Recurring AN?

[enelson]

Hello all,
I am new here also!  I hope you don't mind, but I would like to share my story and maybe get some help to my questions. 
I was diagnosed in October of 2004, I was only 24 at the time.  I had surgery December 2004 at Methodist Hospital in Indianapolis, Indiana.  Dr. Hall and Dr Copeland were my surgeons.  It has all been a rough for me, I am so glad to hear it is not that bad for everyone.  Post op, I was dizzy and in a lot of pain they could not give me enough morphine.  I have lost all hearing on my AN side, but thank God there was no other lasting effects.  I was down for about 3 mos, in physical therapy for 2 of those months with headaches and neck pain that I have now found out after a year and several methods of therapy, procedures, and other surgeries, was caused my damage done to my cervical disc during the operation.  I have been on Vicodin since then for the daily recurring migrains and neck pain.  Obviously, I can't live on meds forever as I am only 26.  I recently had radiofrequency done on my right side, AN side.  This helped tremendously, (I still need to have the left side done) but I am told my nerves will regrow and the pain will come back in 9-14 mos :'(  What then?

Just when I thought I was through, my symptoms came back and afer another MRI have found the AN has regrown. 
 I noticed several of you mentioned yours returning.  I would like to hear more about what was done and your results.  I meet with my surgeon tomorrow to find out the size and what steps we will be taking.  But, I would appreciate any suggestions.
Thanks,
enelson

[Larry]

Enelson

I had my an removed 3 years ago via middle fossa approach. 6 months ago it returned. In the last 6 months it hadn't grown. It is still small enough to watch and wait which is what I am doing at the moment. I don't have any major debilitating symptoms other than major headaches (from op 3 years ago). After reading everyone's posts on this site, when and if I need to do something about my re-growth it will definitley be via radiation treatment of some sort (GK, CK or maybe something else that might come along).
I take Neurontin for my headaches and it does help a little. My headaches were caused by the cutting of muscle and scalp and obviously some nerve damage otherwise the neurontin wouldn't work.

Caution though, everyone's approach and situation is different and you should get other opinions as to the treatment options.


Larry

[jcinma]

Hi Enelson,
I had retrosigoid surgery for a 1 cm in 1996, lost my hearing and had terrible headaches for many years.  In 2004 found a 3cm recurrence.  There was some brainstem compression so I opted to have it debulked in Feb. 2005 and followed up with FSR on what remained.  My main objective was facial nerve preservation.  The good news is that my facial nerve was preserved, but the best part was that I have had absoutely no pain post-op and not a singe headache and it was retrosigmoid the second time also.  I just had an MRI (7 months post FSR) and the tumor has not changed, I follow up with another in one year. When I was diagnosed the second time I was so very frightened because I didn't want to repeat what I had gone  through in 1996 but I really didn't have a choice, but I really did have a great outcome.
Jane

[Rc Moser]

This is only "MY Opinion" based on what I was told and experience.  I had a long talk with the Neurosurgeon and the Otolarynbology Neurotology Dr. before the operation and I asked this question, if I go through this will it grow back. Their answer was, If we get it all and what it grows on 99.999% of the time it won't. They said, if they leave any of the tumor and  what it grows on good change  it will. After my own research I really didn't have a choice anyway.  IMO you don't know what goes on when their in your head. But, I was satified with that answer.  I tend to agree with them (but I really don't know?) if you take everything and what it grows on how can it come back? My only fear is the gene's are still their and start growing in my good ear.

IMO if you have large AN it is a time consuming operation, they said it sticks to everything like a banaid and has to be slowly pealed off through a hole the size of a quarter. IMO their is alot of room for error and will power to be busted.  They also told me expect to be under 10 -14 hours. I was under over 17. I asked both the Neurosurgeon and the Neurotologly Dr. DID YOU GET IT ALL. the said yes. I also had two teams tag teaming me. I can see why One Dr. doing mricosurgery through a small hole can be, well I can't imagaine! can you.

 IMO this is a Painful operation and anybody that get's through this with minimum pain is REAL lucky IMO. Of the 11 or 12 nerves I think they mess with 10 of them on that side of the head! They told me the facial nerve gets stretched with a large tumor and some times it takes years to get even 50% of it back. I was also told I had a 30% change it would be facial nerve weakness for ever. I won't have an operation again either it will have to be zapped! if it come back. But. I'm older and have had a good life IMO.

[jcinma]

Rc-
My post op report after my first surgery stated that the tumor was completely removed-go figure!  IMO most people that experience reccurrences are shocked as I was because the sugeons thought they had removed the tumor in it's entirety. And yes I was told there is a 1% chance of reccurrence just didn't think I would be part of that special group.
Jane

[jenifyer]

Hi,

I had my first AN removed via middle fossa in 2000 when i was 28.  It was a difficult time and recovery took a while.  i had right facial paralysis as a result and my hearing which they were trying to save, wasn't.  To make a long story short..... I found out it had regrown last year.  I was scared and didn't want to go through another surgery so i looked into radiosurgery.  As it turns out i decided to go with microsurgery.  This time around i was in a different city and had different doctors.  It was a completely different experience....much less traumatic, and the outcome actually was better than before, if that's possible.

It's a scary thought to have to go through it again, but you will get through it.

jennifer

[Rc Moser]

Jcinma, you are very special. 1 in 100000 change of getting an AN an 1% chance of it coming back. WOW. I would play the lottery once in  awhile if I were you. you've get to have a way better chance of  winning than the rest us. I guess it the Missuourian comes out in me alot of the time, you just have to"  show me" what casuses it to start growing off something else if the source is gone. I guess by people reporting regrowth there is more happening that % of recurrences shows or Doctors aren't getting all of it. Sorry I just don't beleive all these recurrances rates are quenidental. Again, do you really know if it was completrly removed? My MRI showed A empty hole, but does it show small tissue ?  I Can' tell???

[Kathleen_Mc]

enelson: I had my A.N. removed when I was 23, lost my hearing and facial functioning and balance. After 8-9 years and several "plastic" surgeries I found out it had regrown. My orginal surgeon said he is unsure if the tumor just regrew and I am one of those extra-special A.N. er's or if he missed a cell or two during the orginal surgery , it doesn't really matter now does it. I went with the observation route until my second born was 3 1/2 and then although the tumor was not needing to be treated I had surgery to remove it, I didn't deal well with knowing that thing was growing inside my head, if it was on my arm it would have been something I could have dealt with just leaving forever if there was never a medical reason to remove it. I was offered gamma knife but given that the hearing etc. was already gone and my point was to be "done with it" I opted to have surgery again. I too had a great deal of pain the first time around and I found this time a breeze. I am sorry to hear you have to go through this a second time, I truely believe one brain tumor in a life time is more than enough for anybody. Take care, Kathleen

[Kathyaquino]

My AN didn't exactly recur since the doctor never removed it in the first surgery.  After reading your posts about your original surgeries lasting so long, I get a little upset because I was only in surgery for 3 hrs.  In reading the report of my surgery my surgeon kept mentioning what a sticky difficult tumor it was & yet it only took him 3 hrs. to supposedly remove it.  After 2 days I was told to go home & not to have an Mri for 3 years.  I was left with facial paralysis, horrible balance & I lost my hearing even though the doctor supposedly saved that, too.  My doctor kept telling me that he had gotten all of the tumor, but when I found out that so many of the things he had previously told me may not have not been quite true, I had an MRI about 6 mos after the surgery.  I still had about a 6mm tumor left.  It's a residual tumor & not a regrowth.  I chose the wait & see (or is it wait & worry) approach.  It is now 1.5 cm & I am going to have it removed at HEI.  I know I sound bitter & I am.  I thought I could never go through this surgery again, but I want this tumor out.  I am praying that this time the doctors can get it out with no more damage to my facial nerve & that this tinniutus doesn't get any worse.  Also, my balance has just finally gotten a little better 6 1/2 yrs. post op so I'm hoping that doesn't get worse again.

My worst fear in all of this is that the doctors can't get all the tumor & I will just keep going through this again & again.  I know it's crazy & not positive thinking, but I'm scared & I'm tired.

About the occurrence of AN's.  I had read that the chances of having one were 1 in 100,000, yet when I saw a surgeon at Stanford who wanted to use the cyberknife on my tumor, he told me that about 1 in 500 people have acoustic neuromas.  That's quite a difference & I wonder how there could be such a huge difference in opinions.

Kathy

[Larry]

Kathy,

My thoughts are with you. Sounds a similar story to mine but my facial nerve was not damaged. We are here for you when you go through the process again. From the sound of it, having it done at House is a good move.


Larry

[SKT]

Kathy

I don't blame  you one bit for being angry.  I would be furious.  Who did your surgery?  I have never heard of it taking 3 hours!!  I thought it took at least that long for the incision.  I know you're tired, and it feels so unfair, but I have every faith that you are now in good hands and you will come out of the surgery well.

Best of luck, my thoughts will be with you.

As to the discrepancy in those statistics - 1 in 500 just sounds wrong.....  After getting an AN and getting on to these sites, you sometimes lose sight of the fact that this still really is a very rare tumour.  I have heard from many of the neurosurgeons and ENT surgeons that they believe the 1 in 100000 stat is now wrong, but generally, from what I've been told, the statistic may be closer to something like 1 in 50,000.

Best of luck. xxx

[Boppie]

I agree SKT, 1 in 500 would be the same as 200 ANs in 100,000 people.  Calculate for your state's population figures and see if the hospitals could take care of them.

[cookiesecond]

Kathy,
I am sorry you have had such a rough time. You will be in my thoughts and prayers.I pray for wisdom for the doctors, peace for you and a complete recovery,
Keep us posted,
Lynn

[Kathyaquino]

Thank you all for your kind replies.  After putting off this 2nd. surgery for almost 7 years now I am just looking forward to getting it over with & praying for the best outcome.  I really do appreciate all your thoughts & prayers.

Kathy

[jenifyer]

I know how you feel....
I wound up with no hearing, and very bad facial palsy after the 'removal' of my first AN.  The second time around was a different story.  my doctor told me (and he is VERY experienced and well known, also having been from the HEI but now is in Tampa)
that my tumor was probably the most difficult tumor he has ever encountered in his career!!!  Probably because i had previous surgery..who knows.  Anyway, the experience i had this time was much less traumatic.  It is a horrible thought to have to go through it again, but things can be much different for you this time!  stay hopeful....

jennifer