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3 plus years post CK
jamesbw
Posted: Monday, August 02, 2010 3:04 PM
Joined: 8/2/2010
Posts: 3


I had my third annual MRI in early January 2010.  My ENTs said it showed growth. I had consultation with two neurosurgeons who after confirming the measurements said it could be, but maybe not. I was scheduled for another MRI six months after the annual. I had the six month MRI on July 1, 2010. Just a week before I started getting hemifacial spasms. I only had a couple before the MRI and I told the ENT about it. Once again the ENT said it was growing, but after meeting with the neurosurgeons, my ENT said he was wrong, when measured at the same points its the same size. I asked about the spasms and my ENT said they are not an indication for surgery unless they get really bad or interfere with work.

Currently I am experiencing several hemifacial spasms a day along with other odd facial synkinesis episodes (touch one part of the face and another area starts twitching, etc.)

Two questions:

Are there other CK patients experiencing this? 

How bad does it get before conventional surgery is suggested?
 

radsrus
Posted: Monday, August 02, 2010 4:26 PM
Joined: 10/10/2008
Posts: 4435


At this point, the problem is more likely due to treatment than to tumor. Without looking at the scans, we can be 95-98% sure the tumor is not growing. Sometimes a brief course of steroids, or a trial of NSAID's, +/- a drug such as Lyrica or tegretol may make things better

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


jamesbw
Posted: Tuesday, August 03, 2010 9:53 AM
Joined: 8/2/2010
Posts: 3


Thanks for the info.  The spasms are not painful, or stressful in themselves, but I just wonder what's going to happen next. I could put up with this forever if I knew this was as bad as it was going to get. I certainly have had better outcome to this point than others I know that went through conventional surgery.

I've found two patients who had CK that later had to have conventional surgery as it did not stop the growth. One had the same ENT & CK treatment team as I. She never had hemifacial spasm. The other patient was treated at Stanford and the hemifacial spasms was her first sign something was wrong. She subsequently had conventional surgery at House Ear Clinic. Her spasms ceased after surgery.

The second case history, along with the fact my ENT has twice looked at the MRI and thought it was growing, is what has me concerned about the spasms. I'm thinking I may be one of the unlucky 5% where CK doesn't work for their acoustic neuroma.

Ramona
Posted: Tuesday, August 03, 2010 5:19 PM
Joined: 10/10/2008
Posts: 11


I'm about 20 months from CK.  At 6 months, I started having hemifacial spasms.  They stopped at around month12-13.  If I laugh hard or cry my eye starts twitching hard like my face is going to spasm but it hasn't since Dec.  Keep the faith that it hasn't grown.  95-98% are good odds.


jamesbw
Posted: Wednesday, August 04, 2010 1:37 PM
Joined: 8/2/2010
Posts: 3


Thanks Ramona.  Its nice to hear from another patient, especially one that has been through this.  I just find it so odd that the spasms have started 46 months after treatment.

Did you do any medications or have any tips for helping control the spasms?

radsrus
Posted: Wednesday, August 04, 2010 2:08 PM
Joined: 10/10/2008
Posts: 4435


You can try tegretol, and botox has been used for this as well.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Ramona
Posted: Wednesday, August 04, 2010 4:20 PM
Joined: 10/10/2008
Posts: 11


I didn't try any meds as they were short lived for me, around 10-15 seconds, although at one point up to 5 times per day.  Like you said, they don't hurt, more of a nuisance.  Sometimes they came out of nowhere.  Definitely exacerbated with touching face hard (washing) or laughing etc.
jaybe
Posted: Wednesday, August 18, 2010 8:49 PM
Joined: 10/10/2008
Posts: 70


I'm also at 3 years post-CK and have just had some unpleasant symptoms come up in the last week or so; my tinnitus is chirping, almost squealing at times, like it did when my AN swelled a few months after CK.  Also having the "wonky-head" and uncoordinated feeling, occasionally bumping into walls, etc., and more ear fullness. Is there anything unusual that happens at 3 years?  I wasn't expecting this.  After my 2-year MRI, the doc said I could wait 18 months before my next MRI, but now I'm wondering if I need to go sooner.

radsrus
Posted: Thursday, August 19, 2010 3:35 AM
Joined: 10/10/2008
Posts: 4435


It won't hurt to get another MRI, but I doubt it will show anything significant. This may be more related to radiation effects on the nerve. Hopefully it will clear up. Talk to your treatment team. Sometimes we would use another short course of steroids to see if it helped.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


jaybe
Posted: Thursday, August 19, 2010 9:49 AM
Joined: 10/10/2008
Posts: 70


Thanks, Dr. Medbery. I've been following up with a local doc out of convenience and also my treating physician left the hospital where I had CK.  My local doc specializes in brain rads with traditional FSR. Is there any reason to find someone with CK experience if I continue having problems?

Also, do you think the weather could be a factor in situations like this? I've been playing golf a couple of times a week in 90+ heat and humidity, and my head is really throbbing and ear buzzing by the end of the round. I wasn't sure if physical activity was good, bad or indifferent at this point.

Thanks,
JB

radsrus
Posted: Thursday, August 19, 2010 5:28 PM
Joined: 10/10/2008
Posts: 4435


I doubt that activity has any significant adverse effect. What you need is someone with experience with SRS for AN, either GK or CK.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


JiminArlington
Posted: Saturday, August 21, 2010 7:00 AM
Joined: 2/17/2010
Posts: 7


I started having hemifacial spasms 2 yrs post CK, when the AN had increased to 12 x 15 x 17 from 9 x 11 x 13.  My radiation onc at Georgetown thinks I'm in the 2-5 % minority when CK hasn't worked--the first "failure" at GU--and the surgeon I initially saw who has much experience with AN agreed. Both pointed out that the initial signs of necrosis have diminished.  They are uncertain if the spasms are associated with the AN.  Lately the spasms are less frequent (sometimes none in a day unless triggered by, in my case, brushing my teeth).  Otherwise I haven't had another change in symptoms since my diagnosis in 2007 (tinnitus and hearing loss remains about the same).



Jim  Ballas
Arlington VA
jballas@covad.net

9mm x 11mm x 13 mm AN on left.  Diagnosed in Nov 2007.  CK in Feb 2008 at Georgetown

radsrus
Posted: Saturday, August 21, 2010 7:01 AM
Joined: 10/10/2008
Posts: 4435


Do they plan to remove the tumor?

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


JiminArlington
Posted: Saturday, August 21, 2010 7:29 AM
Joined: 2/17/2010
Posts: 7


That's the option I have, but as one said, I have some time.  I'll watch for the symptoms that make surgery imperative.  I had an MRI this month which was about the same as that 6 mos ago.


Jim  Ballas
Arlington VA
jballas@covad.net

9mm x 11mm x 13 mm AN on left.  Diagnosed in Nov 2007.  CK in Feb 2008 at Georgetown

jaybe
Posted: Sunday, August 22, 2010 8:44 PM
Joined: 10/10/2008
Posts: 70


Is there a scenario where, at 3 years post-CK, a course of steroids would really fix anything?  Or would it just alleviate some symptoms temporarily?  I would rather wait out the situation if possible, but I don't want to be foolish about it if it can really help.

radsrus
Posted: Monday, August 23, 2010 3:10 AM
Joined: 10/10/2008
Posts: 4435


They may not help, but a short course of steroids is unlikely to hurt anything if taken properly

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


jaybe
Posted: Saturday, August 28, 2010 8:57 PM
Joined: 10/10/2008
Posts: 70


I'm now on Decadron, 8-4-2 mg taper, 3 days at each dose.  Just completed second day at 8 mg, so I'll probably be going to bed at 3am and getting up at 6am. Tinnitus seems a little better; getting back to the normal noise and not so much of the chirping.  My head is still kind of throbbing at times though. So my doc said we'll move up the MRI if the Decadron doesn't resolve it, but I'm still a little concerned now about what's going on in there regardless. Isn't this unusual to happen now? I thought most of the fun stuff wound down by about 2 years or so.

radsrus
Posted: Sunday, August 29, 2010 3:27 AM
Joined: 10/10/2008
Posts: 4435


We occasionally see late happenings. At least youi will have extra time to get things done.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


jaybe
Posted: Sunday, August 29, 2010 10:23 PM
Joined: 10/10/2008
Posts: 70


So a "late happening" would usually be a transient thing that passes on its own (or with a little steroid boost)?

Would usual AN follow-up protocol use yearly MRI for a set number of years, regardless of signs of shrinking, dying, etc., on previous scans?

radsrus
Posted: Monday, August 30, 2010 5:16 AM
Joined: 10/10/2008
Posts: 4435


Well, there are happenings and there are happenings. I would expect this to be a transient thing that will pass. However, there is always the possibility of something more sinister, and so it will eventually need investigation if symptoms don't go away.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


jaybe
Posted: Monday, August 30, 2010 7:31 AM
Joined: 10/10/2008
Posts: 70


Ok, thanks for your help (as usual). I'm to contact my doc later this week and discuss if MRI should be moved up. Things seem to be settling down a bit - tinnitus still seems a bit louder, but not chirping and so it's much more tolerable now (crossing fingers and knocking on wood, of course!).

Thanks,
JB

jaybe
Posted: Friday, September 03, 2010 11:29 AM
Joined: 10/10/2008
Posts: 70


Thought I'd update... steroids almost over, things are still settling down, so will wait another couple of weeks to decide on MRI. Hopefully this will turn out to be one of those less-sinister happenings. When the tinnitus isn't flaring it seems like I can even hear a tiny bit better than before.

Just wondering if it might be possible for AN to physically move a little inside the IAC?  I really have the sensation at times that there is movement, and that is often followed with a little extra burst of tinnitus/electrical sensation.  It's not really painful, just annoying, but then I have an irritated, raw feeling in there afterward.


radsrus
Posted: Saturday, September 04, 2010 8:35 AM
Joined: 10/10/2008
Posts: 4435


No, it does not move. Can't explain the sensation

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


heather
Posted: Thursday, June 02, 2011 3:26 PM
Joined: 6/1/2011
Posts: 5


How long untill the hemi facial spasms stopped? this is new to me..
heather
Posted: Friday, June 17, 2011 9:09 AM
Joined: 6/1/2011
Posts: 5


Hi Have your spasm gone away ?--I am having them now --6 months after my Cyberknife for a acoustic neuroma.My docter said they can last up to 18 months -2 % get them -while the tumor is dying. tried steroids --did not help --since i have 1-3 any given day and some days none.. I am coping but mine last any where between 1/2 to 2 minutes.
radsrus
Posted: Saturday, June 18, 2011 4:32 AM
Joined: 10/10/2008
Posts: 4435


Hemifacial spasm is a rare complication of treatment of AN with radiosurgery. We have never seen it with CK treatment (fractionated), and only once or twice with GK treatment. Facial nerve dysfunction (weakness) can occur in up to 2% of GK treated patients, but not HFS. It tends to be self-limited but can go on for a few months. Botox has been tried with variable results. It does not appear to be a slam dunk success.


 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


GeorgeA
Posted: Friday, July 31, 2015 2:31 AM
Joined: 7/31/2015
Posts: 2


Hi all, came across the above posts which are very relevant to me at the moment. I am 6 months post CK for AN ( in Ireland) and for the last month have been having the hemifacial spasms as described above. 1 -2 a day on AN side. Had my 6 month MRI last week and doctors are happy that there has been no growth since CK treatment. Still, I'm obviously concerned about the spasms. Doctor said that they never came across this before but didn't really offer anything else in the way of advise. As the above posts are a few years old I hoped you may be able to provide an update as to how you progressed. Thanks & regards, George
radsrus
Posted: Friday, July 31, 2015 11:57 AM
Joined: 10/10/2008
Posts: 4435


THese usually resolve on their own. Drugs such as tegretol may be useful

Clinton A. Medbery, III, M.D. Southwest Radiation Oncology buddy@swrads.org
radsrus
Posted: Friday, July 31, 2015 11:57 AM
Joined: 10/10/2008
Posts: 4435




Clinton A. Medbery, III, M.D. Southwest Radiation Oncology buddy@swrads.org
GeorgeA
Posted: Tuesday, August 04, 2015 1:13 AM
Joined: 7/31/2015
Posts: 2


Thanks for response. I will "keep the chin up so". Best regards, George
betweeniandk
Posted: Sunday, September 13, 2015 8:49 AM
Joined: 9/13/2015
Posts: 1


Within 3 months of radiation treatment, which I had in May of 2012, I was diagnosed with hemifacial spasms. My neurologist prescribed Trileptal (Oxcarbazepin) which I took at 600mg a day for the first two years, before dosing down to 450mg, then 300mg, then 150mg over the past year, then stopping the medication all together. I've been fortunate enough not to have had a hemifacial spasm since starting the medication. I did not notice that regimen highlighted, in this space, so it might be worth discussing with your doctor, for those of you who are currently dealing with that unpredictable side effect.
 

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