# Rhode Island w/Eagle Syndrome in Need of Recommendations **URL:** \ **Category:** Bens Friends\ **Created:** [November 9, 2024, 1:41pm UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484 "2024-11-09T13:41:55Z")\ **Posts on this page:** 15\ **Page:** 1
**Author:** ![alirat528](https://avatars.discourse-cdn.com/v4/letter/a/df788c/32.png) [@alirat528](https://forum.livingwitheagle.org/u/alirat528)\ **Post date:** [November 9, 2024, 1:41pm UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/1 "2024-11-09T13:41:55Z")
Hi, I am in need of recommendations. I had surgery on both sides at Brigham & Women’s in Boston in 2019 and 2020. I feel that they messed up when they did the left side because they cut the muscle of the neck on just the left so I have a bulge on just my right side. They also did not cut enough of the styloid on the left side, so it is still considered eagle syndrome and I’m still getting sharp pains. So, I have accepted it even though I’ve been upset about it. Now, I have been diagnosed with an aortic aneurysm and carotid artery disease with mild calcifications. I just read yesterday that both can be a result of Eagle Syndrome. My question is what do I do? The otolaryngologist in Boston does not handle the vascular part of Eagle Syndrome. I feel like I need a new doctor that can go in and take more of the styloid out on the left and also I may need a stent of the carotid artery. Does anyone have insight in what I should do and where I should go? Thank you!! ---
**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\ **Post date:** [November 9, 2024, 7:05pm UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/2 "2024-11-09T19:05:11Z")
I’m sorry that your surgery hasn’t been successful, there is a chance maybe that the styloid has grown back as occasionally they can… A far as I’m aware ES can’t cause aortic aneurysm; the styloids are in the neck whereas the aorta goes from the heart down the through the abdomen. If the styloids impinge on the carotid artery in the neck then they can in extremely rare cases cause a dissection or a stroke… If you suspect you have vascular ES then a CT with contrast would hopefully show this, more detailed testing can be done as well. There are a few of the doctors on our list who are experts with VES; the closest to you would be Dr Costantino in NY, or Dr Fargen in NC. Otherwise Dr Hepworth in CO is very experienced too. They would be your best bet for revision surgery & VES surgery, here’s a link to the Doctors List so you can see their details: [Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle](https://forum.livingwitheagle.org/t/doctor-lists-no-discussion/10245) Unfortunately as there are so few doctors treating VES, then you would have to be prepared to travel a bit… ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [November 10, 2024, 6:40am UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/3 "2024-11-10T06:40:45Z")
@alirat528 - I’m sorry to hear that you’ve had some problems as a result of your ES surgeries. Did your ES pain ever go away after your surgeries or have the sharp pains on the left been a problem all along since surgery? Did your surgeon tell you, which neck muscle was cut during your left styloidectomy? That’s not a typical part of ES surgery, so I’m curious. @Jules has given you some great advice & the names of some very excellent VES surgeons. I hope you’re able to get an updated CT scan w/ contrast & an appointment with one of the doctors she mentioned very soon. ---
**Author:** ![alirat528](https://avatars.discourse-cdn.com/v4/letter/a/df788c/32.png) [@alirat528](https://forum.livingwitheagle.org/u/alirat528)\ **Post date:** [November 15, 2024, 11:40pm UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/4 "2024-11-15T23:40:37Z")
Hi, I’m sorry for the late reply. I’m not used to using forums. I’m also in denial because I don’t want to travel. The pain has been there all along after surgery and I can’t sleep on that side due to my heart feeling like it is racing and has stopped and I can’t breathe … I was looking at an ES group on Facebook and it seems as though it is vascular. I forgot the name of what they cut on the neck but the doctor said that most people don’t like the look of them and I said but now I have 1 and it looks uneven now since he cut one side and not the other side. Thank you so much for listing options but how many times would I travel there? I am assuming they need to see me before the surgery. Thank you so much Alicia ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [November 15, 2024, 11:55pm UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/5 "2024-11-15T23:55:39Z")
If you were to see Dr. Costantino, I recall he’ll do a virtual initial consult so you wouldn’t have to travel to see him up front. I assume if he agrees to do surgery for you, you would need to travel to see him at least the day before surgery for a pre-op appt. & then either stay a few days or travel back for a post op appt. I’m not sure what his protocol is after surgery. He does remove the posterior digastric muscle in cases of IJV compression, but it’s not in the neck, plus C1 gets a bit shaved off. Here’s a picture of it so you can see the location of the posterior digastric: > [@Posterior Digastric Removal for IJV Decompression](https://forum.livingwitheagle.org/t/posterior-digastric-removal-for-ijv-decompression/17469): > > There has been some question as to why Dr. Costantino removes the posterior digastric muscle as a routine part of his IJV decompression surgeries. I just found this great picture online that made it more clear to me as to why he would do this. Though I don’t agree that it should be routinely removed, it does show that the posterior digastric runs a course that could definitely contact the IJV & impact its flow. [[image] ](https://regenexx.com/wp-content/uploads/2021/01/Eagle-Syndrome-4-1024x678.png) Racing heart isn’t necessarily a vascular compression symptom. I had that due to low blood pressure when I exercised, & it was caused by my vagus nerve. It stopped after my styloid was shortened. Can you post a picture of your neck to point out where it’s uneven. That might help to the answer the question of what muscle was cut. ---
**Author:** ![alirat528](https://avatars.discourse-cdn.com/v4/letter/a/df788c/32.png) [@alirat528](https://forum.livingwitheagle.org/u/alirat528)\ **Post date:** [November 16, 2024, 12:19am UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/6 "2024-11-16T00:19:48Z")
Thank you so much for the valuable information! The doctor wrote this in is notes: “We discussed the need to divide the platysma for the surgery and the potential risks to the nerve supplying it.” Here is a photo of it: ![Inline image](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/4/4e6946dbcb9e895f5e7cdb985f44b3da3744532b.jpeg) ---
**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\ **Post date:** [November 16, 2024, 2:32pm UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/7 "2024-11-16T14:32:55Z")
It sounds from what the doctor said that they haven’t cut any muscle out, but that they went in between the muscle fibres . It looks as if the muscle is enlarged your left, we have had a few discussions about this as other members have had this issue one side, unless the nerve was damaged during surgery? I agree your neck looks very uneven ; we have had some discussions about this, the SCM muscle is commonly affected & enlarged, but I can’t find the discussion I was thinking of at the moment, I’ll keep looking! ---
**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\ **Post date:** [November 16, 2024, 8:09pm UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/8 "2024-11-16T20:09:49Z")
Here’s a link to the discussion I was thinking of with some pics members have posted: > [@Does this sound like Eagles? If so, does anyone have advice/tips on navigating the medical system to get tested?](https://forum.livingwitheagle.org/t/does-this-sound-like-eagles-if-so-does-anyone-have-advice-tips-on-navigating-the-medical-system-to-get-tested/16686/7): > > Your story has some simmilarities to mine. I also feel significantly worse when driving because my already tight and huge left SCM tenses up even more. Can you check your neck if one side is bigger compared to the other. My left SCM was injured at birth. Also felt something pushing on the left side of my throat. Low dose of botox in my left SCM already gave relief. Your tight neck muscle doesn’t have to be the SCM so have a thorough check. Not exactly like yours but might be interesting? ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [November 17, 2024, 2:55am UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/9 "2024-11-17T02:55:53Z")
@alirat528, the bulge in your neck doesn’t exactly look like it follows the line of your SCM as it’s more in the center of your neck but that may be in part due to the angle of the image. I did a Google search to learn about the platysma and found this short, helpful video: > **[Platysma](https://www.kenhub.com/en/library/anatomy/the-platysma)** > > The platysma is a superficial muscle of the anterior neck. Learn everything about its anatomy now at Kenhub! I have a hard time believing the platysma could create such a lump because it’s such a thin & diffuse muscle, however, as @Jules mentioned, if the nerve was damaged, it could cause that muscle to contract severely & perhaps cause what you see. It’s the facial nerve that innervates the platysma. Have you noticed any change in your facial expressions since your surgery? I sympathize that you’re having to have surgery again as I just had my third ES surgery two weeks ago for a similar reason to yours. I hope whomever you see for your next surgery can give you some better information about why your neck ended up lopsided after your first round of ES surgeries. ---
**Author:** ![alirat528](https://avatars.discourse-cdn.com/v4/letter/a/df788c/32.png) [@alirat528](https://forum.livingwitheagle.org/u/alirat528)\ **Post date:** [November 17, 2024, 3:38am UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/10 "2024-11-17T03:38:17Z")
Yes I’m thinking that maybe Botox might help. I agree Isaiah… it is a thin muscle so I’m confused about why there is a bulge. I did have right sided asymmetry of my mouth after the right surgery but it has resolved. There is no pain or tension in the neck. I’m more concerned about having an aortic aneurysm and mild calcifications in the carotid artery. That might not be related which would be great but my left styloid is causing pain and it was not shaved off enough… they said they couldn’t go any further because they would risk nerve damage. I’m also wondering does Dr Costantino in NY deal with the vascular side because his website doesn’t mention that. Thank you all so much for taking the time to support me with this! Alicia ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [November 17, 2024, 3:46am UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/11 "2024-11-17T03:46:16Z")
Dr. Costantino’s forté is IJV decompression surgery especially where ES is involved. He works together w/ Dr. Tobias who shaves C1 to help prevent a recurrence of the compression & he removes the styloid as close to skull base as possible. Some of the doctors on our Doctors List are a bit more cautious about getting too close to the skull base so they don’t cut the styloids short enough which in some cases doesn’t matter but in others like yours & mine it does. We have a number of members who have seen Dr. Costantino for styloidectomies with IJV decompression. If you call his office to ask about it, I’m sure they’ll confirm he does. Here’s a post that will be helpful: > [@Surgery with Dr. Costantino and Dr. Tobias on July 24—not quite Eagle's](https://forum.livingwitheagle.org/t/surgery-with-dr-costantino-and-dr-tobias-on-july-24-not-quite-eagles/13854): > > Hi! Starting a new thread so I don’t keep clogging up “NYC surgeons.” I had my surgery Monday with Dr. Costantino and Dr. Tobias (neurosurgeon) at Stamford Hospital. I’ll paste below what Dr. Costantino wrote to my physiatrist, who originally diagnosed me. “We expanded the jugular vein substantially even with left lateral head rotation as a result of the removal of the C1 transverse process, styloidectomy, translocation of the spinal accessory nerve, jugular vein fasciotomy, and lysis to the po… Re: your platysma muscle, I actually have had trouble w/ mine on the left side since my left ES surgery. It gets Charlie horses, as odd as that sounds, and my skin actually crinkles up when the muscle contracts. It’s not horribly painful but feels & looks weird. Your situation looks to be a deeper muscle that may have had nerve damage & is in a state of constant contraction from that. Here’s an image of the muscles at the front of the neck so you can see which ones you think might be causing the bulge: [![](https://s3-us-west-2.amazonaws.com/courses-images/wp-content/uploads/sites/1512/2014/10/28202035/1110_Muscle_of_the_Anterior_Neck2.jpg) ](https://s3-us-west-2.amazonaws.com/courses-images/wp-content/uploads/sites/1512/2014/10/28202035/1110_Muscle_of_the_Anterior_Neck2.jpg) ---
**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\ **Post date:** [November 17, 2024, 7:39pm UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/12 "2024-11-17T19:39:45Z")
The aorta is in the abdomen up to the heart, so shouldn’t be affected by ES… ---
**Author:** ![Pam9](https://avatars.discourse-cdn.com/v4/letter/p/f9ae1b/32.png) [@Pam9](https://forum.livingwitheagle.org/u/Pam9)\ **Post date:** [December 2, 2024, 11:04pm UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/13 "2024-12-02T23:04:43Z")
Hi. I’m In Boston. Feel free to reach out to me. I have been working with a couple different people. I am waiting to see Dr Constantino again as well. ---
**Author:** ![Pam9](https://avatars.discourse-cdn.com/v4/letter/p/f9ae1b/32.png) [@Pam9](https://forum.livingwitheagle.org/u/Pam9)\ **Post date:** [December 2, 2024, 11:05pm UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/14 "2024-12-02T23:05:16Z")
How are you feeling now? I am waiting to see Dr Constantino again soon. ---
**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\ **Post date:** [December 3, 2024, 4:34am UTC](https://forum.livingwitheagle.org/t/rhode-island-w-eagle-syndrome-in-need-of-recommendations/17484/15 "2024-12-03T04:34:56Z")
Hi @Pam9 - Welcome to our forum! I’m feeling really good after my recent IJV decompression surgery. Dr. Hepworth was my surgeon. I didn’t have typical IJV compression symptoms. Mine are hearing loss & constant loud tinnitus which haven’t resolved as I’d hoped after the surgery. I’m giving my brain & inner ear 6 months to enjoy the new level of blood flow they now have before judging whether or not surgery helped. I saw a different surgeon 10 years ago who did my initial styloidectomies. Those helped relieve my nerve symptoms to a very great degree. What symptoms do you have?