After 12 years, it's back

[paula jean]

 
Hello all,
I had a 1cm AN removed at the House Ear Clinic (HEC) in 1999. Two years ago I decided to give in and go get hearing aids. I can hear people talking, I have a hard time understanding what is said unless the person speaks directly to me. So, the audiologist insisted that I get an MRI, based on my history. So, I had the MRI in 2009 and it showed a 3mm "residual" something. Dr. Brackman at the HEC was not sure if it was scar tissue, fat from my head, or a tumor.
He advised a follow up in a year. So, I did a follow up this year and now I'm told that this is at 6mm. I sent the film and report to the House Ear Clinic for review.

Questions: After AN surgery, can someone still have gamma knife radiation or more surgery, or is there too much scar tissue involved? I'm waiting to hear the options, but I suspect there are only a few.
Thanks for listening...no one should have two brain tumors in their life time, and I've gone from being upset to being just plain mad at how unfair this is. Now when things go bad I can't say, well, it's not as if I have a brain tumor. 

[anissa]

I'm sorry to hear about the re-growth.    I'm not of much help in that department but there are a few around here that I hope will chime in.  When do you hear back from House?

[paula jean]

Hi,
The film and report went via snail mail, and I'm traveling for work the next two weeks. I hope to hear something in February. Thanks for the reply!

[onceagain]

I had an An return 12 yrs after surgery.  Was told at that time that they got it all.  I had surgery and Radiation in 2008.  I'm coming up on my 18 month MRI.  If they do an MRI on the day that I die and they can say that there is no growth maybe then I'll believe that they got it all.
Onceagain

[Jackie]

I am so sorry to hear of a re-growth, as when a procedure is done and you go through all the after effects, it's just not right that you should be facing another procedure! You have a right to be mad! go ahead and vent, then do what is necessary to stop the growth!!! Good luck and may your blessings be many!
Jackie

[leapyrtwins]

I had an An return 12 yrs after surgery.  Was told at that time that they got it all.  I had surgery and Radiation in 2008. 

It should be noted that when doctors say they removed an AN "entirely" that means they removed all the cells they could see at the time of the surgery.  And AN surgery is very "close" work done through a microscope.  One tiny cell left behind is enough to start regrowth in some patients.  Regrowth when an AN is entirely removed is typically only 1-2%.

That said, I am sorry to hear that your AN is growing after 12 years, Paula Jean.  I don't know for sure, but I believe you should have the option of radiation or surgery.

I'm glad your audiologist insisted you have a MRI and that it caught the regrowth.  I am curious, however, as to why you didn't have annual MRI's post op from 1999 to 2009.  Isn't that a protocol that the doctors @ HEI follow?  I know all docs are different, but I believe my neurotologist has patients have annual MRIs for at least 10 years post op, if not indefinitely.

Please let us know what the doctors say regarding your options.

Best,

Jan

[Kaybo]

I just had to have them for 5 years and then I have them periodically at MY request...

K   

[JerseyGirl2]

  I am curious, however, as to why you didn't have annual MRI's post op from 1999 to 2009.  Isn't that a protocol that the doctors @ HEI follow?  I know all docs are different, but I believe my neurotologist has patients have annual MRIs for at least 10 years post op, if not indefinitely.

I had an MRI one year after surgery. Upon receipt and review, my House surgeon told me that I wouldn't need to have another MRI until the fifth year after surgery. I'm very comfortable with that decision.

Catherine (JerseyGirl 2)

[leapyrtwins]

Thanks, Catherine.

That explains why Paula-Jean wasn't having annual MRIs 10 years post op.

[sgerrard]

Hi Paula Jean,

Radiation treatment is often done after surgery if there is regrowth, or a bit left behind, so that should be an option for you, especially for something small. A second surgery is possible, although some doctors at the symposium last August were indicating that they would prefer doing a different approach than the first surgery, because of scar tissue. Some doctors are less willing to operate on a site the second time, because they don't have control over what happened the first time.

Welcome to the forum.

Steve

[paula jean]

Great Hat Steve, I'm an avid knitter also. (check out the Irish Hiking Hat on Ravelry). (I just bought yarn from WEBs, great shop for closeouts).

Well, everyone here hit the nail on the head, the HEC said to have one MRi 5 years out, and I remember them saying even that was not necessary. Not sure if it would have made any difference in my case as my AN is at 6mm, pretty small.

Anyone know of doctors in Connecticut? I don't think I would want to explore surgery again. If they can radiate, that would be my preference.  I think Yale New Haven is performing gamma knife radiation.

I just don't recall conversations with the HEC about regrowth. I thought the reason behind having surgery was to remove it. Shows what I know. Thank you everyone for the support and guidance.

[ppearl214]

Hi Paula and welcome. I'm sorry to hear the AN journey continues for you after such a long time.... and as we know, we need to always keep up with MRI's, etc, long after the fact, to make sure we, as AN'ers, stay on top of the situations......

I can share the Dr. Georj Noren in Providence, RI has been a leader in GK in the New England area. I know of some here that have been treated by him and he has also done some work with "fractionating" GK as well.  For New England.... he has done some marvelous AN GK work. I know Tufts University in Boston has also been doing some terrific GK work as well.  There are many of us local to Metro Boston that have also had other forms of radio (a few of us had Cyberknife -- CK -- at Beth Israel, many have had FSR or Proton at Mass General, etc).  

As for the CT area, Jim Scott may be able to assist.  Jim had a large AN "debulked" with the remainder irradiated (via FSR, not GK).... all, I believe, in CT (Dr. Goodrich works out of  http://www.ct-neurosurg.com/  Their offices are physically connected to the hospital of Saint Raphael).  He would also be a terrific resource. He has done a recent post here about this topic ..... "Search" option for Jim may be of help. (He'll probably show up soon as well.....)

Not sure if any of this helps, but did want to extend a "hello" to you... and sending wellness wishes your way......

Again, welcome.
Phyl

[DR]

Paula Jean,

Wow, what a bummer.  I struggle to imagine how frustrating it would be to get this news.

I believe all options are still in play for you, but you should talk to Dr. Brackmann just to be certain.  My decision to elect for surgery was based on the exact scenario you are going through today.  I thought "1-2% odds?  Heck, I overcame 1-in-200,000 odds just to end up with an AN in the first place!"  I liked the idea of keeping the radiation option in play in case of future growth, but that is just my personal preference.

Please keep in touch and let us know how things are going.  You are definitely in my thoughts and prayers!

- Dennis

[pjb]

So sorry to hear of the regrowth my thoughts and prayers are with you at least it is small now and hoping you will have several options too choose from.

Best Wishes,

Pat

[Jim Scott]

Hi, Paula Jean - and welcome, although I'm sorry you've experienced a re-growth, which is something we all dread but realize can occur.  

As my fellow moderator Phyl, stated, I underwent debulking surgery for my large (4.5 cm) AN, then FSR at the Hospital of Saint Raphael in New Haven, Connecticut (I live near Waterbury).  My radiation oncologist was the brilliant and affable Dr. Johnathan Haas who has since moved to Winthrop University hospital on Long Island (Mineola) as their Associate Director of radiation oncology.   http://www.winthrop.org/departments/clinical/LungCancer/physicians/Haas.cfm.  Dr. Hass and my neurosurgeon, the gifted and courtly Doctor Issac Goodrich (originally from Georgia, now an instructor at Yale School of Medicine and performing surgery as his schedule permits) teamed up to 'map' the FSR treatments to achieve the best results with a minimum of damage to any cranial nerves or soft tissue.  They were eminently successful.  The FSR sessions were tedious (26 in all) but I suffered no ill effects and my remaining AN appears to be about as dead as former senator John Edward's political career.  Now some 3½ years past the surgery and radiation, I'm pretty much living a normal life with only the slightest deficits - and those are invisible.  I'm SSD but cope with it fairly well, I think.  My balance is probably around 80% of what it was pre-AN and I don't notice any cognitive deficits at this point.  I'm in good overall health and hope to remain that way for the foreseeable future.      

I trust that you'll be able to undergo some form of radiation to vanquish your resurgent AN.  If you wish, you may contact me via PM for more information although, frankly, I have only my own experience to rely on and I'm not familiar with other Connecticut-based neurosurgeons performing surgery or radiation procedures, although Yale Medical School does both.  Dr. Goodrich has privileges at Yale but chose to perform my surgery at the Hospital of Saint Raphael because Yale is a teaching hospital and he didn't want anything but his handpicked, experienced team of doctors, nurses and technicians working with him on my case, in which - fortunately for me - he seemed to take a personal interest.  I suspect he was charmed by my lovely and gracious wife, Tina, who often has that effect on people.  Sometimes I'm simply the beneficiary of the good vibes she stirs in folks.  

Jim