Regrowth

[crazyd925]

Last summer, I was so excited that I had passed the 10 year mark of my acoustic neuroma surgery (golf ball size) that I jokingly told my family that we should have a party to celebrate! Then, about a month ago I had some dizziness issues and earaches that I asked my doctor about. I honestly thought I had an ear infection - although I never get them. Denial, I guess. Well, he wanted an MRI because of my history. My family talked me into it - I almost cancelled several times. They had to do a follow-up to focus on the left ear because the first was of the entire head and not easy to read other than there was a tumor there. When I got the results, I was devastated. There wasn't one tumor to worry about but two. One is in the ear canal and the other nearby. I'm still waiting for the appt. with the ENT but, right now, I'm really curious about how many people have regrowths.

[jazzfunkanne]

gawd what bad luck, this is always my worse fear, i had a over 4.5cm AN removed over 2 years ago and its always at the back of my mind, did they say why this would happen, is it the same side, i have never heard of two AN on the one side, or is it nf2s? please keep us posted.

[Syl]

Crazyd:

I'm so sorry you have to go through this again. I'm due for my 1-yr MRI in 3 months. I tiny bit of my tumor was left behind, and I fear that it didn't die. If I should have a regrowth, I think I would have it zapped. I would hate to go through head surgery again. I'll send happy thoughts your way.

Syl 

[crazyd925]

They're on the same side and from what I've read, that's good. If it moves to the other side, it becomes more likely for my children to get them. When they did my surgery on my first one (3.8 cm - golf ball size) they said there was a microscopic speck left on my facial nerve. These are in the ear canal so right now, I'm assuming there was more left in the inner ear that they missed. I'm still waiting for the appt with the specialist to get more answers.

[Jim Scott]

Crazyd925 ~

I have to assume you stopped having MRI scans a few years after your surgery, which is understandable, but, in your case, unfortunate.  I'm sorry to learn of your tumor regrowth a decade post-op, but this is a risk inherent in AN removal surgery, although usually a very small risk.  Still, it happens.  This is why I was amenable to my neurosurgeons advice that he partially resection my 4.5 cm AN, cutting off it's blood supply in the process, then try to kill the remaining tumor cells with a series of (26) FSR treatments.  My last MRI showed some slight tumor shrinkage and, more important, necrosis (cell death) of the remaining AN.  Although this procedure was utilized primarily to help avoid facial nerve damage - and was successful - I believe the two-pronged approach, although a bit of a slog for the patient, offers the best chance for killing the tumor and avoiding re-growth, although it seems no approach can be guaranteed, even after ten years. I just hope and will pray that this re-growth (with an additional tumor) can be successfully addressed and ultimately resolved.

Jim

[wendysig]

Sorry to hear you are going through this again.  A few people on the forum have had regrowths, Hrissi had her third AN surgery a few months ago,  jerseygirl had a regrowth after 20 years, I thiink and JWH recently had surgery for regrowth after only a few months I think.  There were at least two other forumites who've had surgery for regrowths in the past year, but I'm having an AN moment and can't remember their names.   One had failed Cyberkinife and had surgery last year and the other woman also had regrowth after 20 years and had surgery again last June or July.  Although regrowth is unusual, there seem to have been quite a few here who have had them in the past year.   Keep us posted on how things look for you.

Wendy

[leapyrtwins]

Crazyd -

sorry to hear your news.

As Wendy mentioned we have had some forumites with regrowth, but you all are definitely unique.  Statistically ANs that are surgically removed only have a 1-2% chance of regrowth.

Your post is a good testament to the importance of having an annual MRI - even as many as 10 years post op.

Please let us know what your doc says.

Jan

[mimoore]

I am so sad for you... it is bad enough when we have to endure this once. Find comfort in the fact that you are not alone. 

I too may need to deal with regrowth, with my surgery so fresh in my mind I shutter. 

We are strong, we are surviors.
Hugs Michelle 

[msmaggie]

I am so sorry for your diagnosis!  You are in our prayers for the peace and strength you will need as you face medical decisions. Please keep us on the loop as you make your way through this.

Hugs to you and yours...
Priscilla

[sgerrard]

One had failed Cyberkinife and had surgery last year and the other woman also had regrowth after 20 years and had surgery again last June or July.

Kathleen (Kathleen5306), and Carrie (CMP).

Also of note, Camille (cbp) just had successful CK radiation recently, for two little ANs in one ear. I guess they come as twins sometimes.

Regrowth isn't very common, but just often enough to keep us all on our toes. It does seem to me that the second treatment works to get rid of it for good, and that second surgeries are somehow easier on the patient.

Best wishes.

Steve

[chelsmom]

Hello Crazyd925

I'm so sorry to hear that you are dealing with regrowth after such a long time.  My daughter, Chelsea-20 years old, is also dealing with regrowth.  In fact we meet with her Head and Neck surgeon tomorrow at UCLA to start the planning of another surgery.  Her tumor was very large and because of the location and structure of the tumor they were only able to remove 70% -2 1/2 years ago.  She then went through the 28 FRS treatments. She also has a shunt so when she started having some problems around the holidays we figured that her shunt needed an adjustment, which it did, but the MRI also revealed the regrowth.  We were and still are stunned.  Her surgeons basically said that the younger patients with large tumors seem to have a higher chance for regrowth.  Personally, I think that anyone that has had an AN should have scans yearly or bi-yearly for life.  Chelsea had MRI's every 3 months for the first year and a half then went to every 6 months.  Her radiation neurosurgeon saw her in Aug. along with an MRI and said he felt the tumor was stable and he'd see her in a year along with another MRI.  She didn't even make it to 6 months before this most recent one pulled the rug out from under all of us.

Please keep us informed and know I'm keeping you in our thoughts.

Michelle

 

[jazzfunkanne]

hi jim, i too had a over 4.5 AN removed, they left a tiny bit behind, they never ever mention anything about cutting off the blood supply, or further treatment, i will asked these question at my next consultantion.

[onceagain]

crazyd
I had regrowth after 12 years.  It does come as quite a shock.  I had surgery to reduce size followed by 1 dose srs.  I go for my 6 month follow up mri in May.  I was never told that I was supposed to have followup mri's after 1st surgery.  even if follow up mri's show shrinkage or necrosis I will never believe that it is gone and can't come back.
To Mimoore: I had my second surgery on June 4 also

Thom(Onceagain)

[mimoore]

Hi Thom,
Wow second surgery, how are you doing? Did you choose the same approach? Did they leave some tumor behind the first time? Did you suffer any problems in either surgery? Hope you are doing well. If you had regrowth again (here's hoping you do not) would you have surgery again?
I always say knowledge is power.
Michelle

[Jwh]

Hi,

I just had a second surgery for a regrowth 7 weeks ago.  My first one was removed in 2001 by Retro. approach.  I recently had the Translab so far so good.  We'll keep our fingers and toes crossed that everything works out great this time!  Keep your spirits up.  You will get through this.

Jen