Undiagnosed Symptoms Community
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Avatar universal

Optic nerve glioma

Hi I have a son how has 3 brain tumors but that doctors don't know what they are. Hamartoma, glioma -(possible neurofibromatosis which he only has the optic nerve glioma to back up this one nothing else), and sarcoidosis are what they are saying thay are considering he also differenlty has precocious puberty associated with hypothalamic region lesion.  The thing that is confusing the docters is Jake has nothing wrong with him no headachs no vomiting, nothing so the doctors are confused and can't tell us what it is or what to do but we'll just wait and see do more MRIs in 6 months and for me I feel they are not doing enough.

I do have one big question do lumber puntures rule out cancer in the brain do they show up tumor markers in the brain as they were looking for a Germinoma but have said that the lumber puncture came back fine.  I have read in other articals on the internet that tumor makers can not be found in lumber puntures  regarding brain tumors is this ture????  I also thought they should treat all these thing with radation as they can't be taken out as it is to risky....

Thank you for your time and looking forward to reply

from one very tired and worried mother...
3 Responses
Avatar universal
Jake is 9 and know he has the optic nerve glioma on his right eye and his vision is perfect so far.....  Do you now anything about lumber puntures?????  

I have been staying calm but this has been going on know for 3 and half years it started with the tumor in his hypothalamic area which has  caused precocous puberty and this has come under an HH. Then a year and half later they did another MRI and  found the one in his optical nerve that has grown 2mm x2mm  in the last year and this year found the new tumor in his brain tissue cant't tell you were as the doctors have'nt talked to us problerly....  So yes patiance is a vuture but how long must one wait????

Our son knows a wee bit but as parents we do shelter him from alot as not to get him to worried and to see what is going on without any promiting.  We think that as a kid he should not need to worry about this sort of stuff till needs be!
Avatar universal
Sorry forgot to say he does not wear glass and he is the height of a 12 year, not over weight.  He is on medication for his HH tumor to subpress the precocous puberty...  That is undercontrol.
Thank you for your imput though..  Have a great day you post lost of good information in your feed back of what I have read thanks..
Avatar universal
Our daughter at age 9 was diagnosed with a supra cellular germinoma between the pitutary and hypothalmus.  She really didn't have headaches or any of the other brain tumor symptoms.  Her major symptoms were excessive thirst and excessive urination.  She underwent tests and then MRIs without and with contrast.  Our daughter is now 27 years old.  I can answer any questions that you may have regarding germinomas.  They are a pretty elite group of tumors.  The radiation oncologist told us that this type of tumor only appears about 14% (back in 1989) and then where her's was located even less.  Please contact me with any questions that you may have if you like and I will try to answer them for you via this website or my regular email (***@****).

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