Thank you for those clarifications. Knowledge is power. I’ll see what the doctor tells me when I have my consult.
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Wow thank you for sharing all of this. Sounds like we have a lot in common unfortunately, though I have not yet had a styloidectomy and have decided to postpone for now. What has been most helpful for you in terms of treating CIRS? I am seeing a neuro functional medicine doctor who seems to know what he’s doing and has actually dealt with mold toxicity himself, so I feel hopeful about that.
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I’ll just share a link to @Rlr286 's discussion about mould for anyone following this one!
Symptoms have resolved 80% after leaving toxic mold! - General - Living with Eagle
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This is such an interesting thread and feels like it should stay near the top of the post order.
On the topic of post-op long term symptoms, is it possible for anyone who has had their op to provide date since surgery and any ongoing or new symptoms? A list of post-op therapies and durations. As well as percentage In your mind of how much better or worse you feel now? I imagine a lot of members who have successful surgeries perhaps don’t feel a need to return regularly on the forum but it would be so helpful to have this information I feel on the forum for those new to the site and those maybe still experiencing difficulties afterwards.
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@BraveKat I had my first surgery in July, 2024 and my second surgery October, 2024. I have no new symptoms. Headaches have completely resolved. Brain fog and other cognitive disfunction have significantly improved. The chronic fatigue is nearly gone. I am sleeping better and rarely have bouts of anxiety. What’s left is pulsatile tinnitus (quite loud) on my right side as well as fullness in that ear and a perpetual state of feeling floaty (not quite dizzy). These symptoms could suggest SCDS and it seems like a number of people on the forum have been diagnosed with that. I have a referral to see Dr. Sharon a UCSF neurotologist to assess. Overall, I feel like the surgeries saved my life. I was barely functioning, unable to work and rarely left the house due to all of the cognitive problems. Now, I’m back working and have regained my interest in life. I am a clinical psychologist and one of my areas of specialty is treating chronic neuroplastic pain. I have been using those techniques in treating the habits of mind that naturally developed around being ill for so long. Learning to see myself as healthy again. In that vein I have to be a little cautious about reading the posts on this forum because social contagion is a real thing…at least for me. Along with that work I see a very experienced dry needler to help settle down the tissue post surgery. I also continue to use the Dennerol that I got from Dr. Hauser to maintain a good neck curve.
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@BraveKat , you’re right when you say that maybe people who have had good results move on & don’t come back too much. It does sometimes skew what you see on here as the people whose surgeries don’t make a massive difference do stay on for support & those might be the stories you hear more of…many people’s surgeries are successful, but we do accept that there are risks, and we’re seeing members with so much more complicated situations that the ES surgery is often one step on a longer journey.
You can search for success stories to have a look at, here’s one to start you off:
Surgery for Eagles is usually successful! - General - Living with Eagle
Mine was very successful, the first side being removed made a big difference to my vascular symptoms, & I had the second side done a year later. I still get some nerve pain on one side so still take Amitriptyline, but it’s not as painful as it was before surgery & the facial tingling etc is better. I’ve not needed any other PT etc.
@Chrickychricky so pleased that your surgery has made such a difference for you too, and hope that you can get some answers to your remaining symptoms…
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@Chrickychricky - You might want to also consider a consult w/ Dr. Quinton Gopen & Dr. Isaac Yang at UCLA as they also have a reputation for being among the best in the US for doing SCDS surgeries.
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@Isaiah_40_31 Thank you!
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