Did I open a whole new bag of worms??

[Brendalu]

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

[ppearl214]

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

[Jim Scott]

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

[nancyann]

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

[mema]

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

[Brendalu]

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

[jerseygirl]

Brenda,

Please, add me to the confused list! I hope there is a rational explanation and it is in your favor!

 
Eve

[Static]

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

[cookiesecond]

Brenda,
You are in my thoughts and prayers. I hope you will have answers soon. Good ones!
Take care,
Lynn

[Brendalu]

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

[ppearl214]

*runs in.... runs over to Brenda and gives BIG massive huggles      ...... runs back out to prep for office*

[Cheryl R]

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

[Cheryl R]

   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

[mema]

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

[jerseygirl]

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