I agree with KC , I dont see what age has to do with it...find someone who specializes in TN, and if you have to travel, its worth it. I traveled 3 hrs to see the neurosurgeon that did my MVD and dont regret it at all. He also understood that I could not tolerate the drugs as well and had every rotten side effect there was with them. I had to take time off because I coudnt tolerate the meds and I drive about 100 miles a day for work, so it just wasnt safe. I dont look at it as a failure, just taking care of myself.
I also understand how intimidating this site is, I went through that as well, age doesnt matter on that one.
I do think it would be good for you to see a specialist for this though
Take care
Wendy
Kc Dancer Kc said:
Ohhh no -- I don't see it --- there was a little girl on here within the last two years who had an MVD -- You need a TN specialist surgeon to rule that out for you !!!!
Lauren215 said:
Hi everyone-- I don't post a lot because I am intimidated and new at this group-- but when reading your posting about taking time off I had to reply... have a lot of people had to take time off? My doctor also recommended I take a leave of absence from work and school, and I had a complete breakdown immediately after. Is this really what it comes to? My doctors keep telling me I am not a candidate for surgery because I am too young, but the medicines don't seem to agree with me-- so I really have no idea where to go from here?... I guess I have the same question as the initial post-- is taking time off the best thing to do for our sanity? But I worry that even after time off I am not going to be better if the doctors are not doing anything for me... this is getting truly depressing... is anyone else feeling this way?
Thank you all so much for the feedback. I have an appt. at a teaching hospital in Philadelphia next Wed. so I am hoping I get to talk to someone who knows what they are talking about. The Dr's in my town literally told me there was nothing more they could do for me... I thought this was awful, I mean I understand that maybe they don't see this diagnosis often and what they do see is not my age- but at least refer me to someone who can help instead of just letting me think this is my destiny-- very frustrating. The nurse who called me to set up my appt. said the neurosurgeon I will be seeing treats this often and specialized in TN, so I really hope I don't end up let down. I can't live this way much longer. Also wondering-- all of the doctors I have seen so far keep telling me they are "certain" I have TN, but they are "baffled" by my having it at my age (25)... has anyone else around my age having doctors telling them they are "rare" (as this has me even more worried and nervous!) or is it just the doctors in my area lacking in this area?? Thank you all! I appreciate it very much... I am feeling less alone as I read your responses... as helpful as my husband, family, and friends try to be- they just don't understand.
I have been getting the same response from the doctors in my area due to me being (30)... It's very scary but it looks like my husband and I will be doing some traveling because at this moment, I'm stilling awaiting a neurologist to take my case.No one in my area is familiar with my condition and doesn't seem to want to even do any research. This group has helped me to keep pressing forward and I realize that I'm not alone. I have been able to keep my husband, family and friends updated on my condition as well. Even, though family don't understand you can always come here and know that there's someone here that knows exactly what you're going through. Hang in there and I hope that you're having a PAIN FREE DAY!!!
Lauren215 said:
Thank you all so much for the feedback. I have an appt. at a teaching hospital in Philadelphia next Wed. so I am hoping I get to talk to someone who knows what they are talking about. The Dr's in my town literally told me there was nothing more they could do for me... I thought this was awful, I mean I understand that maybe they don't see this diagnosis often and what they do see is not my age- but at least refer me to someone who can help instead of just letting me think this is my destiny-- very frustrating. The nurse who called me to set up my appt. said the neurosurgeon I will be seeing treats this often and specialized in TN, so I really hope I don't end up let down. I can't live this way much longer. Also wondering-- all of the doctors I have seen so far keep telling me they are "certain" I have TN, but they are "baffled" by my having it at my age (25)... has anyone else around my age having doctors telling them they are "rare" (as this has me even more worried and nervous!) or is it just the doctors in my area lacking in this area?? Thank you all! I appreciate it very much... I am feeling less alone as I read your responses... as helpful as my husband, family, and friends try to be- they just don't understand.