long term effects of cranial radiation

[919]

Hello, Hoping to learn if anyone has had any luck research on the long term effects (>10 years) of cranial radiation. I had 6 weeks of RT to treat a benign pineal germinoma, and fortunately no regrowth after my last MRI. However I have noticed on mst MRI's the mention of mild chiari malformations, the lengthin cm I don't recall and would have to go dig up.  But since Chiari Malformation can be a result of hydrocephalus due to tumors, I was hoping this would be a good forum for discussion on the long term effects of treatment of brain tumors.
Thanks for your time,
919

[selmaS]

  Hi and welcome to the Chiari forum.

Chiari is a congenital condition so many of us have dealt with symptoms our entire life...not until the advent of the MRI being used for diagnosis for conditions other then cancer and the cost came down for more widespread use...most were not DX'd with Chiari until after they passed...

Not everyone with Chiari will need surgery....Chiari symptoms cycle,, so we can have times when they flare and we just can not take another minute and then we can go months or even yrs and feel great....this makes the DX very difficult as the symptoms are considered to be from other issues such as migraines , anxiety flu...etc....so it can take time to connect the dots....

  I got my DX at the age of 48 had surgery a 2 months b4 my 50th birthday.....and do not regret it at all and if needed would do it all over again.....

Finding the right Drs is key !!

We do have a list of Drs for your use to research Drs the list is not a referral nor an endorsement for those on it...it is only meant to be a tool, a starting place....

Educate yourself on Chiari and ALL related conditions so knowing when you found the right Dr is easy and you can trust your judgement.....

Know you are not alone.

[nannaplusmoma]

In November 2014 I was diagnosed with a 15mm Chiaki malformation.... I only suffer some side effects nothing life changing as of yet. How will I know when I need surgery? Or will I ever need surgery? Very scary having a condition like this I am young oh btw, I was born with this informality.I dont know where to research as of yet

[Shane99]

A 5mm herniation is on the border of true Chairi 1 (rather than Cerebellur Tonsillar Ectopia - or Chiari "0").

You'll need to follow up on that and make sure it doesn't continue to grow. And you should have a spine flow MRI to make sure you don't develop a syrinx (CSF flow blockage).

[919]

Shane99, I apreciate the comment, I incorrectly assumed one was the result of the other. It appears that my MRI report post RT was just noting the observed 5 mm of cerebellar tonsillar ectopia below the foramen magnum, and that it was not a result of the tumor or the radiation. I'll have to read up some on this now that I am here though. :)

[Shane99]

" . . . But since Chiari Malformation can be a result of hydrocephalus due to tumors . . .

I'm unaware of the cause and effect here. Chairi can lead to hydrocephalus, but I've never seen evidence of the other way.

[selmaS]

Hi and welcome to the Chiari forum.

I am not sure if ther are that many here that have had a similar situation, but if u do not get a responce on the effects of the radiation u may want to try the brain/pituitary forum
here on MedHelp.

I do hope we have some member here that can help u.........please do try and find ur report with a bit more info.

I hope u find this forum as informative and supportive as we do. : )

"selma"