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Post-Treatment / Re: Follow Up MRI
« Last post by DZ on April 26, 2024, 01:09:33 pm »
Hi Hero-  Thanks so much!  Will search! And yes, although I cant really compare, my own personal experience interviewing 4 centers (i was a former health care professional), extensive searches in the scientific literature and comments from others drove me to the UCSD team (which was 11 yrs after your procedure!- there was no ucsd).  Donna
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Inquiries / Re: AN regrowth after surgery and proton radiation
« Last post by v357139 on April 25, 2024, 08:11:47 pm »
Hi Michelle.  Sorry for your bad news.  While a tumor after radiation may be more challenging, a very experienced team can still get the job done.  Friedman and Schwartz at UCSD are very highly experienced.  I had Schwartz and Slattery when Schwartz was at House.  I consider Schwartz one of the top neurosurgeons for AN in the world, in my opinion.  The House Clinic also has a long history of AN surgery, although I am not familiar with the neurosurgeons there these days.  A consult with UCSD and another with House would be as good of a start as you can do.  I seem to recall there are also some pretty experienced teams in Texas as well, although I am not familiar.  Pick a very experienced team, and you still have a very good chance, even after radiosurgery.  Best of luck and keep us posted.
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Inquiries / Re: Choosing/Interviewing Radiologists
« Last post by v357139 on April 25, 2024, 07:53:10 pm »
Top left of your screen, where it says Home, Help, Search, Profile, My Messages, Members, Logout.  Go into Profile, Change Profile.  In there, its your Signature.  I think Phyllis will be a really great resource also.  Let me know if you need anything else.
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Inquiries / Re: Choosing/Interviewing Radiologists
« Last post by Berta on April 25, 2024, 03:07:04 pm »
Thank you for all your responses, I don't know how you find all that info! My tumor was diagnosed in 2019 at 3mmx4mm, my last MRI in January it was 7mm x 5.5 x 5 mm (TV x SI x AP). (I've noticed that people who post on this board have this information along the bottlom of their post, how do you get it there?). I'll be 66 in May. Dr. Barker did not think they'd do proton beam in my case, he didn't explain why and said that a radiation oncologist would be the best to explain.

I"m not too far from Rhode Island, so I'll check out their ANA group. I'm talking to someone from Brigham & Women's Hospital tomorrow...
Berta
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Post-Treatment / Re: Refusal of Local MD to Treat me Post Op
« Last post by DZ on April 25, 2024, 02:24:47 pm »
Thank you Dan.  I did reach out to Dr. Friedman and he provided an order for me immediately. He is really great!  Their entire team is wonderful including the nurse navigators! Wish I lived in the San Diego area! - for more than 1 reason!! Thanks again.  Donna   
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Hearing Issues / Re: Bone Conduction Headphones
« Last post by popularcampus on April 24, 2024, 09:24:20 pm »
I have a little hearing problem, using Shokz OpenRun Pro and Philips Go A7607. I personally prefer using the Philips Go A7607 because it's quite convenient and the sound is super smooth, without being shrill.
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Post-Treatment / Re: 3 Months Post op Middle Fossa
« Last post by emcee16328 on April 24, 2024, 07:34:07 pm »
I have not had a treatment yet but probably radiation in the next couple of months.  I am going through the process at Mayo - Jacksonville. 

Currently I have SSD and am wearing a Phonak Cros hearing aid.  I have become very sensitive to certain sounds such as dog barking or pots banging.  in loud environments I find myself turning my hearing aid down or off.  If I go to someplace with music I bring ear plugs.  Sometimes it seems that it is actually easier to hear with ear plugs.

This week I am seeing the audiologist at Mayo.  My previous audiologist said sound sensitivity "sometimes that happens" and had no advise or explanation.  I don't think I have found the "right" audiologist yet. 

I'll post and update
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Post-Treatment / Re: Follow Up MRI
« Last post by v357139 on April 24, 2024, 07:25:41 pm »
Hi Donna.  Schwartz is the best isn't he?  I almost went with him and Friedman until Friedman left House.  They were both very generous with their time.  I'll take a look in my records, not sure I have much on regrowth.  You might try simply googling Acoustic Neuroma Regrowth.  Sites like Medline and NCBI are very accessible.

Here's one I found quickly:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4899411/

As I recall, the term near-total resection may not always be that well defined, as opposed to gross or total resection.  Glad to discuss further if you like.
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Post-Treatment / Re: Refusal of Local MD to Treat me Post Op
« Last post by DanFouratt on April 24, 2024, 05:56:14 pm »
I choose to change follow up doctors. I had no problem finding people to follow up with.  I would reach out to some other doctors.  Will USCD follow up?  local MRI and then a phone call? I would forget about the one who was just wrong about the way they treated you and move on.

good luck,
Dan

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Post-Treatment / Re: Follow Up MRI
« Last post by DZ on April 24, 2024, 11:31:30 am »
That is wonderful!  Congratulations!!!   Glad to hear after 13 years!!  Lucky 13!!  I am only about two years post op (8/18/2022 Friedman/Schwartz UCSD) and a remnant was also left to protect the facial nerve.  I was back doing routine things almost immediately post op! I feel very lucky. I would love to see any references/papers that have been published about regrowth that you have /recommend.  How can I get?   thanks! Donna
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