I'm baaaaaaack <sad face>

Hey survivors,

I had surgery 6 years ago and sadly was just diagnosed w ES (bilateral) again last week. To say I’m down and not at all looking forward to going through this again is an understatement. Any repeat “offenders” out there that have had success?

Thanks and wishing all of you wellness and grace.

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Hi @MiniFury!

It’s been awhile!! I’m sooo sorry for you new diagnosis! We do have a few members who are “repeat offenders” :disappointed_relieved: w/ ES, & most have done better after the second round of surgeries.

Unfortunately, many doctors aren’t interested in “repairing” another doctor’s work, so it can be challenging to find someone to do a revision ES surgery. Dr. Hackman in NC does both bilateral surgery & revision surgery & has been very successful w/ both. He would be a good doctor to start with.

•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 (Does intraoral robotic surgery - removes styloid to skull base & stylohyoid ligament AND external surgery).

Please keep us in the loop as you decide your next steps. You know we’re here for you!!

:gift_heart: :hugs:

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Hi & welcome back, although obviously you’d rather not be back! I hope that you can get some help soon- are the symptoms as bad as before? I can’t remember who did your surgery before?

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Hi @MiniFury - Yes - I am a repeat offender. First surgeon removed about 2 cm bilaterally intraorally. Two and a half years later I noticed a return of symptoms that were so reminiscent of the onset of Eagles, I thought my styloids had grown back. No one would believe me, of course, but I managed to get a new CT scan, and there they were, impinging on my IJV and ICA. I thought the original surgeon removed most of the styloids, but he really just snapped off the skinny ends that were poking into my throat. Dr. Hackman agreed to do the revision surgery and remove them to skull base. I could not get my GP to write a referral to an out of state doctor, so I put together a package of records and a request for consult and sent it myself. His office contacted me the next morning and I had a consult scheduled within a month and surgery a month after that. Dr. H removed another 3+ cm on both sides with an external approach, with incisions around the front of my ears. Dr. Hackman is an excellent surgeon, and the hospital is very nice and well managed. Second surgery resolved the vascular issues quickly - once the swelling was completely resolved, I felt great. Minimal scaring, not even noticeable after a year.

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I had my 1st surgery (one side only) in 2014 (styloidectomy and C1 shave). I was symptom free for over 5 years. Symptoms returned. Seems surgery side was now compressed due to “soft tissue” (scar tissue? Muscle?). It took 2 years, but I finally had surgery on the other side November 2021, styloidectomy only, no C1 shaving necessary. Doing good now!

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Good to hear Susie, thanks for coming back to share your story, & @Catmd too!

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Hi @Jules - Dr Gene Brown in Charleston SC (where I live) and I may end up going back to him, but I wanted to see if that was ideal or if perhaps he didn’t do the surgery correctly and that’s why it’s back? My case is the ligaments vs the lengthening styloid process. My surgery was external and I’d like to do that again since the scarring was minimal and I know that gives the doc the best view of what’s going on.

Any advice or thoughts from this community would be welcome!

Thanks for the warm welcome back!

Have you had a CT to see whether it’s regrowth or ligaments now calcified? The styloids can regrow, we’ve had members whose were cut back completely even grow back, so it may be that your doctor did a perfectly good job last time & you’re just very unlucky; I guess the only way to know would be if you had a copy of the surgery report to see what was removed? Or a CT soon after surgery, which I guess you haven’t. So a current CT would be helpful to look at what needs removing this time before you decide on a surgeon if you haven’t got one already…

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@MiniFury - In the event you decide Dr. Brown didn’t do a thorough job the first time, Dr. Hackman in NC does ligament removal as well as styloid removal. He’s also one of the few ES surgeons on our forum who does revision ES surgery.

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Oh interesting! I haven’t heard of that incision point before, mine is at mid point of my throat. Is that a new standard practice now or something specific that doc is doing? I got referred to the same doc who did my first surgery but since I was the first patient who he ever did the surgery on, I want to go to someone w more experience for #2. I found 2 docs in the area who supposedly work on ES, so trying to get an appt now.

I tried to get a CT scan from my regular doc, but my insurance denied it and made me get an xray. I think that will likely be the first step. I’d love to see scans from the first time and current to see what changed.

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That’s a good plan. The radiology lab that did your first set of scans should be able to give you a hard copy + get the written radiology report at the same time. I think they keep all that info for 10 years. I picked up a copy of my CT scan & report last year, & my scan was in 2014.

Not sure who you were referring to abt incision placement, but I know Dr. Hackman makes an incision in front of the ear for styloid removal & neck for ligaments. Several members have posted pics after surgery w/ him.

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