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Home » Non-Malignant Brain Tumours » Anyone with meningioma??

Discussion related to Non-Malignant Brain Tumours
17/08/2016 9:22:12 PM

kagaso
kagaso
Posts: 1
Doesn't look like this board is used....but was wondering if anyone has/had a meningioma?
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31/08/2016 7:40:27 PM

Shell
Shell
Posts: 1
I had two removed in January.
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09/10/2016 1:47:32 PM

Jennifer951
Jennifer951
Posts: 1
Hi there. Hope you see this. I have a meningioma. Had surgery 5 years ago to try and remove some.
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03/11/2016 7:19:50 PM

SRaj
SRaj
Posts: 1
hello I am new to this...how big is your meningioma ?
Mine is 12mm, waiting to get mri and see neurologist.
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15/11/2016 1:40:36 PM

Kristyna
Kristyna
Posts: 7
Hello, I just signed up for this board today. I had a CT scan a few weeks ago and was told Thursday that I had a Meningioma 2.3 cm at it's largest measurement and I am still a little in shock. I have been suffering with extreme mental anxiety, fear and depression for years, but that only came on very suddenly and I've been battling this whole time without success. So I am a very odd mixture of extremely sad (of course, diagnosis w/ a brain tumor), but also a bit of happiness, as maybe, finally, if it is removed, I can start healing physically, as well as mentally? Has anyone gone through this and felt these ways? I am very curious. I am waiting for an MRI and then I will hopefully get to see Dr. Redekop, Neurosurgeon. I so, SO want to go back to being my happy-go lucky self I was 2+ years ago.
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29/11/2016 6:04:36 AM

Jay
Jay
Posts: 3
Hi everyone. I am curious if anyone else has problems with sound. I have been experiencing sound changes in my left ear. Most of the time its like hearing conversations or music but it's far off in the distance. Of course no one around me is hearing it. And I'm not sure how to tell my doctor about it,as I don't want him to think I'm going crazy.
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07/12/2016 6:09:08 PM

Sailboat
Sailboat
Posts: 3
Hello Kristyna: I do believe that we undergo emotional changes caused by the presence of the tumour and that these changes may arise years before we are diagnosed. I am three weeks past meningioma surgery and now feel more 'myself' than I have over the past two years. During that time I lost interest in most parts of my life, had no emotions - good or bad, didn't want to organize, and let my husband become the cook (!). Since the surgery I seem to have regained all these aspects and it is very pleasing. My husband is still cooking but I guess I'll now join in the process!
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10/12/2016 10:04:23 PM

Kristyna
Kristyna
Posts: 7
My God, Sailboat.. Your post has put me in shock. This is exactly how I have been feeling for years! I've lost all interest in the things that I love, I love working hard, keeping a home like Martha Stewart, cooking amazing meals for my husband, friends and family, keeping extremely fit and enjoying numerous hobbies. Now I feel like I've gone so far downhill that, at very rare times, I felt a bit suicidal. I'm so embarrassed to admit this, but this is how far I've fallen in life. All I've done lately is sleep and feel terrible. I feel horrible for putting my husband through this, and a number of friends have left me for not being able to keep up with my life and theirs. Tonight I'm missing my husband work party and instead of being the life of the party as I would have been years ago, I'm lying on my couch terrified of what the future holds and whether I can keep up my finances, whether I can keep my friends and husband.. I pray that the neurosurgeon will see my supreme degrade in life and do whatever it take to get me back to my old life. I want to be 80 years old and energetic enough to be volunteering and helping others, like many people I know. Is there a support group that might be able to help me during my lowest points?
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14/12/2016 5:48:33 PM

CJ
CJ
Posts: 1
Hi I am new to this forum. I was just diagnosed 3 weeks ago with a benign meningioma in the left frontal lobe. The tumor is 2.5cm x 2.3cm. I am suffering from any symptoms yet. It was an accidental finding when the Eye, Ear, Nose Specialist was trying to find out about my sinus problem and pressure on my left ear and he had me have an CT scan and he asked to have more than my sinuses scanned and accidentally the tumor was found. I had an MRI 2 weeks ago and I just saw a neurosurgeon yesterday who said she feels its a 50/50 case of operating. What she means is that I am in my early 60s, am in very good health, very active, take no medications....... she suggest to get an MRI in 6 months and then compare the one I had gotten 2 weeks ago with the one in 6 months to compare the two in terms of size, growth, movement. She feels the tumor has been there for a long time but is not sure how long. I asked to have an appointment with the Radiologist to examine my options instead of surgery: radiation, stereotactic radiation, and cyber knife...... if they feel that either of the options would be right for me or should I have surgery. I was shocked yesterday when she said I feel like it should come out due the above that I mentioned. She seems to be a very competent doctor and I don't feel because she is a surgeon that she wants to operate, because that is what she does...... I feel she is genuinely concerned and believes that I may in the future start have symptoms and or seizures??? all a possibility or not??? So my question to anyone who is reading this, do you think I should have surgery, or do the Wait and Watch treatment having MRIs every 6 months and gamble. It is a lot to think about and I am excited about having the operation. She said is a person has to have a operation to remove the meningioma, this is the best location as opposed to many other places it can be. So any suggestions, ideas, comments, appreciate your input. Thank you
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25/01/2017 2:06:12 PM

Kristyna
Kristyna
Posts: 7
Hello, I am so incredibly depressed. I meet with the neurologist and was told that all the symptoms I was suffering had nothing to do with the tumours in my head and they won't be removed. Not even the largest one. So I don't know what to do now. I've had my life ripped away from me, then given a glimmer of hope that it might be given back, and now I feel like a donkey with a carrot tied to a stick tied to my back. Like I was chasing the treat of having a normal life back again to no resolve. Maybe only to give some people a good laugh at my expense. What do I do now. These tumor won't be removed, not even one and apparently even if they were removed nothing in my life regarding my horrible symptoms would change.. it's so sad and depressing. I've seen my GP and all he had to say, was that's too bad. I haven't eaten in days and I've only gotten out of bed to grab my computer out of extreme boredom. I really don't know what to do next.
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26/04/2017 10:12:15 AM

Oogie
Oogie
Posts: 1
Hi All,

My name is "Oogie", and I live in Halifax, NS. I've been following the BrainTumour.ca site now for a number of years since the discovery of an initial meningioma in the spring of 2000. I've had a total of two craniotomies since - first for the removal of the first growth, and a second procedure in 2011 for subsequent growths in other areas. I found out last year from my yearly MRI scan and visit with my neurosurgeon that he would like to perform a 3rd craniotomy at some point to go after a new set, but is content to hold off and continue to monitor growth for now.

The cause for the growths? In my case, it is generally felt that radiation (and chemo?) therapy I received for childhood leukemia (40+ years in remission! ) is a large contributing factor. It is rather surprising and sad as to how much the treatment for the cancer still lingers today, so many years since its last treatment. Large reason why I advocate against childhood cancers for kids today, but I digress!

Looking forward to the discussions and contributing anyway I can.

Cheers!

O.
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21/05/2017 10:52:50 AM

sunday sue
sunday sue
Posts: 1
[font=Arial, Tahoma]I just had a craniotomy to remove a 2.4cm meningioma from my left frontal lobe. My path to finding the tumour was from investigating headaches that I had for years. Nothing too intense but a 3/10 most days. I could relieve the headaches with ibuprofen so I didn't worry too much about it. Until this winter when the headaches got worse. Long story short they found the tumour by accident when I had a very bad ear infection. My neurosurgeon thought that it was a very good idea to operate on it and get it out. I am 4 days post operation and I feel great. I mean really good. I am walking around, no speech issues, no issues at all! Nothing. I am only taking tylenol 650 4 times a day! I have a huge incision from ear to ear but other than that I feel the best I have in years! I hope this helps all of you in finding some solutions to your issues. The worst part was the 2 month wait between finding out and the operation. I am 38 years old female in Vancouver, B.C.[/font]
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25/07/2017 8:50:13 AM

A Winner
A Winner
Posts: 1
Seeking support and encouragement. I am a 72 year old woman, is reasonably good health, who was diagnosed with a meningioma 5 years ago. Due to location, left frontal lobe, neurosurgeon advises surgery puts me at high risk of mild to severe damage to right side mobility. As symptoms are tolerable and quality of life good, I have been in "wait and see" mode all this time with MRI's reduced to every 12 months for past 3 years. Just had 12 month follow up. There has been steady minimal growth and this time the doctor has suggested I consider surgery as he predicts growth will continue, the larger it get the more difficult to remove and I'll be at higher risk of mobility damage. Figures he can get 70% of it out now and that figure also likely to decrease as it grows. It is a difficult call as I can tolerate periodic head pain now and am physically active. On the other hand I've had a few episodes of "numbing" that starts in my right arm then travels up and down my right side (similar to a Novocaine block) and lasts for 10-20 minutes. We don't know if these might be seizures. Should I say Yes to proceeding with surgery??? Welcome any comments. I am afraid of the surgery. Thanks. ALB
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28/08/2017 12:45:01 AM

Jethro848
Jethro848
Posts: 3
A Winner wrote:
Seeking support and encouragement. I am a 72 year old woman, is reasonably good health, who was diagnosed with a meningioma 5 years ago. Due to location, left frontal lobe, neurosurgeon advises surgery puts me at high risk of mild to severe damage to right side mobility. As symptoms are tolerable and quality of life good, I have been in "wait and see" mode all this time with MRI's reduced to every 12 months for past 3 years. Just had 12 month follow up. There has been steady minimal growth and this time the doctor has suggested I consider surgery as he predicts growth will continue, the larger it get the more difficult to remove and I'll be at higher risk of mobility damage. Figures he can get 70% of it out now and that figure also likely to decrease as it grows. It is a difficult call as I can tolerate periodic head pain now and am physically active. On the other hand I've had a few episodes of "numbing" that starts in my right arm then travels up and down my right side (similar to a Novocaine block) and lasts for 10-20 minutes. We don't know if these might be seizures. Should I say Yes to proceeding with surgery??? Welcome any comments. I am afraid of the surgery. Thanks. ALB


If it is small enough, you can possibly get it killed with Gamma Knife Radiation. I know this is done in Winnipeg, not sure where else. Perhaps ask your neuro again. Still some side effects possible but certainly far less invasive than surgery. Good luck!
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12/09/2017 11:47:26 AM

Kris10
Kris10
Posts: 1
I found out about my meningioma after complaining for years about my bulging eye!! Finally right on the day before my 40th birthday I was informed my meningioma was within the anterior temporal fossa that extended along my right sphenoid wing. It also is encasing the lateral rectus muscle as it extends into the right cavernous sinus and into the right orbital apex.
I had my craniotomy in May of 2015. My amazing surgeon could only resect part of my meningioma as it is wrapped around my optic nerve and other arteries and nerves in my cavernous sinus. He hoped I would be able to go for years as normally meningioma's are slow growing.... but not mine! I had to then go for radiation therapy in September 2016, 5.5 weeks, 28 sessions. That was very very hard for me personally to go through. I found the craniotomy easier to heal from. I am still feeling poorly. I have just found out that my pituitary gland was damaged from the radiation so now my thyroid has not been told to work from my pituitary glad. Now I have hypothyroidism. All of this at just 42 years of age. I am hoping to get back to my everyday life... I teach Pilates normally, I have two daughters, 19 & 15 and my husband. It has been very hard for them!! I haven't had much support elsewhere so it's great to finally find this board! All I can say is listen to your body and push your Dr's when you know something is off!! It has payed off for me every darn time. Where is your meningioma located? Have you had surgery yet? Giving you all my support and well wishes stay strong.
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20/10/2017 7:52:37 PM

Asta
Asta
Posts: 1
Yes, I also found out about my Meningioma by accident. After experiencing sudden unexpected headaches (due to other reasons, it turned out), I had a CT-scan done in early 2014. Now, 3-1/2 years later, I have had annual MRIs, just to make sure there is no change in size. My growth is in a "safe" part of the brain: the right temporal lobe. It is between 2.5 and 3 cm in size. My only concern is that--as I am already in my early 60s--what happens if the meningioma grows as I age and I need treatment when I am more vulnerable? I just joined up on this group and I am happy to have (and give) peer support.
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