New CT results 7.3cm

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I just received my updated CT results. My right side is 7.3 cm and my left has apparently started to grow back since it is measuring 4cm (I had surgery in 2019). I had a CT with contrast and they say all of the vessels look good. They did not have me do any movements during the scan, so not sure if that means that there is no pressure being put on them in my normal day to day since I have dizziness almost daily. Would compressed nerves cause dizziness or just vessels?

The only surgeon in MN only does oral surgery, I am definitely not comfortable with them trying to remove a 7.3 cm from the limited incision inside my mouth. I am not concerned with a scar, I would rather have them see all surrounding structures.

I have seen a few comments about them growing back, but I wonder how common it is. Has anyone had them removed twice? My neck pain has started to radiate to the left side-I was beginning to think it was in my head (lol), but I guess it is possible since it is 4 cm. :sad_but_relieved_face:

Wondering if anyone had experience with Dr Yen with UC Davis in Sacramento or Dr Joan/Dr Baluch/Dr Ji with Kaiser in Sacramento? I have family that lives in Sacramento so looking to see if there anyone that has worked with these Doctors or any other recommendations for California, since I would have a place to stay and people to care for me until I can fly home. I am also going to reach out to the Doctors in NY and Philly as well.

Thank you for any insights anyone has. I appreciate you all!

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Wow, 7.3cms is close to a record! And 4cms on the other side shows clear re-growth too I’m afraid… re-growth isn’t that common, but I’m guessing as more awareness is growing and more members are having surgery, we might also see an increase in those whose styloids grow back…
Were you able to get any copies of your imaging? I only ask as though you were told that your blood vessels look good, we know from experience that some radiologists dismiss compression of the IJVs as being only minor and not worth mentioning when actually people can have symptoms from that! But I believe the vestibulocochlear nerve can be affected by ES, which can cause dizziness, and also if the vagus nerve is compressed this can affect BP and heart rate which can also cause dizziness…
You can use the search function to look up doctors names to see when members saw them if nobody gets back to you about the doctors in CA.
I’m sorry that you’re having to look at more surgery! :hugs:

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@Jules Thank you for the information. I am going to do some research on the vestibulocochlear nerve that you mentioned. I requested a link to the scans so I will post some images. Not sure what I am looking at other than the styloid portion.

Would it be beneficial to find a surgeon that takes them back to the skull base in hopes that it may prevent regrowth? I will look to see if I can find the post that was talking about that.

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@Abby4Paige, Your right styloid is a WHOPPER!! We’ve had a couple of members who’ve had their surgeries done by Dr. Yen at UCD Med Ctr in Sacramento with excellent outcomes. Kaiser is an HMO & you have to have Kaiser Medical Insurance to be operated on at a Kaiser Hopsital so that would rule out Dr. Jian, et al, at Kaiser.

As far as getting your styloids cut back close to the skull base, the answer is YES that provides a much greater likelihood that the styloids won’t grow back. The doctors on our Doctors List that we know do that are Dr. Cognetti in Philadelphia, PA, who also does IJV decompressions surgeries w/ his associate Dr. Heller, Dr. Hackman in Chapel Hill, NC, & Dr. Osborne in Los Angeles, CA, but he doesn’t take medical insurance.

My left styloid grew back to some extent or possibly wasn’t cut very short the first time around but regardless, I needed a revision surgery to cut it shorter but that was about 10 years after my initial styloidectomy on that side.

•Dr. Kaicheng Lawrence Yen, UC Davis Health Department of Otolaryngology, 2521 Stockton
Blvd, Suite 5200, Sacramento, CA 95817, 916-734-5400 tel, 916-734-6774 fax, Assistant/Receptionist - Ivy Hamilton, 916-734-1759, Kaicheng Lawrence Yen, M.D., Ph.D. for UC Davis Health

•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
Does do online or phone consults, but doesn’t take insurance.

•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 bilateral surgery in one surgery.

•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. Works with Dr Heller now to do C1 shaves
David M Cognetti MD | Jefferson Health Does do online or phone consults.

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