Author Topic: Appt. with Dr. Chang, etc.  (Read 2035 times)

Ernie

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Appt. with Dr. Chang, etc.
« on: June 22, 2009, 03:15:29 pm »
Hi guys!

I have an appt with Dr. Chang at Stanford this Wed. the 24th.  So I have been working on the issues and questions that I want to go over with him.  I am hoping to meet with Dr. Jackler in another week or so.  I have also been consulting with Dr. Wilkinson and Swartz at House.

I think I am about 2/3 of the way towards making a treatment decision.  Hopefully I will not be completely insane before I get there.  I will do MF microsurgery at House, CK at Stanford, or Gamma at some place still to be determined.  This is not an easy journey to take but we are very blessed to be living at a time in medical history that gives us so many options.  I can not image having an AN 40 or 50 years ago.  We would all be talking about mortality % instead of things like hearing preservation %. 

This is a very similar situation to the one that I had in 1999 when I was diagnosed with Myasthenia Gravis.  Getting a diagnosis like that is not something you ever want to hear from your doctor, but it is better to hear it in 1999 or 2009 than 1959.  I learned from that experience that you have to educate yourself and go to the absolute best Dr. that you can find.  Fortunately, one of the best MG doctors was right in my back yard at UC Davis, Dr. David Richman.  I had a Thymectomy to remove the thymus gland from my chest and I have been almost symptom free for 8 years now.  The only thing that I have left from that journey at this point is the 10â€? scar on my chest from the surgery.

I am not sure what the stats are on the % of the population that develops an acoustic neuroma but I think less than 3% develop MG.  I have got to be one of a handful of people with both.  I always knew I was special.

I have a few questions that I am hoping someone can help me with.

Does anyone know where a good GammaKnife center is on the west coast?  Dr. Wilkinson said that someone he had been consulting with had GammaKnife done I believe in Freemont, CA.  I would have to find my notes again to be sure of the doctor’s name and location.  But, apparently this location has the new Perfection GammaKnife machine.  But, just because they have the new machine does not mean they are good.

I have not had an ABR test done yet.  Some literature that I found said it can be helpful as an indicator to hearing preservation post-op.  Is this accurate?  Does anybody know of any studies on this?  Would an ABR be a helpful piece of the puzzle?

Are there any simple self-tests that I can do to get a gage on my balance?  I had a VNG done that showed 40% loss in balance on the AN side but that is just a number on a page and I think I tainted the results with some medication I was taking anyway.

In the case of NF2, do the tumors appear at the same time or is there a significant time gap?  Is there a test for NF2?

Thanks for the help and info.

Brendalu

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Re: Appt. with Dr. Chang, etc.
« Reply #1 on: June 23, 2009, 04:46:36 am »
Ernie,
The only question I can answer is in my circumstances.  I have NF2 and apparently it was there when the AN was diagnosed and the doctors decided to with hold the information from me and take care of the most "pressing" matter first.  It took a while and a few MRI's before I figured the whole thing out and fireworks went off, but I have adjusted.  I don't think it has been that way for all.  I am almost four years out, next month, on my AN and I have known about and am in Watch and Wait status on the NF2.
Good luck and I will be waiting to see how you make out.
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

 


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