Hi there. So- I am just piecing together a lot of symptoms- that I never realized I had and/or was all linked and related to each other. For about a year now- it has felt like there was a global/tumor like feeling in the left side of my throat- everytime I swallow (I named her Beverly ). Turns out- sheâs a ghost and I have Eagle- who would have known. My left trap-scapula has been intermittently over the last year bothering me- dull aches and I continue to think- it was the way I was sleeping- massage, heat, etc yet it always came back. Lack of being able to fall asleep! So many links. I did a CT scan last Friday with contrast - I canât get to the images- and send them along- which is frustrating, but the left signoid is coming in at 3.7 cm. The right 2.4. - any insight here? I live in New Hampshire- I want to see someone who specializes and understands what many of this community understands. I found an ENT at Mass Eye and Ear, Dr Richmond? That has had experience? He is reviewing my scans.
Anyone - want to let me know where to even begin- the surgery scares me- I know itâs needed, Iâm a newly single mother with 3 kids, bills and way too much stress it seems to take time off. Thanks for all of your knowledge and guidance. The welcome email was SO thoughtful and thorough. I look forward to spending my journey with all of you- and sharing the same too, once Iâm on the other side in the future for others
@ninamarie1424 - Call the radiology clinic & ask how you can get a copy of your images. Many places wonât send soft copies but will print 1-2 CDs for you. We recommend 2 - one for you to keep & one to give to a doctor you want to see for ES. You will probably need an external disc drive in order to view your imaging, or find a friend or relative that has one & will lend it to you or will upload your images & share them with you.
Weâre happy to look at your imaging on our forum & 3D images are the easiest way for us to give you an overview of what we see.
Though your styloids arenât excessively long, the left one in particular is plenty long enough to cause symptoms. Focus always seems to be on styloid length, even among doctors, but length is only one physical feature of styloids that can cause them to cause symptoms. Even normal length styloids that are very thick, curved, angled, twisted, pointed or have a rough texture can cause symptoms. Thus, the fact that your right one is still in the ânormalâ range length-wise doesnât mean it isnât causing you trouble.
Cute that you named the feeling in your throat . Itâs good to be able to make light of things that seem scary in order to take some of the fear out of the situation. The glossopharyngeal, trigeminal & vagus nerves all participate in throat innervation. All three are commonly irritated when styloids elongate or display some of the other features I mentioned. Your shoulder/scap pain is due to irritation of your spinal accessory nerve. Itâs one of the cranial nerves that commonly can be bothered by the styloids.
Hi & welcome!
I canât find any mentions of Dr Richmond on our site at allâŚItâs important if you do opt for surgery to see someone with experience, if youâve not had a chance to read it yet thereâs info about surgery & also some questions to ask a doctor in this section: ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
It is important to rest after surgery, or you could affect the healing, and it sounds like that might be pretty difficult for you? Do you have family who could help out? It is the only âcureâ for ES, but there are some medications which can help, and some members have had steroid injections into the styloid area which have helped them put surgery off for a while (they donât always work), but that might be worth a try if it would be very difficult for you to have surgery now. Hereâs a link to some info about treatments: ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Let us know how you get on with Dr Richmond!
I had a bilateral Styloidectomy in 2023. Iâm single with no one else to take care of me and I was OK! Youâll have some pain and you MUST ice. The worst is the jaw pain. Itâs not so horrible. The recovery doesnât interfere too much with your life. Once you recover - Itâs all worth it. The surgery changed my life.
I live in New Jersey and I flew to NC to have my surgery with Dr. Trevor Hackman. There is also surgeon in NYC named Dr. Peter Costantino. I would suggest going to a surgeon who is very familiar with Eagles Syndrome and has done many surgeries. In my opinion, if no one on this site has had Eagles surgery with a specific physician, I would steer away from that physician. I live in NJ and I flew to North Carolina to have my surgery.
Thank you for this. I have 3 children- that would need to be driven back and forth and brought to school and activities- the recovery really worries me. Finding the right surgeon worries me as well.
Concerned that no one has heard of the provider at Mass Eye & Ear. He has yet to call me back. I have reached out to Dr Osborne.
I couldnât drive after my first surgery for about 3 weeks as it was too uncomfortable to turn my head, and I couldnât look properly at junctions, but this wasnât an issue with my second surgery, so recovery can vary alot, but if you do opt for surgery itâs something to consider.
Some members have flown back home a couple of days after surgery, others stay longer to make sure that everythingâs healing properly, so that theyâre near where they had their surgery in case of any issuesâŚthereâs been info on here about getting a wheelchair at the airport and ice packs for the flight which will be helpful for you if you do opt to travelâŚ
@ninamarie1424 - We have a support site that we refer our US members to where you list the needs for help you may have after surgery. The recipients will all be people you know as you get to list them yourself then the site sends out your needs list. You could ask for transportation help for your children during your surgery & recovery times. Itâs a nice system which allows you to ask for help w/o âguiltingâ anyone into feeling obligated.
I flew back home the day after surgery. I was ok until we landed and started walking to baggage claim to be picked up. I started having pain and was pretty tired.
@ninamarie1424 - Did you ever find the right surgeon to do your surgery? Iâm sorry your situation is more complicated that some because of having 3 young children you need to care for soon after surgery & the whole prospect of traveling is also daunting. If you want to stay closer to home, Dr. Annino in Boston has done a lot of ES surgeries & has helped quite a number of our members. Is the Dr. Osborne you reached out to in Boston, too? I know we have a Doctor Osborne in CA & MA on our Doctors List. Just curious which one youâve contacted.
@wings2soar - I just re-read your story & am sorry your first styloidectomy wasnât helpful. That sometimes happens when the first styloid isnât cut short enough &/or the stub isnât smooth off, but left sharp. The other scenario is that the remaining styloid is mostly responsible for the symptoms that remain once one styloid is shortened & if the second one isnât also cut back, it will seem the first surgery didnât help.
Weâre also recognizing now that more of our members have vascular compression - either IJV (internal jugular vein), &/or ICA (internal carotid artery) that will continue to cause symptoms if they are not dealt with even if the styloid is. How long has it been since you had a CT scan to look at the situation in your neck? It itâs been since the year you joined this forum, you should get a new one, done with contrast, to update your situation.
I had my left styloid removed March 4 2015, I no longer have any pain, left side is pain free and the surgery worked. I need to get my right side done, but it is different than the left side, this side is a right side sensation localized near the torus tubarius (Eustachian tube opening). It feels like something is stuck in this region, similar to food entering the nasopharyngeal. It is constant Throbbing pressure, gurgling with swallowing. Not sure who can help me?
@ninamarie1424 I live in NH as well. I had bilateral styloidectomies with Dr. Osborne in CA. I had right side on Tuesday, left side on Wed and flew back on Saturday.
Good info regarding your symptoms, @wings2soar, as it sounds like you have non-vascular ES which means a straightforward surgery like your first one. If the surgeon who did your first surgery is no longer available, you can contact Dr. Annino in Boston. Heâs done many helpful ES surgeries for our members over the years.
). Turns out- sheâs a ghost and I have Eagle- who would have known. My left trap-scapula has been intermittently over the last year bothering me- dull aches and I continue to think- it was the way I was sleeping- massage, heat, etc yet it always came back. Lack of being able to fall asleep! So many links. I did a CT scan last Friday with contrast - I canât get to the images- and send them along- which is frustrating, but the left signoid is coming in at 3.7 cm. The right 2.4. - any insight here? I live in New Hampshire- I want to see someone who specializes and understands what many of this community understands. I found an ENT at Mass Eye and Ear, Dr Richmond? That has had experience? He is reviewing my scans.
. Itâs good to be able to make light of things that seem scary in order to take some of the fear out of the situation. The glossopharyngeal, trigeminal & vagus nerves all participate in throat innervation. All three are commonly irritated when styloids elongate or display some of the other features I mentioned. Your shoulder/scap pain is due to irritation of your spinal accessory nerve. Itâs one of the cranial nerves that commonly can be bothered by the styloids.