Has Anyone ever had an Acoustic Neuro... - Acoustic Neuroma ...

Acoustic Neuroma Support

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Has Anyone ever had an Acoustic Neuroma return.

helgo4 profile image

Had surgery 16 yrs. ago by recently have had pain on that side of my head, especially behind my left ear and along the scar where they removed it. Just wondering as the Dr. told me that they removed it entirely and I would make medical history if it grew back. Thanks for your feed back.

14 Replies

Hi, I had surgery 9 years ago and a small piece was left behind to preserve my facial nerve! Ive had regular scans since and all has been fine until my last one of which i recieved the results a couple of weeks ago. It would appear that my small piece has started growing again although I cant say that I have noticed any obvious symptoms. I have been in contact with a few people whom this has also happened to, however they all had small pieces of tumour left behind so its hard to say whether its possible for yours to grow back. Do u still have MRI's? I think if you are at all concerned you should see your GP and ask for a referral back to the hospital. Good luck and I hope its good news for you, Linzi

helgo4 profile image
helgo4 in reply to Linzipops

I only had 1 scan and that was only after about a year. I appreciate your taking the time to answer my question. They put a piece of fat in where the tumor was so I will have to go back where I had my surgery done so they can diagnose it properly, I guess. Thanks again for your answer...

I have come across at least one person who had a "2nd" AN grow on the same side as their original AN. Their original AN was totally removed. Hopefully the symptoms you are experiencing are not indicative of another AN but you should get it checked out to be on the safe side.

If possible it would be better to go back to your original treatment team but if you have moved for instance you could be referred to a more local treatment centre.

Good luck

helgo4 profile image
helgo4 in reply to

Thanks for taking the time to respond...I plan to see my GP to set up an MRI but also hope to speak to someone at the hospital that did my surgery... Thanks again.

helgo4 profile image
helgo4 in reply to

I'm scheduled for an MRI on Fri. ,so should have some answers soon...Did this person have any symptoms or was it found on an MRI?

in reply to helgo4

Sorry I can't remember whether they noticed symptoms worsening or whether a regular MRI found it. Good luck with the MRI - let us know how you get on

I did a blog on the 25th anniversary of the removal of three neuromas from my left side. For the last six months I've had throbbing in my right ear when sitting or laying in bed. I pestered my GP and got him to send me for an MRI. Report was no futher neuromas found, so that was a releif, hope you get the same result. No ideas what my throbbibg is though! Keith

helgo4 profile image
helgo4 in reply to keithzx12r

Thanks Keith for your input on the return of the Acoustic Neuroma....I'm going to get my GP to order an MRI as I'm really nervous about this feeling...The discomfort isn't there all the time and it seems to be on the bones in back of my ear and along the incision. I also feel some discomfort in my temple so it is of concern to me....Also thought that maybe as some suggested, it might be adhesions but who knows till I get another MRI....Don't want to go thru another surgery though...So glad you had good results. Gloria

keithzx12r profile image
keithzx12r in reply to helgo4

The MRI did show the nerves on the left side of my skull were all jumbled up - nobody seems to have an opinion whether this has any side effects or not, being as I have zero hearing on the left side maybe thats why I get the throbbing on the right - however I didn't have it for the first 25 years post op! Keith

helgo4 profile image
helgo4 in reply to keithzx12r

Thanks again for your answer, I don't have the pain all the time but sometimes it feels just like when after I had my surgery and the feeling started to return in all areas...even my ear on the left side hurts, not inside but around the outside on the ear itself. Could be nerves I guess, but guess I better contact my ENT Dr. about this....Thanks again.

MonicaL83 profile image
MonicaL83 in reply to helgo4

Hi! I am currently experiencing all of these things that you are talking about. Pain around the scar, pain on outside of ear. What did you find out when you went back to the Dr.?


i had my first neuroma removed on my left side in 2007 and have regular mri's every year .had the right side done in 2011 and again have regular mri only to find out that the left side is now just about the same size it was originally in 2007 of 39mm which unfortunatly means they can regrow ,sorry to sound so depressing

Have you had an MRI scan to check things out?

I didn't notice that this thread - a link to it appeared on the side of my browser's page - was so old. Please ignore my pointless response.

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