ANA Discussion Forum
General Category => AN Issues => Topic started by: satman on September 05, 2008, 08:26:20 am
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well i had my 2nd mri reading and now more worried than ever.
it has been brought to my attn that i now have ,excuse the spelling,meningioma.
seems to be a different type of benign growth,and i am told that millions of people have this thing and dont know it because they never get mri's
my doc has told me that if it grows toward my brainstem then i will have to have another surgery,dont think i can go through that again.
but on the upside ,if it grows and does not grow toward my brain stem then chances are i wont have to do anything about it,the doc says i could live to be 90 without doing anything about it,i will never live that long anyway,ha,ha. so now i get to watch and wait,however,the old tumor[8cm] has no signs of re-growth,yay!
i can honestly sat that i am freaking out on this thing but theres nothing i did to cause it and nothing i can do to change things.
my doc said to leave his office without worrying about it,i do trust him but knowing it's there is tough.[sucks being me].
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Hi satman... I'm sorry to hear things are in a tail spin regarding these diagnosis for you. I'm going to suggest something.
A user here, Sheryl, has endured meningiomas with her husband. He had one... had surgery on it.... had a regrowth and had cyberknife on it last October. Sheryl is a terrific reference to discuss the surgical and radio-treatments for meningiomas.
I also received this week my e-newsletter from the National Brain Tumor Society ... tomorrow happens to be "Meningioma Awareness Day in Boston". I copy below from my e-newsletter in hopes it gives you a good reference point for add'l info re: meningiomas. I noted this to Sheryl in casual conversation and I thought... if memory serves me right... that she and her husband may possible attend tomorrow. I hope this info helps. Please hang in there....
Phyl
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"Meningioma Awareness Day (MAD) in Boston - September 6, 2008
John B. Hynes Memorial Convention Center in Boston , Massachusetts will convene meningioma patients from across the country to hear the world’s leading meningioma experts address topics such as the latest surgical techniques, emerging and experimental therapies, and new treatment strategies for meningioma. For information on this program and other conference details or to register by phone, please contact: Tammy Gilson-Hodge at 617-525-8395 or tgilson-hodge@partners.org. For more information and to register visit: http://www.brainsciencefoundation.org/matriarch/"
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satman -
while I'm sorry to hear about the meningioma, I'm thrilled to hear that your AN has no regrowth! Since it was 8 cm I find that totally amazing!!!
You have been through a lot - to say the least - and you've always come through it. I have all the confidence in the world that you can get through this new development. Let's keep our fingers crossed that the meningioma doesn't grow towards your brain stem.
Jan
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Satman,
I'm so sorry you have another detour on this road of life. It amazes me how doctors can dish out such wonderful advice, how can you not worry about it. This is in your brain not his. Did you get the size of this invader? Remember you are a survivor. You had an 8cm acoustic neuroma, had surgery and thankfully you are here. I wish you lived around the corner from me so I could run over and put my arms around you. You need some pampering my friend, to get over the initial shock. I hope you have a good support system, lean on them because you are entitled.
Please take care of yourself,
Anne Marie
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thanks ladies,pampering is good.
this thing is only 7mm wide and 6mm across.
i had mentioned radiation to my dr. and he says that he would not do that for my case as that would do more harm than good to me.
i considered getting a 2nd opinion but what if the 2nd dr. suggest surgery right away or radiation which goes against everything my current dr. says, and after saving my life removing an 8 cm tumor with basically no complications i have to say i trust this man. in my eyes he is the best of the best and i could not trust another dr's. opinion.
does that make sense?
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satman -
your reasoning makes total sense to me.
My AN was nowhere near as large as yours, but if I ever have to have anything AN-related again, I'm going right back to my docs since I have a phenomenal level of trust and respect for both of them. So they better not retire anytime soon :D
I think you just have to take things as they come and let your doctor lead you in this. I have no doubt he won't "lead you astray" - and it sounds like you have no doubt too.
Jan
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Satman -
The fact that you survived an AN that large to begin with tells me you are stronger than most, and that your surgeon is truly skilled. Since he knows your history, I think I'd trust him when he says not to worry. I know, it's easy for him to say - it's not his head, but he has invested a lot of time and energy into your head.
I can't exactly run over to pamper you either, and I'm not sure I'd know how - I'm guessing a manicure won't help - but maybe a big bowl of ice cream might do the trick. ;D
Lori
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topped with tequilla,which i have a feeling i might dive into tonight.
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Sat.....I just logged on after being gone for awhile with surgery and a MRSA infection. They put me on IV antibiotics and I developed an allergic reaction and they had to take me off. I was devastated when 10 days later my infection and pain returned. I have decided like my son that I need to wake up each morning and think of just 1 reason to smile and to take just 1 minute at a time if that is what I need to do. I know how hard this can be and you have been through so much in such a short time. You should be very proud of yourself! Don't drink to much tequila you could fall and hurt your noggin. Maybe they could tie you off to your chair with a harness at least then we would not have to worry about you (lol). Hang in there we are all on your side and YOU WILL GET THROUGH THIS TOO! :-* 16
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thanks omg16 havent heard from you in awhile,sorry to hear about the surgery ,hope your ok.
i will have them tie me down,they normally have to anyway,ha,ha.
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Good plan it is nice to know that you are taken care of and we will not have to worry. I'm doing well now at the moment and am on my way out of town so gotta run. Let us know how you are doing. 16
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Satman,
Wow, this does really sucks........but I'm sure you already know that we are all behind you. Like it was said, you have overcomed a lot already and now I know you will handle this also....One day at a time!
My prayers are with you on making the right decision.....Hang in There!
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Definitely go for a second opinion - and a third, if necessary.
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Satman,
I am so sorry to hear this. Of course, if it stays small and never causes you any grief than it will be fine but just having to worry about going through this again is enough to send anyone directly into the Tequilla. Try to be calm, it is practically invisible compared to your (former) AN. It is great that you trust your doc; give it some time and wait and see what happens. Again, I am so sorry and yes, it sucks big time, but what can you do? Take a deep breath and carry on; you are incredibly strong.
Best,
Marci
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Satman:
Let me echo the chorus of sympathetic words that have already been posted. This meningioma news does stink, no question, but it may not be all that terrible if it remains tiny. Because we cannot predict the future I would just try to live with it because when you're all done worrying, it'll still be there. I would vow to worry if the next MRI shows growth. Still, although you're obviously a strong personality you certainly have reason to feel a little down about it. However, your MRI no-growth news should certainly help alleviate the blues, somewhat. Well, that and some Tequila should do it. Have a good weekend. :)
Jim
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Satman~
That does really stink but at least you did get some good news - think how it would be if you AN DID grow?? Be careful tonight!!
You know we are here for you - thanks for sharing this with us!
K
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Sweetie,
I want to add that I know this is hard BUT, I would like to point out that really it doesn't suck yet. You may never have to go through surgery. If you can not worry til there is something to worry about it may help. And you can get more opinions and not have to take the opinions. Just to see. I know this is probably a shock for you so after it settles you may be able to find some other options. You have lots of time this time too.
Everything is going to be okay. I promise. I don't know how you feel about meditation. If you are open to it some visualizations of the tumor not growing might help. Even if it just helps you to feel better. Just for a minute or two.
Sending sunshine.
Robyn
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Hey Satman-
I just saw your thread! Wow, talk about sucky news - I am so sorry to hear about the meningioma. Seems like you've been through enough.
Don't hit the tequila too hard, okay? Think of the headache... Maybe just eat the worm?
Sending you a hug,
Debbi
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Oh Satman that is soo disappointing. When I was dignosed with a tumour then were not sure if it was a meningioma or a AN. After it went to pathology we found out is was an AN. I went to a great site for support http://www.meningiomamommas.org/, good for women or men.
You will get through this you are a fighter and a survivor.
Michelle ;D
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Satman, do not drink the worm. I repeat, not the worm! ;)
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Satman,
I'm so sorry to hear about this latest development. You have certainly been through enough but as the others have said you have proved yourself to be a survivor. I don't blame you for being worried and upset but you will get through this. Hopefully it won't grow toward your brainstem and you will live to be 90 and never have to do anything about it. Hang tough!
Wendy
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....runs in an puts arms around you....
For someone who made it through, first, the diagnosis of 8cm brain tumor!?, second, the surgery (usually "second" is deciding form of tx, but your's was emergency), third, recovery, makes you SPECIAL. In my opinion (I know you didn't ask for this but....) special people don't suck!
Okay so your back to "first" with this crappy dx, we're here for you and certainly understand. I certainly would stick to who I'm comfortable with, who has shown me they have the experience with my noggin, and who I trust completely. Sounds like you have this problem solved, oh and by the way, may your "oma" stop dead in it's tracks!
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Hi John: I echo what Wendy said, keep positive thoughts, believe you won't have to do a thing (I'll up the age to 101 !).
Always good thoughts, Nancy
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Satman,
I am so sorry to hear about your latest curve ball. When I had my initial MRI with contrast they found a meningioma in the central nervous system part of my brain. I asked if they were going to take that out when they took the AN out. The dr said no that they could not operate on that part of the brain. I almost didn't have the AN out because I figured that I would be a goner anyway with two brain tumors! I had the surgery and have had tons of complications since then. I now intend to live to be at least 100 and if I can't walk straight people can just assume I'm drunk! You never know, I might just be!! It sounds like you have a wonderful doctor. Listen to him and let him do the worrying. That just gives you gray hair!!
I figure with all that is in my head, at least it doesn't rattle anymore! Take care and I am keeping you in my good thoughts and prayers.
Hugs,
Brenda
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Satman,
i am soo sorry to hear about your newly found tumour. I have an AN and i live as if i will have it out and after that life goes on without further complications!
Apparently, this is not the case. Not only that you went through so much, but you have to go on your journey!!!
Since i am fairly new to this forum, I haven't followed your story. Can you give some information about the doctors you had to take your AN out? Where did you have your surgery? How much did it cost and do you have any complications after the surgery? I am expected to have facial paralysis and I am gathering infoto know how to deal with it!
For the time being just wait for the next MRI to see if the meningioma grows. When will you have another MRI?
Hug you!
Hrissy
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dear hruss,i tried to find my very 1st post but it's gone so i will try to remember this stuff.
i was at work one day and started getting headaches,along with these headaches i would get blurry vision in my left eye only,in my left ear i would hear this woosh,woosh sound,then all of a sudden i would start stumbling,granted these symptoms would only last for about 3 minutes and then everything was normal. needless to say i kept blowing it off as no big deal.
earlier that year my family dr. had put me on bp meds which i quit taking so i thought all of this was related to blood pressure,so when i went to see my dr. she said that she did not think it had to do with bp,so she sent me in for a catscan,that was when they found a 8cm mass,when they told me that i passed clean out,i then woke up in the E R,and then i was rushed into surgery, after a 17 1/2 hr surgery ,and a 3 day induced coma i spent 15 days in icu this is when i met dr.Chang [miracle man in my eye] anyway to make a long story short i spent 15 more days in in-patient re-hab in a wheelchair,graduated to a walker,then i spent 5 or 6 months in out-patient re-hab and started walking on my own and driving after 6 months,i returned to work full time 7 months to the day.
all in all i have about 27 hrs worth of surgery in a 4 month window.
17 1/2 hr tumor removal via translab,8 hour 7-12 nerve jump,and 2 hour eye weight and stitch in the corner of my eye,and yes, hair started falling out.
it is the people on this forum that helped me carry through. i had the surgery done at plano presby in plano texas[suburb of dallas]. most people on this forum get to research thier dr. i was fortunate to get the one i did and am actually glad it went the way it did because i would have drove myself crazy wondering if i had picked the right guy,make sense? my next mri is 1 year away,but i plan on sliding in there around 7 months.
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John,
I had an MRI 6 months post op my Translab. My surgeon still saw something there. He said it could be the remnants of my AN or just a blood spot or other dead tissue. I was told that if he'd never knew of my past history he would've guessed it was a meningioma. That was over 2 years ago and my MRI still had no growth, in which my last MRI which was this summer. Keep the faith my friend.
Chris
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Apparently I don't navigate this forum that well, because I just found this thread. I remember that you hailed from Dallas, but I never knew that your Neuroma was 8cm! I also just read your reply to Hruss about the details and I have to agree with someone's observation that you are a survivor in the bigger sense of the word. I am sorry to hear you have something else to deal with, but others have optimistic reports of no new growth; and it sounds like you are in good hands with your miracle doc. I remember the first person we thought to contact - the very day of our diagnosis - was a guy who had a meningioma (only person we knew who had a tumor in his head). His story inspired me throughout my descision making process ( I did not find this group till later),
as he is possibly the most level headed person I know. If you want, I know he'ld be happy to talk to you - just PM me and I'll put you in contact with him. Meanwhile, you've got to survive the hurricane (we're lucky - it's projected path is just to the Northeast of us), and the tequila. Make sure it is good stuff.
Take Care,
Jules