6 month post-op MRI results

[ddaybrat]

I haven't been on in a while, but just got my 6 month post-op MRI results and have a question.  I didn't get to talk to the doctor, but his PA read me his notes.  I was told the nerve had been dissected, but that it was 'enhanced'.  I questioned if that meant that there was still tumor present and it was growing and was told 'yes'.  The doctor doesn't want to see me for a year.  I'm not sure if that meant 1 year post-op, or 1 year after my 6 month post-op MRI (ie. 18 months post-op).  This has been sort of difficult for me as I had my surgery in Indiana, but saw a neurosurgeon in Nebraska for the MRI. 

My question is....ANs are supposedly slow-growing tumors.  If so, should the doctor be able to determine there has been growth since surgery after only 6 months?  The doctor that did the surgery told me he thought he had removed all of the tumor so this was a real surprise/shock to me.  If he did get all of the tumor, is it possible a new tumor has developed?  I'm sort of confused and will probably call my doctor and see if I can get more of an explanation, but wanted to know if anyone else might have been told something similar.

thanks, Pat

[anissa]

Hi Pat  I know for sure that my Dr. left a little bit of the tumor on my facial nerve (darned thing wouldn't scrub off!).  Anyway, when I went in for my 1-year post-op appointment and he said there was a lot of "post-operative junk" but nothing alarming to be seen.  He said that with the scar tissue and fat and what there was left of the tumor it's hard to see and determine what is what, and it will be for 5 years. I have to go every year for 5 years and then if nothing then I'll go out to 5 year appts.

I would call your Dr. for sure and get some clarification, it's unfortunate that he couldn't be the one to give you the results the first time.  No one likes to sit and wonder, especially if unnecessary.  Best wishes and keep us posted.

[ddaybrat]

thanks...I was a bit irritated about getting the results from the PA.  I waited quite a while to get them.  I kept expecting them to contact me and they didn't.  My memory sucks since surgery so I kept forgetting to call them.  Every time I thought of it, the office was closed.  I'm tempted to make an appointment to see the doctor...that way I can be guaranteed of getting to talk to him and can ask questions and get the answers from him personally.

thanks again...Pat

[ddaybrat]

It's been over a year since my surgery, but wanted to add an update to this post.  When I saw my neurologist about my facial nerve, he questioned me about the neurosurgeons explanation for the 'enhancement' on my 6-month MRI.  What I assumed could be regrowth, could be scar tissue.  He strongly encouraged me to talk to the neurosurgeon and find out for sure. 

I have an appointment on April 12th to see him.  I specifically told his PA when I talked to her that I wanted to see the MRI and I wanted him to explain to me in detail what he was seeing on it.  I should have done this last fall, but didn't. 

Will keep you updated on what I learn...Pat

[leapyrtwins]

Sometimes scar tissue or fat (if you had an abdomenal fat graph during your AN surgery) show up on an MRI.

My doc orders my MRIs with fat suppression, but I'm not sure if all docs do this.

As for removing an AN "entirely" - that is what docs tell you when they believe they removed the tumor completely.  I use the word "believe" because they can't guarantee anything and AN removal is a long, tedious process done through a microscope.  Even one cell inadvertently left behind in AN surgery has the potential - albiet small - of regrowth.

Take heart though, the chances of regrowth after "complete" removal are only 1-2%.  So, while it does happen, chances are good that you aren't experiencing regrowth.

Please keep us posted,

Jan

[CHD63]

Pat .....

Really do not want to add any stress to you or your situation, but here is what happened to me.

I had retrosigmoid approach surgery to remove my 2.6 cm AN three years ago.  My neurosurgeon told me that he believed (see what Jan said) he had removed it completely.  At the six months post-op MRI, there was an area of enhancement (no size given) that the doctor convinced me was most likely scar tissue.  At the one-year MRI, again an area of enhancement (no size given) ..... this time the radiologist stated consistent with residual tumor or scar tissue ..... surgeon still felt it was most likely scar tissue since it had not changed.  At the two-year MRI, read as "stable MRI."  At the three-year MRI, the report stated nothing about scar tissue, calling it recurrent acoustic neuroma measuring 1.3 cm.  My neurosurgeon agreed now that it was a recurring tumor.  With a second opinion, looking at the past three MRIs they felt it had grown 3 mm since the MRI in February, 2010.  (Average growth rate of ANs is 1-2 mm per year).  I am now scheduled for hopefully total removal this time via translab approach, which of course, will take the remainder of my hearing ..... but hopefully getting the BAHA abutment at the same time.

From my research, retrosigmoid approach surgeries have the highest incidence of regrowth and still with that approach there is only a 5 to 9% chance that the remaining piece/cells will begin growing again.  Jan is right that overall with all approaches, there is only a 1 to 2% chance of regrowth.

Try to remain calm until Tuesday and do not be too hard on the doctor or PA.  Sometimes it is extremely difficult to tell scar tissue from residual tumor until (or if) it begins growing.  Most never do.

Many thoughts and prayers.  Clarice

[ddaybrat]

I was more upset at the time I found out about the enhancement than I am now.  Having been through this already, at least, I know what I'd be going through again, if there is regrowth.  I understand that leaving even 1 cell allows for regrowth and I definitely won't be too hard on my neurosurgeon since he didn't do the surgery.  I simply want to see the MRI and see what he is calling an enhancement. 

I'm always forgetting that I have to be my own advocate.  It takes someone else asking me a question or making a suggestion to remind me of that.   

[kenneth_k]

Hi Pat.

I sincerely hope you get your questions answered. If you have someone to bring with you, maybe that is a good idea?
Four ears are better than two (or in our case - one )

Kenneth

[Suu]

Thanks for this update, Pat.

That's a great idea with seeing what the neuros are talking about and it does surely help for us to be our own advocates.

Thoughts will be with you on the 12th (that's tomorrow here in Aus and the next day over there  ).
Cheers,
Suu xxoo

[ddaybrat]

OK...talked to the neurosurgeon.  He doesn't know if the enhancement is scar tissue or new growth.  He did not have my last MRI available to show me, but he did say the enhancement was along the area where the tumor had been removed.  He scheduled my next MRI in September with an appointment with him immediately following it.  The MRI will be done at the same location as his office so he and I can look at it right away and go over it together. 

Thus, I don't really know any more than I did, but feel a bit better after having talked to him.

Thanks everyone for your input and support...Pat

[CHD63]

One thing about it, even if it is regrowth, it should still be slow growing.  September is 5 months away so that should give enough time to determine if it is a stable enhancement of scar tissue or regrowth.  Glad you will have an immediate appointment to get your results right then.  Waiting is horrible.

Try to relax and not think about it (if you can ..... not easy, I know!).  Obviously, if you notice a change in any symptoms, you should contact the doctor.

Not sure if anyone else said this but you know you can send all of your MRI CDs to House Ear Institute for a free consultation as a second opinion, with no obligation, if you are uneasy with what you have been told by your neurosurgeon.  If the answer is the same, then you are good to stay with where you are.  See:  http://www.houseearclinic.com/consultation/acousticneuroma 

Best wishes.  Many thoughts and prayers.

Clarice

[ddaybrat]

Did not know about the free consultation at House Ear Institute...thanks Clarice.