Learn how to use Mayo Clinic Connect
Request an Appointment
I'm looking for others who had this surgery and how their recovery is going.I had my surgery 5 weeks ago. Recovery is going well. I have questions for people who have longer recovery time
@julie1976 I started losing vision in my left eye. The eye Dr thought it was glaucoma but my vision rapidly got worse. Finally I had a MRI ordered and found the tumor in July 2018. They don't know what caused it or how long I had it. The tumor is wrapped around my carotid artery and optic nerve so the neurosurgeon could only get 85% of it. I have lost most vision in left eye and will eventually lose all of it in that eye. I will go for MRIs regularly to make sure everything is okay.
Jump to this post
@mrector thank you for your reply. Everyone's story is different…I guess I'll find out more information about mine at the post op
thanks 🙂 May I ask what is trigeminal neuralgia I'm pretty new to all this . I have questions for my NS I don't even know the name of what I had. I'm sure this is all info for the post op
@julie1976 Trigeminal neuralgia is a chronic pain disorder that affects the trigeminal nerve, a cranial nerve. In my case, it was the reason I found my tumor. For five years, I had been experiencing pain, numbness, tingling, burning, on the left side of my head, face, and mouth that could be a level 2 pain one day, and a level 10 the next. I explained this to several doctors and dentists – they all said it was likely due to a root canal that damaged the nerve. It wasn't until I was at a level 10 for months straight and went to an oral surgeon and told him the pain felt like there was an infection in my brain. Finally, he became concerned enough to order an MRI, which revealed the meningioma right near the nerve. The pain since surgery has subside tremendously. It's not gone, but it is manageable at a level 2/3 with an exacerbation to a level 5 during the times I mentioned in my last post.
@ccmars Wow! So glad to hear that surgery helped. With pain that bad…anything is something.Thank you for your reply 🙂
@julie1976 Moral of the story….listen to your body, trust your instincts, if something doesn't feel right, press your doc! Good luck, be well!
@ccmars Exactly. When I was starting to have problems…I asked my doctor…could it be my heart? She said Julie your heart is just broken ( I had lost a friend) She later called me in the ICU to apologize . I told her…you are only human and we all make mistakes. Not many people think heart when it's a 30year old female. I've had this doctor for 25 years now. I hope from now on when I ask for a test we just do it lol
I have had 3 surgeries and done radiation in a 5.5 year time period. Mine first tumor was found because we thought I had trigeminal neuralgia. Turns out the trigeminal nerve was wrapped around a meningioma and that was causing the pain. I have another tumor on the same side but in a different location that effects my vision and hearing.
@handerson31276 thank you for your reply. I'm sorry this is an ongoing problem for you.Prayers and positive thoughts 🙂
I had two meningiomas .. one in my nasal cavity one wrapped around left optic nerve. I had a 2-3 month recovery. I now after 10 years have reoccurring ones in the same spots
@kellybeller I am so sorry! Did you have surgery 10 years ago or treatment?
I had my surgery in 2009. Recovery was quick. I left the hospital ahead of schedule and returned to work ahead of schedule. My issues came after the recovery period. It started with pain near the incision site. This progressed to problems with speech and memory with the memory getting worse as time progressed. I would be happy to answer any questions you might have. Good luck with your recovery.
I had surgery in Oct 2017 I'm curious to know how soon after surgery you had your issues?
I began having problems about six months after surgery. I initially attributed it to my fibromyalgia but as things got worse I knew it wasn't just the fibromyalgia.
I'm curious Have you ever heard the word "encephelomalacia "? My doctors keep saying it's normal after brain surgery but they can't explain the dizziness or imbalance I have
Create an account to connect with other patients and caregivers like you.Ask questions, get answers, and give and get support.Also follow blogs from Mayo Clinic experts.
Already have an account? Sign In