Two years after the first diagnosis; NF2!

[Palace]

Hello Everyone,


On my papers from the MRI center it now reads as follows:

Persistent large mass involving the right cerebellopontine angle extending to the intercanalicular portion of the right porous acousticus with associated expansion.  The findings are most consistent with the acoustic schwannoma.  There is a 4.5 mm area of enhancement involving the left cerebellar pontine angle suspicious for a small left cerebellar pontine angle acoustic schwannoma.  Query whether the patient has a history of neurofibromatosis Type 2.

Again, demonstrated is a large somewhat beterogeneously enhancing mass in the region of the right cerebellar pontine angle, which measures approximately 1.7 cm transversely by 1.45 cm AP.  This extends to the intercanalicular portion of the porous acousticus, which is expanded.  This is abutting the pontomedullary junction without T2 signal abnormality in this region.  This is not appreciably changed in size or enhancement from the prior examination.

*In the region of the left cerebellopontine angle there appears to be an enhancing 4.9 mm transversely by 3.3 mm AP left Cerebellar pontine acoustic schwannoma.  This was not clearly identified on the MRI performed May 29, 2007 or September 13, 2006.

I've had four brain MRI's so far!

Now, I'm in the NF2 club................



Palace

[Jeff]

Wow Palace,

I am very sorry. I know how I felt when I was diagnosed. I shed many tears.

Please let me know if there is anything I can do for you.

Jeff

[Lorenzo]

Terrible news! I'm so so sorry Palace! Let us know how things are going and what the plans are. We're here!
Ciao, Lorenzo

[leapyrtwins]

Palace -

I am shocked by this news 

Other than the MRI indicating that you are NF2, do you have any other indications?

I didn't know that something like this could happen.  I am terribly sorry.

As Lorenzo and Jeff said, we are here for you.

Stay strong,

Jan

[Jackie]

Hello Palace,

What does your Doctor say??? The reason I ask is Dr. Chang told me that bi-lateral AN's do not necessarily mean NF-2. He also told me that it usually shows up in your 20's. I was diagnosed about 14 months ago with an AN, then with another AN or Meningioma on the opposite side about 7 months later.. Right now the experts aren't in agreement. One says Meningioma the other says AN. My next MRI is July 6th to find out hopefully the real truth! Keep good thoughts and my prayers are with you!
Jackie

[Palace]

Jan, Jeff, Jackie and Lorenzo,


I somewhat suspected a problem.  I have occasional vertiqo where I can't balance to stand or sit.  When laying down I fell like I'm spinning.

I'm experiencing new sounds in my left ear.  (clicking and thumping)

My skin feels like it is crawling at the base of my head on the left side.

Dominican MRI is the diagnosed FAX report.  It will probably be confirmed by the radiologist from Stanford either, today or tomorrow.

That is all I know, so far.  Jackie, I will be most-interested in your next report.  Please let us know your results ASAP, in July.

Thank you for your support.  I've been online from three in the night until four in the morning.  News like this, does that!

Again, I have much appreciation for your help and ideas as I enter this new journey.



Palace

[Omaschwannoma]

WOW  is how I felt while reading your post Palace.  No doubt your mind is racing to collect as much info as possible, I know mine would be.  Very difficult to stay calm with this news, I'm sorry to hear this.  I do remember at the Symposium there was talk about NF2 mosaic where the patient presents with AN on one side and years later another AN develops on the other side.  Our "Cheryl" here presented as this.  She's a great inspiration and will no doubt have better answers for you.  Brenda also dx NF2 and went through the very same feelings as you.  I offer you my sympathies and am here as everyone else, to support as best I can (I still have some hearing left)!  Stay strong, meditate even if for five minutes it does a world of good. 

[Cheryl R]

Palace, I am very sorry to hear that you are found to be NF2.    I also was 2 years later when the AN shpwed up on the other side but was very small in my case.           It makes it a whole new ballgame in how to treat the tumors so we come out the best.         I am the older adult onset so am grateful for that aspect.                 Do you have a dr who also treats many NF2s as that is important.               House is good in that respect.              My Univ of Iowa dr has several and I know there are some out east but am not sure where exactly.
 I know an older couple from Michigan who attend the AN symposiums and have a son with NF2.   He has an ABI with good results.                They are quite active with NF2 groups and would have more knowledge of  more info.              I can PM and give you their email address if you want.
I was on the NF2 crew for a short time but did not stay as felt they were not as good about giving info to new people as this forum can be.         I felt like they were more social to each other which I do know we can be here too but we also give important AN info.           That is my opinion only and others may not feel that way.
   Jeff,Raven,Ton, Brendalu  and other NF2ers from here can also give you more info  when you are over the initial shock.   
                We are all thinking of you and hope for the best.
                                                Cheryl R

[Raven]

Palace,

When ever I visit this forum, I go straight to the NF2 category first, I was shocked to see your post. Shortly after being diagnosed last summer with bilateral ANs, I refused to accept that I may be NF2............until the MRI of my spine showed 5 small tumors and that confirmed it. I hardly ever think about being NF2, which helps, but having two young boys makes it hard sometimes. There was another thread titled "It could be worse"...............I think most of us NF2ers would agree.

I will echo what Cheryl said..........."We are all thinking of you and hope for the best"

John

[Jim Scott]

Palace:

I'm so very sorry to learn that your MRI appears to show that you have NF2.  This is clearly unwanted news and I offer you my empathy and support as you go forward from here.  Frankly, I'm not usually on this forum but try to check it out in my unassigned duties as a Moderator.  I'm glad I checked it out today so that I could at least acknowledge your post and the disturbing news it brought. 

We're all here to support you in whatever way we can, Palace.  Please stay connected and try to hold on to your optimism.

Jim

[Dealy]

Palace- I am so sorry to hear you have too join the NF2 club. No fun. I do not post as much as I used too because in a way I am trying too put this behind me as much as I can-that is hard too do though. My deafness tells me every day and reminds me. I think so much of Ted Kennedy sometimes and actually feel lucky that my tumor is not malignant. That is a whole new ballgame-and like Raven- I guess feel lucky in a way-it could be worse. I am coming up in July on my 2 year MRI post-radiation-so every time you hold your breath-what will they find. Thinking of you and God Bless. Yours-Ron. Hang tough-you are not alone in this battle.

[Palace]

Arushi, Cheryl R., Raven, Jim S. & Dealy,


Thank you so very much for adding your much-needed "warm-welcome" and support.  This brought up the internal drama we all suffer when first diagnosed with something extremely serious. 

Yesterday, I spent much time on the telephone trying to find some answers.  Dr. Gibbs was able to open and view my May/2008 MRI.

I was told the MRI scanned series couldn't be opened by the radiologist at Stanford.  I was informed the radiologist (at Stanford) is now on vacation so, when this person returns, they will be paged to view the current MRI where it can be opened.  (with Dr. Iris Gibbs who planned my original TX along with Dr. Blevins)

Dominican Hospital (MRI center) is ordered by Stanford to read my series "again" using the same radiologist, Mark A. Schmetz, M.D.!  It conflicts with the conclusion of the reading between the two people.  (Dr. Gibbs & Dr. Schmetz) 

A third opinion will incorporated upon the return of the radiologist who is on a holiday at the present time.  (Dr. Nancy F.) 

Thank you for any information or support all of you have given to me and others who face the unknown.  Sometimes, this period being the lonley avenue we walk between the road--- is the most difficult before, we arrive back on a path of vision and understanding.



Regards and appreciation,



Palace

[sgerrard]

Technology snafus, just what you needed. 

I am glad you are working with Dr. Gibbs at Stanford, I thought she was a really good radiation oncologist. I was told that most MRIs are reviewed by a group there every Thursday, so that several doctors can review and discuss them. Once they have all the scans in viewable form, they should be able to sort out what is going on for you. At least you can look forward to some reliable answers, even if the news is not the best.

Take care,

Steve

[Omaschwannoma]

Placing arm around shoulder..... We are never truly alone in dealing with AN's or NF2, being alone is just a mis-perception we have.  Perhaps we feel this way because doctors leave the hard decisions up to us in our treament of a serious tumor (I can't think of anything else that would make me feel "alone"), but I guess this is "the blessing" we have as other brain tumor patients don't have the luxury?!  Another diagnosis of another tumor or returning one hurls us back into feeling it's up to no one but us to figure out our care.  Even harder is when multiple doctors cannot agree.  It is difficult to remember we are taken care of, by our doctors as they mark out a plan or even the diagnosis, and by all of us here who truly "get it" who walk alongside holding you up.  I just wanted to talk to you Palace so you know as you wait, you are not alone.  I know you know this though, but it is comforting to read while you are waiting! 

[Palace]

Sgerrand,

Thank you so much for responding and more information.  (about the "ropes" at Stanford)

Arushi,

That was beautiful!  Your writing is like a "gift of poetry" which is part of my life.

I was up with the stars, laying on the moon last night---covered with a blanket of migraine-magic. 

The woven "rags-of-wisdom" weave around an Acoustic Neuroma tumor as, friendships are born when the "schwannoma cell" splits!



Palace