Newbie--scheduled for surgery in October 2008

[MAlegant]

"I do have one question that I forgot to ask that might seem silly:  how do they repair the hole in your skull?  Do they put the piece back or simply cover it up with something?  I just figured that they probably put the piece back and use a small plate to secure it back to the rest of the skull, but I really don't know.  Your thoughts?

Also, have you noticed any cognitive deficits?  Do you find any difficulties thinking clearly?  I'm expecting to be fuzzy for a few months, with gradual improvement back to my baseline--is that realistic?"

Dr. D,
They repaired my "hole in the head" with cranioplasty, which I take to mean some kind of drywall compound.    I've had virtually no headaches since after the recovery period (am I still recovering?) but I had a ton of headaches in the years leading up to diagnosis. 

Regarding cognitive issues, there is a new category on this forum related to them so you should  check it out.  I definitely had my problems with this but it has improved to the point where I believe I'm right back where I was to begin with.  I'm a dean of students in a busy conservatory with a lot of responsibility so, like you, cognitive impairment for me would mean the end of a career.   At 3 months post-op I feel pretty confident that other than my usual spaciness (my natural state) all is well.  I'm sure you will recover to that point also.  I guess it depends on the person and the individual aspects of the surgery but from what I've gathered, most folks return to their pre-surgery cognitive state.

All best,
Marci

[Sue Vogel]

 :)I am new also and was misdiagnosed for over four years.  I have a fast growing tumor at 1.7 X 1.9 X 2.0 cm.  My surgery is scheduled for Monday morning Oct. 13.  I am a science teacher so I have researched until I can read no more.  I have one of the greatest surgeons in the country at the University of Iowa Hospitals who assured me his goal was to "save my pretty smile."  I am healthy, strong, educated, and full of faith that I can successfully overcome this challenge and help others to face similar adversities in the future.  I am so grateful for finding this website and reading the stories that other AN members have shared.  It is comforting to know that we are not alone and that there are others who understand this challenge.  I hope that I, too, can be of help to others as I overcome this intruder.  Bless you for sharing.  You will be supported by many.  SUE

[Cheryl R]

Hello.   I am also a Univ of Iowa survivor  and being found in time to be NF2, have had 4 surgeries there.    I am very grateful we do have such a place in the state.             I will send you a personal message since have done my story many times here and gets to boring to be read numerous times.      Cathy also had surgery there recently and is known as doglover on the forum.             I know of others who have come and gone from here also.            All did well.
                                                     Cheryl R

[Dog Lover]

HI SUE,

Yep, Cheryl is right. I had a mid fossa with Dr. Gantz at the UIHC on Aug. 21. I am now 7 weeks post-op and returning to work full time next week. (yikes!).

If you have any questions feel free to contact me. 

Cathy

[dufreyne]

Big thanks to Karen(Arushi), Jim, Joe Bloggs, Marci and Sue for your insight on "patching the hole."( It almost sounds surreal).   

Marci:  I'm happy to hear that your cognitive abilities did come back, albeit slowly.  Working as a Dean of Students must be demanding, yet gratifying.  Thinking students always keep you on your toes...

JoeBloggs:  I can't believe they didn't call your with the MRI result.  I know we have different systems (and we have our own breed of problems in the U.S.), but give me a break.  Kudos for taking it upon yourself to pursue the MRI results despite the lack of a phone call.  With respect to the surgeon, remember you only have one chance at getting this right (or as "right" as possible).  No matter which country, pick the best surgeon you have access to.  You can always recuperate where you want.  That's just my two cents.

Karen(Arushi):  Thanks for the tips about 'multi-tasking' and short-term memory.  I'm an ER doc, so I suspect that may prove to be my biggest hurdle.  It helps to know in advance.  With respect to cognition, I hope to do various activities to stimulate my brain.  I am fortunate to have a 7 year old math whiz for a son who I've been sort of home schooling.  Now it's going to be his turn to teach/quiz me! He's going to love it!

Sue:  I admire your positive outlook and take charge demeanor.  You've obviously researched this to the point of diminishing returns, and have made a good decision.  I am happy that you're moving forward so soon.  I'm a week and a half behind you.  Perhaps we can share recovery stories.  Many good thoughts your way...

I am trying to keep busy ahead of the surgery--mostly working and spending time with family.  I do, however, find myself distracted at work.  I often see patients with complaints or illness that are significantly less serious than what we have all experienced with AN.  I find it difficult to stay focused on the fact that, for them, their problem is a big deal.  I have to constantly remind myself not to compare their problem with mine--but it's human nature. 

On a lighter note, does anyone know if there is a national ANA symposium?  If so, where and when?

[leapyrtwins]

D -

the ANA has a symposium every two years.  The last one was in Philadelphia in 2007, the next one is in Chicago (yea!!!) in 2009.

It's in August - I think the 14th through the 16th - at The Drake Hotel and it's being hosted by Dr. Richard Wiet and Northwestern University Medical School.

Dr. Wiet is on the ANA Medical Advisory Board (and is in practice with my neurotologist, Dr. Robert Battista - another yea!!!).

Anyway, I'm definitely looking forward to the symposium - as are many others - in fact, I'm volunteering and I'm also a sponsor.  It would be great for all of us to meet you there. 

More details will be on this website shortly and there will be registration information in the December issues of Notes (ANA newsletter - if you join, they'll send you one).

Jan

[MAlegant]

Dr. D,
These are Oberlin students; they absolutely keep me on my toes!

I am planning on attending the conference next August--it is my 50th birthday (did I really say that?) and I told my husband that was the birthday present I wanted.  I'm also dragging him along.  I really want to meet (and hug) as many of these fine forum people as I can; they continue to be a lifeline to me (no Tina Fey joke intended) and besides, Chicago is a great city.  Ok, it's really the shopping that calls to me...

Did you put your surgery date on our calendar?  Will someone post updates about how you are?  I know it sounds hokey, but it is a comfort to all of us, pre and posties.

All best,
Marci

[leapyrtwins]

Good point, Marci.

We do worry about our "family" D, so please make sure your big date is on the AN Calendar.

If it's already there, I apologize for the reminder - I haven't had time to check the calendar lately.

I've been relying on LA David to keep me informed.

Jan

[joebloggs]

Thanks for your wise words of advice Dufreyne - you are right - I can't just let any random surgeon cut a hole in my head!  I need these brains!  And yeah, it is a bit slack re: not being told about the AN - just one of those things though, a clerical or whatever error - perhaps if I was in America I could sue them, but not here - it's just not the done thing unless something horrific happens in which case the doctor gets struck off - that's about the extent of it.

Good luck with it all!

[dufreyne]

Thanks for the info re:  upcoming symposium in August 2009.  Chicago is a great city.  I'm really looking forward to meeting and spending time with everyone from here.  I'd like to make a big vacation out of it and spend some time really getting to know Chicago.

I think I should probably formally join the ANA.  I'd like to start receiving the newsletter that Jan described.

D--

[MAlegant]

A weekend in Chicago--that's what I'm talking about! 

[Jim Scott]

I think I should probably formally join the ANA.  I'd like to start receiving the newsletter that Jan described.

Your wish is our command.    Just go here: https://secure.baxinternet.com/~anausa/membership_donate.html.

As a medical professional your annual dues would be $150.  Money well spent, in my opinion.  The neurosurgeon that performed my AN surgery and partnered with a radiation oncologist to map my FSR treatments - both very successful with absolutely minimal complications - has been a member of ANA since it's inception back in 1981.  That impressed me as it demonstrated this doctor was involved with the AN 'community'.  Although he was my age and performed spinal surgery as well as skull-based surgery, he was very current on the latest methodology relating to acoustic neuroma.  I will always be grateful to him.   

I think you'll enjoy the newsletter ('Notes') and may eventually be a contributor as it always has one or two AN-related articles written from a physicians standpoint.  As a doctor having AN surgery, your input would be highly valued. 

What is the scheduled date for your surgery?  I would like to add it to our 'AN Treatment calendar'.  http://my.calendars.net/AN_Treatments unless you would rather keep the date confidential or, perhaps prefer to add it yourself. 

Jim

[Cheryl R]

If a dr is joining because he is an ANer than why wouldn't his ANA membership be the usual $40.   Many of us nurses would be considered medical professional and none that I know of had the higher fee.        I can see if a dr is joining to give information or professional purposes only but one who is a regular one of us should not be charged the higher fee.
                                                      Cheryl R

[leapyrtwins]

If a dr is joining because he is an ANer than why wouldn't his ANA membership be the usual $40.   Many of us nurses would be considered medical professional and none that I know of had the higher fee.        I can see if a dr is joining to give information or professional purposes only but one who is a regular one of us should not be charged the higher fee.

Jim -

I was wondering this very same thing.  Isn't the $150 medical membership for doctors who are neurosurgeons, neurotologists, etc., who actually treat ANs?  I'm only a member of the ANA, which translates to "I have no authority at all here" - but I would think that D would be entitled to a $40 membership like the rest of us.

Sam Rush, if you're out there, do you mind telling us how much you paid for dues?

Jan

[sgerrard]

I believe it is up to Dufreyne. As Jim said, he can register as a medical professional for $150, or as Cheryl said, he can register as a patient for $40. As far as I know, the ANA doesn't run a background check you.

Hey,finally there is an example of how having an AN can pay off; Dufreyne stands to save $110 on his ANA membership! 

Steve