Watching a Meningioma Brain Tumor

Posted by robinem @robinem, Feb 8, 2018

I’ve just been diagnosed with a 2cm meningioma tumor on the right front of my head. 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?

@mrector after meeting with Dr. Riemer he ordered another MRI to rule out the possibility of an aneurysm due to the impact of the ICA. I meet with his partner the day before surgery as both doctors will be involved during the surgery. Can you share with me what to expect after surgery, ie, while still in the hospital and then after going home. I hope you are continuing to heal and gaining strength. I think it would be helpful if we all lived close as to have group meetings to help each other through this. I lost my daughter 1.5 years ago to blood clots (she had pancreatic cancer).

Liked by mrector

REPLY
@kmart

@mrector after meeting with Dr. Riemer he ordered another MRI to rule out the possibility of an aneurysm due to the impact of the ICA. I meet with his partner the day before surgery as both doctors will be involved during the surgery. Can you share with me what to expect after surgery, ie, while still in the hospital and then after going home. I hope you are continuing to heal and gaining strength. I think it would be helpful if we all lived close as to have group meetings to help each other through this. I lost my daughter 1.5 years ago to blood clots (she had pancreatic cancer).

Jump to this post

@kmart I am praying for you. I'm sorry for your loss of your daughter.
After surgery I was in ICU for 2 days. My left eye swelled shut after surgery and face was swollen. I was on morphine so I don't remember a lot. I don't remember being in pain. When I came home I took Tylenol for any pain I had. I was very weak so I stayed with my mom for a few days. I had no energy and slept a lot. After about 7 weeks after surgery I started feeling like me again. My energy level is still not great but I also have a bad back, so that doesn't help. My vision is getting worse in my left eye but my neurosurgeon said that would happen. I will have MRIs every 6 months for the rest of my life to monitor the remaining tumor and if it grows I will have radiation therapy. If you have any specific questions please ask and I will try to answer them. I'll post a picture of me almost 2 days after surgery so you can see. It looks worse than it felt

F92C193B-03E9-4BD2-8BFF-109FFAC20A67

REPLY
@mrector

@kmart I am praying for you. I'm sorry for your loss of your daughter.
After surgery I was in ICU for 2 days. My left eye swelled shut after surgery and face was swollen. I was on morphine so I don't remember a lot. I don't remember being in pain. When I came home I took Tylenol for any pain I had. I was very weak so I stayed with my mom for a few days. I had no energy and slept a lot. After about 7 weeks after surgery I started feeling like me again. My energy level is still not great but I also have a bad back, so that doesn't help. My vision is getting worse in my left eye but my neurosurgeon said that would happen. I will have MRIs every 6 months for the rest of my life to monitor the remaining tumor and if it grows I will have radiation therapy. If you have any specific questions please ask and I will try to answer them. I'll post a picture of me almost 2 days after surgery so you can see. It looks worse than it felt

Jump to this post

I wish we lived closer too I would love to have a group where we could meet and talk about the recovery and what to expect in the future. This is definitely a life changing experience

REPLY
@mrector

@kmart I am praying for you. I'm sorry for your loss of your daughter.
After surgery I was in ICU for 2 days. My left eye swelled shut after surgery and face was swollen. I was on morphine so I don't remember a lot. I don't remember being in pain. When I came home I took Tylenol for any pain I had. I was very weak so I stayed with my mom for a few days. I had no energy and slept a lot. After about 7 weeks after surgery I started feeling like me again. My energy level is still not great but I also have a bad back, so that doesn't help. My vision is getting worse in my left eye but my neurosurgeon said that would happen. I will have MRIs every 6 months for the rest of my life to monitor the remaining tumor and if it grows I will have radiation therapy. If you have any specific questions please ask and I will try to answer them. I'll post a picture of me almost 2 days after surgery so you can see. It looks worse than it felt

Jump to this post

Wow, you sure have been through a lot. Stay strong and proactive as you sound like someone that can conquer whatever challenge you are presented with. I do have questions that if you can answer I will greatly appreciate. 1. When do they shave the head? A day after surgery did they allow you to wear your own clothes? How quickly did they get you up after surgery? How did you handle the steroids? How long were you on steroids? Is it strictly pain in the incision area? How long did it take for the pain to subside? You mentioned that you were on morphine and don't remember a lot. I was given morphine when I had a total knee replacement and it made me very sick. Were you nauseated? If so, for how long? Thanks so much. Where did you have your surgery?

Liked by mrector

REPLY
@kmart

Wow, you sure have been through a lot. Stay strong and proactive as you sound like someone that can conquer whatever challenge you are presented with. I do have questions that if you can answer I will greatly appreciate. 1. When do they shave the head? A day after surgery did they allow you to wear your own clothes? How quickly did they get you up after surgery? How did you handle the steroids? How long were you on steroids? Is it strictly pain in the incision area? How long did it take for the pain to subside? You mentioned that you were on morphine and don't remember a lot. I was given morphine when I had a total knee replacement and it made me very sick. Were you nauseated? If so, for how long? Thanks so much. Where did you have your surgery?

Jump to this post

@kmart I shaved my head the Saturday before my surgery on Tuesday. If you don't want your whole head shaved the dr will shave the area he needs after you are put to sleep. I was allowed to use pajamas the third day after surgery after I was moved into a regular room. I was allowed to walk and sit in a chair the third day after surgery. I handled the steroids well. I took them in the hospital and took them for a week after I got home from the hospital. My pain was more like a headache. The insision and surrounding areas are numb from where they cut, so that doesn't really hurt. I was given morphine while I was in ICU and don't remember a lot about that time. I didn't know I was on morphine until my mom told me. When I was moved to a regular room I took Loratab by mouth when needed. I took Tylenol when I got home from the hospital when needed. At my preop appointment I told them that I usually get sick from anesthesia so they gave me medicine through my iv to help with that and I didn't get sick at all. I also told them at preop all the medications that I have had a bad reaction to after surgery so they avoided giving me those. Tell them at your preop appointment anything you have had a reaction to after surgery and they should be able to avoid those. I had to go to Columbia, SC for surgery, which is about two hours from my house. I will have to go to Columbia for all my future checkup appointments. I hope this helps some. Keep me posted and I am praying for you!

REPLY

@mrector you have been so very helpful and I am very grateful for your responses. You have provided me with very important information.

REPLY
@kmart

@mrector you have been so very helpful and I am very grateful for your responses. You have provided me with very important information.

Jump to this post

@kmart if you have any more questions I will do my best to answer them…

REPLY

I have a question…I am 3 1/2 months postop and have been having headaches just about every day for a couple of weeks. Headache is mainly on my left side where I had surgery. Should I be concerned about this or am I overreacting??

REPLY
@kiturah

When I first heard I had a brain tumor, I thought I was the only one. I've learned, meningioma's are very common. Some grow, some don't. Mine unfortunately was pushing against my brainstem and had to be removed. Not all was removed so I continue to have MRI's. I can say I'm no longer claustrophobic!

Jump to this post

I'm 37 years old and found out I have a left frontal meningioma that is 6mm in size. I understand this is a smaller meningioma but I'm freaking out. I know that as little as 2 years ago this was not in my brain because I had test ran due to a mass on my Prada glands, which included scans on my brain. I have had 1 seizure and have been dealing with forgetfulness, depression, headaches and irritability. Does anyone know if these are symptoms of the meningioma and if they are if I should seek a second opinion? My last MRI scan was in November and my neuro doctor doesn't want to repeat scan until May, and I reported all these new symptoms to him. Thank you for any help, I'm feeling Scared and feeling alone, so thank you for any reply

REPLY
@bosslady18769

I'm 37 years old and found out I have a left frontal meningioma that is 6mm in size. I understand this is a smaller meningioma but I'm freaking out. I know that as little as 2 years ago this was not in my brain because I had test ran due to a mass on my Prada glands, which included scans on my brain. I have had 1 seizure and have been dealing with forgetfulness, depression, headaches and irritability. Does anyone know if these are symptoms of the meningioma and if they are if I should seek a second opinion? My last MRI scan was in November and my neuro doctor doesn't want to repeat scan until May, and I reported all these new symptoms to him. Thank you for any help, I'm feeling Scared and feeling alone, so thank you for any reply

Jump to this post

Did the Dr seem concerned that you had a seizure? Have you had seizures before? I think I would get a second opinion just to be sure it's okay. I started losing vision in my left eye and my eye Dr thought it was glaucoma. I finally got a Dr to listen to me and do an MRI and found my meningeoma. Hope you find some answers soon.

REPLY
@mrector

Did the Dr seem concerned that you had a seizure? Have you had seizures before? I think I would get a second opinion just to be sure it's okay. I started losing vision in my left eye and my eye Dr thought it was glaucoma. I finally got a Dr to listen to me and do an MRI and found my meningeoma. Hope you find some answers soon.

Jump to this post

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

REPLY
@bosslady18769

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

Jump to this post

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.

REPLY
@bosslady18769

I'm 37 years old and found out I have a left frontal meningioma that is 6mm in size. I understand this is a smaller meningioma but I'm freaking out. I know that as little as 2 years ago this was not in my brain because I had test ran due to a mass on my Prada glands, which included scans on my brain. I have had 1 seizure and have been dealing with forgetfulness, depression, headaches and irritability. Does anyone know if these are symptoms of the meningioma and if they are if I should seek a second opinion? My last MRI scan was in November and my neuro doctor doesn't want to repeat scan until May, and I reported all these new symptoms to him. Thank you for any help, I'm feeling Scared and feeling alone, so thank you for any reply

Jump to this post

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.

REPLY
@gloriajean

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.

Jump to this post

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?

REPLY
@gloriajean

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?

Jump to this post

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.

REPLY
Please login or register to post a reply.