Feel free to start another thread if you want to post about your journey @jschronce- really pleased for you that you have a date for surgery & that it’s not too long to wait! Will pray for a good outcome for you 
@jschronce 
Your surgery date is coming up soon! We look forward to hearing from you when you feel up to it post op & are, of course, here for you should you have pre-op questions. 
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How did you do this??!?! I would like to have all my recent scans converted to this. Not sure I believe the radiologists that have read my CT scans. Please advise. Thank you.
@vdm just posted info in this thread:
Hope this helps. Dr. Osborne doesn’t take insurance its all out of network. He offered surgery, but its 20k and possibly 32k. He agreed with the 2nd report was more accurate about the lengths and not the original. Some of these reports only measure in the coronal view and not the MPR ( multi planer view) which is more accurate. I’m looking to make a appointment with Dr. Samji (does take insurance), but he only accepts original reports and non contrast ct scans which i dont have and my orignal report it bogus according to me and Dr osborne. So much bullshit with this condition.
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Thank you for the scoop about Dr. Osborne. It’s a shame he doesn’t take insurance & then has such astronomical fees for his service. Dr. Cognetti is also a great choice, & he does take insurance, and his cash price for those who are uninsured is only about $4k which includes anesthesia & outpatient surgery center.
Dr. Samji did both of my ES surgeries (2014/15) & I’ve had excellent results, however, we’ve had some members who haven’t had such great outcomes after his surgeries & some have found in follow-up CT scans that he didn’t remove as much styloid as he claimed to. Because of my experience w/ him, I highly recommend him, but if you choose to have surgery w/ him, make sure you get to actually see your styloid post op so you can see how much was removed. He will not take pics for you, & he doesn’t do the nice image w/ the styloid lying against a ruler. You have to ask one of the surgery center nurses to please retrieve it so you can get a look before it gets sent off to the lab for testing.
He is an excellent surgeon & knows what he’s doing so it’s hard to explain why the inconsistencies in surgical outcomes. I recently had a CT scan because of some recurrent ES type symptoms, but my styloids look to be non-existent so this problem is coming from elsewhere. Based on that info, he did great by me.
I know you said you’ve tried contacting a couple of the ES docs in your state but got no response back. If you weren’t persistent in calling, you might want to continue that route as well to save your self the time & cost of traveling. Many of our members have had trouble getting in contact w/ doctors offices recently because everyone seems to be short staffed after the COVID shut down.
Here are 3 who have been highly recommended by our members:
•Dr Rui Fernandes, University of Florida and Shands Hospital, 653-1 8th St W, Jacksonville, (904) 383-1018, https://hscj.ufl.edu
•Dr. Anthony Bunnell, UF, 653 W. 8th St., Jacksonville FL, (904) 244-3216 https://ufhealthjax.org/doctors/3099/anthony-bunnell/
•Dr. Phillip Pirgousis, Mayo Clinic, 4500 San Pablo Rd S, Jacksonville, FL, (904) 953-2000
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Donut dicom viewer is advertised as free but you must login to use it. It provides some very interesting views, but not sure yet how to combine the different views into one 3d image. However, I am seeing details that 3d slicer never provided for each geometry. It is so interesting to move the 3d image and then remove slices of bone on that view. It would appear that many different viewers may prove valuable at least for a day or two before the trial period ends.
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I would note that the doctor doesn’t necessarily know how much is left behind by estimating it visually. My ENT estimated 1 cm, but it turned out to be closer to 2 cm when measuring based off a CT scan done after surgery. I think the best doctors simply do a lot of these surgeries, so they have probably learned that taking more bone is worth it, despite more nerve irritation in the process. If you have zero nerve irritation after the surgery, like me, then I would wonder how much was actually left of the styloids. I looked at original CT scans and just taking half of the styloid (to put it in normal range) would not have prevented it from pushing on vessels with vertebrae transverse process very close to it.
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Do you think your remaining symptoms are from not enough styloid being removed or just that your nerves need more time to heal? We tell our members it can take a year or more for nerves to fully heal which is definitely an experience that I had.
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Definitely, I think too much styloid is left over. I can feel the pain right where the styloids are behind my jaw. I am also starting to get throat pain again. Chewing is irritating things quite a bit. I just started using gum again and need to stop after a few pieces per day. I made an appointment with Dr. Constantino, but I will be at the airport during the appointment so I am hoping for a good signal. He is known for being difficult to schedule things with from the reviews. I don’t think I can change it now. I guess there will be no more sugar free gum for me anymore to combat dry mouth. Going to have to try and find a neurologist to order more testing like doppler ultrasound, because when I raise my arm(s), I get blurry vision and lightheadedness. I already had the TOS surgeries, so I think the problem is in my neck causing an issue. I also get lightheaded turning my head left or right all the way.
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It does sound like your styloid & possible vascular compression especially when you turn your head. You should have a good cell signal in an airport so hopefully your appt w/ Dr. Costantino goes very well. Have you sent him any current imaging yet?
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Sounds like you could possibly have carotid artery compression from the light headedness as well… I used to use biotin gel for dry mouth, there are mouth sprays you can use too, but some use xylitol & I couldn’t tolerate that- just sip on water all day now instead! I hope that you can have a good call with Dr Costantino!
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Yes, I uploaded my CT scans and that should be good enough.
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Sounds like “all your ducks are in a row”, @jobby99. When is your appointment?
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