I have had increasingly painful headaches for about 8 months. I am 42 years old. About 2-3 months ago the headache became constant. It is on the left side of my head along my temporal artery. Sometimes the pain radiates to my left eye and cheek. I was referred to a neurologist after a CT came back normal. The neurologist diagnosed trigeminal neuralgia and put me on Neurontin and sent me for an MRI. His office called me this Wednesday and said that a small brain nodule was found on the MRI and they want me to have another MRI in 6 months. Is this normal to wait this long for a repeat MRI? I asked her what exactly she was saying and she said there is a small mass/tumor on the right side of my brain. I told her the pain is on the left. She then told me the right controls the left side. So, of course, I've been freaking out since then - everything I google comes up brain tumor. My mom passed away last August of head and neck cancer, although she was a smoker and I am not. She was 62 when she passed. When she was exactly my age she had a brain aneurysm, but it sounds like mine is more of a mass. Does anyone have any expereinces they can share and any advice? Should I ask to be sent to a neurosurgeon? I am going to request the MRI report on Monday so I don't have specifics on where exactly it is located or the size. I don't want to be told "it's too late" or we should have done an MRI sooner. After watching my mom go through her fight with cancer for 3 years, I am of course very worried. I would appreciate any and all comments or advice. This forum looks like a great place to find answers and friends!
Hi Julie, I am so sorry about your health concerns. Your symptoms are not common brain cancer symptoms but that does not mean that this small "thing" is not indeed brain cancer. Brain cancer symptoms vary so much depending on the specific location. I am not sure why your neurologist want to wait that long before doing a follow-up MRI... to say nothing of a biopsy. It seems to me she/he would want to know what that is! The only way to know exactly what you are dealing with, how to treat it, and what the prognosis is would be to have a biopsy. I would indeed at least ask about their plains.
Don't try to compare your situation with your mother's. I am so sorry that she suffered. However, a head and neck cancer is a vastly different animal than a brain cancer. They are treated differently, do not have the same prognosis, do not have the same causes (most likely), do not have the same symptoms, and the death experience is not the same. Comparing what she HAD and what you MIGHT HAVE would be like comparing apples to oranges and not helpful at all.
If it is a small, low grade brain cancer, waiting 6 months for an MRI is no problem. If it is a small, high grade brain cancer, waiting that long could be fatal although other symptoms would quickly develop to warn you. But, as I said, you need to talk to your neurologist about a biopsy.
Thank you so much for replying to my post. I truly appreciate it and I am looking for any answers out there I can find. If it's not a brain cancer tumors, what other tumors are there? Is it really safe to have any tumors on your brain? I think I am going to ask for a repeat MRI in at least 3 months and I will ask them why not biopsy it? Is this where they have to drill a hole in my skull? This is so scary and something you never really expect to hear as I'm sure you know. Should I be concerned I have cancer somewhere else in my body? Would a tumor on the right side of my brain cause pain on my left?? So odd how the brain works. Do they remove non cancerous brain tumors? What signs should I watch for that would mean something more serious is happening? I do have short term memory problems and I do have trouble concentrating which are both new problems for me. I am glad you explained to me how different my situation is than my mom's.
My 9 year old daughter also has an extensive AVM in her chest, arm and neck. They found that on CT when she was 8 months old. She's been through several surgeries and embolizations so this has crossed my mind too, but not sure how an AVM and tumor would appear on MRI - whether they have similar characteristic or would be distinguishable.
It is truly wonderful the way you help others from your own expereinces. You are able to give people hope and find comfort. I'm so glad I found this site. Thank you again for replying to my post.l
Q1. If it's not a brain cancer tumors, what other tumors are there?
A1. There are cancers that are called "Primary Brain Cancers". There are a number of these cancers. There are also cancers that are called "Head and Neck Cancers". Again, there are a large number of these. The detail that separates these is that Primary Brain Cancers are cancers of the Central Nervous System whereas Head and Neck Cancers are not.
Q2. Is it really safe to have any tumors on your brain?
A2. While there is a significant additional risk associated with malignant tumors (Cancers), benign tumors (Non-cancerous tumors) can also cause significant problems. Anything that changes the shape of the brain or increases internal pressure on the brain is dangerous and needs to be taken care of.
Q3. I think I am going to ask for a repeat MRI in at least 3 months and I will ask them why not biopsy it? Is this where they have to drill a hole in my skull? This is so scary and something you never really expect to hear as I'm sure you know.
A3. Yes, a brain biopsy involves drilling a hole in the skull. It does sound scary and, like all surgeries, it is not without dangers. Nevertheless, the recovery is a whole lot easier than you would imagine. I was in that hospital for less than a week including time before and after the biopsy. Of course, the danger depends on several factors especially the location. Nevertheless, I know people who had deep needle biopsies who also had a great recovery. I actually do not know anyone who had complications just from the biopsy.
Q4. Should I be concerned I have cancer somewhere else in my body?
A4. Again, this depends on the specific type of cancer. The major Primary Brain Cancer subgroup called Gliomas, rarely if ever spread. If it is a Head and Neck Cancer then, yes, it could.
Q5. Would a tumor on the right side of my brain cause pain on my left?? So odd how the brain works.
If the tumor is on one side, it normally causes symptoms of the other. Yes, the brain is a very odd and wonderful organ!
Q6. Do they remove non cancerous brain tumors?
A6. It depends. If it is causing problems then yes. Sometimes, if the tumor is small, they can remove it when they do the biopsy. If it is not causing problems, they often recommend just waiting and watching.
Q7. What signs should I watch for that would mean something more serious is happening?
A7. You will probably notice some form of motor control problems (weakness on one or both sides¦), speech problems, vision problems¦. Sometimes, it is not actually the patient who notices these changes but someone else. My mother really did not notice her own vision problems believe it or not. She kept walking into door faces with her left shoulder but did not think anything about it. Dad is the one who noticed and did a simple vision check at noticed the she was not seeing anything to her left.
I received my MRI report today. This is what is says: along the anterosuperior aspect of the right porous acousticus, abutting the inferior portion of the cisternal segment of the right fifth cranial nerve near the root entry zone, there is a contrast enhancing nodule with associated dural tail measuring 4 x 2.2 mm. This has imaging characteristics of a small meningioma....could be source for right sided trigeminal neuralgia. Findings should be correlated clinically......
I'm going to schedule an appt. with my dr to go over the results. Do you have any comments, or have you seen this before and with what outcome, etc.? Thanks so much.
I am not sure about that location. A Meningioma is a form for Primary Brain Tumors that involved the Meninges (the membrane that lines the brain and spinal cord). 4mm is very small so they might be able to remove it during the biopsy. Cancerous Meningiomas are more common in women and are much rarer than other brain cancers.
Thank you so much for your reply. I've been doing lots of research on the internet. Do you think the reason I am heaving headaches, numbness, etc. is because it is growing? Yesterday the whole left side of my face felt like I had novacane from the dentist and it was wearing off. It felt very numb. I realize you are not a doctor, but I'm just wondering from your expereince with others and yourself what you think. Everytime I'm somewhere alone I worry I'm going to have a seizure, even though my doctor hasn't warned me about this. Do you think I should call the doctor when my face gets numb? I hate to bother him. I know he's a very busy specialist.
It might indeed be growing but that would not be the main cause of our symptoms. Meningiomas can cause headaches. The numbness could also be caused by the tumor. It can act like a stroke. Yes, you should tell your doctor about this. I am not sure if he will consider it to be a seizure but he might have some way do deal with it. Hey, don't you worry about "bothering" him. That's why he gets payed the big bucks . Really, don't worry about bothering him. You will most likely talk to his nurse first anyhow. She can assess whether or not you need to talk with the doctor. Let them help.
Thank you so much for your reply. I did call and his nurse told me to call back if the numbing happens again. She also said if I felt more comfortable they would send me to a neurosurgeon and they offered to do another MRI in 3 months instead of 6. I told her I was completely comfortable with waiting for the next MRI before going to a surgeon and she told me to call anytime I don't feel like myself or have any other questions. She assured me I was not bothering her at all. I so appreciate your help and I think it's wonderful how you've used your experience to help others. I saw Don Piper (author of 90 Minutes in Heaven) and he talked about making messages out of our messes. I'm sure you have helped countless people along their journeys with not only cancer, but other tumors. Thank you for doing that.
Since my last post, I've had increasingly painful symtpoms and more symptoms. I've fallen twice, I now have pain that not only is on my left side but radiates into my ear, eye and down my neck. When I bend down or cough the rigth side of my head hurts where the meningioma is. I called the dr and they scheduled me for an MRI on Thursday. I am concerned about this. The pain hasn't gotten any better. I am now on Tegretol XR (3 pills a day) and Keppra once a day. My head sometimes feels like it's on fire. does anyone have any ideas? I am concerned that this is no longer a meningioma but something more serious. Does anyone have any thoughts? Thanks very much for your thoughts.
Hi Julie. I am so sorry about this new development. I certainly understand your anxiety about this change in your overall health. I could be wrong but I would not think something else has developed. I think it is still the Meningioma. Just make sure your doctor understand all your new symptoms.
I just saw your post and I also have a 5 mm meningioma
I wondered how you were doing with that? I have had a hard time lately finding good doctors in my area. they are hard to come by. My neuro is a good one though and I am going to have her do a spinal tap to R/O cancer and other things since I have some other things going on as well.
I was told mine was too samllt oc ause symptoms but I disagree. I don't know if I am an anomoly but from your post you seem to have symptoms as well. Please let me know how you are doing with all this now and any new developments please. thanks!