Author Topic: Got my medical records  (Read 5660 times)

Ellid

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Got my medical records
« on: December 16, 2006, 07:50:44 pm »
And most enlightening they were...since they were sent to me without a signed release.  Bit of a surprise, but I'm not arguing.

However, I found out that the MRI report *did* give the dimensions of my AN:  1.6 x 1.4 x 1.3.  I was expecting something a lot bigger based on my ENT's statement that it was a "large" AN.  I am to pick up the CD of the MRI itself tomorrow and yes, I do plan to look at myself, if only to see what the inside of my head looks like :)  I have no idea whether the size matters to what treatment might be best for me, but at least I know how big it is now.

I also got a nice package of information from the ANA, including a very detaile walk through of both radiostatic surgery and microsurgery.  It's very reassuring and has calmed a lot of my fears.  I have appointments with Dr. McKenna in Boston on January 8th and Dr. Mason in Springfield on January 16th, and I'll be making a decision about my care after I've spoken to both of them.


I finally want to thank the kind people who e-mailed mand gave me more information - I really appreciate it!  I'm sure I'll have more questions over the next few weeks....

Happy Channukah to those who celebrate it, and peace to all.

Ellid
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.

Battyp

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Re: Got my medical records
« Reply #1 on: December 16, 2006, 08:56:22 pm »
Ellid no signed release...they can be sued  LOL
I'd say from the size you stated you have all treatment options.  Somewhere (I think it was in one of the ana books?) I saw the sizes for small vs. large tumors.  Yours sounds medium to me  ;D

Ellid

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Re: Got my medical records
« Reply #2 on: December 16, 2006, 09:10:14 pm »
*nods*  I was wondering if radiosurgery was still an option, and it sounds quite possible.  I definitely look forward to hearing what Dr. McKenna says - he was a great reputation and he trained at House, so I think I'll be in good hands.

Ellid
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.

Ellid

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Re: Got my medical records
« Reply #3 on: December 16, 2006, 09:16:52 pm »
And about the medical records...I was shocked.  I work in a mental health clinic and we would NEVER send out records like that.  Glad I probably won't be going back to them unless I eventually decide on a hearing aid...and even then I'll likely ask for a referral from Mass Eye & Ear!

Ellid
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: Got my medical records
« Reply #4 on: December 17, 2006, 07:03:00 am »
Good morning Ellid:

Good news in the size department.  Here is a link that shows the growth pattern of an AN:

http://anworld.com/stages/

You will be able to see it very well yourself tomorrow.  They glow like the sun on the films.  We like to see them too if you care to post it.

Good luck and Happy Channukah to you. 

Kathy

ps:  mine was 2.5 cm.  It had the distinctive pear shape to it as it had grown well out of the IAC.
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Lorenzo

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Re: Got my medical records
« Reply #5 on: December 17, 2006, 08:32:44 am »
Ellid,

Mne was a lot largery than that, 2.6cm at the largest dimension, and I had CK. Maximum size for radiosurgery (in general) is around the 3cm mark, depending on location. Mine was touching and slightly pushing on the brain stem.
Ciao
Lorenzo

krbonner

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Re: Got my medical records
« Reply #6 on: December 17, 2006, 11:34:56 am »
You're doing the right thing!  You'll be getting opinions from some very experienced doctors. 

Do you use Route 2 to drive to Boston?  I'm right at the intersection of Route 2 and 495 - let me know if you'd like a coffee break on your long drive!  :-)

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

Ellid

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Re: Got my medical records
« Reply #7 on: December 17, 2006, 02:49:11 pm »
Bruce - *whew*  I thought as much.  It's very comforting, since I was getting really nervous about brain surgery.  I'm willing to take the risk of recurrence with radiosurgery - these things grow pretty slowly, so I'll have time regardless.

Katie - let me check my schedule, but I'd love to get together sometime.  You're on the AN "willing to talk" list so I was planning to call you over the holidays anyway.  *hug*


And oh, I found out why the ENT said it was a large AN - the radiologist said so in his report.   Makes me think that he doesn't see many ANs....

Ellid/Lisa

P.S.  How do I upload a picture of the MRI?  The AN is very clear, and the rest of my brain is pretty much an average brain.  The oddest thing is how eyes look on an MRI...sort of like jellyfish...
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: Got my medical records
« Reply #8 on: December 17, 2006, 04:27:41 pm »
Hi Ellid:

Go back to the welcome page and there are instructions in the first section "A message from ANA" - Captain Deb put a very good post on there of "how tos" and it includes posting pictures.

Yes, the eyeballs are wierd!!  Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Sheryl

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Re: Got my medical records
« Reply #9 on: December 17, 2006, 05:20:55 pm »
[Yes, the eyeballs are wierd!!  Kathy
Quote

You should see the eyeballs after cataract surgery!!! 
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

krbonner

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Re: Got my medical records
« Reply #10 on: December 18, 2006, 10:32:04 am »
And oh, I found out why the ENT said it was a large AN - the radiologist said so in his report.   Makes me think that he doesn't see many ANs....

Most docs don't see many.  The radiologist who read my original MRI up in Nashua NH said I had a 3.8cm AN, so McKenna rearranged his schedule so he could see me asap.  Turns out it was only 1.8cm at the time and there wasn't a big rush.   ::)  But my entire family was in panic mode there for a few weeks (and my youngest was only 4 months old at the time!).  This is one of those things where experience really does count! 

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

ppearl214

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Re: Got my medical records
« Reply #11 on: December 18, 2006, 10:34:19 am »
Ellid and katie... if you both venture down Rt 2, I'll be at Rt 128 and I-93, heading into Boston. :)

Ellid, sounds like you are doing all the right things.. hang in there.

Happy holidays to you all!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pearchica

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Re: Got my medical records
« Reply #12 on: January 23, 2007, 11:06:24 pm »
Yeah I love the whole CM size thing- I finally got clarification from Stanford today- I have a 2.5 CM - beginning to push the cerebellum, but not too far into the inner ear canal.  So like real estate it's LOCATION, LOCATION, LOCATION, and square footage (in our case mm or cm...). Good luck, Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys