facial paralysis as a result of tumor

Hi there. I lost my facial nerve in 2021 due to cancer surgery. They did some reconstruction at Mayo which was helpful but it does take some getting used to your new face. For the most part, at rest, it doesn’t look too bad but it shows up when I smile or laugh as one side stays kind of frozen.

The lack of my smile was the hardest but you eventually get sort of used to it. People will look, as they realise something is not quite right, but after a few years I promise that you’ll feel normal again.

Changingfaces.uk.org has some great resources and lots of personal stories from others going through facial differences. It’s not like other cancers as it shows clearly on your face. But the alternative of not treating it is even worse. If you take a look at untreated tumors on the face you’ll understand why we have to bite the bullet and go ahead with surgery/radiation.

Hang in there and I’ll keep checking back on your progress.

Hello @katiana, welcome to Mayo Connect. Like @clevyjam, my facial nerve was involved in my tumor and severed and then reattached during surgery. It is a slow process waiting for nerves to heal, but they do, just not quite normal again. I have lived with this for 13 years now. It is very hard to accept the facial changes, but there are ways to help. Look up Facercise books by Carol Maggio. Regular facial exercises can help quite a bit. It is just so hard to see yourself in the mirror and not wish for everything to look like it did presurgery. With time there is acceptance, but that is an individual thing, and even now I still wish for my more normal appearance. Try to stay positive, feel free to respond to the looks and stares with a quick explanation. I was a working veterinarian and clients thought I had had a stroke so I explained to them why my appearance changed. Somehow that helped me feel better about it. As for strangers' stares, it is what it is. And it is better than being dead from your cancer. Keep telling yourself that and be strong.

Thank you so much for writing. Love the promise of feeling normal at some point, and I wish you the best with your cancer treatments.

Thank you, I may reach out to you privately if that's okay. Will get the book! I am an explainer, too, if I can find a way to address it right off. For now I find myself avoidant with gatherings I would normally embrace, and my professional life is toast, being a psychotherapist and all! I have a question, it reads like they reattached your facial nerve at the same time they were doing the surgical removal of the tumor? I am making a list of questions for my upcoming appointment with my surgeon before I schedule this procedure. Anything you wished you had asked beforehand is welcome! so grateful.

I had a brain tumor excised in 1989 and as a result my right eye lid has been closed...the right hemisphere of my head is still numb. nothing else sags except that right eye lid. this happened at age 40 and to this day haunts me. I get the double looks, the bold remarks of "can I ask you a personal question" and other stuff that haunts me. After all this time I am still very self conscious and often just come home from outings because I get tired of the "looks!" I felt the neurosurgeon should have sent me to a higher level of care particularly when he didn't have a clue as to what kind of tumor it was, only that it was benign, which was a good thing. I still had a strong professional career (as a nurse exec, ) so was not effected in that manner. I finally wrote him a two page letter stating that he was professionally remiss by not sending me to a large medical center with a strong neurology team...but he let his professional curiosity get the best of him and he was way to young to have that experience. I was young, scared, with a husband just as scared and two small children. To this day it is a demon for me and probably always will be. I am a strong proponent of consulting with the experts and have refused any and all surgeries (para thyroidectomy and Zephyr valve placement) to the Norman Center in Tampa and Duke respectively.

Yes, Katiana, at Mayo Rochester an ENT surgeon removed the tumor around the ear in the temporal bone. The second surgeon was both ENT and Plastic surgeon and did neck dissection and removed the section of the facial nerve and anastomosed the remaining ends. I know that made my healing of the nerve faster, but nothing is going to prevent the synkinesis that results from it. While it would be nice to connect yellow wires to yellow and blue to blue, etc, that does not happen and as the nerve heals we find out that things don't quite work like they used to. If I want to raise my eyebrow a bit, I have to try to smile real hard on the affected side. After 13 years I am still learning who controls what. I was told that my eyebrow control would never come back and that is pretty much true. The right side of my lips will not close tightly so no whistling and eating is in small amounts as a full mouthful might just spill out. But I can smile this new smile, such as it is, and mostly close my eye and those are the important things. Adding in Lion's Mane mushroom about 5 years ago actually brought me more healing and function. It also is involved in blood clotting so you cannot take it around surgery, but read up on it for nerve function. The book I took that from is The Rebel's Apothecary by Jenny Sansouci...a great read if you have cancer.
Questions to ask include details of the actual procedure, scarring, and aftercare. Always ask about possible adverse events and odds of seeing this postop. What timing is expected for return of nerve function? You can ask about anastomosing the facial nerve, and if the surgeon would not attempt that then find a new surgeon. I believe Dr. Moore at Mayo also did surgeries to repair facial nerves that were severed in previous surgeries elsewhere. They do grafting to repair these nerve also. Everyone is different, but if they are doing a lot of this type of surgery the surgeon and/or his nurse can give you pretty accurate information on what to expect. I was getting some muscle tone back slightly after 4 months and by 6 months I could actually see some difference.
I don't know just what your surgery will be, but it was tough waking up from anesthesia to half my face paralyzed, poor tongue control, and nauseous from pain meds. I spent many hours in recovery vomiting and trying to figure out how to get it out of my mouth. I didn't know going in if my facial nerve could be saved or not as my nerve signs preop were minimal. It was a tough time adjusting to the sudden change. I certainly didn't go out anywhere except to radiation 5 days a week. My first time to a restaurant for lunch after radiation, our lovely waitress leaned over and said to me not to worry, as her daughter had Bell's Palsy and it all healed and now you would never know it. I will not forget that kind lady as I was so terribly self conscious. So be strong, it could get worse before it gets better. Make yourself some short term goals to achieve, live each day with gratitude for opening your eyes and use it to find something you love. Know that despite all you are going through, there is a light at the end of the tunnel and this new normal is better than the alternative. I hope you have a good support system at home....let all the folks who offer to help actually do things for you when you don't feel like being in public. Feel free to privately message me nut know that our discussion on public forum may help others who are in a similar situation. Do you have a surgery date? Has your surgeon done a lot of these surgeries? Don't hesitate to ask for a referral if you aren't comfortable. When I asked my local surgeon about his experience in my rare location tumor removal, he hedged. I asked for a referral to U of Michigan hospital an hour away. The surgeon there seemed quite experienced but they couldn't schedule the surgery with both surgeons for 7 weeks and that was unacceptable for me. That's when I approached Mayo and had an appointment in a week and surgery 5 days later. Sometimes things just happen as they were meant to.

That sounds really tough kdalta75 @kndaustin71. You have lived with a lot. Have you ever seen a specialist about possible repair to the eyelid? Is there nothing that can be done? Have you tried for an appointment at Mayo Jacksonville?

At my age and after all this time, NO! At the time I was very aggressive in finding a solution....The other issue post-op was that even though I had sight in my right eye it was frozen forward and can't move, so in essence even if the lid were able to be raised I would still have a weird look with my left eye having normal movement and the right stationary! I am pretty much over the medical care that I have experienced and leery of any physician that I go to. I live in a city that has a medical school so most of the physicians have been to medical school, internship, Residency, Fellowship at the same place. NEVER should be allowed. They can't even give a decent referral because they haven't been outside the state......and to top it off, these same physicians are in academia! I do deep dive research into all the larger medical centers, NIH research and large institutions, ie Mayo, John Hopkins, etc. To say that I am bitter re the medical care that I have received would be an understatement!