Will a relapse happen for AN after microsurgery with total excision?

[shanne]

Hi All,

I had a 3cm x 2.5cm AN in 2005, and had gone through microsurgery for removal of the AN.
Its been 4 years till date, and i still suffer from facial nerve pain.
I even get facial cramps at times, and it can get so severe that my mouth would be slanted to one side.

I have been doing yearly MRI scans for the past 3 years, and im due for the 4th MRI tomorrow.
For my past scans, it showed that they found a 0.6cmx 0.4cm "object". I certainly hope this is not a regrowth..
According to my doctor, he said that this could be a surgery scar, and i should monitor this closely for the next few years.

Just wondering if a relapse/regrowth will ever happen to an AN patient?

Pls share your views.

Thanks

Rgds,
Shanne

[Brendalu]

Shane,

I would guess it is  scar tissue, but anything can happen.  I think others have had similar results.  I was told I would only have to have MRI's for a couple of years following my surgery.  I have had two a year since and my doctors are not giving me an end date for them.  I am an NF2, but my next one is specifically looking at the removal site of the original !  I wish you luck and will keep you in my positive thoughts and prayers.

Brenda

[TP]

Shanne:

I have a small little bit of tumor left on my bone. This was necessary to leave due to the location of the tumor. I had my surgery in 2006, MRIs in 2006, 2007 and 2008. This year is my first year I don't have to have an MRI but will need to have one next year. If it does start to grow these will more than likely grow very slow and you would then be under a wait and watch I would assume. 

I have daily facial cramps and there are times that my face is in pain. Sometimes the cramps are severe and I get cramps in my neck. When that occurs I know I need to stop talking and relax or drink a beer or glass of wine which it does help. I find that when I share this with folks they cannot relate at all because they don't see anything that looks strange. This is the one area that I wish Dr's would give more input. I haven't seen too much empathy for what we go thru in this area of our healing. Hang in there!! I can relate. 

[leapyrtwins]

Shanne -

I think there's a very good possibility that what showed up on your MRI is scar tissue, but I'm no doctor and you'll have to wait for yours to know for sure.

AN's can recur after AN surgery, but the odds are very small.  My docs told me they removed my AN completely - and I'm sure they did - however, even one cell left behind can grow again.  Bottomline, I was given a 1-2% chance of recurrence - and that's about as good as it gets.

Good luck with your results.  Please keep us posted.

Jan

[epodjn]

I don't have any input for your MRI, but my guess would be scar tissue. What I do know about is those facial cramps!!! OUCH! They hurt and my doctor just looks at me like I'm crazy. What has really helped me is neuromuscular retraining. They teach you massage and exercises to relax the muscles and I haven't had any really painful cramping or spasms in the last two months!!!! It really does help!. If you need help finding a therapist in your area let me know. There aren't many of them.
Julie

[CHD63]

Shanne .....

I am 19 months out from my retrosigmoid approach microsurgery for removal of my 2+cm AN.  My doctor also told me he was able to completely remove the tumor.  On my six month MRI and one year MRI, both showed an area of enhancement that the radiologist said could be scar tissue or regrowth.  My doctor feels it is most likely scar tissue and was completely comfortable with waiting a year.  He also said that since there was very little difference between the six month and one year scans, it would be safe to wait another year.  I will have another MRI in February, 2010.  No end date has been given for MRIs for me yet.

Many of us in this situation are understandably concerned about regrowth, but as Jan said it is only a 1-2% chance and I have decided I am not going to be in that category.   

Let us know how you are doing.

Clarice

[Jim Scott]

Shanne ~

Yes, acoustic neuromas can re-grow.  This is the harsh reality.  As Jan correctly stated, the incidence of a surgically-removed AN re-growing is near-infinitesimal (1-2%) but it can happen.

Often, radiation can be used to halt any further tumor growth.  Your facial nerve pain is unfortunate but does not likely indicate any tumor growth. Scar tissue is commonly seen on post-op MRI scans and doctors are well aware of this, which is probably why your doctor was not unduly alarmed but suggested that this 'object' needed to be 'watched' (via MRI scans).  I would follow his advice.   

Jim

[Patti UT]

Shanne,
  I would just keep the pressure on the docs to keep a close eye on it. Unf, in the world of An's anything can happen,  I landed in the 1-2% 

patti ut

[wendysig]

Shanne

Welcome to our group.  I'm sorry to hear you are still having these  problems.  As everyone else has said -- while it is most likely scar tissue, it is essential that you keep an eye on.  The possibility of  regrowth after complete surgical removal is very small (1-2% as stated by Jan) it does exist.  Since you are having problems with your facial nerve, I would suggest seeing the surgeon who removed your AN.   Perhaps there is someting he/she can do to help.

Keep us posted.

Best wishes,
Wendy

[robynabc]

Eric,  had same thing come up and they said it may also be scar tissue.  It was totally removed as far as we know.  And last two MRI's were okay.  Didn't grow.  If there is another growth this time it will be caught much earlier so the chance of microsurgery will be much less.  I know how hard it is to have this on your mind.  I felt the same way.  And since my son had this when he was so much younger his chance of regrowth is greater.  For that reason the surgeon wanted to get all of it.   

Robyn

[shanne]

Dear All,

Thank you so much for sharing your views & the encouragements you've given me.
I've done my MRI few days ago, and am glad to know that the results shows the "object" found in last year's scan
did not show any change in size. Very likely, it should be a scar tissue.
Whatever it is, as long as it did not grow, it would be a blessing to me.

As for my facial nerve pain, i was given neurontin & neuromethyn by my doctor.
I was told that the cramps were due to high stress level in me lately.
Looks like there isnt any cure for this, except only medication to minimize the pain felt..

There is no neuromuscular retraining therapy here in Singapore, or perhaps, there might be, which i was not aware of.
I bet this will help alot & will be very beneficial to us.
I believe only people who went through the same pain, can relate on this.
Thanks for letting me know, im not all alone.

[CHD63]

Cheri .....

I was curious though as to  why the middle fossa the first time and the retro this time?  Do they not like to take the same approach for fear of running into scar tissue, or something like that?

At the symposium in Chicago this summer, several doctors commented that if it was necessary to operate again, they almost always went in a different approach for just the reason you said ..... to avoid the scar tissue.  Also, sometimes a tiny bit of tumor was left the first time and another approach gives a better vantage point for the fragment that begins to grow again (coming in from the other side of it, as it were).  Much depends on which part of the vestibular nerve the tumor started ..... mostly inside the internal auditory canal vs. closer to the brainstem.

Clarice

[leapyrtwins]

Shanne -

glad to hear there is no growth.  Very positive news!

Thanks for letting us know.

Jan