Facial Paralysis after GK ???

[SusanT]

I had Gamma Knife on June 2007 and in September 2007 I developed sudden facial paralysis. The first diagnosis was Bell's Palsy. I am currently waiting on the results of a MRI. Just wondering if anyone has experienced facial issues after GK ? How long did the symptoms last ?   

[mar50]

Hi Susan - I developed a palsy around the same time (3 1/2 months after GK).  Another 9 months have passed, and I would say I'm about 75% improved.  For me, it's been a gradual improvement over time.  The most significant change, being able to close my affected eye, came about 5 months after the pasley started.  Coincidentally, maybe, it also came shortly after I started acupuncture - something I never thought I would do!

good luck, please let me know if you have any quesdtions.  Be patient, I knoiw it is hard and can be really depressing at times.

Martha

[SusanT]

Martha,
I was beginning to think that I was alone. I even called the International Radiosurgery Association and the person that I talked to couldn't give me any answers. Did you have any facial therapy ? I am willing to try anything. The eye is the most annoying. Could I call you ? You can email me your number. Thank you so much for replying. I am crying happy tears and my crazy eye doesn't know what to do with the tears!
Susan

[mar50]

Hi Susan - i sent you an e-mail to your e-mail address listed in your profile.  Post again if you don't get it!

Thanks

[ppearl214]

Hi Susan and Martha,

You both are the first (for me) that I have heard that have run into post-radio facial paralysis... will monitor this thread as I would be interested to see if anyone else has run into it, post-radio treatment (I've heard of it as a potential risk of radio-treatments but had not heard of anyone experiencing it until this thread).  Please hang in there and I hope the dr's can come through with answers for you.

Sending huggles.
Phyl

[SusanT]

Phyl,
So far, I have only heard from Martha. We both have similiar situations in that the paralysis started about 3 months post GK. I'm 2 months into the ordeal. So far, I really haven't gotten any answers from my doc. I'll keep you posted.
Susan

[Mark]

For what it's worth, Facial nerve injury with radiosurgery is very rare and is generally on the order of less than 1% overall. The number is slightly higher with GK because of the impact of the high one time dose on the nerves. This along with hearing preservation is why the fractionated approach was pursued and developed with later generation machines.

When I met with Dr. Chang this week for my CK check up we got into the discussion of what the largest AN size he felt he could safely treat with CK ( generally about 3.2 CM ) , and as an aside he mentioned that he had only one occurrence of facial nerve injury out of the over 700 treated at Stanford and that was with a patient with a 3.6 cm AN who insisted on trying radiosurgery even though Dr. Chang advised that surgery was the better option.

Hopefully, like a number of possible post treatment symptoms, these facial nerve affects will be transitory and recover over time. Certainly crossing my fingers for both of you that will be the scenario

Mark

[Chris P]

Hi,
   It has been a while since anyone has posted on this subject and I was wondering if anyone recently has had post GK facial weakness ?  I am into my 6th month since I first noticed facial weakness.  I had my GK (10 positions in one day ) on a 14mm AN  four  months prior to getting the weakness.  I still have balance problems and of course hearing loss but the thing that bothers me most is the tearing of my eye.  I had been told by doctors that once the palsy started to get better it would move fast.  It is my experience that it is moving slowly.  I am better than I was in the beginning but I still can not blink my right eye or raise my right eye brow all the way.  My smile , although much better is still not back to normal.  I do not expect the hearing to get much better but I do get different levels of loudness from day to day. 
   I was wondering does anyone have anything to add to what I have been experiencing.  I do go back to my doctor in June for my annual MRI .  I hope the new will be good and my weakness will be even more improved.  Hope to hear from someone regarding these issues.  Thank you, Chris Paulsen

[Susie]

Chris,
I am the one who originally asked the question regarding facial paralysis after GK. I can't believe that it has been 3 1/2 years. It seems like a much longer time. I have completed my occupational therapy for facial neuro-muscular training, received acupuncture and cranial  therapy. I can blink my eye, but continue to need eye ointment at night. I no longer need the weight for my eyelid. I used a brand called BLINKEZE. I can't raise my eyebrow and my smile is not complete. The good news is the dang thing is dying based on my MRI in Jan 2011. More good news...today I got approved for BOTOX to hopefully help my face be more balanced.  I am headed to Atlanta in 2 weeks. I highly recommend facial neuro-muscular therapy and acupuncture. If you live near Atlanta, I can recommend a great facial therapist.

[Chris P]

Susie,

  Thank you for your post.  I do not get on the computer everyday so sometime my answers are not timely.  I do not know much about neuro-muscular therapy , can you explain ?  I do not live close to Atlanta.  I live near Gainsville Florida.  I had my Gamma Knife at Shands Hospital .  I go for my first annual MRI in July of this year.  I am hoping the tumor will show shrinkage.  My face seems to improve some but not enough for my sack and my balance is better some days then others but still not great.  However I feel if I can blink my right eye and get it to clear I could get back to driving.  The better vision may also help my balance.  I may look into the Therapy you mentioned after I give everything a fare chance of going back to normal on its own. 

   Thanks again for your input.

Chris P.

[LeAnn]

Hi,
   It has been a while since anyone has posted on this subject and I was wondering if anyone recently has had post GK facial weakness ?  I am into my 6th month since I first noticed facial weakness.  I had my GK (10 positions in one day ) on a 14mm AN  four  months prior to getting the weakness.  I still have balance problems and of course hearing loss but the thing that bothers me most is the tearing of my eye.  I had been told by doctors that once the palsy started to get better it would move fast.  It is my experience that it is moving slowly.  I am better than I was in the beginning but I still can not blink my right eye or raise my right eye brow all the way.  My smile , although much better is still not back to normal.  I do not expect the hearing to get much better but I do get different levels of loudness from day to day. 
   I was wondering does anyone have anything to add to what I have been experiencing.  I do go back to my doctor in June for my annual MRI .  I hope the new will be good and my weakness will be even more improved.  Hope to hear from someone regarding these issues.  Thank you, Chris Paulsen

[LeAnn]

 I  had big surgery for acoustic nueroma 12-10-07  they got all of it but 5%. other then headaches i did well. i lost all hearing in my left ear. some feeling in the left side of my face never came back and the left side of my tongue was left numb, I went every few moths for an MRI to watch over the 5%. all was well until this past Dec (3 years later) the 5% started growing . the doctor recommended I have gamma knife, so  on Jan5 2011 I did. 3 months later  April 20th they did an MRI  to see if it was dying. they said it look like the middle was starting to die but around the edge of the tumor was bigger. not sure if it was growing in spite of radiation or if it was just swollen due radiation and the dying process .  less then 2 weeks after MRI  all hell broke lose  I started having very bad ear pain and headaches and just sick sick sick feeling the all of a sudden the left side of my face went numb and Facial Paralysis set in.  I am on steroids now. just not sure what else to expect. any advice?

[mk]

Hi LeAnn. I haven't seen you post before, so welcome to the forum. Sorry you are dealing with these problems.
Even though in theory the chances of facial paralysis or other nerve deficits (such as the trigeminal nerve which would cause the numbness) after radiosurgery are about 3%, there are a few reports on the forum, at least since I have been following it. Sometimes the damage to the nerve is directly because of the radiation, and sometimes it is due to swelling, which may disrupt blood flow to the nerve. In your case, given the timeframe, it is quite likely that swelling is the cause of your symptoms, therefore steroids should be able to relieve them. Usually these problems are transient and tend to resolve after a few months, so I guess all you can do for now is to be patient and take good care of yourself.

Marianna

[LeAnn]

I am off steroids now. Have had a lot of health issues due to the steroids, Hopefully they will get better now. I still have facial paralysis. I went to ER about three weeks ago because  I had an infection in lymph nodes in my neck on the side that has  facial paralysis. could not swallow.  They give me a shot and give me antibiotics, I feel bad all the time. I have no energy. sure could use a little good news today!

[Marlys]

I had my GK at Mayo in October 2010 - started getting facial twitching in July 2011 and it is getting progressively worse - upper lip tilts up and eye is entirely closed.    Was happening now and then, now several times a day.    Should I be seeing my GP about palsy or is it okay to wait until my October MRI with Mayo?