Very Newbie with a Question about Translab Followup MRI's

[emom]

I am researching options for resolving my 2cm x 1.8 cm AN issue. 

I am also claustraphobic enough that it requires general sedation to get me in an MRI.  When I read on the net that there must be followup MRI's yearly for the rest of your life (I'm 61) after GK, CK or NSF (R?), it was disturbing to me, as the thought of yearly general sedation is not good.  THEN I read descriptions of the procedures, and that is even MORE not good.  There isn't enough Ativan in the world!!!! lol.  My husband would prefer it, I think, because he always is very uncomfortable and unhappy when I am 'laid low' with something, and brain surgery is a definite something!  But I am not comfortable with the thought of radiation OR life long monitoring OR the fact that what I have read sounds like the tumor swells before it recedes and I already have nerve damage. 

At any rate, my husband and I are discussing various options, and he asked an interesting question.  Does traditonal surgery, and I am leaning towards trans lab, as 90 percent of the hearing is already gone in the right ear, require yearly MRI's, or do you only have to face that again if you reshow symptoms?

Thank you for any answers.  My next ENT appt. will not be til Oct. 18th, and I would rather be better informed before then.  I will try to post my 'story', but I'm not sure which thread I should use?  Thank goodness for this site.

 

[tenai98]

Hi emom and welcome to the forum..
I had translab and the doc had to leave some behind..I had a follow up MRI every six months because of possible regrowth and now because Booger is stable I am scheduled for another one in 8 months..if that one is also stable then a yr afterwards and eventually graduating to once every five yrs...it really depends on your doc...each doc has their own set of criteria...My neurosurgeon susgested an MRI a yr after surgery whereas my neurotologist wanted one six months after...so it really all depends on doc...
JO

[emom]

Thanks.  The once every five years I could deal with more easily - I'd estimate about 5 total during my expected life span left, lol!  And perhaps my claustrophobia would also influence the doctor - you never know. 

You named your AN?  Mmmmmhhhhhhhhhhh.  I will have to think on this, but what immediately pops in my mind is "Ernestine."  I shall cogitate upon the subject. 

[emom]

Definitely 'Ernestine.'  It's kind of like having an unwelcome guest you want to find ways to get to vacate the premises.

My goal is  "goodbye, Ernestine."

[moe]

Hi emom and welcome
My tumor was completely removed, along with the sacrificial face nerve (my post op is NOT the norm, so don't let it scare you- it was complicated and completely wrapped around the face nerve and its branches).
So I had a one year MRI and then a five year, which will be next June.
If they get all the tumor, probably a year. If they go translab, hopefully they can get the whole tumor. Is there any brainstem involvement?
I had translab.
Maureen

[Lizard]

emom,
Welcome to the forum, my experience so far with MRI's is as follows, but every doctor is different and if they know that you are severely claustrophobic then they can probably adjust your visits to the tube.  How about open MRI, I had one of those as well and it was GREAT!

August 2008-initial MRI that found the AN
October 2008- pre-op MRI
November 2008-post-op MRI
December 2008-another post-op MRI
June 2009-another follow-up after some of scar tissue was absorbed
October 2009-1 year follow-up where they could finally see the area was dark!  No tumor left over!
October 2010-2 year follow-up (going to be the 28th)

After 3 years we'll go to every 2 years for a while and then if no changes then every 5 years.  Not too, bad.

See if you can get the open MRI, its not scary at all!

Hang in there and please feel free to ask anything and please keep us posted regarding your treatment decisions.
Liz

[emom]

Moe, I am not sure about brainstem involvement...although my doctor did say something about minor pressing.  I was too hard hit (even though prepared and really knew what she was going to say because of research on symptoms) to ask further.  I will at my 18th followup.

Lizard and Moe, thank you both for the thought of an open MRI, but I had an even worse reaction to that than I did the enclosed one.  I made it in the MRI for about 2 minutes before I got to the "GET ME OUT OF HERE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!" stage. 

I made it in a closed MRI for as many seconds as it took for them to bolt down the face mask over my head.  About 20 seconds, by my estimate.  Part of my problem is I can't do restraints. 

Sigh.  I am glad the experience was good for you, though.

Thanks for the info on the MRI's.  Hopefully, my doctor will go the 'next year' and every five years route.

[krbonner]

I had translab with a complete removal of the tumor.  I had an MRI at 9 weeks post op (as a baseline; it was supposed to be at 6 weeks post-op), one at 1 year post-op, and one at 3 years post-op (that was a year ago, and was my most recent one).  I'll have one more at 5 years post-op (next year), and then move to an MRI once every 5 years for monitoring.

But each doctor has their own schedule and some of it will depend on how the surgery goes and if there's any residual tumor cells.

Good luck!

Katie

[Jim Scott]

Hi, emom ~

I'm sorry about your AN diagnosis but I'm glad you discovered the ANA website and decided to register and post on our discussion forums.

Although you've received responses to your questions regarding the frequency of post-surgical MRI scans, I wanted to state that the frequency of follow-up MRI scans will be determined by your doctor and his decision will be affected by any complications that might develop, post-op. 

I underwent both surgery (Retrosigmoid) and irradiation (FSR) for my AN.  I had an MRI scan immediately following my debulking surgery, another MRI at six-months post-op and another MRI at one year post-op.  I underwent a fourth MRI at two years, post-op.  That one showed slight shrinkage and definite necrosis.  Due to financial issues and the fact that I have no symptoms, I've opted to hold off on another MRI scan for awhile and my neurosurgeon, who is quite cautious and conservative, hasn't asked me to have a 'fresh' MRI so I'm assuming he isn't too concerned at this point, some four years post-surgery/radiation.  I'm good with that.

I'm sorry to learn that you're claustrophobic, which definitely makes the MRI as problematic as it is necessary for post-op AN patients.  I don't have this particular problem but I know that many people do so I would assume there is a protocol for dealing with patients needing an MRI head scan that also suffer from claustrophobia.  This issue is definitely something to pursue with your doctor because the doctor orders the MRI scan and can include whatever needs you have (to deal with your claustrophobia) with his order.

I hope this will work out in a satisfactory way so that you can continue your plan to evict ''Ernestine'.       

Jim

[emom]

Thank you so much, Jim.

I have seen from the posts I've recieved that followup MRI's ARE necessary even with Trans Lab, and that makes sense.  However, it seems that fewer are required that a yearly, as with GK.

The fewer the better.  I a of an age such that frequent general sedations are things to be avoided if at all possible.

Still, I feel so much better about my options after reading the posts from all of you.  I am seriously leaning towards the Trans Lab, pending my doctor's recommendations, but feel that all the info I've been given can do nothing BUT help!

It's kind of funny.........my daughter has lupus, and we learned quickly that you must treat each person's lupus as a unique disease.  Well, AN's are kind of like that, due to the fact that they are relatively rare and each one is unique.  Yet all the info you can gather and all the things about lupus you learn help individually.  Obviously that's particularly true here.

What I am trying to say is "You GO, forum!"  Ya'll are great.   Thanks again.

[CHD63]

Hi emom and welcome to this forum .....

I can relate a little bit with the claustrophobia ..... although I am not severely affected, the first MRI I had was a traumatic experience ..... I was totally unprepared for my reaction to it.  I have learned to ask for a radio and/or music to be played.  Then I always close my eyes and focus on the most beautiful scenery I can remember seeing.  I have never had an open MRI, but it seems like it should be less threatening.

As for frequency of MRIs, it totally depends upon your doctor(s) and what your situation is post-op.  I had MRIs at six months, one year, and two years.  I will have another at three years and then if it shows no change (they are watching a small area that is most likely scar tissue but could be regrowth), I am guessing he will say at least two years before the next one, maybe five.

Best wishes.  Clarice