← Return to facial paralysis as a result of tumor

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facial paralysis as a result of tumor

Ear, Nose & Throat (ENT) | Last Active: Mar 28 2:14pm | Replies (8)

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@katlena

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.

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Replies to "Thank you, I may reach out to you privately if that's okay. Will get the book!..."

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.