Ok, I have to admit that I am not as "up" on NF2 and shame on me... but, I need to ask all NF2 patients that participate here an important question.
I am in contact with an NF2 patient that inquired to me about something that I am not knowledgeable, so I wanted to ask you all.
Older (50's+) woman, bilateral AN's only (full body scans are not revealing any other growths, esp. in spinal column, etc.... only the 2 AN's). One AN treated with GK approx 4-5 yrs ago. GK successful as the AN is necrotic and not growing. The other AN in W+W, no growth shown in recent images.
Woman is now complaining of lower skull-based issues, dizziness and most of all, a "heaviness" feeling in the buttocks and legs. The "heaviness" feeling is the major concern.
Have suggested she may want to meet with a neurologist or neurosugeon re: the "heaviness" in the lower torso/legs to see if they can narrow it down to be possibly something different than the NF2 but... as I noted... I'm not all that versed in NF2.
So, my question is this... with all films only showing the bilateral AN's and no other growths (thank goodness!) and the GK (highly precise beam target) has worked on one AN and the other AN non-treated, could the NF2 be causing the lower torso/legs "heaviness" issues?
I don't want to make suggestions to her that may be wrong. She is following up properly on the dizziness issue, but as for the lower torso/legs "heaviness", I'm not sure and wanted to ask you all.
thanks for any and all help!