Has anyone had a loved one diagnosed with a medium to large sized 7th Cranial Nerve Schwannoma? My husband was diagnosed in February of this year. We decided to go with stereotactic radiation treatment and have had to deal with quite a few side effects. One of the complications he has run into most recently is hydrocephalus and recently had a VP shunt put in. Since this type of tumor is rare and so is the complication, we are feeling rather alone and would like to connect with someone who has been there and see if we can get an idea as to what to expect--him as the patient and me as the caregiver.
I searched the site and it appears you are the first one here with that tumor.
You are posting on the "layman" part and there are doctor forums too that you may want to try out.
That being said, side effects from radiation are universal . Hopefully the effects will be transitory. There have been posts on shunts here that you can read and hopefully some of those folks with them will chime in.
I am sorry you have felt alone but while those here have not had the exact type of issue, I hope that we can help you out.
My husband had a 7th nerve Schwannoma too that went from the brain stem, through the auditory canal destroying his cochlea and into his face just short of the lymph node. His was surgically removed in two separate 12 hour surgeries. He then had a 7/12 nerve graft to give his face some movement and tone. He is 6 years post op and doing very well. His tumor did not show up well on the MRI, in fact they told us it was pea sized before the first surgery. My advice is to get a good doctor.
I would look at recent papers on the schwannomas - then see if you can contact the doctor(s) and if they are still accepting patients.
Another route is the NIH and going for a clinical trial...
Just be advised that radiation has a degree of *leakage* so a small lesion on a nerve with a few millimeters of leakage plus a few millimeters of aim - well, that can be ??? At least, from my study on pituitary lesions where they are also small and near nerves - radiation is pretty much a last resort, not a first - unless surgery is simply not an option.
Do a lot of research. There are also different types of radiation as well - some are more sparring of healthy tissue.
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