John has had all the tests because of his increased intracranial pressure. He even had a spinal punch. He does have increased intracranial pressure but all tests were negative for disease. This appears to be idiopathic intracranial hypertension with the only known cause the ligation of his juglar vein. We are now waiting to see yet another doctor to decide what if anything to do about it. Our ophthalmogist is concerned because John's optic nerves are swollen. He wants John on medcine to reduce the pressure. However, the medicine has side effects. We want to talk to someone at Moffitt center to get their opinion about watchful waiting.

As to his epiglottis, the new swallowing study done at Moffitt center was very incouraging. They said nothing about a "reduced epiglottis" but rather that his swallowing was restricted because of the radiation. We will go to Moffitt once a week for therapy. They are going to use bio feedback with him as well as exercises etc.

We will let everyone know if there is any information that the group can use. Good luck to you with your swallowing Danny.