Watching a Meningioma Brain Tumor

Hi. I’m sorry about your diagnosis. Are you symptomatic? Is yours in the foreman magnum? I ask because you mentioned the brainstem. Foreman magnum meningiomas are very rare. I was diagnosed a year and a half ago and the only person I’ve connected to lives in Egypt.
I had a failed craniotomy last June. They got all the way in, but once they reached the tumor, it was deemed too dangerous to even biopsy. It was fully incased in nerves...like a tangled birds nest. Had he tried to get a biopsy, I would have woken up with a feeding tube and the inability to speak or swallow.
I am a professional singer/entertainer and I’m glad my surgeon made the right call. I was treated by a renowned doctor in Los Angeles. We still don’t know if it’s grade 1 or 2 or if it’s anaplastic.
My brother succumbed to anaplastic astrocytoma with glioblastoma just one month before my diagnosis. It is thought that his too started as a meningioma.
It’s been an emotional rollercoaster to ay the very least. My brother and I were very close.
I’m in the process of seeking a 3rd and 4th opinion. The craniotomy was no picnic and mine has since collapsed making the pressure even worse.
I have good days and some very bad days. I’m still working because I believe a body in motion stays in motion...but it’s getting harder. My legs and arms are getting weaker by the day and the pressure is immense. There is a major artery involved in the tumor and I fear stroking out.
I’m a tricky and difficult case. Waiting is torture but the thought of another failed surgery holds me back.
Have they discussed radiation with you?

Hi, I was diagnosed with 6 tumors in 2010, some large, some small, and some in iffy places. Since then I have had 2 craniotomies, 1 gamma knife, and 1 cyber knife radiation. After the 2 craniotomies, I opted for radiation on the small tumor by my brain stem, the small one on the left very close to my optic nerve, and the left-over mass & bone with tumor pressing on my right optic nerve. In 2010 I was 62 and made the decision to remove as much as possible because of my advancing age:-) My thinking was I'm healthier now:-) then I might be 10 years from now which might make surgery and recovery easier. I opted for the gamma knife and cyberknife in 2012 and 2015 because I didn't want to risk another surgery. Two seemed to be my limit. A lot of talk with husband and family, lots of prayers, advice of my neurosurgeon helped us make this very important decison, however my neuro did suggest a key-hole surgery for the tumor next to my left optic nerve. After much consideration, we decided on the gamma-knife radiation. These are huge decisions and require lots of research, etc. I know more about my brain now than I ever did, and I was able to prove to my husband that I really did have one:-) While this is a tough situation and I don't always feel good, I weigh out my blessings versus my tumors, 1000's of blessings 6 tumors, and try to find the bright side. My license plate reads, fndthfn, Find the Fun, not always easy, but do-able. I wish you all the best, we're walking this road together and as I tell my friends, "Love Will Keep Us Together". Peg

Back pain is pretty bad, I understand your pain there! I will keep you in my prayers! Hopefully you get to feeling better soon and some real good pain relief soon. Dr. Don't really listen anymore and I think its bizarre. I am definitely taking everyone's response into consideration and weighing my odds. Thank you for your response. Wish we all could live closer would be good for in person support, but since we can't be, this group is already helping me, not to feel like I'm crazy and all alone. Prayers to you my friend

did mu reply go only to the bosslady and mrector wasn't included?

I'm glade you are feeling better, and had a successful surgery! That is awesome news! Prayers are with you that you may remain healthy!
I am not on any medication he ordered an eeg, maybe after that!
I will check out the resources you gave me and hopefully I too can find a dr who will listen and help me get this out of my brain or ease my mind to help me live with it!! Thank you for your advice and your reply

I didn't even know I had the seizure until the next day, my husband thought I had one related to medication I was on, I had an MRI in November because I thought I was having symptoms related to ms which runs in my family, balance issues, weakness in my legs and just feeling tired. They found the 6mm meningioma on superior frontal lobe on left side. Since the diagnosis I just didn't want to think about it and go on with life. Then 3 weeks ago I started having headaches and then my husband told me about the seizure. I have also been terribly tired and feeling exhausted. Also I'm forgetful I went to my follow up and dr is going to do an eeg, and in may wants to do an angiogram and repeat MRI. I thought ok I will repeat test and if I'm still uncomfortable with him I will go to Nebraska Medicine which supposedly have good neuro oncology drs. I just worry because of my symptoms now. I feel they are related to the meningioma.

FYI - the reason for the initial CT scan beong done in Emergency was because I wa unconcious & really out of it. So.the doctors needed to find out what was wrong with me
Were you unconcious after your seizure?

Hang in there! I, too, had the same brain tumour as you. It was a diagnosed 5 yrs
ago after having a grand mal seizure (I'd never had epilesy) &.never had any symptoms.
Emergency did a Ct scan & a benign Grade 1 menongioma tumour of 3m size was found. OMG!!!
I was only 64 yrs old & never been sick or had surgery
OMG!
I could not have the surgery the next day - not coping with the news & since I was on my own , decided to go jome & figure things out. Started to "shop around" for the best neurosurgeon in the country as well as the best hospital. I interviewed 3 NS & finally.settled on the one who did the surgery. He was successful in removing the entire tumour without any tendrils breaking thru the membrane protecting my beloved brain!
So, from my experience & learning from so many other survivors of meningioma tumours, get/demand an MRI & shop around for the be NS you can find.
Are you on any meds to prevent seizures - do you have balance provlems?
Also che k the American Brain Tumour Society's website for their excellent resources!
Breathe & take one step at a time!!!
You will make it through this. Our brains are unbelievably tough and bounce back so many times.

You're welcome. I'm going through the same thing with my back. I just had 4th spinal injection today, first 3 didn't work. Dr's don't seem to take us seriously anymore. We have to be persistent to get answers. You know your body better than anyone so I would definitely get a second opinion.

The dr didn't seem to be concerned and kept repeating that these meningioma are always slow growing and would be decades before I noticed symptoms, however I have never had a seizure before and have only had the 1 so far. The migraines are persistent and these symptoms have only been present for about 3 weeks. Thank you for your reply, I was thinking about going to a neuro oncology doctor just to make sure all the i's are dotted and t's are crossed. Especially because I have other health issues
I pray that you get to feeling well and I will pray for a speedy recovery!! God bless