ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: MarkS on May 08, 2017, 01:44:18 pm
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Hello,
I am more fortunate than many posting here, as I have not had any facial weakness issues; all the muscles work fine. However I've got some substantial loss of facial sensation on one side. Gums are affected as well. My surgery was Mar 21. The tumor started causing this before the surgery, and after surgery it was much more pronounced (presumably due to the surgeon having to disturb nerves in the area just to get the tumor out). One side of the tongue was affected well. Scalp around ear near incision is also heavily affected. It had all been slowly recovering for some weeks, and then one morning a few weeks ago I woke up to find I'd had a "relapse" and everything was just almost as numb as right after surgery. Doc said that some "fluctuation" in symptoms is not unexpected and I just have to wait it out. It's recovering again, but just as slowly as before slowly. Has anyone else had experiences like this?
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Many AN patients are on a steroid taper following surgery to mitigate swelling and inflammation, once the taper is complete it is not unusual for delayed complications to begin. It happened in my case.
Also some surgeons refer to the post-surgical euphoria effect. We are so glad the surgery is behind us, that we initially fell better than we actually do.
In my particular case, I had numbness in mouth and chin before surgery, it was more pronounced after the post-surgical decadron taper ended but over time it reverted to the per surgery extent. I then had GK 5 years later for regrowth of tumor remnant and had increased numbness 3 month after treatment as well as grade 4 paralysis. The numbness has again gone back to where it was before GK - after a 4 week taper of decadron.
My scalp has been numb on the affected side from my temple to above my ear since the operation, I assume it is scalp nerves affected by the incision, which was small, but I am numb over five years later.
Did you have steroids post-surgery?
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After the regrowth and the GK was the paralysis back when you first had surgery. Did it set you back on your recovery. I had surgery 6 months ago. My 3 month MRI showed some regrowth but it might have been merely post operative changes. I have my MRI tomorrow and hoping the remnant is stable as its on my facial nerve. I'm slowly recovering and hate to go back to square one.
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Not sure what you mean by your first sentence. To be clear, After surgery in Oct 2011 I left the hospital with a decadron taper, following the taper I experienced HB Grade 2 facial weakness which another round of decadron resolved completely in 2 weeks - I had normal facial function.
After GK in Oct 2016, 3 months after to be exact, I again experienced weakness, this time HB Grade 4 paralysis / weakness which has partially resolved with a 4 week taper of decadron. Am probably Grade 2 now.
My GK paralysis was due to excessive brain and tumor fluid / swelling from central tumor necrosis, an unanticipated and rare (1% chance)
complication of GK for AN's. The neurosurgeon said he believes the weakness is just a "bump in the road" for me, though complete resolution of edema in the brain adjacent to the tumor is unpredictable.
My next MRI is May 22, 3 months since the last one. My follow up MRIs's always denote post surgical changes so I wouldn't worry too much about that.