Author Topic: newly diagnosed in Western Massachusetts  (Read 9615 times)

tsl

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newly diagnosed in Western Massachusetts
« on: January 16, 2007, 11:10:19 am »
Hii,
I just joined this support group today.  The posting from ELLID especially caught my attention because of living so close to my town.

I just got my diagnosis in late December and slowly reality is setting in. 

I'm trying to get a grip on my anxiety and feeling so overwhelmed.

I was hoping to send a message to ELLID to see if he/she would be willing to share some experiences with me about the Drs. he/she has seen in this area but apparently am not doing something right.

So, ELLID, if you see this message and would reply to me I'd really appreciate it very much.

To everyone else:  I can tell that you are all so very special.
-tsl
AN diagnosed Dec 2006
Approx. size 9 x 6  x 4 mm
Proton Beam radiosurgery wtih Dr. Jay Loeffler (radiation oncologist) and Dr. Paul Chapman (neurosurgeon) at Mass. General on Nov.2, 2007

krbonner

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Re: newly diagnosed in Western Massachusetts
« Reply #1 on: January 16, 2007, 11:55:39 am »
tsl,

Click on Ellid's username to go to her profile, then click on the link that says "Send this member a personal message."  That should get it to her.  I know she was consulting with doctors in Boston and Worcester, but don't know what her final decision has been as far as treatment goes.

There are several of us here from MA.  Can you give more details about your diagnosis?  What are your symptoms?  How were you diagnosed?  How big is your AN?  Where are you being referred to?

Are you willing to come into Boston for consultations?  Dr. Michael McKenna (my neuro-ENT) at Mass Eye and Ear Infirmary has an AN caseload in the many hundreds, and doesn't seem to push automatically one kind of treatment over another.  He works with a couple of different neurosurgeons at Mass General Hospital (where I had surgery) when surgery is required, as well as a radiation oncologist.  There are also other radiation oncologists with lots of AN experience at Beth Israel, Brigham&Women's, and down in Providence, RI.  I've heard mention of doctors in Worcester, too, but don't know much about them.

It's hard to get past the anxiety - I certainly remember it well.  Please continue to post and ask questions, and we'll all be here to help you manage this diagnosis in a way that's right for you.

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Joef

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Re: newly diagnosed in Western Massachusetts
« Reply #2 on: January 16, 2007, 12:06:43 pm »

Welcome to the Northeast AN club... we get together a couple times a year for lunch .. keep an eye out for it ..

I've heard nothing but good things about Mass General .. you'll be in good hands...
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Ellid

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Re: newly diagnosed in Western Massachusetts
« Reply #3 on: January 16, 2007, 12:08:02 pm »
Hii,
I just joined this support group today.  The posting from ELLID especially caught my attention because of living so close to my town.

I just got my diagnosis in late December and slowly reality is setting in. 

I'm trying to get a grip on my anxiety and feeling so overwhelmed.

I was hoping to send a message to ELLID to see if he/she would be willing to share some experiences with me about the Drs. he/she has seen in this area but apparently am not doing something right.

So, ELLID, if you see this message and would reply to me I'd really appreciate it very much.

To everyone else:  I can tell that you are all so very special.
-tsl

Here I am - ask away!  Where do you live?  Maybe we could have a Western Mass meeting at some point.

As for doctors...I just saw Dr. Mason at Baystate Medical Center.  He's young, very knowledgeable, and didn't try to push me into anything (although I think he has a preference for radiation over surgery).  I also saw Dr. McKenna at Mass Eye and Ear and was *extremely* impressed by him and his staff.  He has a slight preference toward surgery but will refer me to any specialist I wish.  Either of them would be a good place to start, depending on the size of your tumor.

I'd also strongly urge you to get the ANA's information packet if you haven't already.  It's an excellent place to start.  There's some really crappy information out there and the ANA's pamphlets can help you sort it out.

It's not the end of the world.  Really.  It's scary, yes, but you'll be fine, I'm sure of it.

Peace -

Ellid/Lisa
Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.

ppearl214

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Re: newly diagnosed in Western Massachusetts
« Reply #4 on: January 16, 2007, 12:47:25 pm »
Ok, what gives?  Massachusetts and our AN's?  :o  I guess we are a rare breed out here!  did they taint the MWRA water or what?  ???

tsl, welcome! First and foremost... welcome.. and know that you are certainly not alone... as you can see, there are many New Englanda's here and all glad to help.

As with any new diagnosis in life (for me, I have a trifecta.. the AN is only an inkling to me).... we go through the different stages of trying to accept what has been dealt to us. We deny it, many say "why me?".... we learn to come to grips with the reality of what is going on...

...and I have to tell you... 1 year ago, when I went from "watch/wait" to decision making process... oh, I was sooooo in the same shoes. Reaching out to everyone here, asking a zillion and 1/2 questions... learning as much as I could. It did get to the point it became overwhelming... but... for me.... I finally took a step back... I took a VERY deep breath... and I removed my blinders to see that....1.  This is benign and not a death sentence...2.  That my family and friends were all there, rallying for me.... 3.  That I found this forum board and thank gawd I did... It was fantastic to know I was not alone in these shoes.....and the friendships I have established here, well, words cannot express my gratitude to all those here... 4.  That I knew by becoming my own best patient advocate, I was to learn as much as I could so I could make a well-informed decision for me and my circumstances..... and last but not least... 5.  Never regret or look in heinsight of any decision I make.

We're here for you... if you need us.. and even on those days you don't.  You're stuck with us now! :)

Hang in there... and would love to meet you at our next brunch... hopefully March/April in Worcester at Maxwell's... (you gotta check out the Mimosa/Bloody Mary's included in the cost and the hawt thang working the omlet table!)

Be well.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Ellid

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Re: newly diagnosed in Western Massachusetts
« Reply #5 on: January 16, 2007, 06:25:13 pm »

Hang in there... and would love to meet you at our next brunch... hopefully March/April in Worcester at Maxwell's... (you gotta check out the Mimosa/Bloody Mary's included in the cost and the hawt thang working the omlet table!)

Be well.
Phyl


Someone can have my mimosa/bloody Mary because I don't drink...but that looks like a *very* fine brunch.  And about the hottie working the omelet table...sounds interesting AND I'm single!  :D

Lisa
Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.

ppearl214

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Re: newly diagnosed in Western Massachusetts
« Reply #6 on: January 16, 2007, 07:15:23 pm »
jane and I will flip a coin for the bloody mary.. and looking forward to meeting you.  They really do a nice brunch.....

Phyl


Hang in there... and would love to meet you at our next brunch... hopefully March/April in Worcester at Maxwell's... (you gotta check out the Mimosa/Bloody Mary's included in the cost and the hawt thang working the omlet table!)

Be well.
Phyl


Someone can have my mimosa/bloody Mary because I don't drink...but that looks like a *very* fine brunch.  And about the hottie working the omelet table...sounds interesting AND I'm single!  :D

Lisa
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Ellid

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Re: newly diagnosed in Western Massachusetts
« Reply #7 on: January 16, 2007, 08:31:39 pm »
jane and I will flip a coin for the bloody mary.. and looking forward to meeting you.  They really do a nice brunch.....

Phyl


This I want to see!
Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.

Obita

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Re: newly diagnosed in Western Massachusetts
« Reply #8 on: January 16, 2007, 08:54:57 pm »
It does seem like there are alot of eastern ANs popping up lately......jeez, the upper midwest is pretty quiet.....Me, Denise, Cheryl R.......thats about it.... 
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Obita

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Re: newly diagnosed in Western Massachusetts
« Reply #9 on: January 16, 2007, 09:00:12 pm »
I forgot to say hi tsl and welcome!!

We are all here for you.  We are one big happy family and the best part...... WE ALL UNDERSTAND.

See you around the forum, Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Cheryl R

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Re: newly diagnosed in Western Massachusetts
« Reply #10 on: January 17, 2007, 10:59:12 am »
Kathy,you got me to thinking about how many Iowa ANers I have come across.   In my almost 6 yrs I have come across 12.     All but 2 was thru this site or the old version and most just passed thru briefly.  2 have become good friends.   Fred and Susan who just had her surgery at HEI are also Iowans and aren't counted in the 12 above.          All but one had surgery,most at the Univ of Iowa.                I also have 2 Wisconsin AN friends and I have got to meet one of these. The other WI gal had her surgery at Iowa also.           Have actually met 5 of the Iowa ones.                  2 of the 12 are NF2ers.        I also have other AN friends  who live in other states but have an Iowa connection by way of living here at one time or had their surgery at U of Iowa.
     Small world.                               Cheryl R
                                                     
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

tsl

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Re: newly diagnosed in Western Massachusetts
« Reply #11 on: January 17, 2007, 01:06:26 pm »
tsl,

Click on Ellid's username to go to her profile, then click on the link that says "Send this member a personal message."  That should get it to her.  I know she was consulting with doctors in Boston and Worcester, but don't know what her final decision has been as far as treatment goes.

There are several of us here from MA.  Can you give more details about your diagnosis?  What are your symptoms?  How were you diagnosed?  How big is your AN?  Where are you being referred to?

Are you willing to come into Boston for consultations?  Dr. Michael McKenna (my neuro-ENT) at Mass Eye and Ear Infirmary has an AN caseload in the many hundreds, and doesn't seem to push automatically one kind of treatment over another.  He works with a couple of different neurosurgeons at Mass General Hospital (where I had surgery) when surgery is required, as well as a radiation oncologist.  There are also other radiation oncologists with lots of AN experience at Beth Israel, Brigham&Women's, and down in Providence, RI.  I've heard mention of doctors in Worcester, too, but don't know much about them.

It's hard to get past the anxiety - I certainly remember it well.  Please continue to post and ask questions, and we'll all be here to help you manage this diagnosis in a way that's right for you.

Katie

Many thanks to all who responded to my posting.  I am VERY GRATEFUL.
The answers to your questions.  My initial symptom was some hearing loss in my left ear and a general feeling that my ears were blocked.  At first I thought that it was just my imagination.  Then there seemed to be an indication that I had some fluid in my ear.  The physician's assistant that I saw said to give it a few weeks to clear up.  After waiting several weeks for it to clear up, my friends told me it was time to see a specialist. 

It took some time to get an appt, but he was great (Dr. Schreibstein of Spfld, Mass.) The day of my appt they tested my hearing.  He could tell right away that I didn't have fluid in my ears.  He sent me for a MRI and then things happened fast.  He called within a few days of the test and told me that I had an acoustic neuroma and stressed that it was typically benign.  He then referred me to his partner, Dr. Theodore Mason.  I was able to see him within just a few days.

Dr. Mason was so very nice and patient. I think that he is wonderful. He told me that my neuroma was about 7 x 5 mm in size.  He told me that I was an excellent candidate for 3 options:  wait and see, surgery, radiation (gamma knife).  He patiently explained to me what a neuroma is.  He also told me that he could give me names of 2nd opinions.  He also highly recommended this website.

At this point I've lost about 30% of my hearing in my left ear.  Dr. Mason scheduled me for a balance test and I have a follow up appt with him this month.

Slowly but steadily I'm beginning to understand the magnitude of this diagnosis.  I'm doing reading on this condition and trying to hold my fears in check. 
AN diagnosed Dec 2006
Approx. size 9 x 6  x 4 mm
Proton Beam radiosurgery wtih Dr. Jay Loeffler (radiation oncologist) and Dr. Paul Chapman (neurosurgeon) at Mass. General on Nov.2, 2007

ppearl214

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Re: newly diagnosed in Western Massachusetts
« Reply #12 on: January 17, 2007, 01:14:52 pm »
tsl, thanks so much for sharing this with us all... and sounds like you are doing everything correct and with a deep breath... hang in there.

Question to you.... did your dr not note to you other radio-options, such as Cyberknife, FSR/Novalis and Proton Beam?  Just curious.

thanks again!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Ellid

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Re: newly diagnosed in Western Massachusetts
« Reply #13 on: January 17, 2007, 06:37:27 pm »
tsl, thanks so much for sharing this with us all... and sounds like you are doing everything correct and with a deep breath... hang in there.

Question to you.... did your dr not note to you other radio-options, such as Cyberknife, FSR/Novalis and Proton Beam?  Just curious.

thanks again!
Phyl


When I spoke to Dr. Mason, he mentioned that there's a new gamma knife center opening up at Baystate, and that he was in line to be trained on it in the next few weeks.  He did state that Dr. Loeffler at Mass General does excellent work, primarily with the proton beam these days (ironically enough, I walked past the entrance to the Proton Beam Center on my way to see Dr. McKenna last week...and Dr. McKenna also offered to refer me to Dr. Loeffler).

Lisa
Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.

Obita

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Re: newly diagnosed in Western Massachusetts
« Reply #14 on: January 17, 2007, 08:39:43 pm »
Cheryl R:

That is an awful lot of ANs in Iowa.  What is with Iowa and Massachusetts then???

I did remember another Minnesota AN, Pattyprince........she was on briefly, had surgery and is now doing fine.

Hi Fred and Susan!!  I hope you can get home soon.

And Ellid/Lisa, good luck with your follow up appointment.  Hopefully the shock is wearing off and the fear is in check.

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

 


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