Optic nerve glioma

When my daughter was born it wasn't until she was about 2 weeks old I noticed she had a ''birth mark'' on her thigh. Then she started to develop more and more spots as the months went by. When she was around 10 months old she was diagnosed with NF1. Everything was fine until she was 2 1/2 and she started getting headaches. At first she only had a headache about once a week. I thought maybe she was fighting a cold/flu or something. I didn't start to get worried until she started getting the headaches nearly everyday and would cry and make me lay with her with my hand over her eyes. Her behaviour became terrible! She became very moody, barely sleeping at night. It became normal for her to go to bed and wake up a few ours later and be awake from midnight till 7 in the morning with headaches. Finally she had an MRI done just before her 3rd birthday which showed she had a mass of tumours ( optic nerve glioma) behind her right eye. The doctors were unsure as to why she was having headaches as her tumours weren't creating them. The put her on Prizotifin which helped her head aches. She started on chemo straight away. Her vision was fine at the time as far as we knew but started to disintegrate in her right eye after a few months after chemo had started. The doctors were worried that her vision loss might be due to the chemo she was on. Her tumours had shrunk a lot after 7 months of treatment so she was taken off the drugs to see if her vision got any better. She had eye exams every month and MRI scans every 3 months. Her vision has stayed the same since being off the chemo. The scans were showing that the tumours were not changing in anyway until her last MRI a month ago. It showed she has another tumour along her right optic nerve that has started to grow. We're now waiting to hear in the beginning of July if she will need to start the chemo again. As much as we don't want her to have to have chemo, we also don't want the tumours to grow anymore than they are. She was off all medication for several months including her Prizotifin. She hadn't complained of headaches until the last few weeks. I mentioned it to her oncologist who has now put her back on the Prizotifin and has told us to bring her in if she is in terrible pain with a headache as the tumours are not the cause and she would need an emergancy CAT scan to see if it is fluid causing pressure on her brain as that can happen with NF1 patients. I am new to this web sight and find it comforting to see we are not alone with this. It sure feels like it sometimes. All the best to all of you out there battling this scary disease.

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Hi, I have twin 2 yr olds with NF1.. my daughter has a massive plexiform tumor on her right side from brain to shoulder and had her right eye removed in October of 2011. My son has optic glioma's on both nerves, luckily they are stable as of now. It isn't easy, the constant worry, the helplessness you feel when you can't help their pain.Knowing that this battle is lifelong doesn't ease the mind when all you can think about is whats going to happen next. We pray and try to keep Faith. we will keep your daughter in our prayers as well:)

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By ilonalex
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Yesterday at 10:28 pm
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Hi, my 4 year old has optic gliomas on both sides and chiasm with extended tumor. We finish chemo just before Xmas and Max doing well. There is no lost of vision but half way thru chemo the optic nerve did have a damage from 83 to 79 points, ophthalmologist explained, that even though the chemo stops the growth of tumors itself it hardly unlikely to stop blood getting into gliomas so in some cases even after chemo gliomas still active and still do the damages and vision loss one of them. I also never heard that vision could be lost because if chemo, is in it one of the reasons why we going for chemo?
The either thing that i would like to tell you guys, few month ofter we started chemo, one of parents that I've met in oncology dept, gave me the number of Kinesiology neurologist practitioner she was looking after his daughter. Max had strange reaction on chemo drugs when we started and we basically use to live in a hospital until i've seen this practitioner, i was very sceptical as what she can do for us but i was sick of the oncology team who use to say that Max Just getting infection, and funy, always 12h after the Carboplatin drug. Anyway after first visit to kinesiologist we never been admitted to the hospital again, we've seen her every 2 weeks and she helped Max to adjust to chemo drugs AND she worked on his tumors and production of neurofibromin. After third (3monthly) MRI tumors started to shrink, 4th MRI two gliomas were with no blood supply and tumor of 16mm reduced to 12mm. Oncology team was so happy, they were telling we are one of successful stories for NR1, they git all the credit for that, but i do believe this practitioner is the one who help us to get there. We still see her every 3 weeks i hope she will over turn NF1 pathway, and also we see Chinese therapist and Max is on some herbs.
Good luck to us all

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my son had an optic glioma that was treated with radiation. He screamed day and night when he was in a lying position and never seemed content. Because he probably was born with it doctors just blamed colic. With much persistence a doctor finally found he has an optic glioma. Doctors told me the tumor doesnt cause headaches but after the radiation a while later he slept through the night and the screaming stopped. The extremely difficult behavior became controllable at about 19. I thank g-d each day for surviving and today he is great with , he will soon be 30 .

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I so sorry to hear that mheather28. I can't imagine how difficult it must be to have 2 little ones fighting such a difficult battle, lots of strength and love to you and your family :( And what an incredible experience you have been so lucky to have ilonalex :) I am so pleased for you and your son. mom07 That's so great to hear how well your son has doing.
An update on Alyvia. At her last routine MRI scan it showed that another tumor has become active so she is now on chemo again. Vinblastine once a week for a year, or however long her body can hntandle it for the Dr's said. She has just had her fourth treatment and (touch wood) so far, so good. She has had no side effects and her bloods have stayed in a good way :) Her hair is still thick and curly with no signs of it falling out yet.

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My son has optic gliomas on both optic nerves as well . We are on our third type of Chemo. The doctors say he had lost vision and is blind. What type of chemo we are on avastin which kills the blood cells that feed tumor. Hope all works out.

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Does anyone else have any experience with vinblastine? Alyvia was on Vincristine and Carpoplatine before and it did knock her sideways sometimes. Her hair started coming out nearly straight away. She had loads of fevers which meant lots of sleeps in hospital. But with this chemo (vinblastine) she seems fine. I just want to know how well vinblastine seems to work on the tumours as the ones she was on before seemed to really shrink them.

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Blake was on that but it quit working for him had no problems with it. He was stable then there was growth so we switched to t
he Avastin.

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