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Hello,
My daugter is 4 1/2 with nf1 and I was told by the eye dr. her eyes are fine. We have gone twice so far. We have to go in another year.
I was wondering if an optic glioma can be missed by the eye doctor? Is an mri needed also to make sure there is nothing there?
Thank you all for your advise and support!!
Have a good day,
Donna
I think it might depend on the eye doctor you went to. I have optic gliomas on both eyes. For my eye glasses I see a regular optimologist that can write glasses prescriptions, but I see a nero-optimologist for my optic gliomas. He only deals with my gliomas and not with my eye glasses.
My gliomas were first pick up by a mir and not by an eye doc.
I would say if you are worried to have and mri and find a nero-optimologist who have more specilized training.
Good luck
my dd has nf1. just started having eye issues. our optometrist sent us to a neuro-opathamologist. we are now going for an mri. she is 4 1/2. 555 can i ask how old you are and what issues the gliomas have caused. where they were located. any treamtents including glasses you have had. any information you want to share is appreciated. this all hit us like a brick wall a few weeks ago.
Mommyone
I am 34 years old. I have worn glasses since I was 5 years old but that was just for bad eye sight.
My tumors are on my optic nevers I have one on each optic nerve. My right eye is more effected than my left eye. I do have pain behind my right eye and my right eye gets twitches in it. Which I do take meds for. The twitches feel like my eye is being bounced up and down like a basketball.
My field of vision test on my right eye show that I have a section that I do not see any of the lights and it is from about the mid point of the test down. Or another way to describe it is if your doctor uses the sheet of paper with the dot in the middle and all of the lines that go up and down and left and right. I do not see any of the lines below the dot.
But my left eye has been less effected I really do not notice any lack of vision in my left eye.
I still can still drive and goto movies and plays and things like that. Every now and then I trip over things because I just do not see them.
If it is really bright out I get headaches and if I spend too much time on the computer my eyes hurt and burn. Some days my eyes are more sensitve to light and almost any light is too much but those days I just keep the lights off and hang out and watch T.V
I hope this helps if you have any more question I will be more than happy to answer but I can only tell you what has happend to me.
My friend's son has an optic glioma although no other symptoms of NF. It was our eye doctor that discovered his optic glioma. So to answer your question, YES!, a regular eye doctor can detect an optic glioma. My friend's son then had a follow up MRI to confirm the initial diagnosis.
I have NF1 and doctors first my found a optic glioma when i was 5, but the doctors told my parents not to touch it but to do a follow up MRI a few months later. Two years later i went in for another one, and the tumor had shrunk so much they could barley see it. Im now 15 and they found another one a few years ago but i haven't gone in for a follow up yet.
But better to be safe than sorry i guess always go get a second opinion!!!
My answer would be to have and MRI also, and here's why:
Optic gliomas are more likely to grow before the age of 6 with a peak around the ages of 3-4. My son is almost 6 and we have been doing regular MRIs as well as pediatric opthalmologist visits. His vision at this time is absolutely perfect and as far as the opth. can see, there are no tumors on the nerves.
However, our most recent MRI revealed that his right optic nerve is significantly thicker than it was on his previous MRI. We are fortunate enough to live near a fabulous NF clinic at our local Children's Hospital. The doctor we see is a pediatric neuro-oncologist with an MD and PHd specializing specifically in NF so we're confidant in what she tells us. What she and the opthalmologist told us was that in about 50% of the cases, by the time they discover visual impairment in the opth. office, the damages is already irreversible. If you ask me, that's not worth the risk. We are having a VEP (visual evoked potentials) test next week to make sure the nerve is working properly along it's entire length. We are also having a follow-up MRI at the end of March to re-check the nerve. If the VEP comes back with a problem, or the next MRI shows that the nerve is continuing to grow, we will have to start chemotherapy to stop the growth of the nerve before it is irreversibly damaged.
This is our experience, so I would caution you to at least do one MRI to double check.
Although I passed my vision test in pre school, teachers noticed I was bumping into things (large things- like desks and people). An optomatrist noticed a spot on my optic nerve- and I was then sent to a neuro- opthamologist. This was back before all the hospitals had MRI machines- so we went to the closest one to us at the time for follow up.
25 yedars later I am still dealing with a neuro opthamologist just for follow up. Recieve yearly MRIS under prescription of neurologist, who makes sure everything is looking ok in all fields.
If it werent for my observant nursery school teacers- who knows how long it would have gone unnoticed.
My son has seen an Opthamologist at Children's Hospital since he was diagnosed. Although he has not detected any signs of a glioma, we see him about every 6 months. The opthamologist did suggest an MRI to be sure and to create a baseline for follow ups. Our geneticist was on the same page. My son is only 18 months so they will do the MRI when he is 2.
you will need to see an OPTHMALOGIST, OR NEURO OPTHMALOGIST, to get a thorough exam. An optomitrist does not handle these issues.
you will need to see an OPTHAMALOGIST, OR NEURO OPTHAMALOGIST, to get a thorough exam. An optomitrist does not handle these issues.
My daughter was born with multiple cafe au lait spots on her body back in 1999. She has been followed by a NF specialist since then. We have MRI's, and follow ups every year, until we lost our health insurance 4 years ago when she was 6. At that point she showed freckling on her neck and groin, and the cafe au laits were still showing up. We FINALLY got the State of Florida to help with Insurance after a 2 year fight, and she went for an MRI, the results show optic nerve glioma more on the left than the right. Her Neurologist referred us to a Neuro-oncologist, her appt is in less than 10 days. I am nervous and do not know what to expect. Does anyone know what I can expect? From what I have read it can go in soo many different directions. I feel so out of control of the situation...I don't know what if anything I should say to my daughter, shes now 10 years old ( got the glioma news the day before her birthday) and knows somethings wrong. She's been having trouble in school for years, and feels like she's a bad person for having awful angry fits, usually because she misunderstands whats being said or done... She exclaimed want to die, and ran out into traffic on several occassions, and I have no idea what to do for her! The schools say she has medical disability not learning, and refuse to be any REAL assistance, which its hard to blame them since she is such a HUGE handful!
A neuro-opthamologist familiar with NF can detect a glioma and thickened optic nerves through a thorough eye exam. This is the recommended course of action.
But, we didn't know that when my son was diagnosed. We heard that tumors were possible so we insisted on putting him through the MRI scanner. A glioma was found. So were a few other little minor things like the unidentified bright spots.
Once things are found, doctors are obligated to follow up with repeated MRI scans. And, paranoid parents like me often get upset about things that shouldn't stress us out - like the UBOs. One time a radiologist unfamiliar with NF did the report and listed UBOs as "cancerous precursors." Imagine the stress!
(For us, the MRI scans turned out to be necessary to follow the glioma - which doubled and required chemo. But woohoo, it looks like we can see the light at the end of THAT tunnel.)
MRI scans aren't without risk. Young children do not hold still and need to be sedated each time. And, we don't know the long term effects of those repeated sedations and scans.
The official recommendation by most NF specialists is to have thorough eye exams and only have an MRI if and when tumors are suspected. Some insurances won't pay for a "baseline scan" so often that impacts a parent's decision.
For us, what it boiled down to was one statement by a trusted oncologist. "If it was my child, I would."
I've learned that is the best question to ask. "What would you do if it was your child?"
Good luck everyone!
hello,
i suggest you to go to a neruologist or a specilized doctor. If you live around L.A. i know areally good one.
I think the best bet for you is to do an MRI with and with out contrast of the orbits and i think that what the doctor will suggest you to do.I also think that you should not wait too long so that you can have your peace of mind.
CIAO
I agree with mjmom
I have 2 daughters with optic gliomas. My oldest wasn't diagnosed til it was too late and now her optic nerves are so damaged, especially the right, my other daughter though was caught early and found the tumor before it was too late. It is better to be safe than sorry! Take care and praying for the best!
Hi Donna (sunshinechild),
I have a 3 yr old daughter with an optic glioma diagnosed in january by MRI.
I would have the MRI done even if they use it as a "baseline" mri for future reference.
My daughter has had 3 MRI's so far in her little life, the first did not show any gliomas and that was at 14 months of age. Then when she was officially diagnosed w/nf1 in jan. this year she had the 2nd mri which then found the glioma, she was 2 yrs at the time.
Her glioma is being followed by a neurosurgeon and we also go to ped. opth. every 6 months now to check her vision, which is fine so far. Her pediatric opth. did not detect the glioma. Her 3rd mri this past May showed that the tumor was not growing and no treatment was needed at this time, so now we just wait... that's probably one of the hardest parts.
I would get the MRI to be safe.
Melissa
You really should have your daughter checked by an opthomologist if you haven't already. An optomotrist might now catch it.
My daughter has NF1. Every year her school does a standard eye test and I would get a letter saying that my daughter more than likely needed glasses. Everytime I took her to the optomotrist they would say they felt she did not need glasses.
After getting tired of me telling them this, they sent her to an opthomologist through the school (at Sharp, Reese Stealy) and this doctor found my daughter had pale optic nerves which is indicative of an underlying disease. We had an M.R.I. done and low and behold, they found many optic gliomas. It my feeling that she has had these tumors all along only they went undected until last year. Optic Gliomas are typically small, slow growing tumors. Hopefully my daughters will stay small. What the gliomas do affect presently is her field of vision, but it doesn't seem to bother her at all.
My daughter now has an M.R.I. done twice a year and then sees the eye doctor twice a year just to keep a watch for any progression.
You really should have your daughter checked by an opthomologist if you haven't already. An optomotrist might now catch it.
My daughter has NF1. Every year her school does a standard eye test and I would get a letter saying that my daughter more than likely needed glasses. Everytime I took her to the optomotrist they would say they felt she did not need glasses.
After getting tired of me telling them this, they sent her to an opthomologist through the school (at Sharp, Reese Stealy) and this doctor found my daughter had pale optic nerves which is indicative of an underlying disease. We had an M.R.I. done and low and behold, they found many optic gliomas. It my feeling that she has had these tumors all along only they went undected until last year. Optic Gliomas are typically small, slow growing tumors. Hopefully my daughters will stay small. What the gliomas do affect presently is her field of vision, but it doesn't seem to bother her at all.
My daughter now has an M.R.I. done twice a year and then sees the eye doctor twice a year just to keep a watch for any progression.
One more important thing. Just because someone has NF1, it doesn't mean that they have, or will get optic gliomas. Optic gliomas believe it or not are fairly rare.
However, if you gave optic gliomas, you would have NF1. NF is secondary to optic gliomas. That's the way I understand it anyway.
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Hope this helps
One more important thing. Just because someone has NF1, it doesn't mean that they have, or will get optic gliomas. Optic gliomas believe it or not are fairly rare.
However, if you gave optic gliomas, you would have NF1. NF is secondary to optic gliomas. That's the way I understand it anyway.
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Hope this helps
My daughter saw a neurooptomologist twice in an 8 month period and an optomologist twice and they did not identify the underlying issues with her poor eyesight until they did an MRI. They found extensive gliomas on the optic nerves of both eyes.
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