I want to start by saying thank you so much to Jules!! I’ve finally figured out how to post a question… So I’m really new to ES. I was diagnosed by a radiologist in March 2021 after 2 plus yrs of struggling with horrible left sided ear pain and after my dentist pulled two of my upper molars out and saying they were fine bc I was complaining that they felt like I needed a root canal. Also neck pain and throat pain. So I finally got into the ENT that my pain doc sent me to that’s been giving me steroid shots in my neck then ablation. He asked my symptoms then looked in my throat and said oh it’s for sure eagle syndrome. Left styloid bulging at the left tonsil area. Tonsils are removed. So that was that he told me to wear breath right strips and take vit d and come back in 6 weeks. So I called medical records to see what his dictation was and that’s where I read he was going to refer me to Dr. Samji. By the way my ent doc said that he’s only done a few of these surgeries and he damaged the last pts nerve and she couldn’t feel the left side of her throat or tongue so now has a g tube so I was flipping out after I left there thinking he was going to want to do mine so I’m glad I saw his dictation notes and saw Dr Samji’s name as a referral. I’ve read where his name has been mentioned and Jules used him and was extremely pleased. What do you all think about Dr Hackman or Dr.Bove. Any information would be greatly appreciated… And thank god for all of you. You have made my life tolerable knowing you all understand what we go through and there is light at the end of the tunnel.
Actually, Jules is in the UK, & Mr. Axon did her ES surgeries; however, I’m in the US & Dr. Samji did both of mine (I’m the other moderator on this forum). It is important to see an experienced ES surgeon, BUT even then, no doctor is perfect. Even the most experienced come across situations where things can go wrong during surgery, & patients end up with long term-post op problems. We are each configured slightly differently inside our bodies, & it isn’t until the doctor can see the layout of your muscles, nerves, vascular tissues, etc. that (s)he knows how challenging the styloidectomy/surgery will end up being.
I am an example of that. My glossopharyngeal nerve was wrapped around my right styloid like a vine. Dr. Samji had to carefully unwind it in order to shorten my styloid. Because of that, the nerve was irritated & half my tongue was paralyzed for about 6 months after surgery. It wasn’t numb, but the motor part of it didn’t work so eating & speaking clearly were a little challenging. From 6-9 months I mostly regained my tongue function. It’s still a little off, but having that as a post op problem was worth it because my awful ES symptoms mostly went away. I also have permanent numbness on my face along my jawline on the left from surgery on that side, but again, it’s insignificant compared to the great improvement in my health which came from having my styloids removed.
Every surgery has its risks. We always recommend that you consider whether you can live w/ your symptoms or if they’re “life altering” to the extent quality of life is compromised. When that happens, it’s time to consider surgery.
Here are links to discussions about Dr. Hackman & Dr. Bove. In the future if you want to search for that type of info, you can click on the magnifying glass icon above right & type the doctor’s name or a key word into the search box. That will bring up posts that mention what you’re searching.
Thank you so much Isaiah ! I’m glad to hear your tongue continued to heal… I do understand the risks of surgery jst scares me which I’m sure that’s normal . Sometimes I think bc I’m in the medical field I over think a lot of things when it comes to my own health. Curious to know if you were having issues with your tongue before surgery as far as twitching and fullness. I really appreciate all your knowledge.
Being in the medical profession can both be a blessing & a curse. A blessing from the perspective that you understand better what’s going on in your body than someone who has no medical background & a curse from the standpoint that you know what’s going on in your body & better understand how complex it is, especially if you work in the OR, ER, acute care, or ICU & have had to deal w/ more complex cases.
The only problem I had w/ my tongue before surgery was pressure at my tongue base on the left side (the right is the one that was paralyzed). My styloid was pressing on the base of my tongue & that was annoying but didn’t affect my speech. It may have affected my ability to swallow as choking (on liquids & food) was one of the ES symptoms I had.
Yes you are right !! I find all of this information so informative and interesting. I’m starting to feel like I’m not going crazy when I read some of the symptoms. I think I read somewhere that Dr. Samji wants to know the length of the styloid’s . When I read the results of my CT I didn’t see anywhere where the measurements were listed. Just that they were elongated. I apologize for being all over the place. Just trying to get all my ducks in a row so when I go back to my ent and he gives me my referral I’ll be ready. I feel like I’m obsessed with this site. Finally getting answers
Stella, your next to the last sentence made me laugh. I was exactly the same when I was first diagnosed w/ ES & then found this site. I couldn’t stop reading (& posting ).
I had my first ES surgery in 2014, & just today, went back to the radiology clinic & picked up a copy of my CT scan & the radiology report. I’ve been so curious what the written report said, & now I know that it DID NOT contain styloid measurements. It only indicated my styloids were elongated almost to my hyoid bone. Dr. Samji saw me w/o requiring measurements. That said, he’s seen many more ES patients since then, & I think requires measurements now because he’s had a lot of inquiries from people who didn’t have ES but thought they did. He does measure the styloids himself once he receives the radiology report & CT scan as his measurements don’t always agree w/ the radiologists’. & often finds the styloids to be longer than the reports indicate. Even during surgery it’s not uncommon for the surgeons to note the styloids are longer than reported. This is because CT scans are done in slices,& there is a tiny gap between each slice which keeps measurements from being perfect.
Let me reassure you that you aren’t going crazy. The symptoms of ES can be “all over the map” (i.e. your body) which can lead to that feeling though. You can request that your scan be re-read & the report amended to add the length of your styloids. If the lab won’t do it for you, you can have your referring doctor request it.
Happy Friday to you!
Thank you Isaiah ! I’ve been trying to figure out about flying after surgery. Do yo know anything about that ? I live in Indianapolis so jst wandering how that works. I feel like the 5 weeks before I go back to see my doctor is going to take forever. My tongue is starting to do crazy things along with all the other issues. I’m on so much gabapentin and I hate it bc it makes me feel a bit loopy. Not good with being a nurse I’m guessing I’ll be doing a video visit if he excepts me as a pt. Do you know about how long it takes to set up surgery if needed.I hate not knowing and sorry to be such a bugaboo . But truly appreciate you
No worries about asking questions! That’s how you get answers & answers help you feel more secure about your situation.
From what I’ve heard from our members who’ve traveled for surgery, the trip before surgery is often more difficult than the trip home. What I recommend is ask for a wheelchair when you get to the airport & let them escort you to your gate (do not feel embarrassed to do this). For the flight home, get an upgrade to business or first class if you can afford it. This gives you a bit more room to spread out & recline if you need to. Flight attendants will be happy to supply ice, but you should bring a Ziplock type back to put it in so you can ice your neck. Even if you can’t afford to upgrade your airplane seat, you can still ice your neck on the lfight home & that will be very helpful. Other than that, taking your pain meds on schedule will also make a difference when flying.
I am sorry about the gabapentin side effects. You could try Amitriptyline to see if that is less of a problem. As you know there are several “families” of nerve pain meds & a number of “offspring” within each family. Each med is slightly different from its “siblings” which means some may work better for you with less side effects than others. Experimenting to find the right fit can take time & patience though.
After the consult,. Dr. Samji will usually schedule a patient he accepts w/in 2-4 weeks for surgery, so turn-over time is pretty quick. You will want to take 4-6 weeks off of work depending on how strenuous your nursing job is. If Dr. Samji isn’t helpful, you can try consulting with Dr. Cognetti or Dr. Newman in Philadelphia &/or Dr. Hackman in Charlotte, NC. All of them are good options.
Perfect! As always you are a Pillar of knowledge ! Ty