Meningioma discovered: Mirrored symptoms of my multiple sclerosis (MS)

@candersen3, I'm glad that the meningioma was found early while it is still small. I understand however that this is frightening to wait until January for an appointment with the neurosurgeon. I'm tagging @vermont10 @jhbl @rosebud1981 @bosslady18769 who also have experience with multiple sclerosis (MS ) and benign brain tumors, meningioma.

I was wondering the same question as you, How do you know if the symptoms are related to the tumor or to MS? Are the symptoms constant or do they come and go? Have you had these particular symptoms (fatigue and vision) with MS before or are they different?

Hi @candersen3 My my don’t we have a lot in common! My tumour isn’t in the same location as yours but I also have MS. In 2021, I was having what I thought was an MS exacerbation + daily headaches so I saw my Mayo neurologist and had an MRI. My MS was stable with no active lesions but I had a 9x9x2mm L occipital tentorial meningioma. My (ex) neurologist felt that my symptoms were not related to the tumour but rather to my grief. I had lost my mom 8 months prior. Really??? Needless to say I went to a neurosurgeon. Already long story shorter…I’m an RN and I didn’t want to “watch and wait” because mine was impeding on a critical area so I had the craniotomy.
In the beginning of my whole fiasco, the symptoms I was experiencing were similar to my MS symptoms but were somehow different. I had slightly new and different symptoms along with the usual MS symptoms. I also had daily headaches and new dizziness/balance issues. My vision was “weird.”
There’s no way anyone can answer your question of whether or not a craniotomy would improve your life. The outcome can be different from person to person. I’ve talked with many people who have had great results along with some people who had a far different story. I’m one of the latter unfortunately. My best advice would be to get a 2nd, 3rd or more opinion and make sure that your surgeon is experienced with your type of tumour. Also, find others like you/us! to talk to. I found an amazing support group on Facebook. There are people with many different experiences and outcomes and plans. You can learn a lot from others. The group I found is Brain Tumor Companion. I hope your journey is far more successful than mine!
- Jan

They are more consistent I think, as in not as sporadic as they are with MS. I did experience some very intense muscle cramping that left me where I could not walk and could only be relieved by steroids that has never happened before

How long ago was your surgery, have the symptoms retracted? How was your recovery, please share as much as you feel comfortable with

The answers to those questions might not be of any help to you because it turned out that my neurosurgeon removed a different lesion called leptomeninges. My tumor is still there, untouched after undergoing a craniotomy and a cranioplasty to cover the hole in my skull with a titanium plate. It has now impeded on my transverse sinus and is considered inoperable. Needless to say, I’m having all of the same symptoms that brought me in for the MRI. 😞
About a week after my surgery I suffered a small stroke. I’m still very slow with reading and writing; my knowledge and memory are very limited now - I’m an RN for 20 years in a very respected position and now I don’t remember much of anything that I knew before. It’s hard to say if this is due to my tumor, the surgery or the stroke. I’m very upset with doctors and my health care. Nobody can or will give me answers regarding all of my issues.
I’m so sorry I can’t be of much help to you. The size of the tumor shouldn’t keep you from wanting it removed if it’s causing you symptoms. If the symptoms last longer than a “typical” MS attack or are different in any way I’d recommend discussing treatment options with your neurosurgeon. Especially since it’s pushing on your trigeminal nerve.