ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Sally595 on February 05, 2011, 11:51:52 am
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Hello everyone- I've been on this forum just reading and gaining insight for over a year. I am posting now for some knowledge and encouragement, here's my story. My AN (1.8 x 1.5) was diagnosed in Oct. '09. I had the usual but mild symptoms, slight hearing loss, poor balance and lots of ringing in the ears. I opted for GK at Barnes in St. Louis ( I live in central IL) on Feb. 5, 2010. Everything went fine and I went to FL for a week in the sun. Was feeling pretty smug and thought I'd outsmarted my AN. However, 9 mo post GK I started having some facial paralysis. Had an MRI and Dr said it hasn't changed. He said this is a good thing, the GK is working. Went on steroids for 2 weeks and after a challenging 3 mo was getting better. Last weekend I had a very sore throat and swollen glands. All of a sudden in the middle of lunch, I felt my face droop all over again. I'm back to where I was 3 mo ago and very discouraged. Dr said it's too soon for another MRI and started me on steroids again. Has anyone out there had a similar experience? Thanks for listening. Sally
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Sally, is it possible that it is an episode of Bell's Palsy and not related to your GK?
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Hi, Sally - and welcome.
I'm sorry to learn of your post-radiation facial paralysis and can easily understand why you're distressed. Who wouldn't be? I'm going to venture a guess that your doctor was trying to say that the paralysis is an indication that the tumor is swelling, proving the GK is effective. I'm not a doctor so this is simply speculation but I suspect the facial issues you're dealing with will prove to be temporary, based on the normal swelling rate of irradiated ANs. Steroids are a typical medical response to tumor swelling although they carry some inherent risks, as you probably know by now. Frankly, I would be proactive and ask your doctor to explain what is the prognosis for your face to return to normal.
Jim
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Sally -
sorry to hear about your facial paralysis, but I believe this is common post GK.
One of the reasons I chose surgery over GK was that my doc - who does both - told me that sometimes the side-effects of GK can take 12 to 18 months to appear.
I'm hopeful your paralysis will clear up in time.
Best,
Jan
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Lots of good feedback. I particularly like what Saralynn said - could this be something unrelated to your AN/GK, like Bell's Palsy? I'd sure want to hear what the doctor thought about that idea
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It is common for problems, like hearing loss, dizziness etc to crop up within this time frame from radiation. Facial paralysis is much less common though, I think the stats are from 1-3%. I hope that you are not within this unlucky percentage. Tumor swelling may be one reason, the other being direct damage to the nerve.
I remember of another forum member sometime ago who had experienced a similar situation post-GK. Fortunately her facial paralysis resolved eventually. I hope this will be the case for you too.
Marianna
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Hi,
I am new to the forum and I just read your message. I too had GK last June, 2010. I was told that it went well and the facial nerve was not damaged. I felt wonderful and after a few days started to feel like my old self again. I got back to my daily routine and having fun . My dizziness was gone and my balance was getting better every day. I was so happy the surgery was a success.
Four months later in Oct. 2010 I began to have facial weakness. In a couple of days I notices a definite droop on the right side of my face. I called my doctor and the nurse told me since it was four months after my surgery that she felt it was not due to my tumor and to go to my primary doctor, so I did. He felt it was a result of my tumor but since my neurosurgeon's nurse told me no he diagnosed me with Bell's Palsy and put me on steroids and an anti-viral medication. I was on these medications for several weeks when my doctor became concerned that things were not getting better. He sent me to another neurologist for a second opinion and she sent me to my ENT for another hearing test since I has started to have hearing loss. I was told that hearing loss is not a symptom of Bell's Palsy and she felt it was the tumor.
After all of that I went back to my original neurologist and he had me have another MRI and he told me the palsy, bad balance and hearing loss was due to my tumor. He said the GK worked and the tumor was dying in the center but that there was some swelling and that was causing my symptoms. He felt all but the hearing should get better in time. I asked how much time and he did not want to commit to any time frame. I kept asking and he said maybe as long as 18 months. He said he wanted me back in June 2011 for another MRI and to see what my face looked like then.
I have notices minor improvement in my facial palsy but my right eye tears a lot since it does not blink or close all the way and that causes blurred vision so I have not been driving. My balance is still not good and my speech is not real good. I am trying to be patient but it is hard. It has been four months and it seems like years. My hearing is not good in my right hear and I have a lot of noise and ringing in it . I use an ear plug when we go out and sometimes when I am home just to cut down on the feedback. It does help some.
I know I have written a lot but I just wanted to share my experience. I hope you heal soon and I hope I do too. Keep the faith.
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I am now 5 months post GK and have just started to experience facial twitching which is made worse by exersion. Dr. over phone says probably swelling of AN.
I am scheduled for an MRI in 6 weeks so hopefully will have answers then but wonder whether I should stop working out as this is when it is worst.
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facial twitching (hemifacial spasm) occurs in a few % of people after radiation, and can occur before in a few too. i had some before and a lot more since (treatment was 9 months ago). it can be swelling of the tumour, or direct effect of radiation. i have swelling on my follow up mri.
my neurosurgeon tells me it does not mean that facial palsy is more likely, and it will finally settle at some point (up to 2 yrs).
mine comes and goes - some weeks its most of the time; others much less. mine is particularly likely to occur when i wash my face/shower and also if i spend a lot of time smiling! mostly it is smalll twitches just visible close up - but sometimes my face screws up on that side for a short time.
maybe its the effort when you are exercising?
best wishes,
vikki
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Vikki, I know this was long time ago but you're feeling exactly what I feel now, I couldn't describe it better. Other symptoms have also increased since month 6 (I'm now in month 8) and things are nowhere near settling. I was given tregretol to try calm down my over excited facial nerve.
You had LINAC, just like me. I talked to a CK expert and he feels LINAC has a higher chance to directly hit the nerve. In that case things can eventually settle down, or they might not. If you're still there I would love to know what happened.
Mauro