Author Topic: Response from House  (Read 12282 times)

leapyrtwins

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Re: Response from House
« Reply #15 on: February 16, 2012, 04:10:54 pm »
I feel very comfortable with the doctors I've been seeing at UPMC in Pittsburgh.  I don't feel like I'm just a number and I feel they are very knowledgeable.

This is VERY important.  You should have complete and utter confidence in your docs and feel like you matter to them.

I think you are on the right path.

Good luck,

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

Mei Mei

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Re: Response from House
« Reply #16 on: February 25, 2012, 06:45:47 pm »
Ditto to that.   I didn't feel that way at Hopkins.    When I went to the follow up at Hopkins, the resident said I wasn't interested in the BAHA surgery and he walked out of the room with out saying goodbye.   ALL  he was interested in was doing more surgery.    I know Jan likes BAHA and I love Jan, but I have Ehlers Danlos Syndrome and was suffering from pain in the skull and horrific headaches.   I couldn't have more surgery.   You have to trust your gut and go with it.   I didn't do that and didn't go out to Rick Friedman and that is a big regret in my life.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Mei Mei

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Re: Response from House
« Reply #17 on: March 20, 2012, 08:44:13 pm »
Dear Lisa,
I had that same phone call from Dr. Friedman who also recommended Middle Fossa and was also told to go to Dr. Kondziolka at U of Pitt for the CK.   The person who told me to do radiation had gone all the way to Germany for the CK and warned me never to do surgery as it would change my life.    I then listened to the doctor at Johns Hopkins who said that my tumor was in a place where I was at risk for stroke which put me in a tailspin.    I don't think he would admit that now and my nurse asked me today if I had someone with me when he said that.   I had my hard of hearing 98 year old father.    On Friday I had my third surgery to correct the problems coming from the first surgery.    I regretted not listening to the man that said go to U of Pitt or to Dr. Friedman who I don't believe is a salesman as House is a fine place for ANs but am concerned about his comment on radiation although I do believe that ANs might be caused in some part to EMFs or cell phones.   A member of our local support group is a surgeon at GW and when he found out he had an AN, he went to Dr. K on a THursday and was operating on the following Monday.  Not so for a surgical patient, but you do have choices.   I wonder  now what I would have done had I had it to do all over again.   I brought this up to my nurse practitioner who has proved to be a guardian angel in my recovery.   She said that radiation is not without it's side effects and from reading on this forum, that is true.   Dr. K also said at his Symposium speech,   "for those on the Watch and Wait list, what are you waiting for?"   Phyll is right, go with your gut and we will be behind you every step of the way.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

chloes mema

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Re: Response from House
« Reply #18 on: March 21, 2012, 06:42:10 am »
My gut is telling me don't do anything but I'm loosing more earing and having the same experience as others where different people are telling me to do different things.  For me it's very stressful and confusing.  But as a friend said, don't worry till they tell you to worry. 

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

lrobie

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Re: Response from House
« Reply #19 on: March 21, 2012, 08:09:55 am »
Karen,

Because my hearing continues to decline, I feel the need to make my decision.  I wish I would have made the decision in 2009 when I possibly wouldn't be experiencing the symptoms now.  However, now that it's time to make a decision I feel at a loss over what to do.  I lean toward surgery.  If that is what I decide, I want to wait until my son is done with his school year.  I guess I'm procrastinating a little.

Lisa 
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

mindyandy

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Re: Response from House
« Reply #20 on: March 21, 2012, 08:33:03 am »
Lisa
Whatever your decision is who/when etc. Only you can make it. You have to accept whatever decision you make. Whatever that is we are all here for you.  ;)

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

chloes mema

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Re: Response from House
« Reply #21 on: March 22, 2012, 11:13:18 am »
Lisa, after following your posts and questions they made me stop and reevaluate my situation.  When you posted about the AN totally filling the IAC and what would radiation do to the nerves I thought I need to get moving on my decision because so far (at least last MRI) it was in the IAC but not too big so need to arrest it before it gets too big.  Since following your posts I've decided on "interviewing" a doctor and a radio-oncologist after next weeks MRI.  Also, to send copies to several doctors across the U.S. for phone consultations.

Thanks to you and others for so much good information and encouragement.   ;)

Wishing you well in your endeavors.

Karen 
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

Chances3

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Re: Response from House
« Reply #22 on: March 22, 2012, 11:44:38 am »
Hi Lisa,

I had a Middle Fossa operation 17 months ago.  I chose surgery because I had severe and debilitating vertigo attacks of the full spin variety.  The frequency was increasing at an alarming pace - every 3-5 days. 
My first introduction to this site was 4 months after my surgery because I was frustrated by the slow recovery and I wanted some advice.  I never realized how many posts there are with people in the wait and watch mode.  For me, I felt that I had something growing in my head and I wanted the damn thing out.  My doctor had me see his associate to discuss radiation, but I was set on a surgical removal even though I met with the other doctor.  Being a veteran of operations, ( I have had three other prior surgeries unrelated to an AN ), I just figured this is no big deal.  Well I have to say that brain surgery can be challenging, but I made the decision that I wanted a surgical solution to my tumor.  I had a 1 year MRI last fall and I am clean, that was more important than the post op symptoms I struggle with to this day.  Having said all of that, I have read many many posts here on HEI and the doctors there.  It seems everyone has had good results, so it just doesn't make sense why this doctor would talk about radiation like that. 

What I also have learned from ANA, your medical decisions are yours to make.  The people who participate here have some very sound advice and opinions.  Many of them have been through quite a bit in their lives.  But at the end of the day, it's lonely at the top, so it's always up to you to make that decision.  My only suggestion is to learn as much as you can, speak with as many ANA friends as possible so that you are fully informed before you decide what to do.  If you are a person of faith, I would seek out God as well to give you guidance.  Sorry for the long post.

God Bless.

teresalpn

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Re: Response from House
« Reply #23 on: July 11, 2012, 10:01:54 pm »
First, let me say to all,  I am so glad I FOUND THIS FORUM.  I have been following my an for three years and it had been growin slowly until my last MRI my neurosurgeon wants to see me but he, appears very non-connected to the patient, very arrogant.  I am not happy with his very little talk in and out of the room vey quickly.  I know that he can make more money from several back surgeries than my 12 hour surgery.  I needed more tlc at that time, my mom felt the same..  My Ent recommended a second opinion.  So I have an appt. at Vanderbilt in Nashville.  The staff has been very supportive an welcoming.  Hope all goes well. Does anyone have a opinion about this hospital. and Dr. William Bennet?! 

Thanks for your input

millie

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Re: Response from House
« Reply #24 on: July 21, 2012, 07:33:23 am »
Hi!
I think I received a response from House last night!  I plopped my MRI's in the mail next day delivery on Monday July 16th and the call came from St. Vincent's last night.  However!  My husband was on the phone and did not know the number when it appeared on caller ID so he did not break his conversation.
I hope they call again.  I will try calling them Monday.
I am impressed with the promptness.
Will post what they say and who I speak with, of course.
MIllie

mindyandy

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Re: Response from House
« Reply #25 on: July 21, 2012, 11:23:40 am »
Millie
House is very prompt to read your MRI & respond. Keep us posted!!!

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

 


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