My daughter was dx'd with TN after an ear infection that went into mastoiditis in July 2011. Finally had pain management doc tell us it was TN in September 2011. She had all of the typical triggers: wind, cold, chewing, laughing, touch, brushing teeth, etc. She also has certain sounds that will trigger an attack. Her first MRI showed a very obvious compression. She tried some of the usual meds and got some relief with Tegretol, initially. We saw a neurosurgeon who specializes in TN and MVD's in November 2011. We decided to try the MVD and she had her first one in December 2011. She did great with the surgery and the doc said there were two compressions, along with scar tissue. Every time he tried to clean the scar tissue, her vitals dropped, so he closed her head after cushioning both compressions. She was OK for about two weeks, and then the pain was back! It was as if nothing had changed! She was hospitalized for pain mangement and another MRI was done. It showed a possible 3rd comrpession. We went back to neurosurgery. He said he could do another MVD and clean up the scar tissue. She chose to try it again. He did find a third compression and was also able to clean up the scar tissue.
After the second surgery, she was pain free, but numb, for about three weeks. Then she developed a reaction to the sutures and had to be opened up again to have them removed and replaced with a different type. The incision continued to not heal well. She ended up back in ER with neck pain, increased pain in face and head. In the meantime, the TN pain came back. She was having about 10 attacks a day. She was taken back to OR where they found she had MRSA infection. She is now on at least 6 weeks of antibiotics.
We are now 4 weeks post-op from the surgery that found the MRSA and she is getting 20-30 attacks a day! None of her meds have changed. We now have another appointment to see pain management doc and will be seeing a different neurologist.
I'm looking for anyone that can maybe shine a different light on this! She is beyond desperate! She has missed her entire junior year of high school, having a tutor at the house every day, when she is able to work.
This child needs a ray of hope! Is there something more I could be doing? Somebody else I should be talking to? ANY info would be appreciated! I have read alot of the stories on this site and am continually impressed, beyond words, at the courage and determination of all of you! I pray for healthy, pain-free, days ahead.