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Neurology (Expert Forum)
Optic Nerve Sheath Tumor
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Optic Nerve Sheath Tumor
by Andrea Havill, Feb 02, 2000 12:00AM
My 55 year old mother had a second crainiotomy to remove her optic nerve (left eye) which housed a benign tumor in November. Her first surgery was 2 1/2 years ago, left her blind in the left eye and partial vision in the right. Apparently a substantial amount of the tumor was not removed during the first surgery. (Symptoms such as pressure, dizziness and protruding eyball led us to a new set of doctors and thus second surgery.) The first surgeon called the tumor a "benign meningioma", the second an "optic nerve sheath tumor". Is there a difference? Further, her doctors within the last week have determined that a small portion of the tumor remains behind the eyeball and that radiation should be the next step. I trust her current doctor, but feel in dire need of good reference books, articles, etc. that that would help explain her tumor including diagnosis, appropriate therapies, quality of future life, etc as well as allow me to ask more informed questions. Do you have any suggestions? And finally, the dizziness which began about 6 weeks prior to the second surgery persists; in particular, when she gets out of bed or stands up quickly (same as before surgery). The doctors don't have an explanation; Do you? Any comments, suggestions or advice is greatly appreciated. Thank you.
Doctor's Answer
by CCF Neuro[P] MD, RPS, Feb 02, 2000 12:00AM
Dear Andrea Havill:
I am not sure what to tell you as the diagnosis of the tumor dictates what I tell you. A meningoma is a possibility but these are usually singular in nature and would only be in one area. The vast majority of the time they do not require removal of the eye. What you are describing to me sounds more like a glioma, such as a pilocytic astrocytoma. That would cause a sheath tumor, or something like a oligodendroglioma. Find out the exact pathology of the tumor resected. Meningomas grow so slowly that repeat surgery so soon would not be the usual course unless it has turned malignant (only in a small number of cases). Find out the pathology and let me know.
Sincerely,
CCF Neuro MD
I am not sure what to tell you as the diagnosis of the tumor dictates what I tell you. A meningoma is a possibility but these are usually singular in nature and would only be in one area. The vast majority of the time they do not require removal of the eye. What you are describing to me sounds more like a glioma, such as a pilocytic astrocytoma. That would cause a sheath tumor, or something like a oligodendroglioma. Find out the exact pathology of the tumor resected. Meningomas grow so slowly that repeat surgery so soon would not be the usual course unless it has turned malignant (only in a small number of cases). Find out the pathology and let me know.
Sincerely,
CCF Neuro MD
A meningoma is a very slow growing tumor. The fact that it returned or presented with symptoms so soon after surgery would mean that either they did not get it all or it turned malignant. I would think that it is the former from what you have indicated. This is a very difficult to remove all the tumor cells. What did your neurosurgeon tell your mother? What sort of prediction did he/she give? You are putting me on the spot without any films, path reports etc. The opinion of the surgeon is far more valuable than my internet opinion. Didn't he/she provide your mother with information? You can go to any medical library and find the basic information in any text on pathology and neurosurgury. Meningomas occur in a variety of areas, one of which is in the optic chiasm. They are singular in nature, meaning that they do not form in multiple areas unless you have radiation or another syndrome (such as NF-2). They are not invasive but they can become maligant. There are specific types of meningomas that contain steriod receptors which some think may lead to their growth. However, whether you mother's is this type, only the pathologist can tell you (what did they say?). If the tumor is steriod responsive then growth may be controlled by anti-steriod treatments(estrogens or progesterone). Gamma knife may be an alternative, but I am not sure if the recurrence data is well known. A lot depends on where and who does the gamma knife treatment. Since surgery could not get rid of the meningoma, I am not sure what to tell you about gamma knife surgery. Certainly, it will help but whether the degree of tumor removal will be great is unknown to me, it depends on what they see on MRI.
sorry, I'm not much help, but my hands are tied.
Sincerely,
CCF Neuro MD
I have NF-2 and have had schwannoma removed from my optic nerve and the orbital floor of my left eye. A craniotomy was performed 8 mos ago. Proptosis remains and I pray it is attributed to scar tissue and not the other. I too, have dizzy spells, which I think are common when your eyes are messed with, more especially when I first wake up in the morning and when I am tired. I hope all goes well with your mother and pray everything turns out for the best. My thoughts are with you.
Sincerely,
C Jenkins
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CCF Neuro MD
I'm troubled. (as usual) My mailbox is full. Most are troubled people. Troubled with earthquakes and aftershocks. They've tried to post questions but have given up hope of ever doing so. If it isn't dealing with what to expect post-viral, it's about their pre-craniotomy fears or post-craniotomy nightmares. I don't have a problem with explaining to a worried son about the step-by-step "what-to-expects" of his mother's up-coming craniotomy. In fact, it helps me... and it's even better still hearing that the surgery went flawlessly and that his mother isn't going to go blind. Or... the question, "I can't walk straight! Why can't I walk straight? I stumble. Can't pick up my feet! Did something go wrong?" So... (as usual) those with NF seem to litter the mailroom floor wanting to trade experiences or delve deeper with an array of questions about their own up-coming tumoral excision problems. They know that I'm not a physician, so they lean for support... and I'll continue to support because they need it. If every one of those people could have gotten through to post a question about their troubles or to inform they were troubled you would have been troubled. I thank my lucky stars everyday for being given experience because it helps all the way down to what medications are decent for controlling pain. Therapy is therapy, no matter. I'm there.
Christine
CCF Neuro MD
Is there anything that can be done to try and repair damage to the nerve.
This is a guy that went to bed with a headache and work up blind. Any detail of possible remedies would give hope.
David
Alot would depend if the optic nerve