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Eagle Syndrome - Online Support Group

Questions for all ES members


#1

I have contacted Dr Samji’s office as recommended by many here & currently sending off my ct-scan and report as requested. Logistically San Jose is very difficult for me from Idaho. So looking for any thoughts on docs in Phoenix area and all ideas welcome. I know some of you have posted about doctors there. Does anyone know if Dr Hinni at the Mayo Scottsdale has any background in ES surgery? I’m a complicated case and need to find the best doc. Thanks so much.


made this topic public #2

#3

I’m UK, so obviously don’t know about the US docs, but I know there’ve been a few mentions in past discussions about the Mayo clinics not recognizing ES. Don’t know about this doctor; hope that others can chip in.


#4

Hi Gina45,

I actually had surgery with Dr. Hinni at the Mayo about 3 1/2 years ago. He took one look at the CT scan and scheduled me for surgery the next week. I had a large elongated styloid process on my left side that had attached to my hyoid bone. On my right side, the stylohyoid tendon had calcified down to my hyoid bone and it also developed a “pseudo-joint” under my ear. My first surgery went pretty well…it made the majority of my original symptoms go away…however I did develop some complications. He had to cut my retromandibular vein so I don’t have much feeling in my left earlobe (that really isn’t a problem). The main issue though is that I developed first bite syndrome and it has still not gone away. Also it affected the nerves in my left eye some. I basically squint a little more on that side and my facial muscles aren’t quite as strong on that side, but it has gotten slightly better over time.
About 4 months afterwards I got surgery on the right side. He didn’t cut as far back as he did on the left and I had zero problems with first bite syndrome, etc. However on that side my original symptoms didn’t have as much of an improvement as the left side. Now after 2 1/2 years I am having progressively more trouble turning my head again and I am pretty sure it has grown back. I am going to get another CT when I can’t take the pain any longer.
I overall had a great experience at the Mayo. It was first class medical care, especially compared to the care I received at Vanderbilt (or I should say LACK of any care from them). However I do not think I will go back to the Mayo if I need another surgery. I will probably go to Dr. Samji or to someone who is extremely familiar with the surgery. I felt like Dr. Hinni knew that the bones being there were a problem and had to be removed, but he didn’t know much at all about Eagle’s Syndrome in general and the aftercare was bad once I left Phoenix and went back home to TN. I think some physical therapy after the surgery would’ve done some good too. I have to say that the left side surgery was the most painful thing I have ever gone through and I couldn’t sleep on or even touch that side of my face without excruciating pain for almost a year. The right side was much, much easier. I wish you the best of luck.


#5

Here is a pic of my left side afterwards for reference.


#6

Thank you Nashvegas for all your good information and photo. Not sure if it helps or just scares the pants off me :cold_sweat:. I am freaking out worrying about the nerve or vascular complications that could arise. I’m “a bleeder” and if they cut or nick the wrong thing it could be a curtains. Currently awaiting consultation call with Dr Samji.
Also in the middle of getting my house ready to sell and move to Phoenix area. Hoping that my plan can be to have 1st surgery with Dr Samji and get this darn thing over with and then the 2nd surgery close to home at the Mayo before end of year.

Did you ever have any issues with your head literally being pulled down on one side? Mine is doing this and then my neck is pulling the other way…I’m totally lopsided and feel like a drunk when I walk.

Can you tell me how long your styloid actually was??? Mine are only 3.8 and 3.7cm according to “and I sadly say” a very poor radiologist report. I’m sure he never looked to see if it was “attached” to anything.

Enough of my whining! Thank you so much for sharing your information. The more I learn from fellow members the more it helps me not feel like an anomaly. :sweat_smile:


#7

Gina45 - Just to reassure you, Dr. Samji is hyper-vigilant about nerve & vascular issues. He uses electrodes to monitor nerve activity during surgery so as to do as little nerve damage as possible. You won’t want to sleep on your surgical side for up to 6 weeks post op, but everyone is different & some people heal much faster than others.
As Nashvegas said, her doctor knew she needed surgery but wasn’t very familiar w/ ES. With Dr. Samji’s experience, he’s seen a lot of different scenarios in the necks of his patients & is most likely more tuned in to the “quirks” of each individual patient & thus more prepared to deal w/ unexpected situations once he is operating. There are always risks w/ surgery & this is a major surgery, but I must say that it was worth every painful post-op moment to arrive at where I am now, First Bite Syndrome & all!!


#8

Spectacular styloid, Nashvegas!!


#9

Thanks again Isaiah for your reassurance about Dr Samji and the process in general. I guess I’m more concerned with my hereditary vascular bleeding than anything else. My skin and vessels are so thin that the blood seeps out into my tissues. Having spent time on prednisone & medrol for my RA and Ankylosing Spondylitis, it has made everything so much worse and my blood vessels let go for no reason at all - just spontaneous bursting. It’s a REAL pain in the patootie and can take months and months to heal.
But the pain I am going through now is just more than I can deal with, SO will be having the surgery whenever we can set it up.
Do you happen to remember how far out Dr Samji’s surgery schedule usually is? Allegiant only flies direct from here to Oakland until beginning of Sept.

Thanks again to everyone for their thoughts and stories.


#10

THat’s sounds pretty grim; hope that you can get surgery, Gina.


#11

Dr. Samji will love the challenge you present w/ your additional issues. He is a very bright guy & I assure you, he will do his utmost to help you have a good outcome.
I’m not sure how far out he’s booking now. It could be as soon as a couple of weeks from the time you talk to him, to a month or so. You can also book your second surgery at the same time if you plan to come back to CA for him to do it. He’ll schedule your surgery on a Monday & will ask you to come in for a follow-up appt on the following Friday. He will also want to see you for a pre-op appt. on the Friday before your surgery. You should plan to be in CA for 8-9 days.
Oakland is about an hour’s drive from Dr. Samji’s office. It will be nice if/when they expand their range. I’m flying Allegiant to OR next week. I usually go on Southwest or Alaska, but you just can’t beat Allegiant’s prices!!


#12

I know this is a late response to your post but I thought I’d give some feedback on the doctor that is helping me w/ ES. I will be having my surgery (extraoral) next month with Dr. John Milligan (AOC Physicians) at St. Joseph/Barrow in Phoenix, Arizona. I’ve had an initial consult and a post CT follow up appointment & he has wonderful bedside manner AND he is very experienced with ES


#13

Good choice! There are several members on this site who’ve had him do their surgeries, I believe w/ good results. Just confirm w/ him that you’d like him to cut the styloid as close to the skull as possible & remove the s-h ligament so there’s no chance of future calcification. He may or may not do what you ask, but at least you let him know your wishes.


#14

Hello BanDruid7…wishing you well on your surgery! I will be so interested to hear how it goes and what procedure Dr Milligan uses. ie: nerve electrodes used while doing the surgery etc. At least you are having it done at one of the very best neuro hospitals in the country.
My plan is to be living in the NW Valley of Phoenix by late summer and I’m sure my left styloid ligament will be screaming to come out by then :slight_smile: If I can have it done locally and not have to make another trip to CA it would be easier for me.
Best of luck for a speedy recovery.


#15

FYI, Dr. Samji also uses nerve electrodes (in case you didn’t know that).

:blush:


#16

Thank you. I’m so happy to hear of others positive experience with Dr. Milligan. I discussed the styloidectomy with him. I told him please get rid of as much of that evil bone as possible. He said he will NOT remove it to the skull base and will leave just under 1 inch :persevere: He also said my styloids are barely over the 3 cm length. Here’s a pic of my CT 20180219_113859


#17

Members have often found that the measurements aren’t accurate, & what’s removed is longer. Hope all goes well for you!


#18

Glad you talked to Dr. Milligan & told him what YOU want. The length he plans to leave them is a bit shorter than the “normal” styloid length (1 inch/2.54 cm). The length of the styloids is sometimes less of a factor than the angle they’re growing or how thick they are. Your right styloid definitely has a steeper angle to it than the left. Do you have worse symptoms on your right side? I believe Dr. Milligan doesn’t do bilateral surgery so you’ll be going back for a second surgery if you decide to get both shortened.

Plan on being down & out for a week post op. Your post op swelling & pain will be the worst days 3-5 after surgery. The key to fastest healing is listen to your body. Rest when it says rest & don’t overdo even on the days you’re feeling pretty good. It takes a couple of months to heal completely.

Get yourself a wedge pillow (Bed Bath & Beyond sells a good one) & plan to sleep fairly upright (30º elevation) for several weeks post op as this will help you to have less swelling in your neck & throat. Get gel ice packs w/ covers to use for a couple of weeks post op (15 min on & at least 45 min off). If Dr. Milligan doesn’t prescribe them, a stool softener/laxative (or you can use Magnesium citrate - CALM is a powdered form that you can mix & drink & titrate to the strength you want) as the opoiod pain meds you’ll most likely be taking are very constipating. Stick w/ the pain med regimen Dr. Milligan recommends for at least the first week as letting pain get ahead of the pain meds can take several days to recover from. I speak from experience. Don’t worry about getting addicted to your pain meds. That won’t happen in the short time you’ll be taking them.

Also plan on a soft or liquid diet for several days to a week post op. Some people prefer cold things like milk shakes or smoothies & others warm soup type food. A decent blender will potentially be your good friend for a bit post op.
Please let us know how you are post op!
:smiley:


#19

Thank you for that great info.I will definitely be using it! The right side is the symptomatic side. Sometimes it flares so bad that I get intense pressure behind my eye and cheekbone & I get a stuffy nose. The worst symptoms are a feeling like there’s a golf ball in my throat by my tonsil, glossopharyngeal neuralgia, dizziness, presyncopal episodes, pain in the back of my neck below the occipital bone & tinnitis. Sometimes I think surely there must be something more insidious going on because the pain is so debillitating but with 2 MRI’s, 4 CT scans, 3 neck ultrasounds & numerous radiographs all they can find is elongated styloid processes.
I actually pointed out to Dr. Milligan that even though both styloids are really close to the same length the right side looks to be positioned more medially & anteriorly whereas the left looks to be in a more downward angle. I do have very slight pressure in front of my ear on the left side but it’s not painful. I attribute that to my TMJD. Maybe I am slightly symptomatic on the left side but the right side is so darn painful it’s distracting me from feeling it on the left, lol. :grin:


#20

Don’t want to worry you, but just to be prepared- we don’t know why, but quite a few members have found that after the first surgery, the second side can ramp up a bit with the pain/ symptoms, so alot of us have ended up having both sides done. So don’t panick if it happens to you, but hopefully it won’t!!