Author Topic: Need to make a decision  (Read 4002 times)

purduemom

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Need to make a decision
« on: January 01, 2014, 12:00:45 pm »
We have been monitoring my AN for about 4 years. Since then it has doubled in size to about 2 (cm?) My surgeon feels that I should make a decision this summer as to  treatment. I am 61 and he was hoping it would stop growing but it hasn't. Adding to the mix is the fact that my husband's company is closing at the end of 2014 so we insurance coverage is unknown. Does anyone know Dr. Daniels in Grand Rapids MI? We were referred to him and really like him but wondered if anyone has had treatment through him or anyone else in Grand Rapids area?

Pam Fraley

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Re: Need to make a decision
« Reply #1 on: January 01, 2014, 09:14:12 pm »
I am Wait and Watch with Dr. Arts at the University of Michigan and I can't say enough good things about him and his team.  There are others on this site who have had surgery done at UofM by him or another doctor on his team.  Hopefully, they will also respond to your inquiry.  Feel free to send me a message if you have any further questions.
6mmx4mm a/n (left IAC)
8-9mm meningioma (right cavernous sinus)
Diagnosed 2/5/2013 MRI
Wait & Watch -  Dr. Arts, University of Michigan
MRI scheduled for 10/22/2013
No change, continue w&w, repeat MRI in 6months

SDTom

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Re: Need to make a decision
« Reply #2 on: January 02, 2014, 01:38:59 pm »
Not to scare you - but you may want to get a second opinion. I had my first surgery in a smaller hospital with (I think) a less experienced surgeon. I am alive but it did not turn out well. If you can swing it I would go with a second opinion. There is a lot of good info on this board. As hard as it is read up.
Tom
June 2011 3.8 cm tumor debulked.
July 2011 Hydrocephalus, Meningitis.
August 2011 shunt installed.
Sept 2011 28 rounds of radiation.
Things kept getting worse
March 2012 tumor removal at Mayo clinic

ASG

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Re: Need to make a decision
« Reply #3 on: January 02, 2014, 01:45:52 pm »
I just want to second what Pam said about the surgical team at University of Michigan.  I met with Dr. Thompson, the neurosurgeon who teams up with Dr. Arts or Elkashlan, and was just incredibly impressed.  He's a nationally reknown brain surgeon who's also done lots of ANs and boasts an impressive success rate.  When I met him he said that House has tried to hire him away twice!  I ended up going with GK but if I had picked surgery I would've gone with Thompson at U of M all the way.
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

leapyrtwins

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Re: Need to make a decision
« Reply #4 on: January 02, 2014, 02:22:37 pm »
I don't know the particular doctor you mention (I'm in Illinois and had my surgery here), but I do know that both the University of Michigan and MEI (Michigan Ear Institute) are excellent places to have AN treatment.  Lots of experienced docs @ both places.

Best,

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

rvb755

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Re: Need to make a decision
« Reply #5 on: January 05, 2014, 03:00:17 pm »
Hi Purduemom.  I met with Dr. Daniels after being diagnosed with a 5cm AN in 2011.  I really liked him as a Dr. but due to the size of my tumor he said they would do a 2 stage surgery for me.  The first surgery would de-bulk the tumor and the second 1 year later would remove the rest.  I also sent my MRI to House in LA and ended up flying to LA for surgery and was very happy with the care I got out there.  Dr. Daniels has been doing follow up for me here after surgery, which I very much appreciate.  I'm sorry I can't comment on U of M or MEI, since I did not contact either one prior to surgery.  My timeframe was quite compressed due to the size of the tumor - I was diagnosed in July of 2011 and had surgery in August of 2011 so I made my decision quickly after talking to House.  I also met with one of the Doctors that Dr. Daniels works with during surgery but I do not recall his name.  I was less impressed with him than with Daniels.
Rick
3.2cm x 5.0cm x 3.3cm Left side AN
Translab with Dr. Friedman/Dr. Schwartz at HEI
on 8/24/2011
100% tumor removal, no facial nerve damage, SSD

Denise S

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Re: Need to make a decision
« Reply #6 on: January 25, 2014, 04:08:56 am »
Yes I am familiar with him but Not as my tumor surgeon.  He DID do the surgery for my BAHA device and I am currently going through some issues and he is helpful but going back to MEI for another opinion.
You said your Surgeon recommended removal, what type of surgeon? 
If maybe recommend getting a couple of opinions from different neurotologist! 
Where are you from?
I'm from Ludington!
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

purduemom

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Re: Need to make a decision
« Reply #7 on: January 25, 2014, 12:19:57 pm »
I'm south of Grand Rapids. I am currently requesting a second opinion from UofM, just to see what soneone else has to say

grace

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Re: Need to make a decision
« Reply #8 on: January 26, 2014, 12:34:58 pm »
 Dear AN friends, thank you in advance. I cannot even get  a ride to Hartford or New Haven for heh appts ( hate to ask for a whole day of a person I have not connected with for  awhile) I lost contacts when I lost my career. But still was wondering if House takes care of post op? Do you stay in  the hospital?Do thye have a place(bed ) my husband can stay with me? Does B/C B/S Anthem pay? The AN I have is small as of Oct but as of Jan 1 I have vertigo, and the hearing seems almost gone. Not sure what to do . Wanted to wait and wath. I had  acold that got into my mid ears and allergiesand now this is the result. With Antibiotics and 5 days of Predizone my ENT say it is not from teh cold or... but to see an AN expert. I am afraid - I don't have the mental/emotional to go thru with t cause of 2 prior botch jobs that happened  with the only 2 other surgeries I ever had. My life has changed since the AN  leaving us no money for much elseand I am isolating more and more. I have great insurance but not wanting to be left with another headache that can last a month... and the other effects I have been reading about... I pay 615. a month just for my insurance and yet I am unable to get any massage or pain relief -only drugs and surgury. Has anyone experienced  a cold changing your hearing and balance this much??? Thanks in advance ... Grace

neetze1

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Re: Need to make a decision
« Reply #9 on: January 28, 2014, 02:04:10 pm »
Hi Grace,
I don't get on this board much but saw your post asking about HEI.  If you have surgery at House, you can stay at Seton Hall which is connected to the hospital via an underground "tunnel" or hallway.  The fee is much less than a hotel in Los Angeles.  The rooms are nothing fancy but more than adequate and comfortable.  The fee was about $80 a night when I stayed a year ago.  If you have surgery there, it is a requirement that you have someone stay with you to care for you after your hospital stay so your husband can stay there while you are in the hospital and when you get out.  You will need someone to assist you with your meds--you will have a few of them--and to get you your meals, help you walk etc.
My insurance was Horizon BC/BS and was accepted as in-network so I did not have out of pocket expense for the hospital other than my copay.  The expense of flying, car rental, Seton Hall and my out patient pharmacy and food was of course on us. You should plan on staying about 2weeks.  They will see you for follow-up and remove your stitches before clearing you to fly back home.  They want to make sure you don't have a cerebral spinal fluid leakage before they let you leave.  I was there about 11 days. 
I found it was much faster for me to schedule with them than navigate the medical visits with all of the doctors in my local area.  I flew in on a Monday, had my preop doctor visits and labs, EKG, etc on Tuesday and surgery on Wednesday.  My surgery was over 12 hours--I was in ICU for less time than I was in surgery-then I was in the hospital for 3 days then released to Seton Hall.  It can be boring if you don't have a car to get around as the neighborhood is not safe for walking too far.  My husband was able to drive to pick up food (you can go to the cafeteria but we wanted something different) and to do some site seeing.  Good luck to you.
Anita
Anita
South Jersey
Translab 3/20/13 at HEI for 3.5 centimeter
Dr. Luxford, Dr. Lekovic, Dr. Stefan