Another patient here found Dr. Mendleson (?) at UCLA to be very patient friendly and was willing to do a revision surgery. Ultimately she didnt go there due to distance but had good things to say about him.
I traveled to San Jose for both my surgeries and found some decent $$ at the Los Gatos Garden Inn and Toll House Hotel. I was able to walk everywhere and found downtown Los Gatos a really cool and very safe place to hang out with lots of food options. There is a nice walking trail too. Prior to surgery, I did a nice beach drive over to Santa Cruz and half-moon bay. I made it a vacation of sorts and did it on a budget.
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Dr. Chhetri also at UCLA has done successful ES surgeries for some of our members. Both do external ES surgery.
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Updateā¦ Guess the saga continues.
Had the CT that Dr. Gaylis ordered for me to be able to send the CD and report to Dr. Samji. Just got the report back and while it states that there is āmildā elongation of the styloids it gives no measurements. I called the radiology department to request that someone re-look at the can and add the measurements to the report as addendum and was told āthat type of scan does not include measurements.ā The person that I spoke with went on to say just send the CD to the Dr. and they can do their own measurements. Shot message to both my PCP and Dr. Gaylis to see if they can request the radiologist can go back and measure my spikes.
From the report, āMild elongation of the bilateral left greater than right styloid processes, without significant associated mass effect. This appearance is commonly seen in asymptomatic individuals. Clinical correlation for signs/symptoms of Eagle syndrome is recommended.ā
WTF does mild mean if there are no measurements?
If all else fails I have a follow up with the ENT who knows little about ES on Monday and I will have him order a new CT and request measurements and 3-D on the order.
BB16,
DO NOT get another CT scan. Dr. Samji doesnāt need the measurements of the styloids as he will measure them himself using the CT images you send him. He just needs a report that says theyāre elongated. Iām fairly certain my CT report didnāt have styloid measurements, & I was able to make an appointment with him & ultimately he did my surgeries.
As far as the interpretation of the report goes, it says you have elongated styloids (what they measure really doesnāt matter if youāre symptomatic). Without mass effect seems to indicate that they didnāt see any vascular or other compression of tissues in the area that might be causing your symptoms, & thus, they concluded that a scan like yours is usually seen in patients who have ES but are asymptomatic. Additionally, Iām not sure how the āw/o mass effectā observation could have been made since that is usually based on visualization of surrounding soft tissues, & those canāt be accurately seen in a CT w/o contrast.
It is my firm belief that this is another case where ES is poorly understood because even normal length styloids that are very curved, pointed, twisted, or thick can cause ES symptoms. Though length is the criteria by which ES is judged, it isnāt the whole story. Again, I presume that in the given radiologistās experience, a CT scan w/ results like yours has been seen in asymptomatic cases of ES thus (s)he felt obligated to make that note.
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So sorry that youāve not had a detailed report to go on from your CT! I agree with all Isaiah says, you donāt want to expose yourself to more radiation if itās not necessary! I hope that Dr Samji can help you 
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Hang in there BB.
If you have the scan on disk, you have the āgoldā standard to have a ārealā ES doc review. I know my doc specifically asked for evaluation for Eagles which in my mind means you need to measure the styloids to determine if they fall into parameters for Eagles. It sounds like without those measurements, the radiologistās has an opinion of what he/she things is āMild Elongationā. Yes, WTF does that mean!!! It is vague and general and passes the buck. Sounds like a crappy radiologist.
I would ask your ordering doctor (or his/her medical assistant) to call back to radiology and request the measurements. It appears who ever directed you away from the amendment to report is just lazy or disrespects patients. Some medical people need to get a written order or verbal director from a doctor to get a fire under their butts to do something. I encourage you to rattle that cage a little more. Hang in thereā¦you are almost to the finish line.
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Just had a follow up with my regular ENT who looked at the CT and measured what he saw. Both are ā5+ cmā and he offered to do the surgery. He is also amiable to trying a steroid injection to see if I get relief from it. He also would like me to consult with a spine doc to rule out TOS or anything else that could mimic my symptoms. Unfortunately, he is not very experienced with taking out styloids, He has done āa few,ā but as someone who has done a lot of skull based surgeries he feels really confident he can do it.
I told him that my plan is to have a consultation with both Dr. Samji and Dr. Chhetri (@ UCLA) and he felt that was a good plan as they both have more experience with ES. He also offered to do post surgical follow up care if I have it done out of town and if the surgeon is ok with it. It was very reassuring to be heard and to have a back up plan if needed.
Thanks all for your replies after I read the reportā¦ Not sure what the radiologist has against ES.
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Thatās great news, BB16! Weāve heard good things about Dr. Gaylis on this forum @ would add him to our Doc List if he had done successful ES surgery foe any of our members. We have had some that he did the post-op follow-up care for.
Super news abt his re-measuring your styloids & giving you more accurate info. Please let us know what you learn from Dr Samji & Dr. Chhetri.
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Thatās good news; he sounds like a very caring doctor; good that he doesnāt have a big ego & is happy for you to consult with more experienced doctors!
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@Isaiah_40_31 @Jules sorry I was not clear. The ENT I was talking about 8s not Dr. Gaylis, but our local family ENT.that we have been going to for years.
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Got it. Sorry for being presumptive. Itās still great news that he is a humble man & willing to follow-up after someone else does the 'big job".
BB glad you have a supportive doc. It really makes a huge difference. I personally got alot of relief with steroid/nerve block injections. The steroid was one of the most effective efforts I had in knocking this down a little and making the pain more bearable. I think you are wise to consider a more experienced surgeon. Over 5cm is pretty long. Anything over 2.5+ is considered elongated in general and supported in many peer reviewed medical journal articles. Maybe you should find a good one and pass it on the the radiologist? 
That radiologist appears to be clueless about Eagles and needs to be educated.
Saw Dr. Chhetri today. What a difference seeing someone who is familiar with ES and is confident in his skills. Got worked up by both Dr Chhetri and his Fellow. Both easily palpitated my styloids internally and by pressing along my jawā¦ouchā¦(still having a flare up from that 7 hours later, how long until that calms down?)
Long story shortā¦ He said he could help and offered surgery. He would like to do it interorally and would do both sides at the same time.
Side note I was able to get the radiologist to amend the report to include measurements he said the left was 5mm and the right one was 4.5. kinda funny because everyone who has looked at my scans says they are 5+ on both sides
Iām really glad youāve been in to see someone who has a clue about ES. Interesting that Dr. C wants to do intraoral surgery. I thought he was an external surgery guy. In retrospect, some doctors decide which approach they feel would be best at the time they evaluate a given patient. Iām sure youāve read that we feel the external approach gives better visibility of the nerves & vascular tissues to help prevent damaging them & the styloid can, in most cases, be cut back closer to the skull than w/ intraoral surgery, BUT some of our members whoāve had recent intraoral surgery said their surgeons were able to cut the styloid back to the skull base intraorally. Not being doctors here, we have a hard time visualizing how that would work, but apparently, itās possible. Please confirm w/ Dr. Chettri that heās not merely shortening your styloids but will cut them back as close to the skull base as possible & will remove the maximum amount of styloid & calcified stylohyoid ligament as possible. This will give you the best outcome.
As far as styloid measurements go, a CT scan is not 100% accurate because it is made up of slices. Measurements donāt account for the little spaces between each image that is taken & thus come up short. Often the radiology report will not coincide w/ the measurement a doctor gets from a scan, & beyond that, the doctor finds, during surgery, that the styloids are longer than expected.
Glad that you found Dr Chetri helpfulā¦having both sides done at once is not something that many doctors do, there can be lots of swelling, but we have had a few members whoāve done well with the one surgery.
I hope the pain flare settles down soon!
Spoke with a few patients who had surgery with Dr. Chhetri. Dr. Chhetri does both intraoral and external and makes his decision based on his clinical findings and a intensive review of the imaging. All of the patients that I communicated with speak highly of his skills and state their symptoms have either greatly been reduced or completely resolved. One of the patients even said the initial plan was to do both intraorally, but Dr. Chhetri didnāt like what he saw on one side and did it externally.
I asked and he tries to take them as far back as he feels safe to do so. He also states that he has done hundreds of these and feels I should get significant relief from the surgery.
As far as having both sides done at the same time, that is a bonus as far as I am concerned (even if it is a tougher recovery).
I am scheduled for surgery on Sept 9 and am on the cancelation list if something opens up sooner. His scheduler said that there is a strong chance of that happening because I have no pre-op requirements.
I am super grateful that my journey from diagnosis to having an appointment for surgery has only been a few months (although the symptoms have been years). If not for this site I am sure I would be still looking for answers or just accepting that it is something that I just have to live with.
I will keep updating when I go in to get these spikes out!
psā¦the flair from having the syloids palpitated when away in about 24 hours.
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Thank you so much for the update! Iāll put your surgery date on my calendar. Iām thrilled that Dr. Chhetri feels that surgery will help you significantly. Itās also good that you have confirmation from previous patients that they had good outcomes from ES surgeries he did for them.
I agree that bilateral surgery done all at one time is a good but more challenging option. I had hoped for that myself, but Dr. Samji is a staunch naysayer in that regard. As long as you know the healing time will be a bit longer & are willing to be patient w/ your body, youāll do fine.
Weāre here for you, of course, all along your journey & are so thankful this forum was helpful for you.
Iām glad that the pain flare has subsided, & good that you have a surgery date to aim for. He sounds like a good doctor!
BB,
so glad you are on the schedule for surgery and it sounds likely you might get in sooner. Ask the doctor if he is going to give RX for predisone or other steroid for after surgery. Especially since you are having both sides at once. It will really make a world of difference in the swelling and you pain. Take a look at suggestions to prepare for surgery and after such as a wedge pillow, and I also suggest in addition a U-shaped pillow to keep elevated. I still am using mine as its more comfortable for me.
wishing you a good recovery and much relief.
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In the weeks since my last post, I have been watching our local Covid #'s rise and had anxiety expecting a call that all elective surgeries have been canceled because of it. Turns out that it will not be Covid that forces rescheduling the surgery but me. Last week we put my mom on hospice and I will need to wait until after she is gone to have my spikes taken care of.
Weird thing is that last week while I was up in LA helping my dad make arrangements to get my mother discharged from the hospital and home on hospice, the TMJ doc called me and wanted to discuss what he saw on the CBCT (umā¦ 2.5 months later and you are calling me now?) He said he did notice the elongated styloids, but wanted me to have a few things checked before having my styloids taken out.
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He wants me to have an endodontic evaluation to see if some teeth need treatment/retreatment
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He thinks he saw a cyst in my left sinus and suggested an ENT take a look.
I am going to message Dr, Chhetri to see what he thinks and to let him know that I have to delay surgery. I am also going to reach out to my local ENT to see if he can give me the steroid injections that he offered to see if I get any relief in the mean time.