Meningioma x2

[ttlg]

3.5 years ago I had most of a nonmaligment meningioma removed. from the spehoid (sp) wing area.  I've continued to have many of the original symptoms that were affecting hearing, balance, ear pain, fluid in ear, and 2 months ago my new ENT dr. said the eardrum was displaced  Two weeks ago I had surgery to see what was going on in the ear., it turned out to be a meningioma in ear and eustachian tube - all wasn't removed.  I'm told this is rare, meningiomas don't grow in the ear, the neurosurgeon says it cannot possibly be related to the first meningioma.  I've had about 8 MRIs that said something like air cells in the mastoid area don't look right otherwise all's well. Should I worry about this and who should be treating me..My PCP says she's not qualified to manage the care, the neurosurgeon (also new) says, I don't need an MRI or to see him for 3 years, and the ENT dr says the neurosurgeon needs to be involved. I'm in an HMO so it isn't easy to change drs.  Can you tell me your view on who should be managing this for me?  With the latest discovery I am very worried about more showing up and that they won't be caught in time.  I'm 62 and female.  The ENT and Neurosurgeon are new to me because the original drs. have left the HMO.

ttlg

[Neuro Forum]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to obtain a history from you and examine you, it is difficult for me to provide you direct advice regarding your meningiomas. However,  will try to provide you with what information I can.

I think you would benefit from evaluation by a neuro-oncologist if there is one in your area and in your network. Sometimes, it is best to look for a neuro-oncologist in academic centers (such as university hospitals) in your area, as there are not many such specialists otherwise, though a few are in private practice. He/she will be able to examine you and give you the appropriate advice regarding if you need to be reimaged and how often. He/she would be able to work with your local PCP and ofter him or her advice. If you do not have a neuro-oncologist close by, a neurologist would also be a good alternative. When people have multiple meningiomas, this is sometimes referred to meningiomatosis. This can occur in isolation (meaning not associated with other illnesses), or can occur as part of genetic syndromes such as Neurofibromatosis type II. The occurrence of multiple mengiomas in and of itself is not dangerous. As you might know, most are not malignant, they mainly cause problems by pressing on surrounding structures.

Thank you for using the forum, I hope you find this information useful, good luck,

[Texas Grannie]

I am 75years of age, and still get around fairly well. I live with cancer rather than die with cancer. My cancer is low grade ovarian controlled by Tamoxifen. I did take chemo 3 times. After the first time, I developed really severe restless legs, after the second chemo, I developed nueropathy, after the third chemo, a nuerologist diagnosed Parkinson. It seems to me that chemo about wrecked my nervous system. I have to take so much medicine so I can sleep, that my mind is often cloudy. I also have depression. At first, it wasn't so bad, but lately it is getting almost too much for me. No, I would never think of suicide. I love my family too much. If I leave the house, which I do about twice or three times a week. I am very tired the next day. We play cards with friends and go to church. We visit our children and grands about every two months. The three hour travel Is worth it, but each time we go, I come home more weary. I have only been diagnosed about three years, but I feel I had Parkinson much longer. My nuerologist doesn't comment. My balance is getting much worse. I hold on to my husbands arm when we go out. If I stumble in the house, I catch myself on the walls. A strange thing, a year ago, my medicine ran out, and before I made it to the doctor, I didn't sleep. When I did go, he upped my medicine and I slept almost 24 hours a day, but not in bed. I walked in my sleep all night. During the day, I would be walking through a room and go to sleep standing. He gave me clonazapam, and added Mirapex. I also take Cymbalta for nueropathy pain, and it works. Then I take Car/ lev. I know I  take too much medicine but it is better than not sleeping and walking in my sleep. After I began sleeping at night, I would find myself lying on the floor asleep. Now, I wake up  on my knees leaning on the bed. I am wondering how much longer do I have? I know you can't and rightfully won't tell me, but I need to get my things in order before I can no longer walk. Can you judge how long between poor balance and wheel chair? And how much time between wheel chair and lying in bed. I am weary and ready to meet my Maker. Thank you, Gwen Gray

[ttlg]

Thank you.  In Oct I've made my next round of appointments with my ENT, Neurosurgeon and a Neurologist..I'm going to give them all another chance now that they know about the new Meningioma that has spread through the bone to the ear (or something like that according to them) and ask about future management.  If no answers I'll go to the membership services department and ask for help and try for an outside referral if between them they don't feel they can mange my case.

ttlg.

[Texas Grannie]

Sorry to be so late with my return. Our children and their children were here to get out of Houston. They could take the wind and rain, but the lack of electricity was too much. I am not understanding your comments and I believe I did not give you enough information. My cancer doesn't travel. It stays in my abdomen and grows about every two years. Or I should say it builds up liquid. I went to see my nuerologist this week. He does not like to talk about anything really, so he leaves the computer with this diagnosis about me turned toward me where I can read it.This is my nuerologist. His comment that confused me this time was that I had extrapyramidal syndrom. I have been reading all day about it on the computer and still don't know which meds cause the EPS. I am going to Houston as soon as  the doctors get their electricity installed for a second opinion. I am going to Baylor Med School. I have had a brain scan. It only showed that I was getting old. Thank you for your comments. Gwen Gray