after fsr wave feeling in head

[mema]

First time on.  Prior to treatment I didn't have headaches.  Had FSR 25 treatments in nov-dec of 2005.   Have had mild headaches daily since day one of radiation.  I am more concerned about the movement I get in the back of my head which I will call brainwaves.  It feels like waves of water or a worm moving in the back of my head.  It happens when I'm on the brink of falling asleep.  I get chills in my body and head right before the movement most times, but not always.  The Dr's seem to think it is positional and neck related.  I have had neck problems for 20 yrs and never had this movement in my head.  Plus I can lie in bed for hrs and it doesn't happen until the moment I'm falling asleep. This movement started day one of radiation. I had an eeg and it was negative.  Clonazepam helps but I only take it before bedtime in the evening.  If I take a nap , I don't take the clonazepam     and the movement is worse.  I do get pins and needles feeling in my head on the an side, but that is different.  Please if anyone has had this wave movement I feel please respond.                                                                                                                                                                                                                                                                                               mema                                                                                                                                                                                                                                                                               

[Dealy]

I had 25 sessions of FSR in June-July of 2006. I am almost 10 months out I can not relate to the feeling in the back of the head-but I  can with the pins and needles. I have been put on 6 day packs of steroids for 8 times since initial FSR. Now I am on Celebrex because llast MRI (9 month) showed edema. Dr's felt this was too much steroids so this is an intiinflammatory. I was geting mini zapers from bridge of nose to right eye. Where did you get your FSR and what does MRI show. I had a tinge of wierd feeling in back of my head at first but that went away. Interested to know more about MRI-what it showed  etc. Keep us informed. Ron

[mema]

Ron, thanks for the quick response.  My fsr was done at MD anderson in Orlando.  My first MRI stated little if any change since intial MRI  of 6 months prior. AN  cannot be determined although likely some residual.  My ANwas initially small.  The Drs. at MD anderson told me to wait 1 yr for next MRI which is this month.  In march iI sought  out a neuro onycologist there and he said my brain looks good by the post radiation MRI.  I'm due to see them in June. I lost most of my hearing on the AN side within 6 months after FSR which the Drs. seemed surprized about that                                      mema                                                                                                                                                                                           

[Dealy]

Mema- My FSR was done at Johns Hopkins in Baltimore. I have my one year MRI coming up in June. 6 month showed necrosis. I requested 9 month because of wierd sensations in my face. This one showed edema-swelling but Docs say it is still stable. My initial AN was 2.4 by 2.0. Depending who you belive-it is now 2.4 x 2.2. I went with FSR because was told it spares hearing nerve-where CK or GK is too intrusive but more accurate. At my 6 month MRI I was 90% SRT-now I am 52%. This is my only hearing ear so I opted for hearing aids. It is working but not like normal conversation and still distorted. I did not expect that fast of a crash. I am deaf in my other ear. Had surgery back in 1988 for an AN. This is my 2nd time around-now I am an NF2. One hell of an adjustment I can tell you. I am just now getting some of my old stamina back. I work an 8 hour job. By the time I get home at 6PM in the evening-get up in morn at 4:30 AM I am exhausted. Anyway-crawling worms in the back of your head feeling. Do Docs seemed concerned or not?Interesting to find out what is going on backk their-(meaning in your head) Keep in touch. Ron