Author Topic: Newly diagnosed in Michigan  (Read 3815 times)

bscan1

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Newly diagnosed in Michigan
« on: February 21, 2011, 01:03:52 pm »
I am new to this forum, I was diagnosed in November with a small acoustic neuroma, if I'm stating this correctly, it is .7cm.  I am still weighing the options of surgery or radiation and the surgeon I have met with was Dr.Michael Siedman out of Henry Ford and Dr. Rhu (radio oncologist) also from Henry Ford.  I liked them both but want to get a second opinion and was wondering 1) if anyone has some recommendations in Michigan and 2) if anyone is familiar with either of these doctors.
I'm 40 years old with a 6 and 3 year old and work part time so our life is pretty hectic and would really prefer to stay local for treatment but I also want to make sure this is the right option.
Any recommendations would be greatly appreciated.
Thank you,
Denise

CHD63

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Re: Newly diagnosed in Michigan
« Reply #1 on: February 21, 2011, 01:20:30 pm »
Hi Denise and welcome to this forum of caring, supportive friends!

Generally with ANs less than 1 cm, we often use mm so yours would be 7 mm or .7 cm.  Since it is still quite small, you have time to weigh your options and get additional opinions.  Much depends upon how severe and/or progressive your symptoms are.  Tell us a little bit more about your symptoms.

You would do well to send for the free information packet from ANA.  See:  http://anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195  It contains a wealth of information and much reassurance.

I am not from Michigan but we have several on the forum who are, so hopefully they can shed some light on Dr. Siedman, Dr, Rhu, and any others in that area.  Many of us traveled a distance away from where we live for the best treatment.

Take a deep breath.  We are here to walk with you through this decision-making, treatment, and post-treatment of your AN.

Let us know how you are doing.

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

ANcoleader

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Re: Newly diagnosed in Michigan
« Reply #2 on: February 21, 2011, 09:26:33 pm »
I am one of the Co-Leaders in Michigan and would be happy to talk to you directly....I can also put you in contact with some of our group who are on our share and care list.....you can contact me at 248-390-4614 between 11 am and 5 pm this week and we can further discuss some of yur concerns and other contacts.


Gail

iluuvpups

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Re: Newly diagnosed in Michigan
« Reply #3 on: February 22, 2011, 08:54:55 am »
Hi, Denise.  I'm from Michigan.  I live in Canton.  I've heard of the Henry Ford doctors you mention, but can't speak personally about them.  When I was diagnosed, I got three consultations.  One was from Dr. Steve Telian from the University of Michigan.  Another was with Dr. Jack Kartush at the Michigan Ear Institute.  I also took advantage of the free consultation by phone from the House Ear Clinic in Los Angeles.  (You send them your MRI and your report so they can review it ahead of time.) 

I decided on surgery.  I too did not want to travel out of state, so I ended up going with Dr. Kartush.  I felt my experience was a good one.  Dr. Kartush is very knowledgeable and I felt I was in capable hands.

I second Clarice's advice about getting the information packet from ANA.  It will have things like a list of questions you should ask the doctor and an explanation of the tumor.

I know you're weighing surgery vs. radiation.  However, there is one more option you might consider.  That's "Watch and Wait".  With a tumor as small as yours, an option is to do nothing right now and to just get regular MRIs to see if it grows.  I am not a doctor and am certainly not recommending you go this or any other route.  I just wanted you to know that it's an option some choose.

I wish you good luck on your journey.  The people on this board are extremely supportive and knowledgeable.  I suggest doing searches on topics and reading as much as you can to bring yourself up to speed.  Feel free to send me a private message if you'd like to talk offline.

--Carol Ann
Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

Denise S

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Re: Newly diagnosed in Michigan
« Reply #4 on: February 22, 2011, 10:07:59 pm »
Hi Denise.....GREAT NAME  ;D   And another one from MI (I'm from Ludington, right over on the Lake Michigan side in the middle)

Since you might be closer to the Detroit area, I too like  Carol Ann above recommend Michigan Ear Institute in Farmington Hills (also have offices in Novi). 

I did the watch & wait for awhile, but mine was growing pretty fast and for many reasons I opted for surgery (and never regret that decision for me).  I was also hoping to preserve my hearing.  We went with a Middle Fossa approach.   The surgeons thought my hearing was preserved, but then got some post  op swelling and issue and the hearing was never returned.   

You can message me too at any time  ;)      Like the others said though....1st thing...GET all the information packets from ANA

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

e m

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Re: Newly diagnosed in Michigan
« Reply #5 on: March 09, 2011, 11:33:41 pm »
Hello Denise
I'm from Michigan and today is 4 weeks since my surgery at HEI.  My AN was 1 cm and I would be happy to talk with you.

My Doctors were Friedmand and Schwartz.  They got the tumor, saved my hearing, and facial nerve.   Ella from Southfield.

 


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