Help/Advice Please

[Anomar11]

Hi All,
Thought I was doing quite well, until today when I learned I have to wait 7 weeks to get into Mayo.  Was so hoping to get before the specialists for initial consult to know options and have a game plan.  It's the waiting and unknown that's hard.  I've not been sleeping well so my perspective isn't the best right now.  When I got the results of MRI last week, I did send off a note re: specifics/size, location etc to the Cyberknife forum.  Dr. Medberry did promptly reply stating from what I wrote, it appeared I would be a candidate for GK/CK recommending CK if hearing preservation was possible.  Suggested I get my MRI to nearest CK clinic.  I chose Mayo Clinic because they have a reputation of excellence, and everyone I know who has gone there for other reasons has nothing but the best to say.  More importantly, I feel they will give me a more rounded picture of options since they've been doing GK for AN's as well as microsurgery.  On one hand I know 7 weeks is likely not that big a deal given the usual nature of these things.  On the other hand, it's unsettling when you do hear of the exceptional few whose tumors grew faster than expected.  I need to get perspective and not let this thing rule my thoughts and life.  Where I live summers are short and  enjoying them goes a long way for mental health in getting through long winters.  There's also a lot of special family gatherings planned.  Hopefully this will make the time clip along.    Just needed to vent.    Also anyone have any experience with Cyberknife anywhere in states surrounding Michigan or midwest in general.   Thanks.  Mona

[Debbi]

Hi Mona-

I can't offer any feedback on Mayo or CK (I am a translab gal), but I can say that I totally empathize with you on the frustration of waiting.  I am wondering if it would be worthwhile to send your MRI films (hopefuly you have them on a CD?) to some other CK or GK facilities for phone consults?  Hopefully some of the radio surgery folks here on this forum will have some specific suggestions on that.

Meanwhile, you make a wonderful point about this being a great time of year in the northern states - if you can find the internal patience to take a few deep breaths and enjoy the summer, good for you!  In most cases, these things are very slow growing, so you are probably safe with the wait (although I, too worried that I might have a freakishly fast growning AN - I didn't).

Hang in there, and let us know how you are doing.

Debbi - enjoying the springtime in NJ...

[sgerrard]

Hi Mona,

Hurry up and wait - our favorite story.    If you are feeling really antsy, you could try sending an email to Dr. Medbery. Thank him for his reply, explain that The Mayo Clinic will take 7 weeks, and ask if he would mind taking a quick look at your MRI for you. He might say no, but he might say yes, and then you could mail him a CD.

Of course he would probably say you are fine, and tell you to wait for the Mayo Clinic appointment. 

Unless you get another MRI between now and then, there is no way to know for sure if it is growing. If some symptom suddenly crops up, then you might want to make some calls; otherwise, you might as well enjoy the summer. I was diagnosed in June, and got treatment in September, after all the family vacations were done.

Take care,

Steve

[macintosh]

Hello Mona--

Here's 2cents worth.

In the short run--One reason the docs will let you wait seven weeks is that nothing is going to happen with an AN in a matter of weeks or a few months. I was MRIed in October 06 and treated in January 07. Those of us with ANs have a condition that has a phenomenally high treatment success rate, usualy with minimal side effects, and if you're going to the Mayo Clinic, you're getting treatment as good as any in the world.

In the long run--What I realized five minutes after treatment is that nothing really had changed. I still need to get yearly MRIs, and even though the first MRI looked good, it's still preliminary. I'll have a better idea this year whether the thing really is dying. So  my point of view is that the one thing that an AN demands above all is patience. It can drive you mad if you let it, but the chances really are extremely high that in the long run, you will look on this as more of an annoyance than a serious problem.

Mac

[Anomar11]

Thanks  to all for replies.  You've all given me some reassurance and sound advice.

Debbi, I've been following your story.  I'm glad you're on the mend.

Steve, I'd hazard a guess you're right, Medberry would likely say, I'm fine wait for Mayo.

Mac, I've been a little shy on patience for the better part of my 51 years.  You're so right that this will be key, so I might as well start practicing now.

In different ways you all kind of said the same thing, and I appreciate your responses.  In my gut I feel I'd be better off mentally and physically to practice learning to control my thoughts/emotions, keeping busy and enjoying the summer vs chasing off in another direction when in the long run it's likely not going to make a significant difference.  Not to say I won't look at other options if that becomes necessary.  I'm now looking forward to Mayo as they are one of the best in the world.  I've also read good things about these MD's.  Anyway thats how I'm feeling - today  -.  Thanks again. 

Mona

[Yvette]

I know it's hard to wait, I had to wait weeks to get into Mayo too. Everyone wants to get into Mayo, and for good reason! So be assured if that amazing team of world class, no world leading!--brain surgeons has seen your MRI and scheduled you 7 weeks out, they are comfortable with this. They have assumed responsibility for you, and wouldn't jeoparize your health or their famous reputation by neglecting you. It is rare for ANs to have rapid growth, and even if it does grow some, Mayo handles this all the time. Mine grew 2 millmeters while waiting. Just remember that you cannot change a lot of things, but you CAN firmly decide to enjoy your life while waiting for surgery. It's hard to do sometimes, but you can get better at it. Put your AN in an imaginary box, put the lid on it and put it under the bed. If you must look inside the box, set the kitchen timer and limit the amount of time you allow worry, stress, and its hormones into your body. I can't wait for you to be a "postie", I'm following YOUR story!

Blessings, Yvette

[Anomar11]

Yvette,

I like the analogy.  I'll "box it up"  Many thanks, and blessings back to you.  .

Mona

[Jim Scott]

Mona:

As a guy who finds fast food too slow, I can totally relate to your impatience.  However, although we're all 'special' in our own inimitable way, it's futile to worry that your AN will be the fast-growing exception.  Especially when that worry simply stresses you out for no good reason.  As you know, the vast majority of acoustic neuromas grow very slowly and your AN probably isn't an over-achiever. 

Seven weeks from now will put you in the Mayo Clinic by mid-August.  Aside from the reality that Yvette focussed on: the fact that the Mayo doctors are confident with a seven-week wait to consult with you and form a game plan for your eventual treatment - that isn't all that long of a wait.  Once you have the initial consult I'm sure that - if necessary - you'll be scheduled for treatment very quickly - or possibly be told that you can simply go down the 'Watch-and-Wait' route (observation). 

By the time my increasing severe symptoms drove me into a doctor's office, an MRI scan, the bad news ("it's a large Acoustic Neuroma"), then to a neurosurgeon who explained what an Acoustic Neuroma actually was and that mine was pressing on my brainstem in a way that the surgeon found alarming, my surgery was scheduled for about 5 days later.  It was postponed because it interfered with the surgeon's golf tournament (just kidding) and yet, I did quite well.  I think you will, too.  Just try to remain positive, refuse to indulge in the 'what-if's' and decide to enjoy the summer.  Oh, and stay connected here, of course. 

Jim

 

[Dan]

Hi Mona,

While I was in the decision making process I had two weeks of vacation and didn't have any big plans.  That was probably the longest hardest two weeks of my life.  After I decided on surgery and the Dr. told me he had a three month waiting list I decided to fill my schedule, I made plans for every weekend and free minute from work.  The 3 months went by quicker and with fewer depressing times as the two weeks before making a decision.  Fill your days with friends and family,  I found that talking with them about all of the good experiences I read about on the forum helped.

Dan in Germany 

[cmp]

Hi Mona,

You are so right--waiting combined with unknowns is incredibly hard!

I don't think there's a forumite here who hasn't stressed over what seems like the impossibly slow pace at which things are unfolding/getting resolved. Personally, I seem to alternate between zen-like patience (usually after taking the opportunity to compare some part of my experience with that of folks here, and learning that it will almost certainly turn out all right) and bouts of insomnia (every time a wrinkle comes up in my neat little plans ).

The upside of not getting into Mayo till mid-August is exactly what you've mentioned--you'll have an opportunity to enjoy a summer that is all too short where you live. The fact that you have some special family gatherings planned is really a godsend, and I hope you enjoy them with real gusto! The other plus is that at the end of the wait, you'll be treated at a world class facility by world class doctors.

I've really found that a combination of spending time on these forums and keeping my life as full of meaningful activity as possible has really been a fabulous stress-buster, and I hope the same will work for you!

Hang in there! (And, BTW, Mona is a great name--my daughter's, as a matter of fact!)

Carrie

[Anomar11]

Thanks for all the recent responses.  It means a great deal to me.
Jim, The thing about finding fast food too slow is funny and all too true for many of us.  We tend to want it yesterday.  I will stay connected to this forum.  It's a Godsend.

Dan, good advice about keeping busy.  Thankfully, it's the summer months and that makes it a bit easier.

Carrie, I've been following your posts.  What a fiasco.  At least now that you have a date, you can turn the page mentally and move on.  You'll be in my prayers.

Mona