Author Topic: Newly diagnosed in Michigan  (Read 4975 times)

bscan1

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Newly diagnosed in Michigan
« on: February 21, 2011, 01:23:40 pm »
I was diagnosed in November with a small tumor (.7cm I think is correct).  Of course, I totally freaked out, I had been having horrible headaches for a couple months which is uncommon for me and had an MRI, only to discover the tumor.  I saw Dr. Michael Siedman with Henry Ford and he was awesome, he is a surgeon and quite frankly the surgery scares me to death so I am leaning toward the radiation.  I'm not sure on all the lingo yet but I also saw a radio oncologist also with Henry Ford, I think he's name is Dr. Ryu, also very nice.  He did not stear me in any direction and was pretty much discussing what the radiation does, it's the one time treatment where they put the halo on your head.

I did post on the physician forum for any recommendations in Michigan but also wanted to here.  Perhaps I'm a bit nieve but I'm thinking the one time radiation treatment is the best option for me but I also want to make sure that is the best long term solution too. I would welcome any feedback or insight..frankly I've just been putting this off because I'm scared to do anything.  The thing that's starting to concern me is I'm having mild headaches now pretty consistently, I have perfect hearing and otherwise would not have discovered this had I not had the headaches, which the doctors don't believe don't have anything to do with the tumor.

Just to tell you a little bit about myself, I just turned 40 (lucky me), have two children, a 6 and 3 year old and a very loving, supportive husband. I do work part time and since the radiation seems the least evasive option considering our circumstances, that's again what I'm leaning toward.

Thanks in advance to anyone that responds!
Denise

rupert

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Re: Newly diagnosed in Michigan
« Reply #1 on: February 21, 2011, 03:13:21 pm »

 Denise,

            My AN  was 2.2cm X  1.6cm.   I had Gamma Knife   (the one time treatment)  at the  University of Pittsburg Medical Center.   This type of treatment
usually has few complications and your out and about the same day,  although you may be a bit tired from time to time.   Although,   individual results may vary
As they say on these forums often.   I was pleased with the procedure,   and at this point  ( one year out)  couldn't be happier with the results.   Bryan

leapyrtwins

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Re: Newly diagnosed in Michigan
« Reply #2 on: February 21, 2011, 04:28:05 pm »
Denise -

if you are anywhere near MEI - Michigan Ear Institute - check them out.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Denise S

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Re: Newly diagnosed in Michigan
« Reply #3 on: February 22, 2011, 10:19:35 pm »
I know I posted on your other post.   Sometimes it is hard when people do post in 2 areas, BUT I completley understand being new and not being sure where to post either.

My opinion I didn't write on the other post (because I don't think you mentioned headaches) is that I don't think your headaches would be from the tumor unless is was considered large.   Be sure to read the posts under physicians and get the packets from the ANA!!!

Also, so you know, you can go to the top of this page and use the search engine and type in the name of the doctor you seen or are thinking OR even maybe the hospital.   Try multiple things to see what maybe you come up with.   That might give you some ideas of what others have wrote before.   I have researched this site many times  :)

Don't forget, feel free to message me anytime!!
Denise
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Mark241

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Re: Newly diagnosed in Michigan
« Reply #4 on: February 23, 2011, 04:52:43 pm »
Hi Denise, and welcome. Sounds like your AN is quite small, and that your doing your home work, which is great. Just be comfortable and confident in your decision. Best of Luck!
Mark
4cm C1  16hrs                 Barrows, Jan 06      NF2
3.5 cm  Right AN retro       Barrows, Oct 06   
Cranial Plate removal           UNM Nov 07
LP                                   Barrows  Jan,2011
Wound revision                 Barrows Feb, 2011
5mm left middle Fossa,  (2) 2mm spine w&w

jaylogs

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Re: Newly diagnosed in Michigan
« Reply #5 on: March 01, 2011, 09:24:54 am »
Hello Denise! Welcome to our little club! Sorry you had to find it, but I am very glad you did, as we are all a pretty good informative and supportive type of people here!  It's not fun going through this, but you will do just fine.  Educate yourself, get options and ask questions. If you need to vent, we are good for that on here too! We've all been (or are going through) what you are going through now.  Take care, and let us know how things go!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

GRACE1

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Re: Newly diagnosed in Michigan
« Reply #6 on: March 01, 2011, 10:06:27 am »
Denise,

Glad you found our forum.  I had GK in 2006 and have never regretted it.  One of the main reasons I chose it was because of the one-time aspect.  Good luck with your journey.

Grace
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

moe

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Re: Newly diagnosed in Michigan
« Reply #7 on: March 01, 2011, 10:51:03 am »
Hi Denise,
Welcome to the forum :) Your tumor is small, you may be even able  to "wait and watch" for a while if you don't want to rush into the treatment. What does your doc say about that?

Think of it as a "mixed blessing" that you went in for a headache and they found this small, benign, slow growing booger. (yea, right. ::) )

It can be addressed and taken care of and you know it is there!!! (unfortunately).
Knowledge is power, and you will become very knowledgeable about your AN through all this.
Continue to let us know how things go, ok?
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

CHD63

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Re: Newly diagnosed in Michigan
« Reply #8 on: March 01, 2011, 11:45:59 am »
Hi Denise .....

I replied on your other post, but want to follow here, as well.

Be sure to keep us up to date on how you are doing and what you have decided to do ..... you have lots of new, caring, and understanding friends now!

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Jim Scott

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Re: Newly diagnosed in Michigan
« Reply #9 on: March 01, 2011, 02:45:04 pm »
Hi, Denise and welcome.

I underwent both surgery (retrosigmoid) and radiation (FSR) as a planned two-step procedure - and it was very successful.  Frankly, I would have went with just radiation but my AN was very large and pressing hard on my brainstem so surgery was imperative at that point.  The tumor was 'debulked' (thinned out) and it's blood supply severed.  The radiation was intended to 'finish it off'.  It did.  However, be aware that although it is non-invasive (no cutting), radiation is not risk-free.  Neither is surgery, of course but occasionally newly diagnosed AN patients want to opt for radiation without considering all the possible ramifications.  Please conduct diligent research before committing to anything.  Fortunately, your AN is small and you have the option (via semi-annual MRI scans) of simply observing it for growth  There are lots of folks posting here who have experienced very successful radiation procedures, including some of the moderators.  I'm sure they'll be adding to this thread.   We all wish you success as you attempt to determine how you'll deal with your unwanted AN and our members are eager to help and support you in any way they can.  Please consider utilizing their knowledge.

Jim   
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.