replied 3 years ago.
In tumors that first present confined to the optic nerve (as, it seems, is the case with your daughter) very infrequently extend into the optic chiasm (the brain area)and almost never form distant metastasis.

This is a good thing.....

What is recommended for treatment? Some doctors recommend removing the lesions via surgery, which causes blindness but can leave the eyeball intact for cosmetic purposes. Others feel that chemotherapy and/or radiation can stop the growth of the lesions and address any proptosis (which you said your daughter has)

I must warn you. If the lesion moves into the optic chiasm area of the brain significant loss of function with up to 50% mortality rates in some reports.

What should you do? Exactly what you are already doing. Get early answers, find a doctor or team of doctors who you trust and keep on top of things.

To answer your question directly. It is very unlikely that your daughters optic nerve will return to a normal pink color or to normal functioning from what you have told me. I can't truthfully tell you if chemo, radiation, surgery or observation should be done at this point. That question is best put to the doctors who are helping you and your daughter work thought this very difficult issue.

I will be happy to help you better understand what is going on as you move forward in this process. If you want to bounce issues, test results, recommendations off of me....or if you just want to vent, please, drop me a note and I'll be more than happy to help.

Please, let me know how things turn out. Take care.
Customer: replied 3 years ago.

What is the short period of rapid enlargement time period usually.... When does it start to slow in growth also. If she is 3 years old does the growth of this stop by age 10 as stated. If your daughter, when would you consider the chemotherapy - wait and see approach or do as soon as possible.

 

We are seeing a neurologist at UCLA this Thursday. I have talked with her pediatrician who talked about methotrexate vs. chemotherapy. Surgery has not been discussed.

Expert:  Dr. Rick replied 3 years ago.
The period of rapid growth varies from patient to patient and, I must admit, I've never actually heard a "time frame" for activity....just that it usually starts/is diagnosed prior to age 10.

If it were my 3 year old child I would try all available options (as long as it doesn't threaten her life) before doing surgery that involves removing both her optic nerves. I am concerned in your daughters case, however, that she seems to have disease activity in her pons and basal ganglia (parts of the brain)already.

I would do exactly what you are doing.....consult with as many sources as possible, perhaps ask where active research is being done on this issue and possibly consult with the doctors at that institution as well as with the folks at UCLA. I do want to say that, in my opinion, the folks at UCLA are excellent and will not steer you wrong.

I'm sorry but I don't know who is at the cutting edge of NF1 research/treatment.....perhaps your Neurologist knows. You could ask her on Thursday.

Methotrexate is a chemotherapy agent......

Let me know if there is anything else I can do to help you while you go through this difficult time.....

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