An AN thread -- post history

[ppearl214]

well, I decided to go back and review my post history (and as you can see, I've got quite a few to muddle through) and thought... wouldn't it be great to see the very first post I did here and see how far I've come since then in my AN education, forum friendships and experiences.... boy, things have changed.

so, I went to my "Profile", then on the bottom of the page, I clicked on "last posts" of this person... I had 185 pgs of posts... so, I chose back to the first post I did... just over 2 yrs ago... Aug 24, 2005... and there it was... my first post... and heck yeah, I've come a long way.  So, in the spirit of a little AN stroll down short-term memory lane, here is the very first post I did over 2 yrs ago (and trust me, over 2 yrs ago on this site, it was quite a different "ambience" than what it is now)....so, here's my very first post on this site... and I've truly come a long way since then.  Sometimes it's nice to revisit (or maybe not, depending on your own situation)......as this forum board and those here that have participated since my first post here truly helped strengthen my will to forge forward in this journey.  What was your very first post on this forum board?

Phyl

==========================================================================

"Hi all... in speaking with Marie at ANA, she mentioned the site and I thought I'd say hi...

Was diagnosed with initial MRI in May, 2005 with Schwannoma.  Had repeat MRI last week and confirmed. Also dealing with Chiari I Malformation, so as you can see, I got my hands full.

44 yrs old, size of Schwannoma is 5mm x 8mm left IAC with IAC enlargement.  Have facial numbness and minimal hearing loss occuring, as well as headaches.  Balance issue is debatable as it could be the schwannoma or the Chiari I Malformation (lucky me!)  .... I've lucked out and obtained a great neurosurgical team here in Boston at Brigham & Women's Hospital and will meet with them this Friday to discuss options. 

I have read some of the posts here, including the questions to ask (pre-op) and I can see you all are terrific in providing support.  I am very lucky to have stumbled (sorry for the pun) onto you all and look forward to chatting with you to learn more about what I am dealing with and up against.

God bless to you all and be well.
Phyl"

[Sue]

Phyl, this is interesting!  Fun topic.

 After two years your humor is still in tact and you can tell from the beginning that you are smart as a whip and compassionate. 

And you are still helping so many people and an inspiration to us all.

Cheers on two years! ( I mean that as a good thing...)

Sue in Vancouver USA

[Larry]

Girly,

Ya gave away your age silly billy. Mind you, I have seen your photos and I could have sworn that you were in your mid to late 30's.

(Laz gets ready for kiss on cheek after brown noseing)

Laz

[ppearl214]

Brown-nosing and bribes of TimTams/Cadbury 3-Wishes accepted

Sue, thank you ..... so, what was your first post and since then, how do you feel you have changed since the first?


Phyl, the now older AN'er

[Joef]

My first. (and now I really can have a screw lose  )

=======================================================

Hey everyone,

    I've been diagnosed with a 3.9cm AN, about a month ago. This forum has been a big help with understanding my dilemma.(I've been a lurker) I have surgery scheduled with Dr. Brackmann at House on Aug 9 . and I can't wait ! ... these symptoms are driving me crazy (numbness,dizziness,ear ringing, no headaches yet),  I'm looking forward to getting this over with and going on with life (I'm 40)... I will lose the hearing in my right ear (which is gone anyway) and was thinking about BAHA  .. anyone here have it? does it work well? ... and any problems with airport security with a bolt in your head   

  Joe
  Shelton,CT USA

[nancyann]

I just checked my 1st post:  10/13/06:
 ' hi guys - i'm new to computers, trying to figure out how to get in - hope this is right.   anyway, i had AN surgery with subsequent facial paralysis 6/06; am scheduled for a hypoglossal anastamosis (7-12 jump, partial) 11/9, & would like to hear from those of you who've had this done - are you glad you did it, etc.  I'm pretty nervous about it, you know, once bitten twice shy.  thanks, nancy'

WOW - did things change - well, not the paralysis but the fact that I didn't have the 7-12, and am now in the process of seeing a surgeon for facial reconstruction.   Life surely takes turns.
Thanks for starting this Phyl;  looking back at my 1st post wasn't as bad as I thought it would be.    Always good thoughts,  Nancy

[Captain Deb]

Hi everyone--
Actually I came onto this forum 5 years ago back in its old incarnation as the ANA Listserve, when it was in the form of emails that flooded everyoned inbox and you had to wade through them all instead of "taking what you like and leaving the rest."  When my headaches prevented me from spending any time on the 'puter, I bailed. 

I rejoined in February of 06 with this post:


Hey Y'all--
So happy to find this site--I was on an AN listserve that I had to quit because of all the emails all the time.

I had my 1.2 cm AN removed via Middle Fossa at House in Jan of 03 and am still stuggling with debilitating headaches that have been diagnosed as migraines because of their one-sidedness and throbbing characteristics.  When I get one of these I can barely move or speak the pain is so bad.
I also get a tension/pressure type headache about eveyday.  The triggers for these come mostly from fatigue and exertion, but occaisionally I'll just wake up with it.

I've been on a number of anti-seizure meds and also anti-depressants for 3 years off and on, and the frequency and duration of these buggers is slowly diminishing.
 
 I have been using Zomig nasal spray for the really bad ones which works pretty good if I take it in time. Either it totally aborts the headache, especially if I go lay down, or it shortens it to 4 hours instead of 12. I am fortunate enough to be in a finacial position where my husband takes up most of the slack, but I do (did) have a successful carreer as a painter. I did apply for disability benefits 2 years ago and have been turned down twice, but now have a lawyer working on it for me. I have resumed my painting on a part time basis, but about 2 hours into a session, my head starts acting up--pressure and one-sided pain on the AN side and I find one-half a vicodin usually takes care of it.

 I really have to watch taking this nartcotic beacause it does cause rebound headaches.  Problem is I don't know if I'm getting a rebound headache or a migraine.

My theory on this whole thing after doing a bunch of reading on migraines is this:  I have hereditary migraines--not bad enough to seek medical help before my AN but bad enough to have to lay down for a bit--maybe 3-4 times a year.  The trauma of the surgery kicked my migraine mechanism into overdrive. 

The surgery also traumatized and damaged muscles and tendons in my neck, which is where most of the pain starts, what they call a "prodrome." My first break came from a really good physical therapist who worked on my neck 2-3 times a week for several months. This allowed me to paint again for the first time in 2 and a half years. I am still getting the migraines about twice a month, but I'm exercising again at our local wellness center 2-3 times a week which is huge progress for me.

Anyway that's my story and I'm sticking to it!  I empathize with all of you out there stuggling with these headaches. Before all this I was an avid hiker, sailor, windsurfer and runner and now, well I feel like I went to sleep in Jan of 03 and woke up in someone else's body and it really p's me off sometimes to have been dealt such a bad hand--you know what I mean.
Thanks for reading.
Deborah

[vcschaub]

The following was my first post, back in October of 2005. It was one month prior to my surgery!!

"I am scheduled for middle fossa surgery on November 8th at the House Ear Clinic. All thoughts and prayers are appreciated."

The thought and prayers are still appreciated!!

[ppearl214]

V, I even throw in extra huggles for you. 

Phyl

[vcschaub]

Thanks for the huggles! This forum has been a great source of support and information.

[Sue]

Okay - I'll play. March 15, 2006 was my first post. Almost 18 months later...I'm not sure about that Meningioma thing still. I didn't wait around very long before I had treatment and I happily took my doctor's suggestion and had the radiosurgery. I did not hunt around trying to find different places to go, because....well, I don't know why...I just didn't!  I guess everything my doctor said sounded good to me and I didn't want to travel to have this taken care of and I trusted my doctor.  And yes, I still have all of those symptoms that I have to drag around with me like so much unwanted baggage. I consider myself a veteran of the AN wars now and I am lucky enough to be on the crew of the Princess Batty Wench which sails the Cyber Seas on occasion and I do feel very fortunate that my AN, irritating and frustrating as it is, is manageable. I've even got to meet other AN patients when we had a lovely lunch in Seattle. That was a lot of fun. God Bless modern medicine. And God Bless everyone on this forum that has been a help to me. And God Bless the folks on here that can use humor to get through the gloom, because "What good's a tumor if you don't use some humor to get you through the day and the night?" Right?

Sue in Vancouver USA




 Well, this is quite a sophisticated site!  Kudo's to whoever designed this. Anyway, I feel like I"m at an AA meeting, although drinking has never been my problem!   Hello, my name is Sue and I have Acoustic Neuroma and Meningioma. At last there is a name to accompany the symptoms I've slowly accumulated for over a year. Boy, this was NEVER on my radar.  But a few weeks ago I had a dream and I was telling somebody, "I have something wrong with me, I have something wrong with me."  I remember very clearly saying that.  I think my brain cells were saying, "Hey, over here!  This thing shouldn't be here!  Wake up!"  It took such a long time to get to the right doctor for me.  It wasn't until I developed numbness on the left side of my face and told the doctor that I was sent to a neurologist who ordered the MRI. (Boy, THAT was interesting.) This was last Friday. Monday afternoon my husband and I were at the neurosurgeon's office. This Friday I will see another doctor who will talk to me about the gamma knife procedure.  My doctor does not recommend surgery as he believes there is too much risk for facial paralysis and total hearing loss, but I sort of see now that that depends on the tumor (Don't you HATE that word?) location or size or something, I guess.  I had my 60th birthday on March 1, so I will be interested to see if age has anything to do with proceeding with gamma knife treatment or not. I just would like this to not get any worse than it is now. I was disappointed to learn that my hearing loss is permanent and that the hum of tinnitus will probably not get much better (but, then maybe it will) but happy to know that this neuroma is not so uncommon, although I've never even heard of it before.  So, anyway, here I am. As Gilda Radner as Rosanne Rosannadana used to say, "It's always something."

[Soundy]

I lurked around here a long time ( 5 or 6 months before posting)... did the same at lupus forum I
belong to... and I tend to still lurk more often than post...my rheumy has changed my lupus diagnosis
to MCTD instead which is first cousin to lupus but I am still treated with same med... with surgery it
isn't the best time to have the lupus/MCTD problems and flares to deal with but have managed...
this forum has been a great source of information and support ... and the less alone feeling I have
and posted in my first post still holds true

========================================================================

June 10 - 2007

I have been wandering around this board reading and trying to figure where to put this...
I have an AN that was found in August 2004 ....3mm and  it didn't grow from then til Oct 2006 but due
to sudden increase in dizziness went in for new MRI in April and found it had hit accelerated growth
and is now pear shape pushing against my brain... I have 40% hearing loss in the right ear, have had
tinnitus since childhood so can't blame that on AN... some twitch to eye and numbness in cheek...

My surgeon told me I could still check out radiation...but the doctor I was sent to that does it said
due to lupus he would rather not as the tumor can become a stick spongy mess ( his term)
and not heal and then require open surgery anyway...So going Trans lab last of month....the neuro
surgeon thought that radiation would be less stressful and not stir up lupus... I had a hysterectomy
in March and it brought on a very bad flare of lupus that put me in bed for about 4 weeks... the lupus
flare was worse than the surgery  ... now they have come back with an option to do radiation over
20 or more treatments in smaller doses... but if I start to flare due to treatments they will stop and
I will have to go for surgery... just the 2 hours drive up and 2 hours back to and from Nashville 20 days
in a row  would be stressful enough to trigger a flare of lupus

Anyone with lupus and AN?.... I have to come off my RA and some lupus meds before surgery as
they can increase bleeding...and due to the sudden growth don't really have any wait and watch time left...
Someone on the lupus forum I belong to pointed me to this place...

Want to say thanks for all of the things people have shared here... makes me feel less alone ...

[GM]

Although I'm not a hero member or super hero member (mega posts).  I'm actually the very first post on this site. 

I was a member before it got the facelift that it currently has.

 Great New Format...welcome back!
« on: February 22, 2005, 09:53:59 PM »

Gary