I had my follow up appointment today after being diagnosed by a GI doctor at Mayo Clinic. The doctor i saw today was Dr. Rizzo, a physical medicine and rehabilitation doctor. He was very thorough and informative, but isn’t an ES specialist but has researched it. I saw my CT scan more clearly, and both of my elongated styloid. I only have ever felt symptoms on one side, so he said a question for my potential surgeon would be if i should get both removed or just one. Having spoken with a few members on here, I’ve learned i should probably do a unilateral surgery on the side that i feel symptoms.
Anyways, the Dr. I saw today gave me 5 potential options i could try for some relief, one being the surgery. Of course no one will know how effective any of them will be, but it was good to hear there are more things to try than i thought. I understand surgery is the option with the most success and i still think i will get it sometime in the future. I’m just not jumping on it immediately because i am 24, have never had surgery, and am trying to start my career. I would LOVE to be symptom free and am confident i will be one day! In the meantime of getting the surgery, i might try some of the options he mentioned. Options other than surgery: medication, physical therapy, body mechanics manipulation, and acupuncture. I am aware i will most likely need the surgery for complete relief, but i am willing to try some partial or temporary relief in the meantime. Having had my symptoms for the past 6 years, i don’t think physical therapy will help my symptoms, and the doctor wasn’t too confident either. The medication would be a low dose and i will discontinue it if it does not help me. I will update the forum with what options i try and how they go. I will still try to get an appointment soon with an ES experienced doctor for recommendations and surgery information, most likely Dr. Bunnell in Jacksonville, FL. Thank you to everyone who has gave me recommendations and shared their stories!
Has anyone tried amitriptyline, gabapentin, or acupuncture and gotten any temporary or partial relief?
I’ve been on so many meds and none have worked in my case: Ativan, muscle relaxers, Gabapentin, Dulexetine, Nortriptyline, Lexapro, Cymbalta to name a few. Most meds were low dose but I’m currently on 1200mg of Gabapentin and it hasn’t relieved a thing (likely Glossopharyngial nerve irritation). I’m afraid to stop taking it because it’s bad now and I don’t want it to get worse should it be giving any benefit. Plus, I may need to be on it after my surgery in May in case I have nerves that need to heal so I may as well stay on it for that reason alone.
Also, I’ve seen a number of PTs, strain-counterstrain specialists, dry needling (similar to acupuncture), deep tissue work, shockwave therapy and Chiro care. Nothing has helped me.
BUT….that doesn’t mean you shouldn’t try any of the options given. Everyone’s case is different and I’ve read a few folks have indeed had success with meds and therapy. As you’re well aware meds are just a bandaid fix and the calcification will likely continue. In the short-term, it may buy you time to learn intimately about this diagnosis and better understand the surgical route while getting answers from experienced specialists.
My surgeon here in MN does have ES experience and also says, “if it hurts, get rid of it”. He also believes in removing the side that’s symptomatic regardless of length. He had a patient who had a stroke due to ES and artery compression. He removed the shorter one causing the compression and the longer one has yet to cause any issues. His patient had gotten on with normal life ever since. In simple terms, if it isn’t broke, don’t fix it.
Being active makes a surgery tough for sure, but I can assure you, there’ll never be a good time to have a surgery. I’m 50 and I feel like I’m always running marathons between work, teens kiddos, friends and hobbies - given the choice, I would’ve rather have put this to rest when I was in my 20s…when I had waaay more energy
Best always to you and please do share your journey! Lots of people will benefit from your experience!
Thank you so much for sharing all of this! I’m sorry nothing has worked for you so far; i hope the surgery relieves you! Looking forward to hearing about it If you don’t mind me asking, what surgeon did you choose and why did you choose them?
I’ve always been reluctant to try any medications for ES due to potential side effects, especially if there’s no guarantee they will help me. I am not confident any of the options we mentioned will help me other than surgery, but like you said it won’t hurt to try. I have yet to talk to a doctor who has treated patients with Eagle Syndrome, so that will be my next step.
There are two specialists on the list here in this forum that are in MN. Dr. Omlie is a vascular surgeon with MHealth (Fairview Ridges/University of MN) and Dr Ondrey is an ENT with Health Partners but also has an affiliation with U of M.
I visited with both. Dr. Ondrey knew I met with Dr. Omlie and agreed he was more suitable for the job but helped me get a a 2nd CT - a maxillofacial CT to specifically look at the styloids just to further confirm that they are elongated. And it was good for me to get the added opinions. The difference between the two are that Dr. Ondrey is more focused on classic ES as what I have and Dr. Omlie is more focused on vascular ES. Regardless, the dagger must come out!
I felt Dr Omlie was the best specialist given his direct experience with ES, experiences from other members here who’ve been in his care as well as knowing he’s done thousands of surgeries in this neck area and is very comfortable doing so.
It’s been a 6 month wait for me since my initial meetings with either of these specialists due to CV19, hospital staffing shortages and the backlog of initial tier surgeries (like amputations…which indeed are priority). But the ball is finally rolling and I expect a date in May to be scheduled in the coming week or two. I had considered trying to locate another surgeon who could get me in sooner but I wouldn’t know where to start to locate another ES experienced surgeon near me. It was best to just stay on my existing path vs starting a whole new path.
I’ve probably posted here far more than I’d like to admit because I’m usually a wreck when I don’t have answers but you can search my name and find pretty detailed posts about my meetings with both surgeons. I tend to be “wordy” (have you noticed? Lol!) because it’s my hope others who’s paths cross here will benefit from the details.
We do have members who use amitriptyline for ES symptoms & some who use it post op for nerve symptoms that didn’t resolve enough after surgery. It seems to help more in the post op cases perhaps because the styloid(s) is/are gone, & the nerve(s) is/are no longer being constantly irritated but does have a bit of residual damage. Just speculating here.
It’s certainly worth trying out the surgery alternatives though I think having a consult w/ Dr. Bunnell is a good idea even though you currently plan to put off surgery for awhile. That way you will have made initial contact, will know if he feels like the right surgeon for you & will have an easier time taking the step to surgery when you’re ready.
We look forward to following your journey. Anything you share regarding your experiences w/ the alternatives suggested will be helpful for our members here. Thank you in advance for whatever information you can provide.
You have certainly not over-posted, we continue to appreciate the information you share & your positive attitude even though you’ve had a somewhat long wait for surgery. What you share is helpful & encouraging for others who may be waiting or still looking for the right ES surgeon.
Reading the information about Dr. Omlie vs. Dr. Ondrey was of interest for me so I know it be useful for others as well.
I’m on pins & needles here awaiting the news that your surgery has been scheduled & learning the date! Looking forward to celebrating w/ you when that time comes.
I’m on Amitriptyline for nerve pain as the styloids affected the Trigeminal nerve; it worked well for me, I do still get some aching but the meds definitely help. I haven’t noticed any side effects, so have been lucky- it helps with sleep too, which is great as the pain kept me awake alot! I do still take it; my surgery was quite a few years ago & the pain didn’t go completely. (It did improve though, & I was starting to get numbness & tingling in my face which has gone post surgery)
Re the other treatments, did the doctor suggest the steroid/ lidocaine injection into the tonsillar area? Some members have found that helps. Also I would be very wary of any manipulation unless it’s someone who knows about ES & is very experienced as it could potentially bring the styloids into contact with other nerves or blood vessels. I had traction & manipulation treatment after a whiplash injury & it was agony, although I’m UK so maybe the therapists are different in the US…
Hi!, I have been on this journey for 15 very long years. I too live in Florida and saw Dr. Burnell in Jacksonville but had my surgery in Miami with Dr Arnold. First I would say physical therapy or massage gives you more of a chance of damage to structures surrounding your styliods. Medication can help calm down issues or help with discomfort but if your discomfort is caused by a styliod you are not getting at the source without surgery. I found oral steroids worked for my pain which was extremely sever on one side and but did not help on my second side. A Eagle Syndrome doctor will usually recommend surgery once other therapies or diseases are ruled out. In my case I had my first side removed 12 years ago and my second side which had been less symptomatic removed 7 months ago. I am now left with tinnitus on my second side and regrets not having surgery sooner because now my like is constant difficulty in dealing with 24 hour hissing in my second side.
Thank you for your helpful information. I’m sorry for the residual tinnitus you have from your second surgery & completely sympathize. I acquired Meniére’s Disease between my ES surgeries & don’t have a hiss but a loud ringing. It vascillates & is worse some days than others. Misery loves company, eh?!
There is a chance that your hiss will reduce/disappear over the next months as we’ve learned that nerves can take a year or more to heal. I have First Bite Syndrome from my first ES surgery (2014) that, at 8 years post op, is continuing to decrease especially in frequency. There is hope for your situation.
Out of curiosity, did Dr. Arnold do both of your surgeries?
Dr Arnold did both of my surgeries. He is a cancer neck specialist. I would not recommend him for vascular issues but he does one or two ES surgeries each month and has been doing them for at least a dozen years. Miami university hospital takes more precautions than most hospitals which is why I did not have surgery in Jacksonville.
I do have some good days with my tinnitus but just had dental work so it seams to be flared up for the last several days….hopefully it will calm down to a more manageable level soon….I have only had one light headed spell since my second surgery……
I believe the delay in getting my second styliod out caused my current situation……I keep hoping for a cure for tinnitus but I believe it is a long way off….
Thanks everyone for your input! All of the info is greatly appreciated and helpful! No amount of information is too much on here; this forum has helped me greatly since finding it as I’m sure it has for every new member. I will probably get the surgery within the next couple years. Will update you all throughout the process and what i try in the meantime
If dental work flared up your tinnitus, it’s likely coming from your trigeminal nerve which is very often reactive to dental work & can contribute to tinnitus. Since it’s one of the nerves affected by ES, it is very possible it will heal/calm down over some future months. I’m very hopeful for you!
Thank you, too, for your info about Dr. Arnold & MUH.