Ear Pain

[hjtru]

Here's one that I haven't read much about.  I am 3 months post proton therapy and have been getting ear pain on the tumor side.  I was not expecting that!  Started out as twinges of mild pain which came and went in a moment.  Not too big a deal.  Then it got worse -- repeated twinges of pain over longer periods of time.  Still not unbearable, but very annoying.  I called my doctor and once we ruled out some kind of ear infection, she said it was probably from tumor inflammation.  She prescribed a very low dose steriod and it has almost completely gone away.  The only time I get any pain is in the morning when the previous steriod dose is on its last legs.  So, this is so far a good news story, but I figured I'd post the experience since someone else might experience similar symptoms and wonder what to do....

[skipg]

During my constant research I spoke to a proton specialist and he recommended that AN patients sleep with a 5% elevation of their head. Reasoning is that while sleeping the brain can swell naturally up to 1 cm. Elevating the head reduces this natural swelling and reduces pressure in the tumor area. How did he discover this? He was treating brain tumors on or near the optic nerve. Some of the patients were experiencing color blindness when they woke, by noon the color had returned. By sleeping with elevated head the color blindness did not occur. He has recommended AN patients go to bed, bath, and beyond and buy a set of bed raisers and put them under the head board. As a side note he was treating these tumors with radiation and warned the patients of only a 15% success rate in preventing blindness, when he went to Proton Therapy the success rate went to 50%. Could not find any proof to back up this claim. I am going to buy some bed raisers to try. This may help with pre and post AN treatments. Worth a try.