ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: SusanT on November 18, 2007, 12:57:32 pm
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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 ?
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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
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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
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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
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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
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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
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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
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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
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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.
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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.
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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
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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?
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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
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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!
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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?
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Marlys - I would see your GP or neurologist about this now rather than waiting until October. Something may be putting pressure on your facial nerve causing hemifacial spasm (the condition that I had). Perhaps - even likely - not, but I would have it checked out.
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Wow! That's some frightening stuff. I hope your facial paralysis after Gamma Knife has subsided after all these years.
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Hi,
I am having twitching in the eye and facial spasm on my AN side post radiation. I received a single dose of 13 Gy delivered by Cyberknife, similar to GK treatment. Both Dr. Chang and Dr. Gibbs told me this is a rare (6%) occurrence, but that things will improve in the next six months.
Hang in there.
CattAN
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CattAN,
I had CK almost 3 months ago and have had left side facial spasms where my eye and mouth droop. They only last for a few seconds but they scare me! I also have an awful burning pain around and in my ear. I have been on steroids once for it but it has come back. Lately , the facial droop has stopped but not the pain. :(
I hope yours stop.
Thanks for listening.
MG
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i finished my radiation in May. Went for my follow-up MRI October 27th.
Report says it grew, but shows "cystic degeneration". Sunday 10/30, I'm finishing my shower when half my face goes completely numb and droops and I can't see and can barely speak. It was so frightening! Control came back as I panickedly got dressed while my husband called 911 and I'm on steroids now. I started a 5 day course of steroids, which ended today. I am so anxious that it's going to happen again! I already have headaches all the time and balance issues. I hate this damned thing in my head!
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I had GK in July and started to develop weakness in wrinkling my nose and my upper lip doesn't move a week ago. My neurosurgeon says it's all part of the process, and I can only wait and hope for nerve recovery as the tumor swelling goes down.
It's scary and depressing, but we all have to stay positive and hope for the best...in time.
So yep, I am one of the post GK patients who has this unusual complication.
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It's happened twice more since i posted. Feels like every worst-case scenario is happening to me and it's really really hard to stay positive.
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Dizzymama,
I'm sorry that your paralysis is recurrent. Hope your doctor is aware of that...
I am trying out both facial massage and I go for acupuncture. Makes me feel that I'm doing something about it. So it helps me out psychologically too, is that available to you ?
Hang in there, we'll get through this and get better,
Elsy
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I'm on a huge dose of steroids for over a month now. Plus all sorts of medications to deal with the steroid side effects. I have facial spasms as often as 3 times per day, but they average one every other day. I had an episode last week where I was home alone with my 1-year-old and I couldn't get up. I was so weak and shaky that I couldn't stand. I think I isolated that issue to the metformin I was taking to deal with the blood sugars because of the huge dose of steroids I've been on for over a month. I'm not taking that any more and the tremor I had developed is leaving and I'm less weak. I do, however, have the largest "moon face" I think I've ever seen someone have. It is quite embarrassing and has gotten to the point where it actually makes it difficult for me to move my head. It looks like I have prosthetic make-up onlike in the Eddie Murphy version of the nutty professor. I can't wait for this whole ordeal to be over!!!
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I too have facial paralysis following GK. Wondering how everyone on this thread is doing? Mine started 6 weeks post Gamma. Unable to blink and no ability to smile for me. I'm about 8 weeks into paralysis. I hope to bump this topic as doctor's don't have a lot to offer. I am curious how to know if it is due to swelling of the tumor or actual radiation damage to the nerve (which I had NOOOO idea was a possibility). Anyone with timeframe and percent of recovery?
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My facial twitching started three years after GK when a cyst growing from the AN started leaning on my facial nerve. Thankfully the twitching has been under control with Tegretol.
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Alicia, I believe facial weakness/paralysis is from swelling not radiation damage to the cranial nerve affected. My weakness/paralysis resolved from HB grade III to grade II over several months after a month's taper with steroids. MRI's clearly showed the swelling of both the tumor and the brain adjacent to the tumor just after the problem arose, and the gradual reduction of the swelling over time. I was advised that resolution of the swelling is unpredictable, both in terms of duration of recovery time and whether the resolution will ever be complete. In my case the swelling resolved 100%. I can now close my eye completely, but still have some remaining weakness and synkinesis has set in 6 months ago. I am 18 months out from GK treatment.
I hope you received steroids quickly and have seen an ophthalmologist to protect your cornea from any incomplete eyelid closure. Facial weakness from GK almost always resolves favorably according to my neurosurgeon who has three decades of experience treating AN's with radiation.
You did ask for a timeline, so mine started Oct 2016 with GK. I started facial weakness end of Jan 2017. Feb 2017 was a decadron taper. I began to see gradual improvement April 10. My eye was closing by June 2017. In July synkinesis began and I have been learning to deal with that since. Good luck.
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LakeErie, I remember you from commenting on a "sliver" post of mine a few years back. When we all still believed they would die! Thank you for your details. So within 6 months, your eye was closing...Gives me something to look forward to!
I would say over 6 week period (feb-mid march) I had 3 episodes of tightness and spasms and each time leaving my face a bit weaker (eye, mouth, nose). I am at a III'ish level of weakness now. I did see an ophthalmologist immediately as eye pain was rapid and intolerable. Had a punctal plug inserted. Used overnight ointment all day. Plug fell out last week, but am doing ok with an eye gel during the day and ointment at night. Saw my neurosurgeon within a week and although he "had never seen this" (ugh) he put me on a 6 day methylprednisolone steroid when I said steroids were needed. When the last episode happened, I called and was put on another round. Just 6 day. I asked if there was something stronger, he said this was the best.
Also perplexing, is at the 2 week point of weakness (2mo post GK) I had an MRI with only slight, very slight, swelling. That's why I think he mentioned possibility of direct nerve damage. Synkinesis is the next hurdle I hope to avoid if possible. Did you do any "therapy" that could have brought that on or do we think it can just happen?
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I forgot to mention I also had a punctual plug which was a great help to me. With lid closure mine was removed. I still have some small lagophthalmous, but no exposure problems to my cornea as a result.
I am surprised to hear that the Medrol pack is the "best." The methylprednisone had no effect for me so I was on decadron for a month, decadron rule of thumb is that it is at least 6 x's as strong per mg. But maybe your more minor swelling accounts your doctor's decision.
And no, I did not do type of any therapy. Synkinesis can result from the lesion on the facial nerve from the swelling when it heals. The new neurons can mis-wire, connect to the wrong places. In my case it is called jaw - wink syndrome. When I open my jaw to yawn for example my eye would close. Closing my eye tightly would move my chin. Pursing my lips or chewing would make my eye squint. Another feature of synkinesis is tightness of the muscles. My right eye is noticeably smaller than the normal left one. I believe a rule of thumb is to not attempt therapy for a year as it can make things worse. I waited until today which is one year since I first started to see movement back in the corner of my mouth.
I have learned that, at least in my own case, I can minimize the mass movement in my face by slowing down the motion that produces the incorrect other movement. If I chew slower, my eye does not squint as much. If I close my eye slowly, my chin movement is less perceptible. The other technique I discovered is relaxation. If I concentrate on relaxing the area just under my eye, I can yawn without my eye closing. It has taken months of practice to slow down my facial and jaw movements and to make a habit of relaxing my jaw and eye, but it does work for me and hope it will continue to improve. The Cleveland Clinic speech therapy department has given me exercises to improve muscle tone and strength now that I am one year since recovery began. They also recommended stretching and massage techniques and to try to get back to HB Grade I, or normal.
Where did you have your GK procedure done?
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You taught me a new word...lagophthalmous, not a bad compromise if your cornea stays wet enough and you can't tell its open when you sleep!
I was not able to tell anything happened with the methylpredisolone either time I was on it. good or bad. If I have another episode in which I need steroids, I may push for something stronger.
I had my Gamma in Omaha, NE. I was diagnosed here by these doctors but knew they didn't have much experience with large tumors which led me to California for surgery. But 8 years later, CA is not covered by my insurance so I stayed here.
Thank you for all the synkinesis info. I try not to force healing at the beginning of things and was hoping you agreed. I am glad you've found opposing movement to off set the miswired ones! And for the speech clinic to give you the possibility to get to HB I or normal is music to my ear ;)
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Just to be clear, my incomplete eyelid closure is not just at night, nor is it complete. My eye doctor estimates it 1 mm, which is not enough to cause exposure keratitis which I quickly developed when the lid would not stay closed. I could close my eye but it would not stay closed. Lagophthalmous is used to denote incomplete lid closure. If it did become a problem I am advised simple lid surgery can correct the problem as it is so minor at 1 or 2 mm's., no gold or platinum weight is necessary.
UPMC ( Univ of Pittsburgh Medical Center ) has a Facial Paralysis Center that also treats synkinesis. UPMC installed the first GK in the US and has treated the most AN's so it is familiar with complications from GK treatment. It is a short drive for me so it is available if I need it.