Author Topic: age of your tumor??  (Read 3106 times)

james e

  • Hero Member
  • *****
  • Posts: 670
  • 72 years, 1.7cm, trans lab Mar 2010, BAHA 5
age of your tumor??
« on: December 12, 2009, 12:08:24 pm »
New guy here...but not new...I'm 60 years old.  Bad year for my health. I have always been healthy, athletic, and full of life. In April 2009 I had a stroke. Four days in the hospital found a hole in my heart that we are all born with, but mine did not close like they are supposed to. Blood was not going into my lungs and that caused my stroke. The heart got fixed with an PFO closure (a patch). I have been working and lifting weights every day living a wonderful life, until 2 weeks ago.

I got dizzy for a few seconds, but it would go away. Then it lasted a little longer...I think I'm having another stroke...go to see my doc.  MRI comes up with the 1.5 tumor. They compare the MRI from my April stroke to the December MRI. There was NO tumor there in April. This is a very new growth.

Do any of you have some baseline on the age of your tumor? Going from no tumor to a 1.5 in eight months...is that slow growing?

My symptoms are now constantly dizzy...never stops. I can walk, but I feel like I'm in NASCAR, always turning left. My hearing is weaker on the right side where the tumor is, and my ear feels like it is stuffed up.

I saw a neuro at Scott and White in Temple, Tx on Wednesday, and I will see the ENT doc on Monday. I really like these forums and used the one for my heart surgery...made it easier to know there is a good opportunity for these things to work out.

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: age of your tumor??
« Reply #1 on: December 12, 2009, 01:03:44 pm »
James-
Hi!  Welcome to our little corner of the internet - sorry you are here, but know that you will find this a great resource.  Do you live in Temple?  I am in Texas too!  Don't be a stranger and ask any question - I am sorry, but I don't have any great answers for how long people's tumors have been around...mine was a LONG time ago (14 years today, in fact) when I was 25...

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

james e

  • Hero Member
  • *****
  • Posts: 670
  • 72 years, 1.7cm, trans lab Mar 2010, BAHA 5
Re: age of your tumor??
« Reply #2 on: December 12, 2009, 01:42:07 pm »
I live in Georgetown, just north of Austin. Thanks for the welcome!

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: age of your tumor??
« Reply #3 on: December 12, 2009, 02:51:33 pm »
Hi, James  ~

Allow me to extend my own welcome to the site & the forum.  I'm never pleased to learn of another AN diagnosis but I think you'll benefit from using the website and, especially, the discussion forums.  To respond to your question: generally, acoustic neuromas tend to be very slow-growing, but they can erupt in growth spurts, as happened to some of our members and, apparently, to you. 

My large AN (diagnosed when I was a lad of 63) had, according to my neurosurgeon, probably been growing (at a glacial pace) for 10 to 15 years, which is fairly typical.  Although the hearing ability in my left ear slowly but surely decreased, it was over a period of years and easily attributed to 'aging' and the fact that in my former profession (radio broadcaster) I wore tight-fitting earphones, often turned up to 'loud', many hours a day - for over 25 years.  Approximately six months prior to my diagnosis, I became noticeably dizzy, lost my sense of taste (and 30+ pounds), felt intermittent stabbing pains on the left (AN) side of my head and became fatigued, which was out of the ordinary for me.  I'm not athletic but I'm far from sedentary, even though I retired in 2005.  I'm fortunate to not suffer from heart problems, back problems, diabetes, arthritis or male pattern baldness.  ;)  I assumed I would cruise into my dotage with no real physical problems, other than a slowing of body and mind as well as a few non-specific aches and pains.  I was greatly mistaken.

In May, 2006, I consulted with my PCP about my ongoing symptoms.  He first suspected 'a thyroid problem'.  Unpleasant tests proved that my thyroid was working just fine.  Next, he suspected a 'sinus problem'.  That suspicion resulted in my enduring a 40-minute head-only MRI (with contrast) that 'discovered' my 4.5 cm acoustic neuroma, pressing hard on my vulnerable brainstem.  A fruitless consult with a less-than-impressive local neurosurgeon, followed by a very encouraging 45-minute, uninterrupted consult with a neurosurgeon that had 30+ years of AN experience resulted in my hiring that fine doctor.  He presented me with a detailed plan to, (a) surgically 'de-bulk' (reduce) the size of my AN (to approximately 2.5 cm) and, in the process, cut off it's blood supply, then, (b) to have me undergo 26 carefully 'mapped' (with the help of a radiation oncologist via CT and MRI scans) 26 FSR sessions intended to destroy the remaining tumor's DNA.     

Long story short: the plan worked brilliantly.  I emerged from the debulking surgery with no real complications.  The radiation treatments were uneventful and my recovery from both procedures was swift and complete.  Today, three years later, my AN experience is a memory and although I have a few very minor reminders of it; a very slight (left) 'dry eye', (blinking resolves that), a small 'numb spot' on the left side of my tongue and about 10% less sensitivity on the left (AN) side of my face.  These are all unnoticeable to others and hardly noticeable to me.  Frankly, I consider myself blessed by my surgery/radiation outcome but my experience is hardly unique, as other forum posters will attest from their own experience. 

As you noted, these ANA forums are chock full of sensible, practicable information and a large group of caring people, eager to help other AN patients, especially those just diagnosed and feeling a bit adrift.  You're part of a 'virtual' family here, James, and I hope you'll use the site and the forums as a resource as you find out more about your AN and decide how to deal with it. 

Jim 
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

suboo73

  • Hero Member
  • *****
  • Posts: 639
Re: age of your tumor??
« Reply #4 on: December 12, 2009, 03:28:22 pm »
Hi James,

Sorry you had to join this exclusive club, but know that you are not alone!
[i am here with my sister]

Seems like you had very rapid growth, wow. 
I am wondering (out loud) - did you have contrast for both MRI's?

I am so glad you recovered well from your stroke and are lifting weights, that is awesome!
Now onto solving the AN issues.  Don't forget to take a break from all the information gathering, when you need one.
There is alot to learn.

Thoughts and prayers to you and your extended family.
Keep us posted on your progress.
Sincerely,
Sue

PS  I live in Virginia, never been to Texas, so i cannot help you with the docs there.  But others will chime in, i am sure!
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Nickittynic

  • Full Member
  • ***
  • Posts: 213
    • Bug in the Brain Blog
Re: age of your tumor??
« Reply #5 on: December 12, 2009, 03:35:49 pm »
I was 23 when they found my 5cm tumor and I was told it had probably been around for a loooooong time. In fact, I still had full hearing in my affected ear before surgery and my only tumor symptom was headaches from the pressure on my brainstem. They said I probably didn't have hearing and balance issues because I had, essentially, grown up with the tumor and adapted around it.
25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: age of your tumor??
« Reply #6 on: December 12, 2009, 05:00:24 pm »
Hi James and welcome to the Forum.

Sorry about the acoustic neuroma.

The first MRI I had was the one that diagnosed my AN, so there's no way to tell how long it was "living" inside my head.  Wish I could give you more of an answer.

Like Kaybo said, please free to ask us anything - that's what we're here for.

You might also want to contact the ANA and ask them for their brochures; you'll find them easy to understand and very helpful.

Glad you were able to get a PFO closure for your heart.  My dad had a 5-way bypass about 12 years ago and recently they found some small holes in his heart that have been leading to TIAs (some type of small strokes).  He's planning on getting "patched" in the New Year.  Sounds like your patch is working well; which is something he'll be happy to hear.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

CHD63

  • Hero Member
  • *****
  • Posts: 3235
  • Life is good again!!
Re: age of your tumor??
« Reply #7 on: December 12, 2009, 05:02:01 pm »
James .....

Welcome to this Forum of caring, supportive AN people.  First question I had when reading your post is:  is your AN 1.5 mm or 1.5 cm?  If it is 1.5 mm it is very tiny and within a typical growing pattern for ANs.  If it is 1.5 cm it is indeed a fast growing AN.

Let us know how you are doing and let us know what the ENT doctor says on Monday.

Best thoughts.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

james e

  • Hero Member
  • *****
  • Posts: 670
  • 72 years, 1.7cm, trans lab Mar 2010, BAHA 5
Re: age of your tumor??
« Reply #8 on: December 12, 2009, 06:48:10 pm »
It is 1.5cm. I don't know if the first mri had contrast or not. I know the internist and radiologist were both very suprised that it did not show up in the first mri. I also had another mri just 2 days after the first mri because of the stroke, and it did not show up there either. I will discuss this with the ENT on Monday and report back here about this rapid growth. By the way, I am from Norfolk, Va. The ENT doc went to medical school there.

Brendalu

  • Hero Member
  • *****
  • Posts: 1286
  • Smile..it makes everyone wonder what you are up to
Re: age of your tumor??
« Reply #9 on: December 12, 2009, 07:58:47 pm »
Welcome, James!

Sorry you had to find us because you have an AN.  This is a a great group of people.  I had a 3.5 cm removed four years ago via Translab.  I ran everyone off the side walks for about ten years before I started falling for no apparent reason.  My hearing was perfect.  My PCP diagnosed me on the first trip to see her and confirmed it with an MRI and then a contrast, because I had some other "junk" showing up in the MRI.  I live in Galveston County area of Texas...but have friends and family out your way.  My cousin is an RN at the prison at Gatesville, I'll check with her to see if she recommends anyone over another in your area...she usually knows most of the doctors out that way.
Welcome once again and I hope you find all the answers you are looking for.

Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

cherrypiper

  • Full Member
  • ***
  • Posts: 160
  • Hope is what this is all about
Re: age of your tumor??
« Reply #10 on: December 12, 2009, 08:58:52 pm »
welcome james. Houston area here. if my deafness and tinnitus has any indication my tumor was about 3 to 4 years in the making. It was about the size of a large almond and that shape as well.

1.5 cm in one year would be fast growing for the normal AN type. That's definitely a concern i'd bring up to my ENT.
10 mm x 2.4mm surgery date 12/03/07

glad to be here

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: age of your tumor??
« Reply #11 on: December 12, 2009, 10:44:25 pm »
If the MRI in April was not explicitly for checking for an AN - and it sounds like it wasn't - chances are they did not do a series on the auditory canal, and did not use contrast. So it probably just didn't show up. I doubt that you went from 0 to 1.5 cm in 8 months, although anything seems to be possible with ANs. They often go undetected for a while when there aren't any symptoms.

Anyway, you have one now. Welcome to the forum, this is the place when you have one.  ;)

Steve

8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Re: age of your tumor??
« Reply #12 on: December 15, 2009, 08:50:16 pm »
Hi James and welcome,

Like everyone else, I'm glad you found us but sorry you need to be here.  It sounds like you've been having one heck of a year with an AN on top instead of a cherry.  I think you'll find this forum a great source of information, understanding and just a great place to vent when you need to.  As everyone has said, ANs are usually slow growing and yours was probably missed in your previous MRI, but they are known to have sudden growth spurts too, so who knows for sure.  As Jan said the MRI shows what's there now, but not how long.  Ask any questions, vent or whatever you need, we are here for you.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

opp2

  • Sr. Member
  • ****
  • Posts: 491
Re: age of your tumor??
« Reply #13 on: December 16, 2009, 01:38:21 am »
Hi Jim, Welcome to the Team. I've decided to call it a team because everyone here really pitches in to help out their fellow (wo)man in fighting the AN within. Sorry you had to be here too.

I have a vague idea that I've had my AN for at least 11 years. I suffered some issues with hearing after a shooting incident (I'm a police officer, so no worries) and then I had some issues with light headed-ness after that. The tinnitus I put down to the shooting incident as it was sudden onset and never went away. The lightheaded-ness I thought was stress from a boss I didn't care much for. While my light headed feelings left in about 6 months, I've had the tinnitus since.

That's why I think mine is at least 11 years old. I'm 44.
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.