That’s good news. We recently had a member get bumped from Aug to April for surgery with Dr. Hepworth so being on the cancellation list can make a big difference. Checking in with the office periodically about cancellations can also pay off.
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I’m glad that it was agreed to start with your most symptomatic side…and hope that you do get in earlier with a cancellation 
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Thanks @Jules and @Isaiah_40_31, really appreciate the kind words and support. I have been trying to compile a list of things to help with recovery from the surgery. So far it seems like most people recommend:
- Multiple gel ice packs to be used with thin towels.
- Handy supply of electrolyte and protein drinks for immediatley after surgery.
- Wedge pillow to help recline in bed.
- Easy button up shirts.
- Medical silicone gel sheets for incisions (after initial healing).
If either of you (or anyone else) has other suggestions I would love to hear them!
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If pain relief meds cause constipation for you, then make sure you have something to combat that!
Here’s a link to the ‘surgery shopping list’ @seamom compiled:
Surgery shopping list - General - Living with Eagle
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@JGont - When you buy the gel ice packs, get ones that can be frozen or heated. @Jules felt ice wasn’t as helpful as heat after her surgeries, & that’s been true of a few other members. Just in case that problem occurs for you, you won’t need to buy yet another type of gel pack you can heat.
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As an update, I am on the schedule for a right sided styloidectomy and c1 shave for December 21. I was told that this was likely just a preliminary date, as I am in Denver and on the waitlist for surgery. Fingers crossed!
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I’m glad you’re on Dr. Hepworth’s surgery schedule even if it’s only tentatively. Did you ask to be put on Dr. Hepworth’s cancellation list? @Snapple2020 had her potential July surgery moved to April when a cancellation came up. That’s to say cancellations actually happen, & the office is pretty good about moving patients to earlier surgery dates if possible. She was pretty persistent about checking in with the office every week or two which may also have helped.
I’ve added your tentative surgery date to my calendar so I can pray for you then. In the meantime I’ll pray for you to get a solid (vs tentative) surgery date sometime this year. 
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Hello @Isaiah_40_31, I am on the cancellation list. The reason the initial date is tentative is that Stephanie thought there was a decent chance of getting moved up prior to December.
Thanks very much for the thoughts and all the support you and others have given. Can’t say I am exactly looking forward to surgery, but I am looking forward to starting to feel better!
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I’m glad Stephenie is optimistic that you may get an earlier surgery date. That is great news!
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Good you’re on the list…sounds like an idea to go on the cancellation list as @Isaiah_40_31 says given you’re more local, if that’s possible?
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Reaching out to see if anyone has dealt with pain in ears from noise. It’s like a muscle that is clenching non stop, and burning that is centered on the ear canal and eardrum. Very sensitive to noises, which seems to cause a startle response. Anyone else? Any advice to weather it while waiting for surgery?
@JGont - That sounds really uncomfy! I’ve acquired middle ear myoclonus which is the irregular contracting of the stapedius muscle in my inner ear. It doesn’t hurt but the clicking sound & sensation it causes are annoying. I also have hyperacusis in my left ear, but that’s not from ES. I think a startle response/adrenaline rush is common with hyperacusis as loud sounds are very jolting to the affected ear.
You could try heat &/or ice to see if either of those help, & of course, there’s ibuprofen/acetaminophen. If it’s really severe, you could ask your PCP or ENT for a nerve pain medication. It’s probably your glossopharyngeal nerve causing the problem though the trigeminal nerve can also contribute to ear pain.
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Hello @Isaiah_40_31 , thanks for reaching out. I may reach out to Hepworths office and see if they have any recommendations. It’s been going on for a while now, but getting worse. I sincerely hope this symptom goes away after surgery.
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I strongly suspect that symptoms will go away after surgery. Reaching out to Hepworth’s ofc to get their input is a good idea!
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Being sensitive to sound (hyperacusis) is quite a common symptom, so hopefully this will resolve after surgery
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Hello @Jules , thanks very much for the reassurance. I am trying to remain hopeful, but this is rough. Appreciate the support.
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@JGont - I purchased soft earplugs for women from Amazon & keep them with me at all times so I can use one in my affected ear. That has helped tremendously. When I’m around my grandchildren who are loud & active, I often need to put one in for a while.
The ones I use are Howard Leight by Honeywell, Super Leight for Women Small Earplugs. They’re hot pink.
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Hello @Isaiah_40_31 , appreciate the recommendation. I have a pair of loops that I am using right now to hopefully help. I am trying to reduce inflammation as best I can and be in quiet a bit to see if that helps me recover.
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Any recommendations for a second opinion through telehealth?
i’m not sure if this is part of the overall process, but worried that Eagles is not the actual problem and something else is. Testing points towards it, symptoms, but I can’t help but feel worried that due to the length of the styloids it’s not the case. Probably from years of doctors dismissing or misdiagnosing.
Any help would be appreciated!
Dr. Osborne in Los Angeles, CA, Dr. Hackman in Chapel Hill, NC, & Dr. Cognetti in Philadelphia, PA.
•Dr. Ryan Osborne - Los Angeles ENT Doctors ENT Specialists Surgeons Cedars Sinai Medical Osborne Head & Neck Institute, Los Angeles, California. His website is OHNI.org
•Dr. Trevor Hackman, UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484, Trevor G. Hackman | UNC Health
•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Works with Dr Heller now to do C1 shaves
David M Cognetti MD | Jefferson Health Does do online or phone consults.
Dr. Hepworth is a pretty thorough diagnostician but no doctor is perfect in that realm when there are multiple issues so having another set or two of eyes looking at your imaging certainly won’t hurt & may be very helpful, @JGont
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