Recent Posts

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AN Issues / Re: New member, symptoms questions.
« Last post by Mark F. on April 29, 2025, 09:20:43 pm »
Only down side so far is they told me no ibuprofen for a week before surgery.  Ibuprofen is the only thing that seems to cut the headaches down.  It doesn't eliminate them, but does make them more tolerable.  So that last week may be a bear
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AN Issues / Re: New member, symptoms questions.
« Last post by Mark F. on April 29, 2025, 09:17:29 pm »
Today was a Pre-op appointment day.   Blood work, EKG, vitals, basically making sure I am healthy enough for surgery.   It took longer than I thought it would.  But everything was good.  Basically half a day spent there.   It's getting more real every day, only 2 weeks away now. 
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Pre-Treatment Options / Re: CBD
« Last post by mwatto on April 29, 2025, 07:44:18 pm »
CBN (Humacology brand in Australia) is the only thing that helps when I get this very bad stabbing ear pain at night- I only need a few drops before bed and sleep deeply - feel great the next day.
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Pre-Treatment Options / Re: CBD
« Last post by stevehernes on April 25, 2025, 02:04:52 pm »
Everyone deserves the right to choose how they handle their pain, whether that's through CBD or more conventional medicines. Pain management is such a personal experience, and there’s no one-size-fits-all solution. I've spent quite a bit of time browsing Canadian Pharmacy Partner , learning about various options, and for myself, I usually lean toward traditional medications — they simply feel more familiar and reliable to me. That said, I fully support the idea that people should have the freedom to decide what’s best for their own health. No one should be forced into a treatment path they’re not comfortable with. Health is deeply personal, and respecting each person's choice is truly what matters most.
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Microsurgical Options / Re: Intralabyrinthine schwannoma
« Last post by Karin Mauro on April 25, 2025, 10:07:57 am »
Sounds tricky. You may want to get a consult with a neurotologist since they share the surgery with a neurosurgeon. Maybe they could advise you.
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I had hemifacial spasms which started 6 months post GK. The AN goes through several phases after GK including swelling and could be touching other facial nerves, etc. Write down all your symptoms and the frequencies and discuss with your Dr. I have been prescribed steroid for short term but felt worst rather than better. My facial spasms went away after 9 months and no other symptoms. But my hearing is gone on the AN side prior to GK so nothing to lose anymore.
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Are you doing better now? With headaches, I don't take any chances — mine are way too strong to ignore. Sometimes they hit so hard that I can’t focus on anything else. I’m planning to ask for advice from Canadian Pharmacy Partner soon and get myself some new medication. I know it’s important to find the right solution before things get worse. Health should always come first, and I'm ready to do whatever it takes to get this under control and feel like myself again.
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AN Issues / Re: Newbie and concerned
« Last post by ESH on April 22, 2025, 09:51:55 am »
You also can email the doctor you saw originally and update him or her on any new or worsening symptoms. Plans are not written in stone. I am currently on watch and wait and may seek an additional opinion but the doctor I saw was very specific about "email me if you have new symptoms or worsening symptoms."
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AN Issues / Re: Newbie and concerned
« Last post by greenamw on April 22, 2025, 07:23:49 am »
Yeah, I’d definitely push for a second opinion, especially with the new and worsening symptoms. Facial nerve stuff, balance, eye dryness, it’s all sounding like it’s progressing, and waiting until June feels too long if things are changing fast. I had a friend go through something similar (not exactly the same), and getting a second opinion helped them get a faster care plan. Trust your gut, you know your body best.


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AN Issues / Re: Pregnancy after AN Treatment: Risk of Regrowth/Hormone growth??
« Last post by greenamw on April 22, 2025, 07:17:46 am »
I had a similar situation, had a small AN partially removed, followed by radiation. I got pregnant a year after treatment. My docs also said hormones “shouldn’t” affect it, but like you, I wasn’t fully convinced either. I did get a few MRIs during pregnancy (without contrast) just to be safe, and they were stable.

I totally get the anxiety, it’s scary when you feel like no one can give you a clear answer. All I can say is trust your gut, stay on top of the scans, and if you move forward, make sure your neuro and OB are closely communicating. You're definitely not alone in feeling this way.
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