Hello, I am new to the ON group. I formerly posted on the NDPH group because my youngest son who is now 18, was diagnosed with supraorbital neuralgia 3 years ago and had the nerves removed in 2008 and a second surgery in 2010 to remove neuromas. Unfortunately, he is now no better. Several explanations have been "the pain is now in the cortex", this is "phantom pain", "nothing more surgically can be done". He now has a diagnosis of "atypical facial neuropathy" and is having a motor cortex stimulator implanted on Monday. As for my middle son, who is 26 now, he grew up with some migraines, but very manageable until about 2 years ago after a car accident. The pain became more in the back of his head starting in his neck. He has been through many treatments the past 2 years and is now considering decompression surgery as the last resort and his doctor also supports and recommends this as he himself suffers from ON daily and is also considering ON excision for himself so he has taken my son under his wing and helped him as much as any doctor could the past 2 years. His doctor may have the surgery done by Dr. Perry in Texas but we are still unsure as to who we want to do the surgery. We have found that having 2 sons in the family with a similar conditions, tends to "scare" them off pretty quickly saying "if surgery did not help one it will not help the other" which is totally not true at all. They are both very different in origin and causes.You would not think any rational, educated doctor would have this mindset, but they do. We are strongly considering Dr. Perry for the surgery. I had heard that patients have to make 2 trips to Texas and be seen by the neurologist first and then a second trip to see Dr. Perry. Is that correct? That is something we want to try to avoid if possible as my son has been seeing a local neurologist and tried many, many drugs and treatments so there is no need to see another neurologist. I hope learn more about this surgery and outcomes when I have more time to read some more posts from this group. Debbie |
