Author Topic: Two years after the first diagnosis; NF2!  (Read 15465 times)

leapyrtwins

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Re: Two years after the first diagnosis; NF2!
« Reply #15 on: June 21, 2008, 11:00:38 am »
Beautifully said, Arushi - and Palace  :)

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

ppearl214

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Re: Two years after the first diagnosis; NF2!
« Reply #16 on: June 21, 2008, 11:28:47 am »
Palace,

I'm peeking in from time to time, as you know... and trying to stay caught up on happenings here... and I saw this.... and honestly, it threw me off-guard. You KNOW I'm sending you huggles.... you know I am cheering you on..... as you have always been there for me, know that I will always be there for you.  You're one tough lady and we're here to help you through... heck, you already know that.

{{{{{{{MASSIVE HUGGLEZZZZZZZ}}}}}}}   :-*  :-*  :-*

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Palace

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Re: Two years after the first diagnosis; NF2!
« Reply #17 on: June 24, 2008, 06:29:31 pm »
Jan, Phyl & Other Friends,


Thank you so much for helping me during this waiting-period.

I may break-out the Champagne for now.  Of course in six months we will look at another MRI series however, I just got the call from Stanford and the radiologist (3rd opinion) says she believes it is Choroidplexus.  That means the area where the spinal-fluid is produced.  (C.S.S.) 

I'm now free to lurk in the NF2 Club and have paid my dues in stress with my waiting for the latest news.  So far now, I may consider myself in the clear.  That means two people from Stanford don't believe it is another AN tumor.  One more "slight snag" was that Dominican never called Stanford, to get the Okay to read their opinion for the last MRI again.  (which Stanford wanted)  I asked Stanford if they would call the MRI center and give them the go-ahead since they/Stanford, are the people that wanted it read again by Dominican MRI Center.  (their radiologist that wrote NF2 this time)  I was now informed that they won't call Dominican MRI Center.  (even though they wanted it read again)  I'm passing my experience on with you however, I'll just consider this a happy time and enjoy the summer!

Again, the MRI six months ago appeared the same as now (shape) and wasn't diagnosed/read as another AN tumor by Dominican, at the end of 2007.

I haven't even told my husband yet and I just hung the phone down.  You people came first right now since, you put so much effort and comfort in my life in this (one of many) difficult time.

My birthday is June 30th (as is Paul Catania, AKA "CrazyCat") and I plan to toast for us, tonight!  What wonderful news for a birthday gift.   We can't afford anything more and that is all I wanted, anyway!

My "blessings" are with each wonderful person.  I now plan to go "toast" to all of you with supper.





Peace, love and much appreciation to all............



Palace
« Last Edit: June 24, 2008, 06:54:20 pm by Palace »
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

leapyrtwins

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Re: Two years after the first diagnosis; NF2!
« Reply #18 on: June 24, 2008, 09:23:37 pm »
Palace -

what wonderful news and what a huge relief  :)

Happy early birthday; I'm glad you have something positive to celebrate, so toast away  ;D

Blessings to you too,

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

Lorenzo

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Re: Two years after the first diagnosis; NF2!
« Reply #19 on: June 24, 2008, 10:45:37 pm »
What a relief!!! Wonderful news! I shall toast with a glass tonight.

Ciao, Lorenzo  :)
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

Omaschwannoma

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Re: Two years after the first diagnosis; NF2!
« Reply #20 on: June 25, 2008, 06:30:41 am »
Walking up to you and huggingWell this is good news for you Palace!  I'm glad you are able to relax with this more accurate diagnosis and hoping for the best with your six month MR.  Hope the dizziness and vertigo leave you alone for now! 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Palace

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Re: Two years after the first diagnosis; NF2!
« Reply #21 on: June 25, 2008, 10:30:20 am »
Thank-You Everyone:


People on my mother's side of the family, were doctors.  We need to have support and stay informed.  Here is a small section of an email I received this morning, regarding my good news; she is my neighbor.  (a local)  Some people don't understand our journey (frequent/necessary radiologist opinions, doctor consultations and treatment) and the reasons for this "AN Forum."  It is important sharing with you to "listen" to your body, doctors and "yourself"---always.

See below what was sent to me in RED!  (it's not in "red" on this screen)

You said that in six months, you'd need another MRI....if you're not hurting, couldn't you put that off?   You also said it costs you about 5 grand, I think.   Laura, when I get a pain, I usually IGNORE it, and it goes away eventually.  You, I think, head to the internet and see the lists of symptoms and start to feel WORSE.   Sometimes good health is in your attitude!   Please begin to see illnesses as annoyances to be ignored instead of giant battles to be fought tooth and nail with everything you've got!!!!!    You need to declare a moratorium on anything wrong with your body!!!!!!

*No, I don't feel worse---I feel so much better and it's all because of you people.  Others, we have to "let-go" and hold the hands of strength in soul-mates.  (along with forum members)  Sometimes, we have to leave others behind which is part of this journey.

In six months, the MRI series will be viewed more closely because, of the reading from Dominican Hospital.  I'm so thankful for any indication where "my team" will view this situation more carefully. 

Sadly, as we all know on this list, you don't play "games" with symptoms.  They are warning signals and mean something is amiss.  When doctors sometimes have no answers for us or if we were to "ignore" problems---the AN (or any other problem) will eventually progress past more simple treatment.

I'm very appreciative of the report from Dominican MRI Center as, it clearly is a "head-up" for any professional in the future who will read my next MRI in six months.  As all of you know, the NF2 possibility is all the more reason to keep on schedule with your appointments, communication on the list for sharing/learning and support/helping others.

I need to feel rejoice and not be "blasted."  You people are kind and understanding.  I need to thank you again for being there for me as, we don't need ignorant comments.  This situation is hard enough for all of us and the email I got this morning is an example of how much we need each-other, here!  My husband encouraged me to post this. 

The emptiness, sadness, stress, fatique and more---"is over-whelming!"  It is all of you that keep us going through this where others don't understand at all.



Your support means even "more" to me now........



Palace
« Last Edit: June 25, 2008, 04:05:40 pm by Palace »
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

leapyrtwins

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Re: Two years after the first diagnosis; NF2!
« Reply #22 on: June 25, 2008, 10:36:27 am »
Palace -

I don't see anything in RED, but I can figure out what your neighbor wrote - and I sympathize.  She very obviously doesn't get it  :o

I'm so glad you are on this forum so we can offer you the support you need - and can receive the wonderful support you always give us.

Stay strong, and try not to let your neighbor get to you - some people are just ignorant and there's really nothing you can do to change that.

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

Omaschwannoma

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Re: Two years after the first diagnosis; NF2!
« Reply #23 on: June 25, 2008, 12:38:08 pm »
 :o SHEESH!  The nerve of some people, but Palace you gotta smile here because you do get it when it comes to your body and feel blessed that you took the time to listen to your symptoms!  Reading the response from your friend made me immediately want to shout.....SILENCE!

This reminds me of what was said in similar shortly after my surgery, from numerous people I told about ongoing symptoms, even my husband, they kept telling me how I'm okay now, and can put behind me all my symptoms.  But, those symptoms never left and increased over time to the day my MR showed a problem that was corrected this February.  My husband confessed and "got onboard" finally to the after effects that can haunt some of us when he attended the July Symposium.  He saw a room full of "me's" for the first time and realised there's more to what's going on with me than just post op effects.  Listening to other doctors talk during that weekend was a real eye opener for him and life saver for me. 

You are an enlightened individual Palace and I am confident you will continue to stay in this awareness. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Cheryl R

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Re: Two years after the first diagnosis; NF2!
« Reply #24 on: June 25, 2008, 04:47:28 pm »
I can't believe it that you would get an email like you did.        They don't have an idea about health issues and they well could ignore something that does need treated and wait until too late.
You are lucky that you do have the info you do about the MRIs and the different drs and places that are part of this all.         
          Good luck in the future with all you are going thru!                Cheryl R 
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Crazycat

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Re: Two years after the first diagnosis; NF2!
« Reply #25 on: June 25, 2008, 05:06:23 pm »
Palace,
 
  The person who wrote that to you is evidently someone that has yet to be afflicted with a serious illness. Please try to not let them "get to you"
with their smug, diffident and condescending attitude.

  I'd been through the mill with variations of the same attitude before and after diagnosis and treatment. I'm still getting it! The bottom line is that most of us cannot truly fathom what it is like to endure a physical or psychological situation (either good or bad) until it is experienced first-hand. Until that happens, it's the easiest thing in the world to "poo poo" or dismiss someone else's problem as being an annoying distraction or even just "occurring in the afflicted person's mind". They'd simply rather not concern themselves with it because it detracts from their upbeat, positive, "feel-good-about-me" state of being. Perhaps on a deeper level they're so completely terrified of anything like that happening to them that their way of dealing with any notion of such a thing is blocked-out with defense mechanisms such as "reaction-formation" and plain-old "denial".

We all eventually have to deal with our frailty and mortality as human beings. How and when we're confronted with those situations as well as how we handle them spiritually and psychologically is something that is unique and personal with each of us. There are even little kids that are ahead of us in that department!

My advice is to just try to not take what they said too personal because if you do it will drive you crazy. While thinking that they're doing you a favor by piously pronouncing "it's all in your mind", what they're really doing is poisoning your disposition by making you angry and bitter.

My suggestion is to stay away from them. Don't do yourself any "favors" by feeling that you have to commiserate with such people. They'll have their own health dilemmas to deal with soon enough—and then they will learn.

I remember when I was getting very sick from my AN. I was up in Maine with some friends that live on a 267 acre farm and are completely into a holistic, natural lifestyle. At that particular time, I was complaining about my worsening symptoms to almost anyone who would listen. It had been sanctimoniously suggested that I had everything from some herbal or vitamin deficiency to liver poisoning to being stressed-out with a nasty neck subluxation to having had a nervous break-down. "It's all in your mind". Talk about wishful thinking!

Naturally (no pun intended) when I received my first MRI and official diagnosis, I harbored great resentment toward my well-intentioned but naive friends up in the wild and wooly hinterlands. I knew that if I had listened to them I probably would have begun to suffer seizures, sustained permanent brain damage and even could have died. They realized this as well. We all learned a big lesson from what happened.

All the concerns that you had regarding the onset of NF2 were legitimate and real. Anyone of us would have reacted in like-manner. Shame on the medical professionals for not clearing this up sooner so as to put your mind to rest.

Don't solicit opinions or even commiserate with outsiders regarding this issue. Don't waste you time and energy. After all, you have us for a shoulder to cry on and to compare notes with.

Paul "Van Gogh" (viva Van Gogh!!)
« Last Edit: June 25, 2008, 09:48:55 pm by Crazycat »
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

leapyrtwins

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Re: Two years after the first diagnosis; NF2!
« Reply #26 on: June 25, 2008, 10:02:51 pm »
Paul -

very insightful post; some excellent points.

I'm glad that you didn't listen to your "holistic" friends or you might not be here with us today.

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

Brendalu

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Re: Two years after the first diagnosis; NF2!
« Reply #27 on: June 26, 2008, 05:08:39 am »
Palace,
Indeed a wonderful birthday gift.........................celebrate, celebrate, celebrate.  Hugs and good thoughts coming your way!
Hugs,
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Palace

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Re: Two years after the first diagnosis; NF2!
« Reply #28 on: June 26, 2008, 09:19:01 am »
Dear AN Friends,


Each one of you has important ideas and information to share!

First, "Happy Birthday Paul!"  (and many more "AN-Free Birthday" celebrations with me; four days away, now)  We are fiscal-year babies!

Yes, I'm celebrating my good news of the six month evaluatiion.  This is an on-going journey which is from day-to-day.  It makes "all of us" appreciate moments, minutes, days and not just months or years.

I usually send private emails to AN people however, I'm going public when I feel others will contribute to my thread for their own benefit, as well as---my mental well-being.

I'm admiting that I was very stressed from this last week, the 21 surgeries I have been through, then getting such unusual news of an NF2!  I was at the end of my strength!

The reason a few acqaintances found out about my latest diagnosis is, they wanted to "see me" during my birthday at the end of the month.  I declined with the obvious symptoms.

As Paul so wisely suggested, I'll spend my birthday thoughts with all of you!  You are a "safe" and "understanding" group.



May I always remember your input, data and warmth,



Palace
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

Debbi

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Re: Two years after the first diagnosis; NF2!
« Reply #29 on: June 26, 2008, 10:28:37 am »
Palace-

I missed this post earlier, and just saw it today.  I am so very sorry that you are facing this new and unwelcome challenge.  I am sending good wishes and prayers to you - and hope that you get a medical concensus soon.  Try to find some moments of peace, okay?

warmest wishes,
Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com