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Inquiries / Is AN possible with symmetriic (mild to moderate ) hearing loss?
« Last post by windingshores on November 16, 2024, 07:45:03 am »
I have left side tinnitus, facial numbness (sometimes pain), dizziness. Facial pain, numbness and tinnitus all worse in the last few months. I went to a top otoneurologist to rule out AN, mainly, and he said that without asymmetric hearing loss, I don't have an AN and he would not order an MRI for my symptoms, He basically said "go to neurology."


I do have cervical stenosis, myelopathy, and he mentioned radiculopathy so the pull on nerves from neck could be an explanation.

My PCP already ordered MRI of brain, angio brain, and neck but if it is truly not possible to have an AN without asymmetric hearing loss, then I will forego the MRI's.

I had breast cancer but am not concerned about metastasis with this picure.
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AN Research / Brigatanib article (Nf2 VS) but possibly sporadic VS too
« Last post by mwatto on November 15, 2024, 07:08:51 pm »
https://academic.oup.com/neuro-oncology/article/26/11/1949/7817932
Summary:
Brigatinib, a drug approved to treat lung cancer, shows promise in shrinking tumors associated with neurofibromatosis type 2 (NF2)-related schwannomatosis, including vestibular schwannomas:
Tumor shrinkage: In a phase 2 trial, brigatinib shrunk 10% of target tumors and 23% of all tumors, including 10 vestibular schwannomas. Meningiomas and nonvestibular schwannomas had the greatest benefit.
Hearing improvement: 35% of eligible ears improved their hearing.
Pain reduction: Patients reported a decrease in self-reported pain severity.
Safety: No grade 4 or 5 treatment-related adverse events were reported.
Mechanism of action: Brigatinib inhibits multiple tyrosine kinases, which causes tumor shrinkage.
Other findings from the trial include:
Annualized growth rates decreased for all tumor types
At 12 months, 77% of tumors with meningiomas and 83% of tumors with nonvestibular schwannomas did not progress
The most common adverse events were diarrhea, nausea, muscle cramps, increased LDH, increased AST, and increased ALT
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Insurance / Re: Life Insurance: Tips on Companies or Strategies?
« Last post by greenamw on November 15, 2024, 01:46:55 pm »
I turn to the axis, and everything arranges me. We used insurance a few times, and we had no problems.

It is best to contact a health insurance broker to choose the most suitable insurance. that's what we did)try to contact them and see what they propose https://premierpmi.co.uk/private-health-insurance-for-children/.
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Insurance / Re: Life Insurance: Tips on Companies or Strategies?
« Last post by 4givvvn on November 15, 2024, 01:45:45 pm »
Hey guys, I need medical insurance for my son, but I don't know which company to go to, who offers the best insurance for children?
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Inquiries / Re: finally getting MRI's next week
« Last post by windingshores on November 13, 2024, 02:19:42 pm »
Mass. Eye and Ear doctor said that with symmetric hearing loss an acousic neuroma is not a concern and he would not do an MRI.  He also said my 2021 MRI, even without contrast, would have picked something up since I had symptoms then.

He did a lot of shrugging and "sorry I don't know" and "sorry I don't have anything to offer you."  It may be my neck.  The MD has said he has had tinnitus since birth (oddly two MD's I have seen have had tinnitus forever and it makes them less empathetic, not more...not that I need empathy for it at this point). He mentioned that when he puts his head back, the tinnitus gets worse and has no explanation for that anymore than he can connect loud noise to facial pain and numbness extending down my neck. Honest but overall dismissive.

Dizziness is "vestibular migraine." according to MD.

It does seem that my bilateral hearing loss, that is roughly equal on each side, would seem to indicate no AN. 

Sorry for repeated posts.  Just went today.
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Inquiries / Re: finally getting MRI's next week
« Last post by windingshores on November 12, 2024, 06:51:34 pm »
I just got the actual report that says "mild to moderate hearing loss" . This happened in 2021. This audiologist told me I was fine and the following week another one told me I had hearing loss. 
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Inquiries / Re: finally getting MRI's next week
« Last post by windingshores on November 12, 2024, 04:51:17 pm »
Does my benign hearing test make an acoustic neuroma unlikely.

I wonder why I have tinnitus and hypearcuse (as well as facial pain/numbness and dizziness) since doctors have explained that tinnitus and hyperacusis are caused by hearing loss.

I read somewhere that typical audiometry may not pick up a certain type of hearing loss. Can't remember details.
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Inquiries / Re: finally getting MRI's next week
« Last post by BertH on November 11, 2024, 03:33:18 pm »
It's typical to have single sided hearing loss on the side where the tumor is growing. My hearing loss started when I was 33. The audiologist said it was due to nerve damage from when the ex and I were farming. By 2008 when the AN was diagnosed my hearing was gone; it took my hearing on the right side. Hearing on the left is pretty much unimpaired.
The consistent thing I heard over the years from other patients was that their doctors dismissed their AN symptoms. Don't let any doctor dismiss your symptoms. They're real. Even small acoustic neuromas can be very symptomatic.  (Anything under 1 cm is classified as small.) Because you don't know the size, please do the contrast! You want to find this sucker!
I'm happy you've found someone you can trust.

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Post-Treatment / Re: Insurance Coverage vs Follow up
« Last post by DanFouratt on November 11, 2024, 02:50:02 pm »
You are in a like position as me.  I lose COBRA the end of this month.  The intern insurances will work but are expensive and really only protect you when things get out of control. I turn 65 in Dec 2025 and will have Medicare then.  It would be interesting to hear if others have had problem with Medicare.  My wife is on it and she had surgery for her broken heel early this year.  Medicare worked as good as my BCBS and the out of pocket was minimal.
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Inquiries / Re: finally getting MRI's next week
« Last post by windingshores on November 11, 2024, 02:14:33 pm »
@BertH my hearing test did not reveal any changes and hearing loss is minimal, and might even be worse on the right side when my symptoms are on the left.

The testing included audiometry and tympanetry and induced  increased pain, numbness,  as well as dizziness and nausea, the latter two for about 90 minutes.

Without substantial unilateral hearing loss, is an acoustic neuroma still a possibility?

Audiologist suggested that if a neuroma is big enough to require surgery, contrast would not be needed, so I could skip the contrast. She mentioned x-ray!  I will discuss with neuro-otologist in a couple of days.
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