Watching a Meningioma Brain Tumor

Man I don't blame you for not wanting your head opened back up. I am a young 66 year old just starting the wait and watch game. I had emergency surgery Sept 27th, 2018. Did 6 weeks of radiation and 6 weeks of tremozolomide. Right now everything looks good even looks like it's backing off a little. I'm doing old Chinese medicine and therapeutic doses of vitamin C IV drip every other week. I will pray yours backs off for good.

Robin, you asked "I am 59 years old and the surgeon has told me I will need to “do something” with my tumor someday since I am younger. What is the benefit of waiting? That is an excellent question. Like Scott says, every person's situation is different. My understanding is watch and wait is recommended when the risk of growth is lower than the risk and/or side effects of treatment. That is a dreadful over simplification. It is better explained here: https://www.braintumour.ca/5833/ask-the-expert-the-wait-and-see-approach

We have several members living with meningioma who have had treatment and others who are under "active surviellance" (my preferred term to watch and wait). Let me bring a few more members into this discussion @eleanor1931seminara1931 @pegorr @lindajean @barbarabx @nancye3 @cnesselroad.

If I were you, I'd ask the surgeon to explain more specifically about the position and rate of growth that may lead to needing surgery later. And if surgery is inevitable, why not sooner?

Colleen
I am new to the connect mayoclinic group discussion here and I am from Canada
I was diagnosed 12 years ago when I was 41 with a right side parasaginal meningioma that when found was about 2cm however I was symptomatic
I was told to watch and wait and did so for about 6 months but I had little quality of life and was experiencing personality changes
I got angry one day and turned to the web to answer my growing number of questions and fell upon the mayo clinic site
I actually called directly and asked to speak to a Neurologist or Neuro surgeon. My phone number was taken and within a few hours I was called back. Unfortunately I do not remember the name of the neurologist who returned my call but I will be forever grateful
He listened and asked questions and then advised me that if I was uncomfortable with what my Neuro surgeon had suggested to “ watch and wait” then I had every right to ask for a second opinion. He even supplied me the names of three Neuro Surgeons from my hospital here in Canada that I could call and get that second opinion from
I thanked him hung up and made my first call to Dr Hall at the Montreal Neurological Hospital. He took me seriously confirmed I was symptomatic and fast tracked me to surgery
After 7.5 hours of surgery a 6.2 cm (yes it had grown rapidly) grade I tumour was removed that had begun to attach itself to the falix the main artery of the brain which had I continued to “watch and wait” would have made the tumour inoperable
I am forever grateful for the day I finally got angry and landed upon your institution and who provided me sound medical guidance because I am here to talk about it and lived to see my grand daughter come into my world
If a patient is not comfortable with the “watch and wait” approach they should know and be encouraged to get a second opinion this is your life not anyone else’s

Colleen
I am new to the connect mayoclinic group discussion here and I am from Canada
I was diagnosed 12 years ago when I was 41 with a right side parasaginal meningioma that when found was about 2cm however I was symptomatic
I was told to watch and wait and did so for about 6 months but I had little quality of life and was experiencing personality changes
I got angry one day and turned to the web to answer my growing number of questions and fell upon the mayo clinic site
I actually called directly and asked to speak to a Neurologist or Neuro surgeon. My phone number was taken and within a few hours I was called back. Unfortunately I do not remember the name of the neurologist who returned my call but I will be forever grateful
He listened and asked questions and then advised me that if I was uncomfortable with what my Neuro surgeon had suggested to “ watch and wait” then I had every right to ask for a second opinion. He even supplied me the names of three Neuro Surgeons from my hospital here in Canada that I could call and get that second opinion from
I thanked him hung up and made my first call to Dr Hall at the Montreal Neurological Hospital. He took me seriously confirmed I was symptomatic and fast tracked me to surgery
After 7.5 hours of surgery a 6.2 cm (yes it had grown rapidly) grade I tumour was removed that had begun to attach itself to the falix the main artery of the brain which had I continued to “watch and wait” would have made the tumour inoperable
I am forever grateful for the day I finally got angry and landed upon your institution and who provided me sound medical guidance because I am here to talk about it and lived to see my grand daughter come into my world
If a patient is not comfortable with the “watch and wait” approach they should know and be encouraged to get a second opinion this is your life not anyone else’s

Hi @angela66, welcome to Mayo Clinic Connect. What an amazing story. While you don't know that name of the Mayo neurosurgeon who kindly helped you get a second opinion in your home country, I will share your story with the department to show the impact of going above and beyond. Watch and wait can be the right course of treatment. In your case, your instincts were right. It was time for action and thank goodness you took it. How old is your granddaughter now? Did you have any treatment after surgery?

I have a 3.1 cm frontal convexity menginoma with exerting mass effect! I have terrible pressure in my head my arms and legs are week i have ringing in my ears! Head continuous! I go back Sept 18th hoping he will take it out! I am miserable! Depression anxiety and panic attacks! Im scared of the surgery though! But tired of feeling like this!

@tonj657716, I can imagine that you feel miserable. When you go for your consult on Sept 18, let your doctor know that you're scared and that you've been suffering from depression, anxiety and panic attacks. Your team can help you get the support you need to see this through. You're not alone. Perhaps @mrector @kmart and @pegorr can share some of their experiences with you.

While we wait for others to join the conversation, You might like to read this conversation.
- Life: How do you not let a brain tumor take over your life? https://connect.mayoclinic.org/discussion/life/

Is your upcoming appointment a consult for surgery?