I posted recently on a thread about fatigue but I am looking for any advice I can get so I guess I will spill the whole story. I first had symptoms of facial numbness 30 years ago (at the age of 19) and at that time was told I had some weird virus that was affecting my cranial nerve. Was given anti-inflmmatants and told it would go away, which it did. Over the years, I had many episodes but always a different combination of symptoms--vertigo, facial tics, hyperacusis, facial cramping or numbness, occasional slurring of words. But they were always slightly different and accompanied usually by flu-like symptoms. When I was 40, I was told that I had a rare form of Ramsay Hunt Syndrome which is best described as a form of Shingles except affecting one half of the head instead of one half of the trunk. As I had had chickenpox at 18--just a year before the symptoms started--didn't seem too farfetched. I was told to start antivirals within 72 hours of when it flared up and it would go away. So this is what I did for another 8 or 9 years.
Fast forward to this February. My husband and I were on a trip to celebrate our 25th wedding anniversary when I started to have facial cramping. Didn't have my meds with me and so I wasn't surprised that the symptoms didn't subside right away and prepared myself for the standard 6 weeks of a flare up. In the meantine, my husband was selected for a new position, we moved to TX from the UK, and were busy with integrating into our new roles and new community. But by the middle of April, the numbness and cramping had spread farther into my face than ever before, basically affecting the entire left half of my face and making the left side of my tongue numb. I was also experienceing significant facial pain which had never been a symptom in the past. By chance I had been diagnosed with arthritis a few months before the move and my GP had advised me to visit my new GP after the move to request MRIs of my neck and upper back. While visiting her, I mentioned that the Ramsay Hunt symptoms were worse than ever before and was there anything I should be taking for the pain. She asked which Neurologist I was seeing (none), when was the last time I had seen a Neurologist (never) and immediately made an appointment for me. Saw the Neurologist who said that she had never seen anyone with RHS who was NOT immune compromised and had symptoms starting so young and asked when the last time it was that I had an MRI of my brain (never). So a week later, had an MRI and was told I had a 2.5cm AN on the left side. Was sent to an ENT specialist wgho recommended I see Dr. Brandon Isaacson at UT Southwestern in Dallas (we live 4.5 hours away). So now I am sked to see both Dr. Isaacson, who is a Neurotologist and Dr. Sam Barnett, a Neurosurgeon, on 18 June.
I'm told by the docs I have seen so far that this thing will have to come out surgically because it is pressing on the brain stem. I'm also told my hearing and balance are much better than they should be. If the tumor has been growing for about 30 years, the long time my body has had to adjust may be the reason why. I was put on Neurontin/Gabopentin after I first saw the Neurologist and it immediately took away the pain. Now, the pain is starting to slowly come back along with other symptoms. The area of my scalp above my left forehead itches insanely!! And every day the facial numbness and pain is different, some days better, some not. Lately I have been feeling as if the inside of my mouth is swollen (it's not) and am having more difficulty enunciating clearly. A few days ago it felt as if everything was pulling toward my ear but now it feels as if everything beginning at my eyelid is pulling down. I thought it was my imagination but my husband tells me that yes, my left side is beginning to droop. The fatigue is quite dramatic as well but I don't know if that is from the meds or another side effect of the tumor. As I've had significant fatigue for years, I'm inclined to think it is just exacerbated by the meds.
I am concerned about recovery and long term effect but with a complication--I am a musician. I have been an instrumentalist (flute) for over 35 years so the thought of losing my hearing on one side is bad enough. My ENT has already recommended a BAHA implant so there is a work around and I think I can deal with the hearing loss. I am much more concerned about the facial effects. If I cannot control my mouth/lips/tongue, I simply cannot play. No embouchure, no me. The thought is quite devastating.
I would greatly appreciate hearing from anyone about their recovery from surgery, specifically about facial nerve issues and progress (or not) after surgery. I don't know if there are any other musicians on here who could prepare me for dealing with the SSD or anyone else who has experience with BAHA but I would be grateful for any stories--good or bad--you could share in order to prepare myself.
Thanks in advance,