We spent the day running from one appointment to another.
Thank goodness three appointments were in the same building.
Here is the news:
The things we learned were pretty overwhelming...
Chad's surgery is not scheduled yet, but he will likely have no hearing at all or very little. It is possible to get an implant that will allow him to hear some but only if the nerve is still viable.
Chad has two tumors, they are at the brain stem but are growing on the auditory nerve. One is large (left ear) and one is small (right ear). These tumors have to be seen as separate because they are, the surgery for them and the chosen treatment for them would be separate.
The large one is already pushing on his brain. This is also the ear that Chad hears the best with. Chad was given two options for surgery yesterday. Regular surgery or what's called a Gamma Knife (Radiation) surgery.
Click this link to Learn more about Gamma knife Radiation.
It is essentially lots of beams that individually are harmless but when they cross they burn the tumor. This surgery he has a greater chance of keeping his hearing but he will have the tumor stay in his brain. The long term for this type of surgery is the tumor staying in his head, this could possibly become cancerous. Or the tumor starts to grow again and the radiated tumor is like a marshmallow being put in a microwave, after it cools down it hardens and becomes sticky and attaches to other parts of his brain and those are difficult to remove (and also can become cancerous). His hearing would decrease over time with this type of surgery, maybe within 6 mo- a year or two. So you don't really know how far it will go, you just get to wait and see. Chance of hearing loss 75-80%.
Regular surgery you know immediately what the results are and you can move on, but it's riskier surgery, recovery is more difficult. Chance of hearing loss 90%.
He can do surgery on the large one and wait and "watch" the other one, he can "watch" both. If you choose to wait and do surgery when the tumor grows more your chances of success goes down.
Chad is pretty sure he is going to have regular surgery, so we expect a long recovery, we are hopeful for a cochlear implant but if not, we have to learn how to live with a deaf/hard of hearing person, he will learn how to be a deaf/hard of hearing person. Church will be frustrating. He will be learning sign language (as we all will). His job choices are limited. School is limited with someone who doesn't know sign language yet. An interpreter would be pointless until he is up to speed which will take time.
It is essentially lots of beams that individually are harmless but when they cross they burn the tumor. This surgery he has a greater chance of keeping his hearing but he will have the tumor stay in his brain. The long term for this type of surgery is the tumor staying in his head, this could possibly become cancerous. Or the tumor starts to grow again and the radiated tumor is like a marshmallow being put in a microwave, after it cools down it hardens and becomes sticky and attaches to other parts of his brain and those are difficult to remove (and also can become cancerous). His hearing would decrease over time with this type of surgery, maybe within 6 mo- a year or two. So you don't really know how far it will go, you just get to wait and see. Chance of hearing loss 75-80%.
Regular surgery you know immediately what the results are and you can move on, but it's riskier surgery, recovery is more difficult. Chance of hearing loss 90%.
He can do surgery on the large one and wait and "watch" the other one, he can "watch" both. If you choose to wait and do surgery when the tumor grows more your chances of success goes down.
Chad is pretty sure he is going to have regular surgery, so we expect a long recovery, we are hopeful for a cochlear implant but if not, we have to learn how to live with a deaf/hard of hearing person, he will learn how to be a deaf/hard of hearing person. Church will be frustrating. He will be learning sign language (as we all will). His job choices are limited. School is limited with someone who doesn't know sign language yet. An interpreter would be pointless until he is up to speed which will take time.
The rest of my family will be having a certain type of MRI called (IAC) it's a special kind that takes 2 1/2 hrs. This is to check and see if anyone else has NF2.
Today we heard of a sign language class that started last week in Sequim, that might be a resource.
If you know of any resources let us know!
Thanks
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