My AN has returned

[vicki1967]

Has anyone experienced a return of their AN after surgery? I had my surgery in '08 and was told yesterday, after an MRI, that I have another that is 2mx1m. I've been quite depressed, as it took me 2 full years to recover from the first surgery.

[hendi51]

My husband has his tumor removed in 2011 and was told today an MRI showed another mass. We have appointment with neuro the 28th of this month.

[Kkento]

I was operated on in November of 2004, and my AN is also growing back, it is approximately 4mm and my ENT indicated that even though it is 10 years, he thinks it is too soon for it to be growing back. I had a small AN (approx 8mm) but was told that my symptoms were very large for such a small tumor. It was removed using the subocciptal approach, and I lost hearing in my right ear, tinnitus got worse and my balance which the doctors thought would come back to at least 90%+ actually never did. So now they may want to use the Gammna knife, I was wondering if anyone can tell me if the knife was successful, and are there any side effects. I was told back in 2004 that there was not enough long term data to take the chance of using the Gamma knife, it was unclear at the time what the long term effects would be. I would like to thank you in advance for any help that you can give me.
Sincerely

[elsie]

Hi, all,

My AN has returned - after 25 years - which my doctor initially said was impossible.  Go figure - 10 years too soon - 25 years, too long?  I have one forming at 3.5mm and another one at 9mm.  A doctor at House said that the odds of return after this long are so infinitesimally small that they are less than .0001 in a million.  How special!

All doctors have said that I should do watch and wait and then Cyber Knife if necessary.  Don't know if this is due to my age now (61) or something else.  Surgery would be my preference as I want it out, but the risks may be too high. 

It really threw me for a loop initially when I got the firm diagnosis in January, but learning to live with it now.  If you work on it and get involved with as many things as possible, the anxiety does recede.

[Kathleen_Mc]

my regrowth was found approx. 7 years post op, it continued to grow and I had another surgery to remove it......it happens!

[lil_lyd]

Hello everyone! Just wondering if anyone had any symptoms or how was the regrowth diagnosed?

[CHD63]

My AN regrew to 1.3 cm three years after retrosigmoid surgical removal (2.6 cm at removal).  Had it removed a second time via translabyrinthine approach.  Now three years later, still monitoring a teensy spot still showing on the MRIs.

I never had new symptoms, although my speech discrimination score on the follow-up audiograms was going down.  The regrowth was discovered on regular follow-up MRIs.

Clarice

[Kathleen_Mc]

I did not have symptoms of the regrowth, I had already lost all there was to loose (hearing, balance, facial nerve etc.) the first time around and I got it removed before it caused any other symptoms

[KeepSmiling]

After reading your posts, I just want to send all of you a cyber hug.

[Suzy]

I also had retrosigmoid surgery Aug 2008. I was just diagnosed with regrowth 1.3 cm. One doctor says to do cyberknife and one doctor says to do translab. I decided to wait six months and get another mri. If it continues to grow then I will make a decision. My current concern is that both neurosurgoens say headaches are not caused by AN's. I started having bad headaches again 4 months ago and started getting more balance issues. I knew the tumor was back before I got the results. I don't believe headaches are not a result of this. I also believe more than 1out of 1million get a reoccurance.
I am sorry you also have a reoccurance. Please let me know what you decide to do.
Take care!
. 

[Kathleen_Mc]

I don't know about Doctor's opinion's that AN's do not cause headaches....so many of us had them pre-op.
I can say the headaches I had pre-op were horrible and since surgery I haven't had the same type of headaches again (nor as bad)
Just my two cents on that topic

[Ned]

Regrowth played a major role in my decision to avoid surgery. Has anyone had regrowth post radiation? I am curious, why would choose additional surgery with regrowth when you might have regrowth again? I would talk with experienced radiation oncologist regarding this decision. When I was making my decision the surgeons all said it was unusual to have regrowth but couldn't convince me.