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Old 05-09-2011, 08:38 AM   #1
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missjaimes HB User
tumor question (meningioma)

My mother has had 7 meningiomas removed since I was a child up until a few years ago. The doctor has always told her it was not hereditary but I have also done some research recently because of how I have been feeling and have read that yes, they can be genetic if you carry a specific gene. I am concerned because for the past 9 months, i have had extreme lightheadedness which most recently has become unbearable to the point it is hard to stand up and walk and take care of myself. Has anyone experienced this or want to talk to me about what you think. I would love any feedback, both good and bad. I had an MRI done about 9 months ago and supposedly everything was fine. I am not convinced that everything is still fine. How long would it take for something to grow and show up on a scan?

Thank you

 
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Old 07-22-2011, 10:54 AM   #2
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Re: tumor question (meningioma)

Meningiomas can be missed on an MRI if they are too small or in locations that hard to see on the scan. I should know, I have multiple meningiomas that I have had since I was about 12, I am now 49.

Last edited by palmyrafan; 07-22-2011 at 04:25 PM.

 
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Old 07-23-2011, 05:37 PM   #3
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Re: tumor question (meningioma)

Hi Neighbor: If you have good insurance, I think I would check out a few more doctors until you find one who is interested in your problem and willing to do the tests necessary to find the cause. CT and MRI scans can usually find the smallest things that could cause problems (BUT I AM NOT A DOCTOR). I am just a recently diagnosed brain tumor patient who did not have the "normal" brain tumor symptoms. I will be starting radiation and chemo. next week.
I honestly believe that a good attitude and proper nutrition can make a difference between life and death.
I have a wonderful attitude - and I will let you know if I can begin and keep a good nutrition program.

 
Old 07-23-2011, 07:33 PM   #4
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Re: tumor question (meningioma)

Positivity and good nutrition are very important during any kind of cancer treatment.

As for an MRI and/or CT Scan picking up the smallest detail in the brain? Not true. Again, I should know. My doctor at the Cleveland Clinic, Dr. Joung Lee, pioneered skull base surgery which I was a recipient of. Based on the MRI's (many) and CT Scans (many) prior to surgery, he didn't see 1/4 of the tumors that were actually inside my skull. He told my husband that he estimated my surgery to be approximately 8 hours based on what the scans were showing. No one was more surprised than he was when he actually opened up my skull. His words (he told my husband) to the team were "oh my God". He said it looked like I had many octopi in my skull with tentacles (arms) branching out throughout my skull. He could not believe what he saw. Many of the tentacles were so small, they couldn't possibly show up on the scan. My 8 hour surgery turned into an 18 hour surgery.

As for radiation? Had traditional radiation therapy in 1996 (2 years post brain surgery), sinus surgery in 1993 (how they found the tumors) and again in 1997. Chemo will not work on Meningiomas because the tumors are typically too slow growing.

As for your situation? If you feel that there is something going on, then get a 2nd, 3rd or even 4th opinion. But please understand that having headaches does not necessarily mean you have a brain tumor. There are many types of headaches; migraine, allergy, tension, etc that have nothing to do with brain tumors. Again, if you are concerned about it, then get another opinion.

BTW, there is not yet enough scientific evidence to suggest a genetic link that would pre-dispose you to getting a meningioma. Women tend to get them more than men (they actually think our hormones have something to do with it). As for my tumors? The doctors were able to pinpoint what they believe was the cause. At the age of 12, I was in a horrific car accident, caught between a small VW Beetle and a semi. The semi hit us so hard it sheared off all 18 of the 1 1/2 inch bolts on the front grill. I sustained a severe concussion and was incapacited for 6 months with severe headaches.

Good luck.

Teresa

 
Old 07-25-2011, 01:36 PM   #5
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missjaimes HB User
Re: tumor question (meningioma)

palmyrafan... wow, i'm so sorry for what you have and are going through. What were your symtoms that you had for the tumors? I hope that you are recovering and doing well these days. I had another MRI done recently and all was normal except something that said mild "something" something artifact and i don't have the results in front of me but i can get back to you. No one ever told me what that meant and I assumed if it were real bad, or even a little really, they should have said so. I would love a third and fourth opinion but I am so mentally drained right now. I can't find the energy to want to think about it and find ANOTHER doctor, etc.

ajw7813.... I'm sorry to hear of your diagnosis as well. I agree that good nutrition and attitude plays a major role in health and wellness. I hope your treatments go well and if you don't mind me asking... you mentioned you didn't have the "normal" symptoms, what were your symptoms that you did have? Did you know something was wrong or was yours found on a routine scan or something?

 
Old 07-25-2011, 03:37 PM   #6
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Re: tumor question (meningioma)

Thank you sweetheart.

In 2005, my brain tumors were upgraded to brain cancer because they have returned, some in locations they can't safely get to. I have tumors around my carotid artery, left optic nerve, skull base and blocking my left eustacian tube (left ear). This is where the tumors were before and where they have since returned to. I have not been able to have surgery on my left eustacian tube due to the tumors having fused into the facial and jaw bones in my face. In order to get the tumors out, they would have to break the bones in my face and would require massive reconstructive surgery for which the doctors decided it was not worth the risk to me.

I have also discovered that I now have tumors at my optic nerve chiasm (where the left and right optic nerve merge between the eyes). It is too dangerous for surgery there at this time because I stand a 70% chance of losing my vision if they try surgery. Radiation therapy is not viable at this time because I would need too high of a dose that would put me over the limit (I've already had 6 weeks of high dose traditional radiation) and again, probably would blind me.

The inoperable area is the carotid artery. It was resected in 1994 to the fullest extent possible, however, it is not safely possible to try it again.

All of that said, I have been told that the tumors have not moved nor grown in two years and the doctors find that reassuring.

I already know that the tumors will kill me. It's just a matter of when. I have been Blessed to watch my children grow up, graduate from high school, get married and Bless my husband and I with 6 grandchildren.

I never take any day for granted, instead, looking at each day as a Blessing.

I know you are tired of going to the doctors, but if it would put your mind at ease, please consider going.

Blessings,
Teresa

 
Old 08-08-2011, 05:33 AM   #7
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benjamin444 HB User
Re: tumor question (meningioma)

In the case of a brain tumor:

1. If you have the unequal pupils symptom, will the larger eye ever become the smaller eye; will the abnormal eye switch often or go normal?

2. In the case of daily headaches, will the headaches be relieved by showering or sleeping and then come back the next day, or will they continue and possibly wake you up at night?

3. If only unequal pupils and headaches are the symptoms you have indicating a brain tumor, how likely is it that this is in fact a brain tumor? Should other symptoms have shown by now if it is?

Thank you.

 
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