ANA Discussion Forum
General Category => NF2 => Topic started by: Palace on June 18, 2008, 10:30:30 pm
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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
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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
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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
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Palace -
I am shocked by this news :o
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
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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
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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
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WOW :o 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.
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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
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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
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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
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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.
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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
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Technology snafus, just what you needed. :P
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
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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!
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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
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Beautifully said, Arushi - and Palace :)
Jan
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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
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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
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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
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What a relief!!! Wonderful news! I shall toast with a glass tonight.
Ciao, Lorenzo :)
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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!
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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
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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
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: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.
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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
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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 enoughâ€â€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!!)
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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
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Palace,
Indeed a wonderful birthday gift.........................celebrate, celebrate, celebrate. Hugs and good thoughts coming your way!
Hugs,
Brenda
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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
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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
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Debbi,
The good news is perhaps, my neighbor will find peace with insight---listen to her own body and symptoms as, we all found out is so important.
Other good news Debbie, is that it's looking like my scan shows normal vascular tissue. (that is in simple words)
Natually, I'll keep my dates in six months for the next MRI and audiologist appointment.
Thank you for thinking of me and others.........
Palace
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Palace,
I am so happy to read your news! This is wonderful. I've a feeling that your next scan will not confirm NF2. Best wishes and have a great day.
Jeff