optic nerve tumor surgery

[hockeymomof3]

I was just diagnosed with an optic nerve tumor from a Cat scan and follow up testing from an opthamologist. I was referred to an occuloplastics eye surgeon who is sending me  for a MRI. The tumor is sitting on top of the optic nerve and to the left.  The surgeon will make a window above my eyebrow to get to the tumor to remove it. Is this rare, very rare or common? My question is how long will healing time be? Will I be very swollen, black and blue, scar, patch over my eye? I know there is a chance of bleeding and blindness or some loss of vision. The tumor is 2.4cm x 1.4cm. Is that the size of a nickel?

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[John C Hagan III, MD, FACS, FAAO]

Your spelling is incorrect. It is a "hamartoma" tumor.  Here is a like about this type of tumors.

http://en.wikipedia.org/wiki/Hamartoma

JCH III MD

[hockeymomof3]

Hi Doctor
I had my biopsy done two weeks ago. What I have is a hammer tumor on my optic nerve. I was told by the pathologists that it is a very rare tumor and even more rare to have it in the eye. First path report was a psuedotumor from a local hospital where I had my biopsy done.  My doctor was not satisfied so he sent it to U of MICH. hospital for a second opinion and they determined it was a hammer tumor. I have tried to find information on the web about this kind of tumor with no success. Am I spelling it wrong? Is there anything you can tell me about this tumor or a web site you can direct me to? I want to arm myself with as much info as posssible before my next dr. appt.  Any help you can give me would be appreciated.

[John C Hagan III, MD, FACS, FAAO]

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[hockeymomof3]

Thank You Doctor.

[John C Hagan III, MD, FACS, FAAO]

That type of tumor is realatively rare and in my large practice I see only one in two years so I cannot give you person experience with enough outcomes to be meaningful. I do not think you will lose hair with the focal radiation treatment used. That's more of a problem with chemotherapy.

Good luck.

JCH III MD

[hockeymomof3]

Hi Doctor
My MRI showed the tumor is around the optic nerve . Can't have it removed without vision loss. I am having a biopsy done on Monday and then probaly radiation after that. My question to you is How many cases a year do you see of an optic nerve tumor and what are the outcomes? Also I know it sounds so vain, but will I lose my hair with radiation?

[hockeymomof3]

Thanks for your kind words I do appreciate them.

[AlexanderL]

There are tumors of the optic nerve that are often unrelated to neurofibromatosis like optic nerve sheath meningiomas. These are more common in adults and 3 times more commen in women than men.  

In patients with neurofibromatosis, the incidence of optic nerve gliomas is quite variable, from 10-70%...90% of optic nerve gliomas occur and are detected before age 20.

Both optic nerve meningiomas and gliomas are usually benign, and often not treated at all or they are treated with radiation. Usually they are not resected except in unusual circumstances. I suspect that what you have is likely an intraconal orbital tumor abutting the optic nerve.  

There is nothing you did to cause this...just something that happens. Best of luck to you.

[John C Hagan III, MD, FACS, FAAO]

Hello Mom     There's nothing you did to deserve this, nothing you could have done to prevent it. The only disease that commonly causes optic nerve tumors is Von Ricklinghousen's Disease or neurofibromatosis ("Elephant Man's Disease").  That is a very obvious problem and fortunately rare.

Every day I have to tell someone that they have a bad problem that they could not prevent. The most difficult questions in medicine and life are "Why me? Why now?" sometimes the answer is just "bad luck".

I've had several MRIs and being somewhat claustrophobic its been an ordeal also. I believe the helmet would have been for protection or shielding.

I do hope this turns out okay. Not all of these tumors grow or cause big problems. Hope. Pray.

JCH III MD

[hockeymomof3]

I did get to a specialist surgeon right away. Had my MRI done yesterday, which by the way is the worst test I have ever had. I just want this tumor out of me. Do you know why people get these tumors or is it just random? Is there something I could have done to prevent getting this? Also what is the reason for the helmet when you have a MRI?

[John C Hagan III, MD, FACS, FAAO]

If you have a tumor on your optic nerve you MUST see an ophthalmologist and possibly a neuro-ophthalmologist or neurosurgeon. These tumors can cause loss of eye and in some cases even be life threatening.

You need to take action immediately.

JCH III MD

[hockeymomof3]

I was running in a race and fell on my face. thought I broke my  left orbital bone and went to the ER. They did a cat scan and found the tumor on my right optic nerve. I have had some blurred vision and double vision but I just wrote it off to getting older. Plus I had no insurance to go see a doctor. No I am not in pain. If i wouldn't have fallen I probaly would have not known until it was to late.

[mla65]

are you in any pain?what made you go to the eye dr and find this?
whats your symntoms?

[John C Hagan III, MD, FACS, FAAO]

This is a very unusual problem that calls from special expertise. Because each tumor is different you will need to get this information from the physicians that will treat you. They will also outline the risks of surgery and the risks of "doing nothing'

JCH III MD Eye Physician and Surgeon