Hi Everyone,
Thanks for your support in this ongoing issue. The responses I've received from my other posts have been so helpful and generally positive.
I'm really stressed out and angry right now about one issue with my son. Since the possibility of NF was first mentioned back in January, everyone has told us he needs to see an opthamologist. Four seperate doctors have sent referrals to your opthamalogist.
I finally was able to contact his office last month only to discover that they couldn't find his file.
So I went back to my GP to have her put the emphasis on him being seen soon. Then I discover an appointment had been made, but we missed it because we didn't know about it! They called my GPs office with the appointment at just the time when one secretary was leaving and another starting and the appointment was never communicated to me.
So off goes another referral. Off I go to the opthamologists office again to stress that he needs to be seen soon. They called my husband at work today to say he can be seen in mid-november! I can NOT wait that long. I'm so worried about an optic glioma.
What I really need to know is if there any warning signs of a glioma. I've noticed changes in his left eye, he has swelling of his eyelid (ptosis) and I feel like his eyeball is protruding a little. His left eye just looks bigger than his right. And it wasn't always like that. He's had the ptosis for about 2 months and I've noticed the bulgy look in the last month. Are these outward manifestations of a problem such as an optic glioma? Does anyone know? If it is I'll pay the money to fly to the states and get him looked at if that's what it takes.
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Are there signs or symptoms of optic glioma to look for?
- By Hope2BMD
- Posted June 24, 2009 at 1:16 pm · 11 replies
- In NF1 and children
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11 replies
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- Newest first
- By sweetiecat
- Posted June 24, 2009 at 1:49 pm
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I'm sorry, I don't know much about the optic glimoas. I do know however, that in my case my left eye is bigger then my right and my left eye is slightly higher than my right. My neurologist told me this is the norm with nf. Sorry I can't be more help to you. I will follow this post so I can learn more too.
- By CheyennesMom
- Posted June 24, 2009 at 3:35 pm
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My daughter has a large optic nerve glioma. It was first discovered b/c she had decreased vision. Only after she complained, did we notice that she has proptosis (bulging) of that eye. She is 10 and has probably had this tumor for years. We never knew how bad her vision is in that eye until we had her tested. Children compensate.
It's not right that you can't get an appointment until Nov. I would go to another MD. Good Luck.
- By digitaltoon
- Posted June 24, 2009 at 4:36 pm
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We just found out our 4 year old daughter Anabelle has an Optic Glioma. If you google it you will get a wealth of info. We had her do an pediatric eye survey where they picked up the fact that her left eye was very bad and she had depth perception issues. She had a scheduled MRI and that picked up the Optic Glioma. I think if you are worried you need to contact an NF Doctor in your area and schedule an MRI.
- By Margaret829
- Posted June 25, 2009 at 8:35 am
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I have optic gleomas. The biggest tell was that no matter how the Dr.s tried they could not correct my vision very much. I was diagnosed at 9. Several Dr.s put my lower vision results to my not knowing my letters. The gleoma is under control, but I can't get my vision corrected enough to drive.
- By stitcher
- Posted June 26, 2009 at 6:36 am
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Hi,
My daughter, when she was 2, I discovered she had optic giolma,
her left eye was slightly larger than the right,,,,,by the time I found out what was wrong,,, the tumor had squeezed the nerve so much she was almost blind in her right eye,,
she is now 26 and she's totally blind in her right eye,,,What I'm trying to say,
don't wait,,, keep calling and bugging these Dr.'s till you can get in,,, things today in medicine is alot better than 26 years ago,,,,
My daughter adapts wonderully,,, with her good eye,,,,
have a blessed day
- By RyanC
- Posted June 26, 2009 at 9:29 am
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Protuding of the eye and vision loss can be a sign of an optic glioma. My son (4) has one on each optic nerve with no outward symptoms. Ryan had cyst removed from about his eye ( nothing to do with NF) but that surgeon referred us to a Pediatric Neurologist after seeing his cafe au lait spots and at that time no knowing if the cyst was a fibroma. Anyway the Neurologist recommended an MRI. An MRI can detect the gliomas, show the size, the location. This may be the best option for internal monitoring. My suggestion is to find a dr whose focus is NF ( not a gp) and make an appointment. I believe an opthamologist can check the vision, but I'm not sure about detecting optic gliomas without MRI. Good Luck
- By dragonfly1980
- Posted June 26, 2009 at 5:46 pm
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A optic glioma can been seen by a opthamlogist. My daughter was 3 when she was seen by one and she noticed it first. She is seen by her every 3 to 6 months, because her's keeps growing. She also has mri's about the same. I would say get a referral to the neruologist. They will be able to help you out more. With the MRI's you might have to do a lot of serching beacuse not to many places will take a child that has to be sedated. I had a hard time finding one and now I have to travel 2 1/2 hours to get her a MRI. My daughter has lost half her vision in her right eye due to the optic giloma. I would keep pushing to get it checked out.
- By AmieCN
- Posted June 26, 2009 at 6:02 pm
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I will be reiterating what everyone else has said BUT
My 14 year old who is now highly aware of her appearance began complaining about her eyes being different sizes. I wrote it off for a long time. She had bad vision in that eye, but always had (I also have bad vision) and had a congenital cataract in that eye - I felt like I could explain it away.
She bugged me until I took her in to the eye Doctor (neuro-opthamologtist). They were able to look with microscopes, mirrors, and bright lights and confirm that it was an optic nerve glioma.
They said that it is in-operable due to the fact that it could spontaneously (dont you love that word) dissolve, never grow, or grow very slowly over a long period of time...and operating on it would cause definite blindness & a myriad of other problems. They said if it becomes something other than than a cosmetic problem they will do chemo.
- By yvonnefoong
- Posted June 28, 2009 at 8:28 am
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Hello Hope2BMD
Your son's eye problems are developing quite fast, judging by what you wrote. Optic Gliomas grow very slowly, and symptoms progress slowly too. There might be chances that your son is having other problems.
I did not see your older post so I may not understand the situation fully. Please excuse me if my assumptions are wrong.
I have an Optic Nerve Sheath Meningioma that has been successfully treated. I believe any doctor who can look into our eyes with an Ophthalmoloscope will be able to see the mass behind the eyeball. Doctors initially described my condition as a thickened optic nerve because of the mass effect. A radiologist will also spot the mass with an MRI of the brain orbit. But the doctor who ultimately diagnosed the mass as an ONSM, wasn't an Ophthalmologist, but my Neurosurgeon at House Clinic.
Hence, you can work with other doctors that your son needs to see in figuring out whether the tumor is an Optic Glioma. Not necessarily an Ophthalmologist.
Since you said that your son's eyelids have started to bulge very recently, there is more reason to alert the Neurosurgeon because they are ultimately nerve specialists.
I hope this is helpful.
- By Raney
- Posted June 30, 2009 at 7:12 am
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My daughter was in prep age 6 when she was first diagnoised as having an optic nerve brain tumor. Her tumor is where the optic nerve crosses over. She was having migraines and was asking her teachers if she could stay in side during play time as her head hurt and was complaining of blurred vision. I took her to get her eyes checked at an opthamologist to see if she needed glasses. Within an hour we were refered for a CAT scan and then a day later having an MRI at the childrens hospital in Melbourne. She has the leicsh nodules in her eyes and the brown freckling on her pupils. The doctors are always asking if Kaitlyn will let student doctors to see her eyes as she has them quite serverly. She is slowly going blind and will possibly never drive a car.
We have 6 monthly MRI's, see eye specialists every 3-6 months as well as the oncologist and now she has been diagnoised with scholiosis and has to wear a full spinal brace (like a solid plastic corset) until she is 17 (she is 14). Kaitlyn also has learning disabilities.
My 10 year old daughter also has NF an optic nerve brain tumor, scoliosis.
- By motherof2withnf1
- Posted July 14, 2009 at 12:59 am
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my son was 5 when he was diagnoised with having an optic nerve brain tumor, along precosious purberty this is because the tumor is inter twined at the center where the optic nerves and the puteraty gland meet. My now 9 year old has been under going shots every three weeks to help with the growth and has been going for MRI's every 4-6 months and continues to see the eye doctor every 6 months, and when my daughter was 3, I made the dr give her an MRI I told them about my son and they gave her one at that time she was fine, now she is 6 and has a small optic geloma brain tumor that is starting and the docors are following with mri's and tell me that all they can do is wait and see what the tumor does.
I have been down this road already so if you have already gotten a closer date for your son's appointment then I wish you luck but if not then I would push the issue with them to get a mri and nuro eye appoinment.
good luck hope things work out for you
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