My sisters tumor grew pretty big, lost her sight completely and is currently in surgery to get a big chunk of it removed. It is probably was also the cause of her "waterhead". Chemotherapy didn't help, after the surgery they want to do radiation therapy. Its all so complicated. Thank you for your video.
@MustyBastard
5 ай бұрын
I had surgery 5 or 6 times before I was 6 for mine on mine. Vision isn't the best, but I can still drive and ride my bike. Sorry for her lost. Having NF and optic glioma is bad enough. I could never imagine being completely blind. Being able to drive and ride my bike is the only left in this world that I have left.
@sowhat6401
2 жыл бұрын
Thank you so much for your Material. Is it also possible for adults to have NF Type1 according to your experience? Kind regards from Germany
@MustyBastard
5 ай бұрын
I got mine and optic glioma through a genetic mutation. No one in my family has it. I am the freak of the family per se.
@shalomtheboss6655
Ай бұрын
Me to 😂☹️
@montecrisco-uh9uf
Жыл бұрын
I have NF and have been diagnosed with optic never atrophy is this always caused by a gliomas?
@sareenamorrow4150
Жыл бұрын
I have NF1 and an optic glioma.
@dannix136
5 ай бұрын
What is you're experience with it i have a optic glioma and had a biopt but no nf1
@sareenamorrow4150
5 ай бұрын
@@dannix136 I haven't had any treatments or surgeries for it, when I was younger the Drs would just schedule MRI scans to be sure it wasn't growing or something. I do have to wear glasses though.
@howtoenterprise8275
2 жыл бұрын
Thanks for your valuable information Could I share my baby's MRI FILMS for conformation of optic nerves glioma,? At CMC INDIA, IT WAS identified
@govindraj-gt6sw
Жыл бұрын
Sir my kid also having optic nerve glioma , so I need to cantact you
@bipin3651
8 ай бұрын
How it can be treated?
@MustyBastard
5 ай бұрын
I had a bunch of surgeries (5 or 6) before I was 6. Been bullied my whole life more so for my optic pathway glioma than I have ever been for my NF. I know they also use chemo. In my case, the surgeon removed my eyes from their sockets and cut away at the tumors bit by bit. I remember looking in the mirror after one of my surgeries and my eyes were filled with blood and were bright red - like you would see in a horror movie. Pretty freaky for a 6 year old
@syarafinamalek2668
6 ай бұрын
281223
@biyaherongsano4449
Жыл бұрын
Hi doc I'm Jonas my son have nf1 and optic nerve also is there any possible way to treat my son..my son is 5yrs old .I'm frm the Philippines .any advice doc regarding my son health
@Breannastump
Жыл бұрын
Hi I also have nf1 and optic nerve tumor, I did chemo therapy for 2 years (I was 12) (I’m 17 now) the chemo didn’t get rid of it but stoped it from growing (it is possible that it could start growing again) I was also given the option to get surgery to have it removed but I was 12 and to scared to get surgery so I turned it down, your son should be having a MRI every 3 months (just like me), maybe ask his doctors what they think about him getting surgery,and chemotherapy.
@govindraj-gt6sw
Жыл бұрын
@@Breannastump hi can I contact you?
@govindraj-gt6sw
Жыл бұрын
@@Breannastump my nephew 16 months old baby boy suffering with these deseas...please suggest the best treatment to me
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