Recent Posts

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21
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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Post-Treatment / Refusal of Local MD to Treat me Post Op
« Last post by DZ on April 24, 2024, 11:25:17 am »
Hi Everyone - 
Just wanted to get some advice from my fellow patients as I am shocked and upset. 

I went to see a local Otorhinolaryngologist (Penn Medicine Radnor, Wayne Pennsylvania) who was recommended by another Penn Medicine physician.  I recently moved to Pennsylvania so needed to establish new care.  Despite me telling their staff when I made the appointment (and had to wait a month) that I had AN surgery and was there for a follow-up MRI order Dr. Ruckenstein refused to examine me, refused to order anything and proceeded to lecture me about how it is unethical for him to do anything because he did not perform the surgery himself. 

I had an AN translab procedure almost two years ago by Drs. Friedman/Schwartz at UCSD and received excellent care and very happy to have traveled to UCSD.   Has anyone experienced this as well?  (My MD from NJ had no problem providing follow-up care but is retired now).  Any one have a similar experience?  Any suggestions about finding someone else?
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Radiation / Radiosurgery / Re: Boston
« Last post by v357139 on April 23, 2024, 06:31:54 pm »
Thanks all I will pass it along.
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Radiation / Radiosurgery / Re: Boston
« Last post by DanFouratt on April 23, 2024, 04:57:52 pm »
Radiation is a "simple" process.  I was one and done, other take a few treatments.  Regardless, both are a sort time in overall commitment.  You may want to open up your search territory. 

Good Luck in your decision journey.

Dan
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