ANA Discussion Forum
General Category => AN Issues => Topic started by: Brendalu on February 04, 2008, 03:29:20 pm
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I was unpacking a box from my move last June (yes I know I'm slow). I came across all of my MRIs and reports and hospital notes. I am very confused. I admit that I did not do enough research. I was scared and figured I was going to kick the bucket anyway, so I just wanted to get that sucker outa there. I survived and have many problems. The newest is the side operated on was my right side. I had perfect hearing in both ears and the only thing wrong with me was I was dizzy all of the time and had and still do not have balance. I am now without hearing in my right ear. My MRI reports both prior to surgery and after, all refer to the LEFT temporal lobe. I have a fullness in my left ear now. (Before I read all the notes and reports). I have made an appointment for another MRI with contrast....I am long over due for next week, but am I reading more into these reports than I need to?
Now I am going to go drink shooters of Tequilla and bury my head..........................
Brenda
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Brenda, make it a grey goose martini and I've got the popcorn ready! :-*
Oh, I really dislike to hear this, esp. from you.... but, you know what? You didn't "kick the bucket" and I'm really glad you didn't! :)
Let's see what the MRI says when you have it done. Let's see what it says... I (personally) don't like to jump the gun when it comes to reading into too much medical thingy's (as you know, I am FAR too well versed on much that is medical thingy's)..... let's stay kewl and kewl and see what the MRI says.
Don't bury your head... it'll mess up yer hair! ;)
ox
Phyl
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Brenda:
Although an MRI scan is certainly wise at this point, I would call my surgeon to ask about the discrepancy in the MRI scans between the left and right lobes being affected. There may be a logical explanation and no need to be depressed. I certainly hope so.
Please keep us informed as to what happens.
Jim
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Brenda: I am so sorry to hear this. I agree with Phyl & Jim: check with the docs & get another MRI.
Take a deep breath & try to keep a peaceful heart.
I remember my 1 year post op MRI, the radiologist said I still had a tumor - it was you guys on this forum that said
it was probably fat packing, etc. Everyone was right (except the radiologist) - & I had worked myself into a tizzy
for nothing. Let's all hope this is a misprint, something, until you know for sure.
Putting out good thoughts for you Brenda, Nancy
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Brenda,
Let's just hope its an error on them in the report and they meant right temporal lobe. I know myself I have just as much noise, fullness and earaches in my good ear. So don't be too concerned with that. Hope your MRI shows nothing.
mema
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Thank you all for your kind words of encouragement. My PCP scheduled an MRI for Friday morning. She is concerned also, because after contacting my other doctors she is as confused as I am. She sent me for my original MRI and that report said that the AN was on the left side. I spent two hours in her office today. After I left her care for that of the "pros", she didn't worry that I wasn't in the best hands. She said the only explanation she can see is that I have two ANs and they operated on the bigger of the two. She saw two in the MRIs I took into her. I never have and no one else ever mentioned it to me. I am not going to go off the deep end until she calls me back with the results of the MRI on Friday. The radiologist has agreed to read them as soon as they are taken and get back to both of us. I just hope that if there was two that they took the biggest one and the other hasn't grown since my last MRIs. Thank you all. Now I'm going to eat a big bowl of popcorn and a martini or two and see what happens next. At this point I am more confused than anything else.
Brenda
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Brenda,
Please, add me to the confused list! I hope there is a rational explanation and it is in your favor!
Eve
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Brenda,
My thoughts are with you. I really hope this is all just a misunderstanding. Either way, I'm here for you if there's anything at all I can do. Sending lots of hugs your way.
~Karen
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Brenda,
You are in my thoughts and prayers. I hope you will have answers soon. Good ones!
Take care,
Lynn
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Thanks All,
So much for up front, tell you everything doctors. I have two AN's. Or had One is gone, the biggest one. I still have my MRI scheduled for this week, so I'll know if the left one is growing or not. Then I will be able to make an educated decision what to do.
The explanation I received via my PCP from all the doctors yesterday was that because of my initial testing: I had two lumps in my right breast (Ultrasound same day as MRI) and the testing for MS all coming back at me the doctors felt that telling me I had two ANs would send me over the top. Since the left one was very small they felt I had time to deal with all of the other issues coming at me before I would need to deal with the left side of my brain. Believe me, I am not happy with their decisions. My PCP was not told or sent the full reports. She would have helped me deal with it as she is now. I appreciate all of the good thoughts and prayers and I will keep everyone updated. Hopefully it hasn't grown.
Hugs,
Brenda
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*runs in.... runs over to Brenda and gives BIG massive huggles :-* :-* :-* ...... runs back out to prep for office*
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Brenda, Big hug to you and I am sorry to hear of your findings. I am now going on 5 yrs since my tumor on the good side was found. It has just really caused problems in the the last 6 mos or so. I go to the Univ of Iowa but have talked to Dr Slattery from House at the AN symposiums. House are having fairly good success with removing small tumors and saving hearing. I am thinking in the 75-80% range. Making choices for treatment is just a little harder with bilateral tumors. The radiation versus no radaition is a hard chouce also. My surgeon doesn't believe in it for NF2 as feels it destroys the cochlear nuclei so less of a chance for an implant of some type. I will eventually be trying for a cochlear implant.
It is terrible how the drs have treated you with not telling your your results.
Hang in there and i will be thinking of you! Cheryl R
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To add to the above. I am thinking I do not have the typical growth rate for the bilateral tumors. Mine seem to grow faster than most other NF2s from the people I have talked to.
I hope you end up with lots of time to watch and wait.
Cheryl R
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Brenda,
So sorry to hear of all this. I often wonder why docs don't tell everything. I hope and pray your an is small and really doesn't grow to fast. It sounds like you have a good pcp, thank goodness for that.
mema
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Brenda,
Many hugs to you! What a way to find out! I wonder, would they tell you some day or just wait for you to have symptoms when the tumor grows too big to have any choices?!! This reminds me of my own situation when the first neurosurgeon told me, my family and everybody else that he got all the tumor out. Only 10 years later when there was no mistake that the remnants were not scar tissue but a live, growing tumor, he admitted that he did not take all of the tumor out because "one end of it was too far and very friable". Maybe I would not be alive today if got it all out, who knows. He had, however, to tell me that something is left! Needless to say, it affected my life in a big way.
I sincerely hope that your other AN is the same size, you have all the options open to you and , very importantly, preserve your hearing. Do you have any symptoms right now? MS can be easily confused with AN or two ANS. Did that prompt all the testing?
Eve
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Eve,
The original systems of my AN were extreme clumsiness. I very poor balance for a number of years and the last several months prior to the diagnosis I was very dizzy. WHen I fell and really messed up my leg my PCP decided I needed an MRI. The report she got back was an AN on the right side and gliosis in my central nervous system and "cloudiness" on the left side. The ENT and the neuro consentrated on the right side and totally dismissed all further MRI reports and MRIs that showed the left side AN. Because I had so much gliosis in the central nervous system part of my brain, more tests were run and I know have a shot once a month that seems to keep the MS in check. My balance is worse and the dizziness has never gone away. I had noticed a fullness in my right ear prior to my surgery. I am now experiencing the same fullness in my left ear. I hope that answers your question. Sometimes I get going and ramble. I have decided that I have a lot of options open to me and I am going to have a positive attitude if it kills me to have that attitude!
Hugs,
Brenda
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me likes your attitude, Brenda! Hang tough!!!!!! Cheering you on!!!!!! :-* :-* :-*
Phyl
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Brenda,
You have a wonderful attitude! Best of luck to you with this AN and all other health issue and , please , keep us updated.
Eve
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Brenda: When I read that it IS indeed an AN on the left side, I honestly thought 'what a nightmare.' I didn't know what to write to you
about it.... Then, I saw your reply to others - your attitude gives me, & I'm sure others strength, & helps us all realize we need to keep a
positive attitude no matter what is thrown at us... How we allow ourselves to think/feel, makes all the difference in the world, this is
a lesson I learned from dealing with AN complications; hopefully we all will continue to live our lives to the fullest, keep ourselves happy
& healthy.
Always good thoughts my friend, Nancy
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Brenda,
We did it for Talyor and am doing it for you.
I have created a national day of big hugs and cuddles fer ya on Friday. The whole country down here somewhere in the Indian ocean will be looking east and sending well wishing thoughts.
Your strength is positive for all of us and I'm sure that with a big hug and well wishing that hopefully you'll be better informed after your MRI. Please make sure you get the real answers from the medico's. To say that they didn't tell you you had two AN's is negligence of the highest order because you may have selected a different treatment option.
Try and be pre-armed with your questions because you may forget when you see them after your MRI.
hugs from down under.
Laz
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To All of You,
Thank you. I can feel the hugs, huggles and prayers and I so appreciate them. I am going into this with a better attitude...........it's probab;y the 120mg of Cymbalta, but what ever it is with all of the encouragement I get from here I know I will be ok, what ever turn my road takes,
Massive Hugs to all of you,
Brenda
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My prayers are with you too...you teach me the importance of a positive outlook..
God Bless
T
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Brenda,
I have never been good with words. I'm here for you and want what's best for you. If you ever need anything, just ask. Lots of hugs!!!
~Karen
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hugs hugs hugs to you Brenda..... I also wanted you to know you are in my thoughts and my prayers. I agree you have a wonderful attitude and you have a ton of support here :) Hang in there.......
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Brenda I was catching up on the posts I have missed the last couple of weeks and was shocked to read yours. I do not even know what to say. You have my full support and we can all help you through this. Kisses to your forehead. :-* :-* :-* :-* :-* 16
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Brenda, this is just a possibility - but... when the medical profession refers to "left" and "right" sides of the body - the are often using what's called the "anatomical position" - this means looking at a patient standing upright facing you with palms forward. Their left would be your right, and so on. So, if you look at your reports, see if it says "the patient's right" or just "right" and that might be where the confusion comes in.
Like, I said, just a possibility - I think a lot of doctors just use the patients actual right and left these days because it does get confusing, but if your doctor is more old school, he might prefer using the anatomical position references.
Hope you get to the bottom of this one and everything's as it should be!
Lori
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Hi Brenda,
I haven't been on the site for several months. You were there for me with encourging words and advice when I first joined this site, and just wanted to you to know that i am thinking of you and praying for good news for you.
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Thank you Lori and Susie,
I am one of the "lucky" ones and am double sided! Fortunately, the left side AN is very small and for a while at least I will be a wait and watcher. I am also investigating radiation. I've lost a tiny bit of hearing , so I say huh alot more often. Audiologist says it could be age related.......no one in my family was ever hard of hearing and lived to be very old. So I never knew that there was such a thing and I still don't think I believe it! I am just glad that I found about about this left sided monster before it was too late to preserve my hearing or have a chance to really investigate and make sound decisions.
Your prayers are appreciated.
Hugs,
Brenda
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*runs in... gives Brenda BIG huggle... runs back out!* :-*
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Brenda -
your positive attitude never fails to amaze me.
I'm glad to hear that the AN on the left is very small; let's hope it stays that way.
Keeping you in my prayers,
Jan
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Hugs to you too Phyl, I think you are totally amazing and you "rawk"!! :o
Hugs,
Brenda
thank you, Jan. I think it is the Cymbalta!!!
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Hugs Brenda,
i would probably share your view on radiation. You may want to check the issues with a baha or transear as they use bone conductivity.
cheers
laz
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Brenda,
I've been away from the forum for awhile and just read through your thread. I am so sorry you are dealing with another AN. You know we are all here for you.
Sending a big hug to you.
Cheryl
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Oooops, missed this one! Gulp. Sorry Brenda, that's terrible to face into. I know you have a great attitude, and the AN is small, so radiation is a good option. As Cheryl said, we're all here for you!
Hugs! Lorenzo :)
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Brenda,
I think you are right about the cymbalta. I have so many things going on in my life but have been able to deal with them without freaking out and I swear it is because of the cymbalta.
~Karen
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I need an extra dose of Cymbalta! I went to the doctor yesterday because I was having a lot trouble walking and my legs are swolen and purple looking. She said they are retaining fluid and have to be drained. Anybody have that done before? I know it is none evasive, but does it hurt................I'm really done with pain? She did say that myheart is in good shape so she ordered tests to figure out what is causing it. Can't take Lasik because of a sulpha allergy and even though Lasik don't have that in them they sometimes cause the same reaction. Just way too much going on right now.
Just sign me tiredddddddddddddddddddddddddddddddddddddd,
Brenda
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Hi Tiredddddd,
I do not know anything about your most recent condition, but wanted to acknowledge your new round of tests for your legs. When it rains, it pours; but then the sun comes out:) After a brain tumor, the rest is just like a pesky mosquito..
Seriously, I hope all goes well. When are your tests?
Kate
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Hi Brenda,
So sorry to hear about your current state of tiredness and all. I will keep you in my thoughts and prayers AND I will try not to complain about my trivial 'stuff'. Hang in there, you will see the sunshine before long.
Hugs & :-* :-* to you,
Annette
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Brenda~
Happy thoughts to you today -- hope today is better and you get some much needed rest. You are definitely in my thoughts and prayers.
Sometimes there is a rainbow with the sunshine!! 8)
K
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HI Brenda,
Still thinking of you... Even more now! :)
Ciao, Lorenzo
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I feel all warm and fuzzy now. I go for compression therapy on Tuesday. It just sounds like so much fun. I had blood work done today and and EEG and EKG this afternoon. They like to keep me busy I think. I also had the flu over the weekend and I'm over that and feeling much better. Thank you all for your good thoughts. ::)
Hugs,
Brenda
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Brenda,
I've been away from the forum as I'm in recovery from "total annihilation" better known as labyrinthectomy of my left inner ear and working with PT to regain my balance. I, like everyone here, am shocked to read your post. :o I have you in my thoughts, my heart goes out to you dear and yes, you do have incredible inner strength. Now, next time you are going to have popcorn (my favorite snack) and vodka, please invite me cause I like a party! :-*
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Karen, I was thinking of you recently and wondering if you had had your procedure. Do you think it has helped or too soon to tell? I hope it does work for you.
Good luck with your recovery. Cheryl R
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Ahoy Brendalu-wench!
Jeez, I leave the forum for a week and all health hell breaks loose! Please know that the ship's sick bay will take good care of you while you are under the weather and the crew will buoy you up while you are feeling down. Remember that surrounding youself with others in the same boat helps keep you afloat.
We'll all be sending evil thoughts to that other nasty bugger and cursing him to shrivel up and die, or at least stay PUT!
Big Hugs to You!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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CAN a doctor just choose NOT to tell a patient a very significant piece of medical information? I don't believe that kind of information is theirs to withhold. Count me as completely shocked and a little umm....upset that your doctors would make a decision about what you can handle.
It's one thing if there is an incidental finding that has no bearing on life/treatment/decision making...but I think a second tumor doesnt fall under the category of incidental. I find that behavior ethically questionable, to put it mildly.
On the other hand....your attitude is admirable and your doctors are lucky to have you!
Best, best, best luck.
Amy
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Brenda,
I am pretty new here and don't post often, but feel compelled to tell you how sorry I am that you have had such a rough time lately. I thought it might help a bit to let you know that you are helping people you don't even know, in ways you can't imagine, just by being willing to share your experiences. I admire your strength, resilience, compassion and honesty. Thanks!
In fact, to the whole "crew":
I get so much from all of you strong, positive "wenches" (and 'lads') who are willing to share your life's tales with us shy "stowaways".
So Brendalu, I am thinking of you, and hope that life cuts you a break real soon! You deserve it!
Tracie
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Brendalu,
a little late, just returning to the forum after a bit of a break, read through your thread. My heart goes out to you and I am praying for strength for you as you continue your AN journey. Keep on drinking that tequilla, maybe it will kill the dang thing. Keep up the positive attitude. your an inspiration to so many
HUGS
Patti ut
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Hi...
I am new here... and so might have this all wrong...
but is what you mean that you had the AN & surgery on the right side, but when you look at the original MRI the AN appears on the left side of the pictures???
My AN (and resulting hearing issues and tinnitus) is on the left side. But when the doc showed me the MRI scans, and when i looked at them myself yesterday (i just picked up the disc the hospital burnt for me) i see the tumor on the right side of the pictures. i just figure it's because the scans are not from the top looking down, but the bottom looking up (which would account for the reversal).
Could it be this simple?
Or did i not read the post very well? -- i said i'm new!
(or am I the one in big trouble!! - ha?)
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Calimama,
When I fianlly got all the information in and more tests done, after almost three years and translab on a 3.5cm AN on the right side, I have a very small AN on the left side. It was apparant when the first films were taken and no one said anything. No reason, no excuses. I don't think this happens very often. Let's hope not. Because the left side is small I am investigating all of my options and kind of in a wait and watch mode.
I have a very strong will and a good attitude and I am taking each day at a time. Also, in your case, read your reports that go with your MRIs. I never did until I was unpacking recently and that's where the confusion for me began. I hope this cleared up your confusion or at least didn't make you more confused!
Brenda