Facial Paralysis after GK ???

[saralynn143]

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.

[mcrue]

Wow! That's some frightening stuff. I hope your facial paralysis after Gamma Knife has subsided after all these years.

[CattAN]

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

[MG]

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

[DizzyMamaIL]

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!

[Elsy]

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.

[DizzyMamaIL]

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.

[Elsy]

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

[DizzyMamaIL]

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!!!

[alicia]

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?

[SueLL]

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.

[LakeErie]

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.

[alicia]

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?

[LakeErie]

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?

[alicia]

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