worsening symptoms after mengingioma craniotomy

Thanks to the above people for posting regarding your experiences with meningioma. My journey started a couple of years ago. It has been growing steadily since it's accidental discovery. On the 24th of July, I have my first appointment with the brain surgeon in Erie, PA.

Here is the back story: It was discovered during an ER visit for a Posterior Vitreous Detachment of my Right eye. My PCP, at the time did nothing, but my mentally sharp Hematologist decided to monitor it after I took him the CT results. He ordered 2 MRI's about 6 months apart. It has consistently grown since having the CT in the ER. He recommended a neurologist who would not see me without my wearing a mask in January of this year. I opted to wait till the insanity ended. Just prior to that, I found a neurologist locally who would see me without a mask and after looking at the CT and MRI's, he said that I needed a neurosurgeon.

My Meningioma is located in the "logic", left hemisphere of the brain. On the CT, the placement was described as being located in the left frontal parietal region at 9mm. The first MRI located it as being along the posterior left frontal calvarium and it measured 13 X 13 X 15 mm last August. Safe to say that it is located somewhere just under the Coronal Suture that separates the frontal from the parietal lobes on the left side of the brain. Perhaps you didn’t want to know the location of yours, but I needed to touch that area of my head. A follow-up MRI was done in March of this year and it had grown to 1.7 X 1.7 X 1 CM.

Dizzy spells started in June of 2021, a little over a year before the meningioma was accidentally found. I occasionally get them as of this writing (July 2023). Early on, these dizzy episodes involved both eyes. Sometimes neither eye would focus, or the Right eyeball felt like it was on a spring, popping out of the socket and whirling around. Sometimes I would see wavy lines in my field of vision similar to those seen while driving in the summer on a blacktop road, as the sun heats up the pavement. In the past year, the frequency has subsided, and now the dizziness involves the whole head. Even though my new PCP says I cannot feel it growing, I beg to differ. I feel pressure in the top area of the left side of my brain. This pressure is not the classic stabbing headache. It is intermittent and I feel it most in the morning. My eyes are “tired” frequently. My balance has been getting better. With the dizziness, I was loosing balance, falling to the right of my body since February of this year. I have always “caught” myself before hitting the ground. I figure my balance correction ability is due to the fact that I do a full body workout at the gym 3 times a week for 1-1/2 hrs at a time, weight resistance training with treadmill and recumbent bike for a cardio workout. I am in my 6th consecutive year of dutifully working to keep my body healthy. It’s the only thing I have going for me at 72. I should probably state, for those with in inquiring mind, that I am female.

I am curious as to what is discussed at the 1st appointment with the surgeon with all of you commenters. From research, I suspect he will order another MRI before scheduling surgery.

The vitreous detachment of my right eye has gotten better, but I still see flashes of light when I turn my head to the left. The eye "floaters", remain. 26 years ago I was "rear ended" while at a stop sign with my foot on the brake. I suffered whiplash. The floaters originally began with the car crash. What was once "dots" on my field of vision has enlarged to bigger dark circles and outlines of circles. Pain in the arse stuff! I had my vision checked and received new glasses 2 months ago. Yesterday I noticed that I am having trouble seeing the eye of my sewing machine needles. Probably the most bothersome thing is that I have typing dyslexia. I have been typing for 56 years. I never look at the keyboard, I know what I intend to type, yet when I look at the screen after I find reversed letters and numbers. Thank goodness for spellcheck! English teachers will tell you that writing is recursive. Writers are constantly reworking a sentence, a paragraph, a composition to make it more clear and concise. Gone are the days where I could just type what I mean and mean what I type.

I mention the the crash because I'm wondering if anyone has researched the "why" of their meningiomas?
There is a reason/cause for everything under the sun. I was also punched in the face a few times adding to the dysfunction of neck's structural integrity. I perform range of motion exercises to my neck constantly to keep pain and stiffness at bay without drugs and so that I can safely drive the truck.

I'm assuming that I will not be able to drive if I opt for the surgery. At some point, even without it, driving will not be safe. That will make my life difficult. I have no support system. I am extremely independent. I want to die in my own home and not a nursing home or an assisted living center - I worked in those hell holes for years. Besides, they will not take me, I'm an anti vax. I intend to remain that way.

I initially saw a neuro-oncologist then a neurosurgeon. They showed me the temporal lobe tumor and the swelling on my MRI. The surgeon he won’t remove so much tumor that it causes worse problems like vision loss or a bleed. He said he couldn’t necessarily guarantee the symptoms I had would go away, but that it needed to be removed. I had a stealth MRI right before the surgery. Some of my symptoms are worse, but I don’t have seizure aura anymore. I am not where I was strength wise before surgery. That probably makes me feel worse. I have some blurry vision in my right eye. The tumor was around the optic nerve and the surgeon just removed what he felt he could safely do. There was mass effect on the 3rd cranial nerve so I’ve had some right droppy eyelid and drifting of my right eye to the side. It’s a little better than before surgery. There’s a risk of double vision if I have cataract surgery on that eye. I’m hoping all this plus the tremors, dizziness & balance problems continue. Morning headache was a symptom of my tumor. Before surgery I started having headaches during the day. It’s a long road. I’m working on patience and pushing ahead, but I still am concerned with getting back to at least where I was before surgery. My heart goes out to you. Meningiomas are generally benign but can be cancerous. I will have MRI follow ups.

Wow! Thanks for your thoughts.
When you you mentioned, "and drifting of my right eye to the side", I remembered something. In a picture of me when I was less than a year old, my right eye was turned inward. Mother later told me that it was "lazy eye" and that it corrected itself as I got older. I'm beginning to wonder if this eye problem occurred as a result of my older brother trying to snuff me out as infant. After birth, he repeatedly crawled into my bassinette and sat on my head. As a child, and a young adult, I had great difficulty trying to scream after I was assaulted. Mother called his actions "sibling rivalry", but an infant cannot "rival" back.

Please keep me and the group up to date on your recovery process.

Thanks to Mayo Clinic for sponsoring this place to share. It makes me feel that someone out there understands what I'm going through and that I am not alone on this journey. God Bless and keep us.

I can’t imagine sitting on an infant’s head would be good. I want to hear how you’re doing too! God bless!

At almost 3 mos. out I am noting improvements on my balance & less frequent dizziness. I am still clumsy but I did have some of that before surgery. My tremors have decreased in frequency but I still get them. I have been fearful my symptoms weren’t going to improve, but some of them have improved. Going into surgery I didn’t know things “could get worse before they get better.” The thing that prompted me to proceed with the surgery was I knew things could get a lot worse if the tumor wasn’t removed.

It has been almost 4 months since I had a resection of a parafalcine meningioma which had invaded the superior sagittal sinus and the calvarium. After surgery my right leg was paralyzed, had a few seizures while in ICU and spatial difficulty. After 2 weeks moved to a rehab hospital for another 2 weeks to have e-stim done and PT to assist in getting my leg to move again. When I left I was using a walker and the leg was slowly getting better I could move my toes and stand on it but it still felt very heavy. I have finally progressed to a cane.

At about 8 weeks my right leg became numb from the tip of my toes up to my hip and my lower back pain came back. I think using the walker I bent over more and it helped alleviate the lumber issues. My neurosurgeon had another MRI done which showed small venous infarction of the left paracentral lobule and the precuneus has evolved into encephalomalacia. He told me this was to be expected and things would continue to get better. Another neurologist he is now having handle my issues wants to do more testing.

Every answer I get is it will take time but things will get better. Why didn't someone warn me of this? I have no life now and just cry. I sleep on average 14 hours a day and told it is due to the brain trying to recover and some of the medications such as Keppra.

Has anyone else had an infarction or had complete numbness of a limb 2 or more months after surgery?

My daughter had a Craniomoty two years ago, she has encephalomalacia on the cerebellum and now on the left side of her brain. She suffers from trigeminal neuralgia, but she has been doing acupuncture to help with the pain.

I did not have those particular issues, but I was worse after surgery. A couple of symptoms I had before surgery are gone. Some remain and some symptoms are new. I have made progress with better balance, much less dizziness & fewer tremors. I’ve said they should tell you that you may be worse before you get better. My heart goes out to you. I was discouraged and cried off and on when things were worse. Keep fighting!

I will be starting acupuncture in September. I am hoping it helps. Is it helping your daughter?

Thank you for your reply. I agree they should let you know you could be worse before you get better. At least let your family know as well. My family does not understand.