Cavernous sinus meningioma

Hi @loolookirl You should be referred to a neurosurgeon. The Neurologist did the same to me by dismissing me and saying it was very small. I was in so much pain. My eyes crossed which caused double vision and my face was numb plus all the other symptoms you are having. I found out the meningioma was small however it was pressing on the cranial nerves. The unbearable shooting pain was due to trigeminal neuralgia and the Neuro surgeon placed me on Tegratol 300-500 mg 4-6x per
Day until they could schedule the gamma knife. The pain went away within a few days, double vision for better after 4-5 months. The numbness may also take a few weeks to improve. Also ask the nuerosurgeon if possible Tolassa Hunt Syndrome (inflammation in the cavernous sinus) and see if antibiotics and steroids will alleviate the pain and numbness. Hope this helps.

Hello, Juliana. Two years ago, I was diagnosed with a very condition very similar to yours. I had a large meningioma wrapped around my carotid artery and right optical nerve. Fortunate for me, though, I had no symptoms. I was referred to Oregon Health Sciences &University in Portland (not too far from you in Seattle) for surgery, by Dr. Dogan. Dr. Cetas is well known there, too. It was a 13-hr surgery that removed most of the tumor. I have had little in the way of side affects and no vision problems. Because there is still a remnant of the tumor remaining, I have had followup MRI’s, initially on a 6-mo. frequency, now on a 12-mo. frequency. You might check out the OHSU neurosurgery group and arrange for a consult. They will be straight with you on whether it is operable or not operable. Best wishes and good luck to you!

I recently had my second meningioma of the cavernous sinus area. I had three tumors . All three are en plaque meningiomas. Unfortunately they can not remove all of the tumors based on where they are. Optic nerve, carotid artery and the spenoid wing . I don't know what to expect for my future but wanted you to know that I was told by Dr Morcos of Miami University it is to dangerous to gamma knife based on the area. I hope this helps . you are not alone

I’ve had two surgeries in that area
If you want my experience with them let me know
I’m not going to go into details here because it’s a long response
My first surgery was at moffet Cancer Center in Tampa and my most recent which was only a couple months ago at University of Miami
I know it’s scary to be diagnosed with any kind of brain tumor at the meningioma in my case three has definitely been a challenge in my life
Sending since your thoughts
Lyndi

I was diagnosed with a right CSM (small 10mm) 12 months ago. On WW. Initially, only constant headache, for which I receive occipital blocks with some relief. Recently, within the past 2 months, my face has felt like pins & needles and progressed to feeling like it burns. It's usually present around the chin area and travels up to the entire face, sometimes includes my tongue. Duration varies. I've also had 2 short episodes of double vision in right eye. Due for MRI in a week with NS appt. on Feb. 2. A bit anxious that these new symptoms indicate growth and possibility of need for surgery or radiation. Thanks for listening. Any ideas? I know....wait for NS appt. I got to Jefferson University NS in Philadelphia.

Update: had my 1-yr MRI 2 days ago. My original meningioma is stable but now I have another, same size but on lgreater wing of left sphenoid bone. It was not on the MRI 1 year ago. Is this unusual? of concern? reason for surgery? NS appt. 2/2/23. Thanks.

Hello @linnyg. I see your NS appointment is coming up next week and I am sure you are anxiously awaiting that opportunity to get your questions answered about your MRI.

In the meantime, I'd like to bring in members @lyndi @fiddlinchuck and @jrt26 who have experience and have been in this discussion recently. I am hoping they can come in to support you until your appointment next week.

Have you had any additional information shared with you since your last post?

Thank you! No further info. Can’t wait until next week’s appt!

Hello @linnyg, I am sorry to hear about the outcome of you recent MRI. Unfortunately, I do not believe that your results are unusual, which is why you are being monitored annually, as you will continue to do if you have the surgery. While you should ask your neurosurgeon about the necessity for the surgery, I can share what I have learned after having had surgery to remove a large meningioma 4.5 yr ago. If feasible, surgical removal of the growth is a very good option because the larger it gets, the more potential it has for causing problems for you, including potential vision and/or hearing impairment, speech and/or mobility impairment, and a whole host of other undesirable effects. The surgery itself is not without risks, but in many cases the benefits outweigh the risks, a good discussion topic to have with your neurosurgeon. I wish you well at your upcoming appointment and on what ever path forward you choose. Best to you!

Thank you so much!