Hello @tarat and Welcome to Mayo Clinic Connect!

Thank you for posting your question here. One of the best advantages in our community is that we are able to learn from others posts, comments and conversations. Right now we don't have any community members here discussing your type of schwannoma. However, when we do have that new member join that is looking for someone with a hypoglossal schwannoma diagnosis, I will be sure to connect them with you.

@tarat, if you don't mind sharing, what symptoms were you experiencing when you consulted your physician? How have you been managing symptoms and diagnosis thus far?

Here is a link to make an appointment with one of our Head and Neck ENT surgeons. This appointment link will be a good place for you to call and inquire about surgeon specialties.
http://mayocl.in/1mtmR63 Please keep us updated with how you are doing!

@tarat I’m on a similar case. Did you make any progress?

@Jamie Olson. Hello I was diagnosed with a hypoglossal Schwannoma location is the right side pushing against my brain stem. I was diagnosed September 2017 but looking back at an MRI from 2012 I believe, the neurologist who I was referred to missed it. My migraines improved with medications and then in 2017 they changed for the worse. I started experiencing difficulties with swallowing, my voice started getting hoarse, the headaches were severe with lightning bolt like pain usually sharp pain in my right eye. Finally I was sent to get an MRI in September. I discussed surgery with my neurosurgeon, I asked about Gamma Knife because the surgery just sounded too risky. The team approved and November 2, 2017 I went in for the GM procedure. I might add that a very small meningioma was also found, it is located at the top of my head. Might also add the MRI from 2012 compared to the 2017 did show enough growth that contributed to my symptoms. The neurologist from 2012 noted chiari 1 malformation, this is what he discussed with me back then, he just told me not to worry about it as they were harmless. I am a call center RN, i did a lot of case management type of nursing over the phone full time. I stayed home for 3 days after my GK procedure. I did experience some migraines right after, nausea and just generalized malaise. In early January I started experiencing swallowing issues again along with migraines, I started losing my voice and for two weeks called my Neurosurgen and was told that it could not be side effects from GK. It got worse and my voice was pretty much a whisper. At the end of two weeks I called my Neurosurgen again but it was a Saturday so the oncall doctor said it sounded like side effects from the GK and started me on a steroid dose pack. He said most likely it was inflammation from GK (on the area treated ) and instructed me to call my Neurosurgen on Monday. I did, I was told an MRI was scheduled for a few weeks later and it could not be related to GK, the even though the on call doctor had told me it was most likely that. I was miserable with the migraines and and everything else going on. I was told to not go to the ED but I need d to go to urgent care and have them check me out for strep throat..... I knew it was not that but went anyway to appease them. After a 4 hour wait in urgent care the doctor said there is nothing i can do for you. I don’t need to get a strep throat swab done because we both know you don’t have strep. Go to the ED now! I spent 3 weeks in the hospital. Found out my right vocal cord had collapsed and had video swallow study, some abnormal findings there. I was taken off all my meds I was on due to a work related back injury and failed fusion in 2010. One of those meds was Lyrica. Everything abruptly stopped, by dayb2-3 I experienced the worst pain I’ve ever felt on the right side of my face. I was diagnosed with Trigeminal neuralgia. Lyrica was treating the pain so I didn’t know I had it. By the time I left the hospital I felt like I had suffered a stroke. I exhibited the classic symptoms. Right sided weakness, droopy eye and mouth. I checked out fine for stroke but something definitely was wrong..I had no issues with ambulation when admitted. When I left I had to use a walker. I couldn’t walk unassisted. I had neuropathy both legs and feet, arms and hands. Nauseous and choking on my own saliva when I laid down to sleep. MRI showed a large area around the tumor that they believed was inflammation, from GK. Over 5 weeks on steroids did not help, 4 infusions of Avastin and the neuropathy improved everywhere but my left leg, worse on the foot and my right arm being the worst on the hand. All of these symptoms persist and actually became worse about 2 months ago. New symptoms include severe pain with a burning sensation in EVERY single joint and what feels like fibromyalgia. started experiencing hormone issues in 2016 I believe, I was started on bioidenticals. They did not help the symptoms so after a year of being on them I asked if we could stop them. Hormones were checked and they were normal, I am sure it was because I was tested right before I stopped so of course they were normal. That was put aside when I was diagnosed with the two brain tumors. Currently they are once again abnormal and I had started on Estradiol about 6 months ago rechecked a month ago and they are worse. My PCA wanted to put me back on bio identicals but i declined and stopped the Estradiol because a doctor i had spoken to mentioned a correlation between meningioma sand hormones. Which my neurologist and Radiation Oncologist did not think were the cause of new symptoms that started two months ago. Leg weakness (bilateral); knee pain, trouble swallowing has returned and extreme fatigue. I met with the Radiation oncologist to review an MRI from December 2018 and was told that the tumor was basically unchanged from the original size, maybe a mm or so smaller. The area that the other hospital I was admitted to was mostly likely tissue damage, healthy tissue. He said Radiation was not an option due to my symptoms from GK. Surgery was not, he said he didn’t think anyone would want to touch that. He took my case to their Monday morning meeting and I was called to inform me that the Neurosurgen that did the GK with the radiation oncologist wanted to discuss surgery with me. I am not sure if I want that based on risks involved and the fact the radiation oncologist agreed it was very risky and doubted any Neurosurgen would want to do it. I’ve been off work over a year, lost my job when I had to go on long term disability. My vocal cord is still collapsed but function has improved. Probably the best it will ever be according to my ENT. I can’t work due to collapsed vocal cord and all my symptoms especially the right hand pain, I cannot type for long.
I feel hopeless, I don’t know that I feel that I can trust the neurosurgeon that wants to discuss it after all the awful experiences I’ve had and ending up in the hospital for 3=weeks. I felt like they ignored my symptoms and they insulted me with the strep test instruction. I would like to know if indeed surgery would be safe. If there is anything else out there for this awful tumor. If I need to worry about the meningioma and hormones plus this chiari 1 malformation. I know this is a lot but i am feeling so lost. Thank you in advance. Juana