hemifacial spasm

[daylight]

I haven't been on this site for quite awhile.  I had cyberknife for a 1.8 AN a year ago at Sinai in Baltimore, to save time they did all three sesssions in one 45 min. dose.  In July of this year I started getting hemifacial spasms.  They pull the left side of my face torwards my ear so strongly that my nose bends :~) my eye closes and my lip and neck are also frozen fo about 45 seconds. Fun when it happens in public!  Smiling, eating, brushing teeth etc. brings them on. 
I have been without medical insurance since last January so follow-ups with any doctor would have been futile as treatment or surgery would break the bank.  I am getting health insurance starting November. I'm starting with a much needed MRI.
According to this website http://www.hfs-assn.org/ there is surgery to relieve the pressure on the facial nerve similar to AN surgery. Has anyone else had this problem? And have you had surgery to relieve the pressure?
I have also lost most of the hearing in my left ear after treatment and still feel some pain on occasion.
I may be jumping the gun, but want to be prepared for the MRI results.
Thanks and hope all are well.
Sue B.

[flier58]

Hi Daylight,
 I have opted for CK myself. I really don't like what you wrote about your results.  Why don't you repost it on http://www.cyberknifesupport.org/ which has CK surgeons answering questions.  I will be watching if you get an answer.  Why was your protocol changed to one session and what was your total Gy in that one session.
GOOD LUCK,
Flier58

[daylight]

Hi Flier,
The radioligist said that it was a small tumor, they felt that doing it in three sessions wasn't necessary.  So I canceled two of the three night at the hotel and they did it all in one shot. The tech that was operating the machine paused to enter three programs. 
From what I overheard while in the waiting room the week before was that there machine was waiting to be repaired and was down for awhile, so I'm assuming that they did this to save time and get to those who needed it more than I did.  I don't think that they thought that this was a serious condition. So as they say in New York "I got the bums rush!"
I'm not sure what you mean by Gy, I'm guessing that it means the amount of radiation.  I was in the machine for only 45 min. with some breaks for the programing, I don't know how much radiation was used.  Thanks for the link to the other site.
Sue B.

[flier58]

Hi Sue,
I really hope you will post cyberknife support site because I would like to hear the Doc's opinion of your protocol since 1.6 cm AN is not that small. Gy's are the units of radiation and generally with CK they are spread over 3 days at  6Gy per session total of about 18 Gy (that is what i read and per my conversation with Dr. Chang in Stanford).  I am not saying that your facility did anything wrong just curious.  I truly hope it is a transient complication for you and will go away without any interventions.
Sincerely,
Flier58

[Bob Partak]

Hi Sue B.,
Yes, I had a similair experience. It started about 8 months after my 3 sessions of CK. I didn't have pain with the contractions, but it was just a little embarasing in public at times. The left side of my face got distorted for about 30 seconds or so. Sometimes it would happen twice in one day and sometimes I would go a full week without an episode. Just like you smiling, laughing etc. set it off. This lasted for 4 months then went away. My doc predicted it would pass in time as he suspected the radiation was inflamming the tumor as it died and this can cause the tumor to swell and irritate the facial nerve. As the tumor dies and shrinks the spasms should clear. I took ibuprofen periodicly but I can't say if it made a difference. I also lost my hearing on my left side.  I think this may be a sign that the radiation is working and with time the spasms also will fade away. I wish you well. Bob       P.S. I noticed your post on the CK board, so i'm also watching to see what the docs have to say. I often wondered if a steroid would of helped.   

[jbodington]

I did not have hemifacial spasm, however, I had Trigeminal Neuralgia and understand that the causes may be similar - AN treatment results in irritation of another cranial nerve.  See my posts below concerning TN.  I also know of someone who had an MVD to cure hemifacial spasm, I had an MVD to fix TN.

[daylight]

Thanks for the feedback.  Glad to know that I'm not the only one that has had this problem.  It's about 4 months now since they started and not getting better. The docs at the CK site said that steroids may help and that they probably will go away.  I was prescribed a 21 pack (6 days of prednisone) for the tinnitus that really got out of control after the ck. So maybe it will help again.  I'll stay tuned for more input.
And It's still a lot better than the surgery complications that have been posted!!!