ANA Discussion Forum

Watch and Wait => For those in the 'watch and wait' status => Topic started by: char1957 on February 09, 2013, 05:00:02 pm

Title: Wait 3 years for next MRI??
Post by: char1957 on February 09, 2013, 05:00:02 pm

I had my AN removed 3 years ago yesterday.  It was 2.5 cm and encompassed the 4th thru 8th cranial nerves.  Lost hearing and vestibular nerve on right side.  I think I have been managing fairly well with the "new me".  I also had BAHA surgery done a year ago this past April.  Unfortunately it hasn't worked very well for me, but at least I tried.

I went in for my 3 year MRI and was told that there is no regrowth on the AN, but they found a small 10mm menengioma in the superior right lateral frontal lobe.  I had the MRI done locally as my original surgeon is 4 hours away.  I sent the report and film there.  They called and told me to come a week earlier than my scheduled appointment.  I saw another neurosurgeon, as my original neuro had moved back to Australia.  (I loved him) 

I asked the new guy about my new symptoms, and if they could all be from the AN.  All his answers were "I don't know". 
I also asked if a menengioma grows 1 to 2 mm a year,  then why is mine 10mm?  I was told, nothing to worry about, come back in 3 years for another MRI and if it grows we will just give you a one time "zap"!  He then told me that if I wanted another opinion I could fly to Australia and see Dr. _____.  ????

Does this sound right to ya'll?  I have been pondering this for the past week, and I just don't know.  I am not computer savy, and I have probably posted in the wrong place.  I know the new one isn't an AN, so maybe I shouldn't be posting at all....   Thanks in advance for any advice.   

Title: Re: Wait 3 years for next MRI??
Post by: ramirezjrj on February 09, 2013, 09:13:22 pm

Here is  a link to some good information.  http://www.neurosurgerydallas.com/2_1_6_10.php  You can copy and past the link to  your web browser.    I would get an other option if it was me. 

best wishes

Title: Re: Wait 3 years for next MRI??
Post by: Susan A on February 10, 2013, 07:53:52 am

I'd get another opinion if I were you! Telling you to fly to Australia to see your former doctor is just rude. I certainly wouldn't wait 3 years for another MRI with growth like that in the meningioma!
I have an AN and meningioma and my doc recommended annual MRIs.

Title: Re: Wait 3 years for next MRI??
Post by: nftwoed on February 10, 2013, 11:33:07 am

Hi Char

   It sounds dangerous to me to wait!
   One thing, an AN plus a meningioma can sometimes give an NF-2 Dx.
   In my reading, meningiomas grow as fast as they want to.
   If it were my circumstances, I'd want another opinion, and by someone familiar with NF-2. The opposite side AN, typical of NF-2, does not need to appear the same time as the other.

Title: Re: Wait 3 years for next MRI??
Post by: Sheryl on February 12, 2013, 04:07:13 am

Hi Char - sorry to hear about your new tumor.  My husband has been battling meningiomas for over 8 years (regrowths) and I have done W&W for over 11 years on a schwannoma (like an AN) on my 9th cranial nerve.  I would not wait 3 years and suggest you seek another opinion without traveling so far.  Some M's are very slow growing, some are not - everyone is different.  There is a wonderful site called Meningiomamommas (www.meningiomamommas.org) that may give you more information and insight.

Good luck,
Sheryl

Title: Re: Wait 3 years for next MRI??
Post by: char1957 on February 16, 2013, 06:56:25 pm

Thanks so much for your replies.  My GP is sending me to a local Neurologist.  Hopefully she will at least read my films and give me a little more info than I got from the neurosurgeon.  Thanks for mentioning NF2, I wasn't familiar with that at all and I will ask the neurologist about that possibility. 

I keep telling myself that the worsening symptoms are a residual of the AN and not the new menengioma. 

Thanks again,
Char