Author Topic: ImprovingTreatment on AN`s  (Read 2452 times)

Mickey

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ImprovingTreatment on AN`s
« on: August 21, 2009, 06:08:47 pm »
As I  left my Dr`s office I asked him of the latest on the treatment on AN`s.  He said surgery has really improved over the years.  Hearing is being preserved much more now.  Also mentioned the work being done on a drug to shrink nf2 type of AN`s with the hope of someday shrinking all AN`s.  We have all heard of the radio improvement over the years.  Probably heard this in Chicago but just wanted to make sure with this optomistic news.  Best wishes, Mickey

lholl36233

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Re: ImprovingTreatment on AN`s
« Reply #1 on: August 22, 2009, 04:21:43 am »
Thanks Mickey.  You are an excellent source of information!
Proton Radiation for my hemangioma at MGH December 2009.  Hearing has improved.  Doing great!

sgerrard

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Re: ImprovingTreatment on AN`s
« Reply #2 on: August 23, 2009, 08:57:06 pm »
Mickey,

I have been meaning to post a reply on this, reporting on some news from the Symposium.

Dr. Telian at U. of Michigan had results of middle fossa surgery combined with high resolution MRIs. These MRIs are more expensive, but allowed them to determine ahead of time whether patients were likely to retain hearing. I believe that with this pre-screening, they can get 90% hearing retention. So while the surgery itself may have evolved as far as it going to go, there are still developments to be made in diagnostic tools. Hopefully one day everyone can get a clearer picture of the likely outcome in their case, rather than just the national averages. I think this may turn out to apply to both radiation and surgical treatment.

On the drug front, both Dr. Welling and Dr. Slattery reported on drug treatment research. The research is primarily aimed at developing drugs to slow down or stop the growth of schwannoma tumors, including ANs and others, in people with NF2. There are some good signs, but there are lots of hurdles to clear before they can do clinical trials for FDA approval. They will also probably be very expensive, and only really suitable for NF2 patients with multiple tumors.

Nevertheless, as you are aware, one advantage of watch and wait is that if the waiting comes to an end, by that time technology may have better tools available to deal with your AN. There are definitely some efforts being made to continue making progress in AN treatment.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.