Do you still feel less shoulder neck pain? All the anesthesia is gone now so it is your result? Are you able to flex your head a bit better? I think at two weeks out you might see changes. I will do my surgery, if I do, in end of July so I would like to follow your course. Did you have any cracking in the upper head neck area. Some say that goes away too!
Thanks again Jen.
My husband received a diagnosis of Eagles Syndrome this past week. We are feeling so much relief and excitement at having a diagnosis, but there is also a lot of anxiety over what is coming next. He has seen so many specialists they have become very unhelpful and even angry because he has never given up and keeps scheduling appointments for the same symptoms. An ENT finally gave him a diagnosis–the doctor was very hurtful at his appointment and told my husband he would be better giving up instead of pursuing surgery. We are absolutely going to pursue surgery. He struggles making it through each day with the head pressure, popping in his ears, pain radiating from his jaw to his chest. Chronic head aches that have only ever eased up with ibuprofen. Our next step is figuring out which specialist. His ENT said he is referring him to a specialist in Illinois where we live but i trust that physician as far as I can throw him and we are thinking about heading out to California. From reading this website it sounds like Dr. Samji is the guy to go to. But we are in Illinois. If anyone can recommend someone closer that is spectacular we will certainly consider it. I know there is a list on this website, but we don’t just want someone who has done it before. We want the best because I think this surgery is going to be the beginning of a new chapter in our lives. Any advice is appreciated.
Hi Luci, & welcome to the site!
Sorry I must’ve missed you joining the site- we’d normally send you a message with info about finding you’re way round the site. There’s lots of info all about ES in the Newbies Guide Section, like common symptoms & what might cause them, treatment etc. The past discussions are searchable & are really useful too. And you can start a new one to ask anything if you want.
In the Doctors Info Section there’s a list of doctors familar with ES (the 2019 one is regularly updated so is current) There’s 4 on the list in Illinois, who have all done successful surgeries on members. But Dr Samji in CA & Dr Cognetti in PA are the most experienced surgeons in the US.
So sorry to read that your husband has had to fight for so long to get a diagnosis, unfortunately that’s quite common. But surgery is possible & many members have had great results- doctors who dismiss surgery are usually inexperienced & not able to do it themselves!
Hope this helps & your husband can get some treatment soon. Best wishes!
Hi Luci!
I’m sending you a second welcome. So glad you found us! Jules gave you good info about the site & I’m going to add a little info about Eagle Syndrome & why we get the symptoms we do from it:
The symptoms of ES come from irritation of up to six of our cranial nerves which “live” in the neck near the styloid processes. Elongated styloids &/or calcified stylohyoid ligaments can also cause compression of the internal carotid artery or jugular vein when the head is in certain positions (this varies w/ each person). As you can see, it’s removal of the styloid process(es) &/or calcified stylohyoid ligaments that will allow the nerves & vascular tissues to recover thus surgery is the only real cure. There is a series of short videos on YouTube called “Two Minute Neuroscience”. If you tack the name of a specific cranial nerve onto the search, you will get a two minute video specific to that nerve which highlights location, function & dysfunction of the nerve. The CNs generally affected by ES are the facial, trigeminal, glossopharyngeal, hypoglossal, accessory & a biggy - the vagus nerve. Most doctors don’t recognize or don’t know the symptoms of irritation of the various cranial nerves which is why ES is hard to diagnose.
Dr. Samji did my ES surgeries in 2014 & 2015. Surgery gave me my life back. I’m 63 & did a trail ultramarathon (55k) in March just prior to the shelter in place. I could never have conceived of doing something like that when I had ES.
We are here to support you & your husband in whatever ways we can. Sharing his ES journey in a post (click on the “New Topic” tab on the rt side of the home page for General Discussions to get started) is a good way to get feedback from other forum members. You will likely get some responses here, too.
There is a neurosurgeon at Northshore who has done about 15 Eagle’s cases. He is Dr. Chowdry and is a vascular neurosurgeon. He takes the styloid back to about 1 cm because he does not want to endanger the facial nerve. He says it is a simple operation. However, he does not remove the ligaments. I have interviewed both Samjii and Cognetti and I am trying to decide between them. It sounds if both remove ligaments. Chowdry does the surgery in 15 minutes and from what I’ve heard, it is the most straightforward of neurosurgical surgeries.
Hi Jenniferobel,
I would question a doctor who says a styloidectomy only takes 15 min. Even the most skilled ES surgeons require an hour for a “textbook” case. Drs. Cognetti, Samji & Milligan (in AZ), are potentially the 3 most experienced ES surgeons on our list. They all do external ES surgery. Part of the time invested is in moving muscles, vascular tissues & nerves carefully out of harm’s way. The procedure is a bit painstaking even for the very experienced. If the neurosurgeon does intraoral surgery, perhaps that takes less time because a laser or heat tool is used to slice into the tissue in the throat down to the level of the styloid. The nerves, muscles & vascular tissues are a bit more vulnerable in this approach because they can’t be visualized during the cutting as they can be during the external surgery. That said, we do have forum members who’ve had very successful intraoral surgeries like adriene61. It boils down to the skill & experience of the surgeon.
I really appreciate the information and the support. We have not had anyone understand what he has been feeling for years. Right now we are waiting to hear back from another specialist for a second opinion and to decide our next move. I am interested in reading more about the surgeon from Arizona as well. I will post an update about his progress when we make concrete steps towards surgery.
Luci,
You can search what other forum members have said about Dr. Milligan using the gray magnifying glass icon above. Just type Dr. Milligan into the search box & posts where he is mentioned will come up. You can also privately ask questions of the people who posted about Dr. Milligan by clicking on the screen name of the person who made the post. That will take you to a page where you can start a private email conversation.
15 minutes is just plain scary! mine was 90 minutes +. IT depends on what the surgeon comes upon once he makes his incision. Dr. Samji says he doesnt know until he opens you up and depends on location of nerves and other veins/blood vessels as no one patient is the same. In my case he found my styloid ligament longer and deeper that he thought via CT scan. He had to resect a large cluster of lymph nodes to get deep into the area to remove which took extra time and a larger incision. He takes it off right at the cranium. Anyone who tells you they know what they will find for sure or that all your symptoms will go away, would be questionable in my opinion. I suggest asking how many of the procedures the doc has done. Dr. Samji has done 450+.
Luci,
I live in Seattle and flew to San Jose to have a consult w Dr. Samji on Feb 4 so it was easy on west coast. You can send a CD of CT (he prefer no contrast) and they will email forms to fill out and insurance info. The cost is $350 without insurance. I sent mine and it was reviewed within 10 days. I could have gotten a phone consult within another 7-10 days. Although my surgery was delayed cuz of COVID, I just flew down and stayed for 8 days and had surgery on April 27th. Im 2 1/2 weeks out and I feel pretty dang good considering my neck was cut open. I stayed in a quaint hotel in town in Los Gatos about 2-3 miles away from surgery center. You fly in on a Friday, have pre-op, surgery on Monday. Post op on Friday and then you can leave. I was desperate to get out of pain (in and out since 2015 and many docs) and I am very happy with my choice. Had an excellent experience with Dr. Samji and the surgery center. Im going back for the other side in august or Sept. You can still get consult with Dr. Samji so when you see others back there, you can compare opinions.
See Snapple2020’s response above.
He is seeing his dentist that has been trying to help him for a CT Scan as soon as he is available. He has an appointment scheduled to meet with an ENT at Washington University in St. Louis-that is who the MD that diagnosed him referred him to- but I cannot find anything about Eagle’s on their website or related to the ENT specialist in any way online. I am still leaning towards California as soon as we get a CT Scan without contrast together. He definitly wants to do external surgery from what we have read. We are a little concerned about flying after the surgery- did you have any issues with altitude after your surgery? We have also both been working full time-I am working from home due to Covid-19 while watching our baby so I do not have time to research as much as I would like to. Is this a procedure that will keep him out of work for a while?
Luci- others can tell you more about the flying…I’d suggest if you are considering seeing the ENT at Washington Uni it would be best to ring ahead as you might find out whether they’re ES believers or not & save a wasted trip!
As for work after surgery, it does vary a lot. some members have gone back to desk jobs after a week, but that is pretty unusual, 2 weeks is quite common. If a job involves any lifting it would be a lot longer. After my first surgery I couldn’t drive for 3 weeks as it was uncomfortable to turn my neck much, although others haven’t found that.
Good luck working from home with a little one!
Hi Luci,
A number of people have flown from various points in the US to have their surgeries done by Dr. Samji, & as far as I know, the trip to CA before surgery was much more difficult than the trip home. The trick for the trip home is to bring something with you that you can put ice in once through security (i.e. zip lock bags) so you have ice to ice the neck incision during the trip home. Airports are very accommodating & will provide wheel chair assistance or a shuttle ride to the departing terminal for the trip home if necessary.
I suggest asking (calling) them how many eagles procedures they have done and whether they do external or internal. I was able to get my PCP to order the CT scan on a Saturday and had it on Monday but that was before COVID hit and was large medical group and hospital. Usually these docs work in groups at university settings. Make sure you are consulting with the most experienced…often can take months to get appts in university settings for the best in group. I got 2nd opinion at University of Wa in Seattle and saw someone less experienced after being able to quickly meet with Dr. Samji. I was not impressed and based on past experience at UW made decision to stay away from teaching hospital.
My doc said 2 weeks before going to work but that was for a part-time desk job - external surgery. I’m 3 weeks out tomorrow and could probably handle going to work but I set up in advance to take leave until June 1. A more physical job with heavy lifting would require modifications.
Although I had a ice pack and got ice at airport, I did not need it. I had about 6 hours from drive to and from airport including flight and wait time. I set up wheelchair in advance and did not need that either and flew alone. I had a rental car and drove myself to the airport. After day 3 from surgery, I really didnt need any pain meds at all although everyone is different. I think the steroids help keep swelling down and the pain.
For Dr. Samji you have to wait 5 days before flying out. I only had a 2 hour flight. I think the concern about flying after surgery is DVT (Deep Vein Thrombosis) and lack of circulation in legs. I thought I read concerns come if your flight is 4-5 hours or more. Something to research more. I was out walking the day after surgery and did daily up until I flew out and I think helps for circulation.
Hi @Luci,
Sorry to hear about the experience your husband has with being diagnosed with ES. Since the symptoms can be changing before they can become constant enough to be able to verbalize them, the Drs easily lose patience. The statistics based on some researchers indicate that there are not enough specialists in the ENT world that can understand a patient or diagnose them properly.
I had my surgery done on April 20 by Dr Samji and I am recovering really well. He ended up being in my county so I was able to get diagnosed in 4 months. However I went through hell before I was referred to an ENT office, so I can relate. You can look at my journey here.
ES Journey
Each one of us has started our Journey by deciding on an experienced Dr, who can provide the right guidance. Use this reference of Drs by State that have demonstrated knowledge or experience in working with ES patients: US Doctors - ES experience.
It is also very important where this Dr performs their surgeries. In the era of COVID - 19, hospitals are hot zones for infections. Surgical centers are less likely to have high infection rate, because checks are made for everyone that enter the facility. I mean everyone on staff including patients.
My surgical experience is also detailed i this post.
ES Surgery
I first tried the non surgical option which was recommended by Dr Samji. This method entailed taking Gabapentin. I wrote about my experience in this post, which I hope it can help you in the process of talking to a local ENT to start the process prior to scheduling your husband’s surgery.
Gabapentin effects and side effects
If you need any assistance locally in California, I am available to help. Just let me know in a private message and I’l share my contact information with you.
Cheers,
Riki
Thank you everyone for the information. He has an appointment on Wednesday with his dentist to get more detailed x-rays. I think his dentist is excited to learn more about it himself because he has never come across it before. I plan on reviewing the posts on here with Samji to see what he will require for a consultation to get prepared this week. I have trouble getting on here very often or reading as much as I would like. His symptoms have been pretty awful this week leaving him in bed early in the evenings while I take care of everything at home. Not a lot of time to get everything set up. I have a couple additional questions. He has always insisted that antibiotics have helped relieve his pain. I scared him into not taking them anymore because i know it is not good to take antibiotics for an extended period of time. He believes he has an infection in his neck. I was wondering if anyone has any experience with a symptom like that or if they have heard of someone taking antibiotics for it in the past? He will occasionally feel like his chest is very tight and the antibiotics provide some relief. He has been to the ER for it before but of course they never found anything wrong. Also, for the individuals that have had successful surgeries- Have you fully recovered from Eagle’s symptoms? Years later do you have any reoccurring symptoms? I am worried he is losing hope a little bit. He is ready to take the steps to fix it, but he is not very optimistic about feeling better.
Hi Luci,
Dr. Samji will require you to send a CT scan w/o contrast & the radiologist’s written report for him to review before he’ll concede to a phone consult. I would skip the dental x-rays & get the CT scan done if your husband hasn’t had one already. Why subject him to more radiation than needed.
As far as your antibiotics question goes, I have a niggling at the back of my brain that says I’ve read about someone feeling better from ES symptoms w/ antibiotic treatments, but I can’t remember who or what the symptoms were. A number of members have needed antibiotics for post op infx that have come up but that is something surgeons truly try to prevent. Hopefully someone w/ a better memory than I or who has experience on the antibiotic symptoms treatment will speak up.
Jules & I are two of the “older” members on the forum at this point. We both still have low grade symptoms from ES. I’ll let her speak to hers. As far as mine go, I wasn’t far from your husband’s condition. I had a multitude of symptoms including some very alarming ones which all subsided after surgery. It took almost a year for my nerves to fully recover after each surgery, & some didn’t completely. I ended up w/ First Bite Syndrome at the end of my first week after my first surgery. Most people who get this recover completely w/in a few months. I did not. That said, the frequency & intensity are much diminished from its onset. Additionally, I have learned that if I keep myself very hydrated, I basically have no problem w/ FBS. Regarding the residual symptoms I have, they do not impact my life in any significant way. I count them as small reminders as to how far I’ve come since the days of ES. I had it bilaterally & had two surgeries 9 months apart. Surgery literally gave me my life back.
Here is a link to discussions that came up when I searched “antibiotics for ES symptoms”. There are a lot of discussions so you probably won’t have time to read through them all. I’m not sure if any of them contain the information you’re looking for but if you have time to read some, you may find helpful information.
https://forum.livingwitheagle.org/search?q=antibiotics%20for%20ES%20symptoms
I have done substantial research and interviewed five surgeons. It does not seem to be an extraordinary hard surgery to recover from. It takes away something that doesn’t belong. All the surgeons seem to say success rate is very high in well selected patients, ie those with symptoms consistent with eagle’s. I am putting off my surgery because of covid and my neck is weak. I’m doing “prehab”. I decided to go with Cognetti because I personally don’t want the styloid tAken to the base but prefer 1 cm left so not to risk the facial nerve. Samji goes to the base of the skull. That seems to be the big difference. All five surgeons said my rotation and flexion will improve.
I am planning likely August/September.
Good luck.
I was starting to feel pretty ill before surgery, (5 years ago) I had vascular ES & had some pretty scary symptoms. I had nerve pain too, which was worsening, with tingling & numbness on my face too. A few years on the vascular symptoms have gone (I noticed them a bit after flying, or under alot of stress, but very mild) I have a little nerve pain left, but not like before. I think scar tissue causes a little niggle, but my quality of life now is so far above what it was before, the surgery has improved my life so much! So I hope you can pass this on to your husband to give him hope! Best wishes 