had translab for approx 3 cm an in june 2005. everything that could go wrong did. i have been chasing multiple issues and great pain ever since. have synkenesis headache major eye issues and balance probs. post 18 and a half surgery, sprung csf leak etc and was in hosp 10 daysflat out and monitored every which way. 9 years post surgey still chasing for some comfort and normalcy. for the last 5 years have gotten botox injections every 3 mos, corticosteroid shots in trigeminal nerve every 2 mos and cortico steroid (kenalog) shots to eye for trochleitis every 3 mos. worked fairly well for this duration. kept pain level at about 4. annoying and hurtful but manageable. uh oh, suddenly shots arent working so... sought out other ways to deal. went jan 14 and had gammaknife to kill part of trigeminal nerve. worked like magic and restored symetry to face but in chain reaction made eye worse and jaw/teeth (what few left) very bad. has caused serious eating problems and much pain. 2 days ago had my last bottom molar extracted (infected under jaw) to prepare for a 2 year grueling jaw grafting reconstruct. seems the prolonged use of cortico steroids detereorated the bone way too much. almost nothing left. also on steroid drops for eye. apologize for typos but, cant see too good. go may2 for the final consult with oral maxillofacial surgeon and will get my first surgey date and a clearer picture of what will go on now that the last ifected molar is gone. also still working on trying to find out what to do with eye. eye surgeon not sure if there even is anymore that he can do. panicky afraid and sooo underweight and little to no support due to lack of understanding from my significant others. i am breaking more than i was already broken. tried back when to form a support group in my area but, ana angered me by saying the numbers in my area did not warrant one at that time. contacted veda too but they did not respond back as they said they would. on the up side, went back to neuro balance therapy and am doing better in that area. dont fall as much and learned new techniques.however, after the gammaknife got 2 new sounds that occur randomly and one is so bad it knocks me on my butt literally.( always have random electronic type sounds in head since 2005) feeling for the first time very weary of chasing and thinking for the first time that maybe i should not have even had the surgery and just died in 2007 like the docs said i would. scaring myself. its all so complex and overwhelming. if someone out there knows the name of that book and author so i can get it tell me please as i am desparate for someone who understands this hell. also if any of you on the forum live in lackawanna county n.e. pa. please contact me as i would like to talk about things. desparate at this point because no understanding even after 9 years. sooo tired of chasing my own tail. anyone have words of wisdom?
