Author Topic: HELP!!!!!!!  (Read 3177 times)

sues1953

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HELP!!!!!!!
« on: January 22, 2010, 08:47:30 pm »
Hi All,

I need some imput.  I just spoke to Dr. Wilkinson at House Ear Clinic in CA ( I live in Michigan)

First of all he told me that the size of my tumor was not as large as I was told by my doctors here, 3.2 vs 2.2 but the auditory canal is pretty much filled with tumor, which makes it very difficult to save hearing even if you go with retrosigmoid approach.

I am pretty convinced that the Translab is the way to go and also that HEI is where I want it done.   

Here is my Question.

I forgot to put attention Dr. Slattery on my films that I sent.  Dr. Slattery's nurse/secretary called me just two days ago asking where my info was and I told her that I had just sent them 2nd day air.

Should I call Dr. Slattery and see if I can get his opinion as well?  I at least need to let him know that I spoke to Dr. Wilkinson. 

I am just so scared, and I want to do the best thing.  Help!!!!!    (My husband is having a complete meltdown he's no help).



3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

lori67

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Re: HELP!!!!!!!
« Reply #1 on: January 22, 2010, 09:20:53 pm »
Hi Sue!

If you are feeling scared and unsure, then you should absolutely ask the other doctor or as many other doctors as you can find for an opinion.  You need to feel confident with your decision and if that takes asking 20 different doctors, than that's what you should do.

I'm sure Dr. Slattery will not have a problem with offering his input.  Yes, you should tell him you already got input from the other doctor, but I don't think he'll have an issue with that.  At least, he shouldn't have.  I can't imagine any doctor expecting patients to take something like this lightly.  And they say two heads are better than one anyway!

Good luck.  Tell your husband he's not allowed to have a meltdown yet.  I told mine if he planned on having a meltdown to do it while I was in the OR so I didn't know about it.  I'm all heart, what can I say?   :D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

leapyrtwins

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Re: HELP!!!!!!!
« Reply #2 on: January 22, 2010, 09:26:39 pm »
Sue -

I sent you a PM at least a week ago regarding doctors.  Did you read it?

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

4cm in Pacific Northwest

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Re: HELP!!!!!!!
« Reply #3 on: January 22, 2010, 09:33:28 pm »

Here is my Question.

I forgot to put attention Dr. Slattery on my films that I sent.  Dr. Slattery's nurse/secretary called me just two days ago asking where my info was and I told her that I had just sent them 2nd day air.

Should I call Dr. Slattery and see if I can get his opinion as well?  I at least need to let him know that I spoke to Dr. Wilkinson.



They are all professional colleagues there who respect each other over at HEI... and there is a “team approach” feel  to patient care.  I personally would just be upfront that you want to talk to a few surgeons.  They know we all get multiple opinions. Your films are in your file @ HEI and they can access them at your request.
This 1st stage of making the decision is tough. HUGS.


    (My husband is having a complete meltdown he's no help).


Please give you hubby a HUG and know there is life after treatment. My 4cm Brain booger is out now... I ice skate, swim, ski, ride a bike ... and play with my kids still. (Took some hard work at therapy but I got there.) The fear of the unknown can be worse than fear itself. Your hubby can also log into the caregiver section if he need cyber hugs from others who truly understand.

http://anausa.org/forum/index.php?board=21.0

He however needs to know that understanding and being supportive to you can make all the difference now and in post op recovery.  Share that with him.

If he is flipping about the trip to LA (costs etc) know there are many people here who can give you the in’s and outs involved with the trip. For example here is the affordable Seton House
http://www.stvincentmedicalcenter.com/patients_visitors/Pages/SetonGuestCenter.aspx

Hang in there. We are here for you both on-line… former patients and caregivers… who can help you to prepare.

DHM


4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

sues1953

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Re: HELP!!!!!!!
« Reply #4 on: January 22, 2010, 10:36:47 pm »
Thanks so much you guys.  I'm exhused,  too much for one day.  Will send more info tomorrow.   Sues
3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

jaylogs

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Re: HELP!!!!!!!
« Reply #5 on: January 23, 2010, 12:31:02 am »
Sue...all of us on here have been or are going through what you are, so please continue to vent and ask questions.  In regards to HEI, if you do a search for them on here, you'll find multitudes of great success stories and how great their care is there (me included!!) That being said, there are a great many other doctors around the country so don't feel like HEI is the ONLY place to have this done.  You'll probably find as you get more opinions from other doctors, each will have a different one, making it even more difficult to decide what to do or who to see.  In the end pick the one that best feels good for you, and that'll be the best one!!  I know that stage of this thing for me was especially difficult for myself and my family...until I got the date for my surgery.  So I guess the only advice I can give you right now is hang in there, research research research, and know that this will eventually be just a memory and you'll think back and wonder what all the drama was about! :)  So take care and PLEASE continue to ask all the question you need to, there are a plethora of wonderful people on here with YEARS of experience who can help you out in any way possible!!  Good luck and hang in there!
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

Cheryl R

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Re: HELP!!!!!!!
« Reply #6 on: January 23, 2010, 08:55:35 am »
Sue,  I know how scared one can be when is told they have an AN.      My first surgery was back in 2001 when the forum was not in the present way and there was no talk that one can be back to a normal life and that not everyone has some of the problems you hear about.         There are many who have been here and recover and do fine and are gone.  There may be some adjustments but one does better with that than you think you can.         It is hard that one does not know ahead how it is going to go.    The tumor size and location is a big factor in how it can go.              At our symposium, which last summer was in Chicago, it would be hard to tell which one of us has had treatment and which are new ANers.   A few do have some facial issues which is not always  permanent.                     I am a big advocate of my neurotologist at Univ of Iowa as he is a very experienced surgeon with ANs but it has to be your choice where you decide to go. 
                            I wish you well,         Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

 


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