I am fairly new here and posted a few months ago. Lately, I’ve been in a great deal of pain. like a fork is stabbing my left tonsil area. I’m unable to turn my head to the right without experiencing a lot of discomfort. Swallowing is growing more difficult as well. I’m constantly dizzy and my head aches. My tongue feels like it’s on fire!
These are all familiar symptoms for most members of this support group, I’m sure. As I mentioned in a previous post, I was diagnosed many years ago and had a “partial” bilateral styloidectomy. Over the years, the pain has only gotten worse and has now become nearly intolerable, even with pain meds. I’m scheduled to see a local ENT this Thursday and I’m bringing all my old medical records and CT scan from my original diagnosis. I am certain I’m headed for another surgery!
Dr. Samji would be my first choice as a potential surgeon. I love that he also treats singers (I have a background in vocal music) and would be overjoyed to regain my singing voice. Of course, I would have to fly across the country for the surgery, so I’m considering doctors in MA as well (I live in Maine).
Oh, I almost forgot! Have any of you experienced tingling and/or white fingers and hands from Eagle’s Syndrome? I’m beginning to think there may be some compression of the carotid arteries as well.
At this point, I would appreciate any advice or suggestions to help with the pain until I can see a surgeon. Are there meds that work for you better than others? I’ve also been meditating and that seems to help a bit.
Thank you all so much! I hope all of you are hanging in there during there challenging times:)
Hi Cat1!
So sorry that you’re still suffering after such a long time! Did the surgery help at all with your symptoms? It could be that not enough was removed during the surgery, and/ or the styloids re-grown with time. There could also be scar tissue affecting the nerves & causing pain too.
If you’re seeing another doctor, it would be a good idea to get a new CT to see what’s going on for starters. I would suggest that as you’ve had one surgery already, it would be best for you to see one of the really experienced doctors, like Dr Samji as you mentioned, or Dr Cognetti in PA for a revision surgery. But if that’s not possible, have a look at the doctors list if you haven’t already. Here’s the link: https://forum.livingwitheagle.org/t/us-doctors-familiar-with-es-2019/4752
As for pain relief, here’s a link for the info in the Newbies Guide Section:
Nerve pain medications can help, like Gabapentin, Amitriptyline, Carbamazine etc. Also muscle relaxants like Baclofen can help too sometimes. Some members have been helped by lidocaine/ steroid injections into the area, although it’s usually just temporary- the time it helps for varies a lot!
There’s no explanation for tingling & hands going white, but other members have experienced it! The nerves for the hands exit lower in the neck than the styloids are. Compression of the carotid arteries with vascular ES causes dizziness & headaches, but the carotid arteries go to the brain, so wouldn’t affect the arms. Some members have had Thoracic Outlet Syndrome (TOS) in addition to ES which can cause tingling in the arms & hands. Might be worth looking into? Raynauds too can cause the hands to go discoloured.
I hope that you get on okay with the ENT appt., let us know how you get on!
@Jules shared some really great references from the site that helped me make better decisions. Unfortunately I found this site after I got diagnosed, but the blessing was that I got referred to the ENT office where Dr Samji works.
If your body is creating a lot of calcium it is possible that the styloid processes regrow.
I had similar symptoms with my throat, tongue, dizzy spells, and headaches. Those pains I couldn’t control with any standard medications.
The tingling sensation you described, I never thought that would be part of ES. I had tingling alongside my right arm into my palm. Since I read your post, I realized that I have not felt that since my surgery. For me it mostly happened when I wake up in the morning.
Just this weekend we went camping by Russian River and it was raining and about 55 F outside. For such a long time I felt cold, like my circulation wasn’t that good. This weekend for the first time in a while, I had a swim at 55F and I felt great.
I hope these references can help you make better decisions and if you need anything please don’t hesitate to let me know.
Thank you for your reply. I will definitely push for a new CT scan when I see the ENT. Does Dr. Congnetti perform the intraoral surgery or the extraoral surgery? My son lives in Baltimore and PA is a short train ride from his house. Dr. Congnetti might be a better choice for me in terms of travel and recovery.
I do believe the dizziness and headaches could be related to carotid artery compression. I have tinnitus in both ears and my thinking also seems to be affected. I’ve been evaluated for TOS and the tests were all inconclusive. I actually have been diagnosed with Raynaud’s, although I wondered if there could be a connection to Eagle’s as well.
Thanks so much for the suggestions! You’ve been very helpful.
I have some thoughts re: Drs. Cognetti & Samji that you might want to consider. Both doctors do external ES surgery, however, Dr. Cognetti recently offered the option of external or intraoral to one of our forum members. There is nothing wrong w/ that. It was just a note of interest to me & perhaps others. Dr. Cognetti is a wonderful surgeon, but he does not remove the styloid back to the skull base. He is conservative & leaves an inch of styloid in place (it’s natural length) in order to protect the facial nerve which exits the skull close to the base of the styloid process. Dr. Samji removes the styloid to the skull base when possible which is most of the time. There have only been a couple of cases I know of where he had to leave a bit of the styloid behind to avoid injuring a nerve. Dr. Cognetti’s first surgical focus is cancer. ES is not a priority in his practice so he only does ES surgery one Fri./month. Dr. Samji’s original practice focus was, as you noted, to aid singers who had developed vocal problems. His specialty is throat/vocal cord cancers. At some point, he began doing ES surgeries & has become very skillful in that arena. He makes ES surgeries a priority in his practice & does them twice a week. Unfortunately, having a more complete ES surgery doesn’t guarantee the return of your singing voice, but it just might be the ticket to that end for you. We have had a number of members who are singers, & sadly, I’m not sure any of them came back to report if they recovered their ability to sing after surgery.
Dr. Samji did my ES surgeries in 11/14 & 8/15. For the most part my symptoms are resolved. I have a bit of intermittent residual nerve pain, but I count that as a reminder of how far I’ve come since I had ES. It does not impact my ability to live fully & entertain the very physically active lifestyle I practice.
Hi Cat,
I have Raynauds in my family, have Ehlers Danlos and have had surgery for Thoracic Outlet Syndrome so yes on those symptoms in the hands. I think alot of arm and hand stuff issues have come from my neck radiating down from the ES.
Dr. Samji just did one side on me on April 27th and I am doing well although too early to tell as Im still half numb in my neck. He will want to see a CT Scan and likely an updated one as Jules suggested.
You can send Samji your scan and he will do a phone consult which I suggest you do at a minimum for a 2nd opinion if you prefer to stay on east coast.
Thank you for your reply. Judging from what you’ve shared with me about the two doctors, Dr. Samji sounds like a better fit for me. My old CT scan showed elongation and calcified ligaments. There could very well be scar tissue in there that’s formed over time since my first surgery. I would rather go with a more thorough approach because I definitely don’t want to have a third surgery!
As much as I’d like to regain my singing voice, that would simply be an added bonus. My main priority is alleviating the pain so I can lead an active, full life.
I’m very glad to hear that most of your symptoms have resolved and you’re able to live a full and active lifestyle!
Thank you for getting back to me! My cervical spine has been ruled out as causing the tingling in my hands by two physiatrists, and a chiropractor, so I’m fairly confident it is being caused by the ES or Raynaud’s.
It’s great to hear that I could do a phone consult with Dr. Samji! Even if I choose a surgeon on the East Coast, I would love to have his opinion on my case.
If you’re looking for a surgeon closer to home, Dr. Delacure in NYC would be worth consulting. BrooklynGirl & at least one other member had ES surgery done by him. You can search for their posts about him by clicking on the gray magnifying glass icon & typing his name in the search box.
So I had an appointment yesterday with a local ENT. I brought all my old medical records and CT scan from 2011 (when a different ENT diagnosed Eagle’s syndrome and then performed a partial styloidectomy). This new doctor thinks I should put Eagle’s Syndrome out of my mind. He then presumptively diagnosed me with carotidynia and glossopharyngeal neuralgia. He is ordering an MRA because he saw a compression of my left carotid artery on the left side on the original CT scan from 20011. He also suggested (depending on the results from my MRA), that I make an appointment to see a neurologist at a well-know medical center (such as John Hopkins, etc.) I’m surprised he’s discounting the Eagle’s Syndrome diagnosis because the left carotid artery compression clearly is very close to the styloid process.
Firstly Eagles is a listed cause of GPN- it’s mentioned on some of the research papers I’ve seen, so that diagnosis doesn’t rule out ES! Seeing a neurologist might help you with pain relief suggestions, but if it is caused by ES then any other treatment isn’t going to help long term, only removing the styloid will! The carotidynia equally could be caused by ES, but as you say, compression sounds like it’s caused by the styloid. An MRA would hopefully confirm if it is the styloid causing the compression, but it sounds for some reason as if the ENT isn’t going to look objectively at that; not all doctors know much about ES & it sounds as if this ENT doesn’t.
I’d suggest seeing one of the doctors we’ve mentioned before first before you waste time, money & have any more investigations with someone else who knows nothing about ES. A shame that you’ve not had a successful appt. today.
I totally agree w/ everything Jules said - especially - get a second opinion from one of the more experienced doctors on our Doctors’ List before wasting time & money on people who are dismissive of ES.