1950s radiation baby

[james e]

I was born in 1949, and like most kids back then I had my tonsils removed. My adenoids later became enlarged and doctors started using x-rays to treat and  reduce the size. I am guessing I was about 3 or 4 years old. I remember the doctor taping lead shields over my eyes, lowering the x-ray machine to the side of my head and neck and then stepping out of the room. I treated at least twice and perhaps more than that.

In 1995 a tumor was found on my thyroid, but not cancer. Half my thyroid was removed. In 2009 an MRI found an acoustic neuroma on my right side and it was removed March 2010 in a translab surgery in Houston. I have been wonky 24/7 since that time.

I had my MRI sent to the House Clinic prior to my surgery, and Dr Friedman said he thought he saw something on my left side also, but was not 100% sure. Fast forward to today, and about a month ago my left ear began feeling full and my wonkyness in ramping up a little, and my hearing is going down hill.

I had an appointment with an ENT in Dallas last week and told him I was exposed to radiation as a young child. I had an MRI done last fall and there was no regrowth on my right side. The ENT is collecting all of my past MRIs, hearing test and surgery notes.

Here is my question. When they do a follow up MRI do they just shoot the side where the tumor was? Has anyone here been exposed to radiation as a child. My initial diagnosis was bi-lateral acoustic neuroma but I have no other tumors, that I know of other than my original AN and my thyroid. I am having some fear that I may have a second AN due to the radiation and not because I am NF2.

[ANSydney]

All the MRIs I've had and those I've seen on the web, look at the whole head. I haven't seen one localised to one side.

[CHD63]

Hi james e .....

I had "radium treatments" to my nasopharyngeal area following a tonsillectomy/adenoidectomy as a kid.  However, my treatments were rods inserted into my nose, not an x-ray machine.

The only known cause for ANs is large doses of ionizing radiation, which we both undoubtedly had.  Whether that is the reason we developed ANs, I do not know.  All of the doctors who treated my ANs expressed their belief that it was most likely the cause in my case.

My original AN grew back after removal, but after the second removal in 2011, so far my MRIs have been "stable."

MRIs are whole head, which is a good thing, given our histories.

Best wishes.

Clarice

[james e]

Thanks. I'm just afraid I might have another one on my left side, not from NF2, but from the radiation.

[lark114]

I am 56.  I had a concussion around age 4 and had a skull xray.  I'm guessing that was 1965.  I was diagnosed with AN 2 years ago and had it removed.  My followup MRI is fine.  I have also wondered if the head xray had anything to do with my AN.   I was told the radiation doses back in those days were much higher than today so I am convinced it caused it.  MRI's see the whole head, not just one side. 

[james e]

Went to a NF2 doc, had a MRI, and found a small AN on my left side. Watch and wait right now. Getting a CT scan because they found a brain aneurysm.

I'm not NF2 but the radiation did a number on me. Will probably meet with neuro doc about the aneurysm.

[CHD63]

Hi james e .....

So sorry to learn about you developing another AN.

When Dr. Claus (AN researcher from Yale) spoke at the Cincinnati ANA Symposium in 2011, I was able to speak with her privately. She said their research so far shows that those of us who had large doses of radiation as children were not only at greater risk of developing ANs but also other skull-based tumors, such as meningiomas.  Lucky us! 

Please keep us posted on the aneurysm, as well.

Thoughts and prayers.  Clarice

[james e]

Good luck...no aneurysm. Just W&W on the AN.

[CHD63]

Good news!!  One more thing to check off the "worry list!" 

Clarice