Regrowth :'(

[Melissa778]

Looking to touch base with anyone who has had regrowth.

I had translab surgery in 2008 and not all of my tumor was removed as some of it was wrapped around my facial nerve.  5 months later I had a low dose GK done to zap the remainder.

Every year I religiously make sure I have my MRI and follow up with my doc.  after 4 years, this years scans showed some new growth, significant growth.

I have had some mild symptoms over the last year and seem to be in a constant battle with trigeminal nerve issues also.  I would not wish trigeminal pain on my worst enemy.

To add insult to injury, my specialist who is well known in the AN community and very well respected, is on a personal medical leave.  So not only am I dealing with what my options are for this regrowth; I have to find a new doctor who I trust to help me make this decision.

I did see a new doc in my doc's practice who I am comfortable with and so far I like him.  He stated yesterday that my case is "rare".  I'm wondering if there is anyone else out there who has had regrowth and what path you chose to address the regrowth.  Any feedback appreciated  

Melissa

[Kathleen_Mc]

I also had a regrowth. In 1990 I had surgery and was told "we think we got it all", I did not have a follow up MRI until 1997, and at that time thwy told me what they were seeing was scar tissue, in 1999 the mri showed growth (hence not scar tissue), I remained in "watch and wait" for a few years then had the regrowth removed (surgery) by my choice,,,,,second time around much easier than the first.
I did not yet have to have the regrowth removed but chose to do so at that time, before it had the chance to get too big. I was offered gamma knife but declined (I had nothing left to save having lost hearing,balance and facial nerve the first time around).
I myself found being "watch and wait" very stressful as the orginal tumor was very large ,and the doctor's said they didn't understand how it was that it was so big for someone so young (based on what they know about usual growth rates of AN's it shouldn't have been so big even if I wa born with it), hence I was worried it would all of a sudden take a great growth spurt for some reason.
I do not regret having the regrowth taken care of when I did nor how I did, it was a great relief it know it was gone.
"WHAT" to do at this point is a personal choice, one only you can make.
Kathleen

[leapyrtwins]

Melissa -

sorry to hear about the regrowth.

Clarice had regrowth.  You might want to PM her if she doesn't respond to your post.

Best,

Jan

[mindyandy]

Melissa
Sorry to hear the potential bad news. I had trigeminal pain before surgery. I would not wish that on my worst enemy either. Keep us posted on what your doctor says & what decisions you make. Send your scans to House for a free consultation.  If you have questions don't hesitate to ask.
Mindy

[CHD63]

Hi Melissa .....

So sorry you are having to deal with a regrowth issue ..... just not fair!

My history includes surgery for trigeminal neuralgia so I know well the horrible trigeminal pain and would not wish it on my worst enemy.  My trigeminal neuralgia was on the right side.  My AN was on the left so not connected to each other.

My first AN surgery was in February, 2008, via retrosigmoid aproach ..... going for hearing preservation.  The neurosurgeon assured me he had totally removed the tumor.  My first MRI at 5 months post-op showed "surgical changes," (no measurement given) which the neurosurgeon assured me was most likely scar tissue.  Fast forward to February, 2011 and the MRI suddenly showed a 3 mm growth from the previous year and now described as a 1.3 cm recurrent tumor.

I sent my latest audiogram and all MRIs since the 2008 surgery to Dr. Friedman at House Ear Clinic.  It was the best decision I have ever made.  In May, 2011 I had my second AN surgery via translab at House by Drs. Friedman & Schwartz.  Like Marianna, it was much easier than the first surgery.  I had a tiny bit of facial weakness for a few weeks post-op, but it cleared completely.  Other than now being SSD (but helped wonderfully with the Oticon Medical Ponto Pro), I have had an excellent recovery with no issues.  Best news is the first MRI done post second surgery showed absolutely no evidence of any scar tissue/surgical changes nor any tumor.  I will be forever grateful to the skills of my House doctors.

If you'd like to talk, send me a PM and I will be glad to call you or give you my private email and/or phone number.

Many thoughts and prayers.

Clarice

[Melissa778]

Thanks all for the kind words and support.  I'm hoping my next steps are easier than the first time around.  My doctors and I are apprehensive about a surgical approach because the tumor is wrapped around my facial nerve.  They do not want to damage my facial nerve at my age of 34 years young.  I'm impatiently waiting to hear from my team of docs to see what my next steps/options are. 

From what I'm told, I am a bit of a "unicorn"; unique to the AN world with a regrowth like this.  I'm told that not many people see regrowth.  I don't know the specific #'s on that, which is why I initially posted, to see how many there were out there like me.

And I continue to await news from my insurance company to see if I am approved to get another opinion should I want one.   And yes, I think I do.  I like my doctors; but if this is such a rare occurance, I'd like multiple opinions on how this should be handled.

I thank you all for your support.

Melissa

[CHD63]

Melissa .....

I do not remember where you had your surgery nor your GK, nor who your doctors are at the moment.  However, I would strongly urge you to send your latest MRI and a description of your history to Dr. Friedman at HEI for a free second opinion.  He and Dr. Schwartz are tops in the field of AN removals and see all of the weird cases (like mine and yours).  See:  http://www.houseearclinic.com/consultation/acousticneuroma   Send it specifically to the attention of Dr. Rick Friedman and he will get back with you within 24 hours of the receipt of your materials.

Thoughts and prayers.

Clarice

[It is what it is]

I join the others in sending you support through this list and I second Clarice's suggestion to send your information to HEI.  They will consult with you for free.  They were not able to remove all of my tumor either due to involvement on my facial nerve.  So, there are those of us on the list who will also be at risk for regrowth.  HEI is doing a study about the statistics of regrowth that should be completed next year. My thoughts are with you. 

Karen

[LeAnn]

I was reading your post It was like I was reading my on story. I had Surgery in Dec. 07 got all but 5%. in Dec.2010  I had MRI and there was regrowth, So I had GK Jan, 2011.  went yesterday and had an MRI. I was told I have trigeminal neuralgia ( you are right worse pain ever) I was also told that I had regrowth  I just can not believe this I don't know what to do. I am also waiting for the team of doctors  to talk to each other. 

[tenai98]

This is my fear as well.  My last 3 MRIs shows growth after surgical removal (only a small piece was removed to save facial nerve) in 2009.  Doctors have assured me that the tumor is NOT growing that its just the way the radiologists read it.  I have been having trigeminal irritation but MRI shows nothing.  The irritation is not really bad but more so annoying.  Compared to some of new, I have NOTHING to complain about.  Another MRI in the new year and I have decided that if it shows more growth, I am going for cyberknife. 
My heart goes out to you.  To all of us
Joann

[doglvr727]

Hi Melissa, I too have had a regrowth. I had surgery in 2010 to remove the tumor which was the size of a plum they say. They too couldn't remove all of it because of where it was located and wanted to leave a portion of my facial nerve in tact.. This October I went for  my annual MRI and that was when they told me that the portion they left had grown.. So my neurosurgeon who I love gave me my options and one of them was to watch and wait. I didn't want to live with the constant " I wonder how big it is now" thing so I took his advice and made an appointment to talk about cyberknife. I found out on Wednesday that I go for my radiation on Dec.5th..My dr. assured me that this is the way to go since they can pinpoint better than the gamma knife and there should be minimal side effects.
I don't know where you live if the dr. i went to is near you. I went to Johns Hopkins and see Dr. Tamargo.
If you have any questions please let me know. Hang in there !!

[kwalker]

I had initial surgery in 07...subsequent MRI's showed the little surgeon left behind had dissolved is best description...2 years later after follow up MRI showed new regrowth, had cyberknife in 2010 and 1st year MRI showed no change but this one last month it had grown aprox 4mm...so my doc is doing some consulting as to what best course of action, whether another surgery or cyberknife again. i'm concerned that the facial nerve while damaged now will be totally gone if they do surgery and i don't want that. i'm on a holding pattern until the doc gets some feedback globally about re treating with cyberknife.
kelly
ps..good luck, i understand where u are coming from, my tumor originally was about the size of a golf ball and pressing on brainstem as well. had lots of issues since.

[tenai98]

kwalker;
My doctor told me that if I went the cyberknife route, and that if the tumor wasnt killed with first treatment, then a second treatment of cyberknife is ok.  given that I have already had the surgery and lost my hearing and balance nerve, he will go with the highest dose of grays.

[Kathleen_Mc]

From what I'm told, I am a bit of a "unicorn"; unique to the AN world with a regrowth like this. 

"Unicorn" eh? ...the Irish in me likes that!lol