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For those in the 'watch and wait' status / Re: Interesting article
« Last post by judyette on September 18, 2021, 02:00:19 pm »
Thank You Michele!  Very interesting indeed.  I downloaded both the full article and the abstract, and will read it more thoroughly.  I'm so glad they are doing this sort of research. 

judyette
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For those in the 'watch and wait' status / Interesting article
« Last post by mwatto on September 18, 2021, 02:00:58 am »
https://geneticsmr.com/articles/8157
Plenty natural compounds that work on this pathway such as: resveratrol, quercetin, curcumin, genistein and berberine and boswellia
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Facial Issues / Re: Resting Face , Tumor Side Mouth Higher?
« Last post by Boise Jim on September 17, 2021, 03:23:44 pm »
Yep, six years (almost seven) out from radiation and it's been that way ever since. Hardly think about it anymore.
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Pre-Treatment Options / Re: Hi; newly diagnosed intralabyrinthine VS, looking at options
« Last post by lryan42 on September 16, 2021, 03:17:38 pm »
Update:

I recently had another MRI which showed a stable VS (well, that's what the UCSD and radiologist say - my local neurotologist thinks it's grown very slightly).  I also had a hearing test (my first since 12/2019) which showed nearly complete deafness.  My two "best" scores are a 95dB at 8kHz and a 100dB at 6kHz - otherwise it's all 110dB and worse.  The audiologist who administered the test was super concerned about how severely my hearing had deteriorated until I explained that this was entirely expected, due to the peculiar location of my particular VS.

It's a little strange to say, but I'm so grateful I'm finally SSD!  This milestone means I can get out of the "watch and wait...while your hearing gets worse and your tinnitus gets worse" purgatory I've been in since I first got diagnosed back in 2019.  Ever since my hearing started fading in 2019 the plan has been to wait for me to become SSD and then remove the tumor and install a cochlear implant.  And now, here we are.

I'm doing the CI eligibility testing in a couple of weeks to appease the insurance company, then I'm planning on getting the surgery in early 2022.  Exciting!
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Sorry to hear your girlfriend is in the club. You'll find people will advocate for various positions here, and one of the weird thing about these tumors is that there are such wide options for what to do/not do! I opted for Middle Fossa surgery.  Here was my reasoning:
1. While surgery cause immediate risk of losing all hearing, it also gave the best chance at long term hearing preservation. My hearing was a little better, and my tumor a little smaller (1.2 cm) so I was told about 60% chance of saving my hearing, which is thankfully what happened.
2. I wanted the tumor "out."  I recently had my five year follow up MRI and everything looked good, so I don't have to go back. I don't have to worry about  recurrence, etc.
One important question is to ask how often the doctor/surgeon does middle fossa surgery. it's important to have a surgical center who does AN tumors as often as possible.
Good luck!
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AN Issues / Overwhelmed
« Last post by RobinLee on September 16, 2021, 11:18:57 am »
Hi all! I am new here and don't know where to start there are so many posts LOL. Sorry if this may end up being long. I had an MRI back in August because of dizziness and tinnitus 24/7, bouts of vertigo and also a bit of tingling in my fingers. It turns out I have an AN but it is small (according to the radiologist). My GP is having me see a neurosurgeon but can't get into to see him until 10/19. If I am on watch and wait, how do I deal with this constant dizziness, tinnitus and fatigue? I do have a problem concentrating on whatever I'm working on also. I have been trying vestibular therapy that my PT shown me but that does not help. I've been trying to learn as much as I can but it is a bit overwhelming and quite frankly, frightening. I'm already 61 and have dealt with NF1 all of my life. It's hard not to think about. Thankfully I have a very supportive husband and family.
Thank you for listening!
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Hello Everyone:

Thank you so very much for your assistance in advance.  My girlfriend has a unilateral 1.4 CM AN tumor in her inner right ear close to the brain.  I am writing on her behalf because she is an English student.  It seems to be an AN, but small chance it is Facial Nerve tumor.  Girlfriend has lost 40% of hearing in her right ear so far.  She has pretty strong tinitus, she says it is like a rumbling sound, pretty constant.  No facial nerve paralysis or facial symptoms of any sort.  She had one MRI about nine months ago and a second one 30 days ago.  The size is unchanged, but they noted her hearing fell by 20% in that time frame, from 80% down to 60% remaining. In the past two weeks, she said she might possibly have felt a small bit of occasional dizziness.  She seems to balance fine and never has to grab the walls to balance.  The doctors predict a 40 to 50% chance of losing all hearing in right ear after surgery.  So they have about a 50 to 60% chance of saving her current hearing in the right ear.  Left ear is normal.  Conversely, they predict she will lose all hearing in right ear within one to four years if she does nothing.  Three out of four neurosurgeons want to do a Middle Fossa approach.  But they are reluctant on recommending doing surgery or watch-and-wait.  They say they "could do surgery for the preservation of hearing" but leave it up to her.  Based on the above, would you recommend surgery or watch and wait?    Thank you again. 
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Hi all:

I am trying to help my girlfriend.  She has a 1.4 CM AN tumor that may have to come out.  She works hard every day, but she only has Medi-Cal for her Health Insurance which is administered by "L.A. Care" in downtown Los Angeles.  Her primary care is "Asian Pacific Heathcare Ventures", also in L.A.  Her daughters and I would like to take her to the best, either House Ear Institute or Dr. Friedman at UCSD.  However, her Medi-Cal Insurance has declined to pay for an out-of-network doctor.  They want to send her to Dr. Bader in Glendale California.  I am new with understanding Medi-Cal.   How do I appeal the decision of the Insurance?  How can I get her covered for the best doctors?  Her daugthers are going through the appeal process but it does not look promising.  We are trying to get a letter from her Primary Care physician attesting for her need for a great doctor to do AN craniotomy surgery. Should I seek an attorney of some sort?  Can you tell me how to succesfully appeal her denial of an out-of-network doctor?   
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I had my CK done in Perth Australia almost three years ago now...so far so good. My hearing and balance seem fine. Have had no side effects really except I get occasional nerve pain in ear which I had before treatment. Also my sleep is still an issue tho that might be genetic as my sisters also have. I continue to have daily ginger, boswellia, bromelain and D3, propolis and curcumin. I exercise every day in gym and play chess against my super clever mathematician husband to stay brain sharp. So no cognitive issues. Full of energy. So I can recommend CK so far... I had three sessions for 2 cm in a bad location. There were cystic components but they disappeared.
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AN Issues / Re: Brain Tumors and Fatigue - Brochure (pdf) offers way to counteract!
« Last post by MarlaB on September 14, 2021, 03:35:17 pm »
Hi There..I've reached out to the BrainScience foundation to ask for an update. I'll keep you posted here.

Marla B.
Forum Moderator
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