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Eagle Syndrome - Online Support Group

Specialists in Iowa?


#1

I am in Des Moines, IA. I have an appointment with University of Iowa ENT that an ENT in Des Moines referred me to. I am not even sure if he specializes or knows about Eagles but they were sure no one in Des Moines could help me. I can’t get in until end of February and CT scan last week showed calcified ligaments. I am uncomfortable with dysphasia and neck pain that has been getting progressively worse since September. I don’t see Iowa on the list. Anyone know of any doctors in Iowa or recommend any that are in surrounding states?


#2

Alot of members do end up travelling, because it’s worth it to see a doctor who’s treated ES before, so you might have to consider going to Chicago or Kansas city if you can. I’m UK, so unfortunately can’t help you, but best wishes!


#3

As far as I know, the 2 most experienced doctors are in San Jose, CA (Dr. Samji) & Philadelphia, PA (Dr. Cognetti). Both have had patients that traveled long distances to have them do their ES surgeries. I know Dr. Samji does phone consults. Don’t know about Dr. Cognetti.


#4

Thank you! I have been referred to the University of Iowa Hospitals and Clinics to an ENT who has experience with Eagles. I can’t get in until February but will start with the 2 hour drive before I travel across the country. From what I read his can be a long journey.


#5

The longest part of the ES journey is finding a doctor who properly diagnoses ES & knows how to surgically take care of it. Once you have a diagnosis & a practiced surgeon lined up, the rest is a bit easier. Surgical recovery takes a couple of months but usually one can begin gradually returning to normal activities a week or two after surgery.

Glad you’ve found someone closer to you who has experience. Please keep us posted as to how your appointment goes.


#6

@Hawk87, I’m in Central Iowa too. Did IC end up doing surgery or did they refer you somewhere else. I was just diagnosed today after SO MANY tests and my doctor has no idea where to send me. He said he’s reaching out to ENT docs here on what to do with me. I’m so scared based on what I’ve read. But, I survived cancer 2 years ago so this should be nothing?


#7

I did go to Dr. Van Daele in Iowa City and he has done surgeries for Eagles Syndrome. I brought the copy of my CT scan and he looked at it on the screen with me. I had done a lot of research on eagles and generally knew what it would look like. Mine looked nothing like those pictures, the calcification was very very small. The Dr explained that mine was not very severe and walked through who would benefit most from surgery. He didn’t think surgery would help my neck weakness, trouble swallowing and labored breathing based on his experience and the CT scan images. He did however suggest that it might be something with my vocal cords and they did a breathing test in IC (no one in Des Moines thought of that). Based on my breathing test he suggested I have a bronchoscopy to see if I had structural damage. I did the bronchoscopy in Des Moines and I had no structural issues. I had also been going to a functional therapist who was convinced my diaphragm was not working properly and that was causing the issues. The pulmonologist in Des Moines decided to try me on an inhaler and within 4 months I was 99% back to normal and it turns out I have adult onset asthma.

I would say it was definitely worth the trip to Iowa City because no one in Des Moines even suggested looking at my breathing and no one had a clue as what to do with Eagles showing up on my CT Scan. I think it took a month or so for me to get in but make sure you are on the cancellation wait list becaus I ended up getting in several weeks earlier . My Dr did send a referral to get the appointment. Good luck! I wish you all the best!!!


#8

MomOf2 & Hawk87 -

I have to disagree w/ what Dr. Van Daele said about there needing to be a specific pain spot for your symptoms to be coming from ES. That is not true! ES usually causes pain in several areas not just one “spot”. It can cause other disabling symptoms like tinnitus, vertigo, nausea, heart palpitations, shoulder pain, blood pressure issues, vocal loss, eye pain, ear pain, throat pain…among other things. It all depends on which cranial nerves & vascular tissues the styloids &/or calcified ligaments are irritating.

MomOf2 - I recommend if you go to see this doctor, you thoroughly inform yourself as to the common & possible symptoms of ES as many doctors who are casually familiar w/ this syndrome will be dismissive of even your worst symptoms because they truly don’t understand how complex it is. If you are informed & stand your ground, you will be more successful in finding the right surgeon & less likely to let an uniformed doctor “push you around” & make you feel like you don’t know what you’re talking about. There are links to many research papers in the Newbies Guide. Click on that link (which you will find under the General Discussions link at the top of this page) & start reading! Take a copy of any articles relevant to your situation with you when you do go to the doctor.

Hoping for the best for you.


#9

To be fair once I saw mine on the screen I had to agree my calcification was very very small and only on one side. I may not be remembering correctly what he said, it was a long time ago. If you don’t trust him get a second opinion but with not a lot of options to start with it’s worth seeing someone close first. If yours is bad I am sure he won’t dismiss it.

I also want to clarify he didn’t dismiss the fact that’s I had Eagle’s he just explained those who had the most success with surgery and that mine was so small he didn’t think surgery would help. I came in fully informed and asked a lot of questions and didn’t get the impression he was pushing me around. The ENTs in Des Moines really don’t know anything about it which is pretty scary. Dr. Van Daele is at the University Hospials and Clinics which is a very highly acclaimed hospital, it’s the best you can ask for in Iowa.

My problems were all solved with inhalers and the asthma diagnosis makes sense with all of my symptoms. I am very very happy I went since I was getting no where with doctors in Des Moines. I am very happy because I confidently believe surgery would not have helped. No need to have an uncessary surgery in my case. It’s not always the worst case scenario.


#10

Hawk87 -

Sorry! I didn’t mean to imply that Dr. Van Daele mis-directed you. Since MomOf2 is in a lot of pain & has multiple other ES symptoms, I wanted her to understand that she needs to be informed & stand her ground in case the doctor is at all dismissive of her symptoms or tries to make her believe ES doesn’t cause those sorts of symptoms because it ABSOLUTELY DOES!!

I’m glad he was able to see your symptoms for what they were, & I’m very thankful for you that you didn’t need to go through surgery to find recovery from what you were experiencing!


#11

That’s ok! No worries at all. I agree with all of your points about being prepared. I just know that it’s really scary to be in pain, have no answers, get a CT scan back that says eagles and have your dr. and the best ENTs in Des Moines have no clue what that means or even what to show you… or where to send you.

Dr. Van Daele is the only Dr. in Iowa (that I am aware of) with any experience to look at a CT scan and be able to tell her what’s going on. 100% worth the visit. I just didn’t want the dismissal of my experience to keep her from looking for a Dr more close by to get some answers as a starting point.


#12

Thank you for your reply & you’re right. It’s hard to know what info might be discouraging to one person & great info for another. I appreciate your follow-up to my initial comments.


#13

Hey there; sounds like you might have some more info than where you started.

I am working currently with Dr. Coughlin at Methodist Hospital in Omaha. He is a head and neck oncologist & his team is great. I will say it has been a process & he’s been thorough to do and try all he can before a procedure would take place, because he understands that though usually successful, it has risk to not resolve the issues & he has had some patients do fine with steroid injections & not pursue that route (not me! Highly considering surgery!). He is extremely knowledable and respectful, though & could be a good starting place if you are curious about moving forward / getting more info. He does external, skull base surgery & understands that removing the entirety of the bone to the skull is preferable, though he has done intraoral too. I am seeking out other surgeons in the Midwest & Samji & Congetti for estimates / putting out feelers, but he has done over, I think, seven (maybe to-ten) of these procedures. I may still end up pursuing surgery with him.


#14

This discussion is awesome. I believe the Dr in Iowa is worth seeing . Dr Van Deale. We need to find as many reputable surgeons as we can close to where we live. I hope he can help Momof2
Anytime you can have surgery and recover at home and not be too far from your home and family, it is good.
I am sure there are good surgeons who can help us. We do not always know where to look.
First, we have no idea what we have.

By the time we find this site, we are desperate a lot of times. 
 It is comforting to at least be able to try a doctor close to home. I believe every state has a skull base doctor who operates on cancer

patients and would know about Eagles. I hope we can dig deep and find them and get help.
Mkalicet
From my personal experience in Louisiana 2 weeks after skull base surgery, it sounds like Dr Coughlin may be an excellent option. He sounds like he may be a top doctor. He sounds like Dr. Nuss and Dr Cognetti.
Check out his training. It sometimes gives you a clue. Find out if he monitors the nerves during surgery. Remember, he will not and cannot predict outcomes. They are saints from heaven who care enough to try to give cancer patients hope and life. They are the real deal.
Dr Nuss. Baton Rouge, La did a fellowship for 2 years in PA. I think in Pittsburg, but he is well acquainted with Dr Cognetti.
The other clue that Dr Coughlin is a top doctor. He is the head of his department. I am noticing a trend for skull base doctors being department heads. BatonRouge, Louisiana, Kansas City,KS, Cleveland Clinic, FL, Omaha, Nebraska. I do not know about Dr. Cognetti,but he was the first surgeon ever recommended. My thyroid cancer surgeon trained at Thomas Jefferson Hospital where Cognetti practices. I suspect that Thomas Jefferson Hospital puts trains many excellent Head and Neck Surgeons.
Dr Samji was the second skull base surgeon recommended. He and his team are very kind and he is so accommodating at helping get a diagnosis. Several members espeslcially Isaiah 40:31 can give you information. They are easy to contact
We need to find those surgeons in every state and every country where we have members.
If you are in a lot of pain, try contacting more than one doctor at a time. If you need help getting a diagnosis, send your information with a letter to one.
This summer, I managed to have Dr Samji willing to schedule and operate on one side only. I sent my records to Dr Jason Newman in PA. He was willing to see me. But miraculously, I got referred to Dr Nuss, he is as good as any that we have listed. I have done the research and I could recuperate at home.
Dr Jason Newman did 4 surgeries on Earmom’s son. He was 11 or 12 when she found our site. Dr. Newman was on our list. He and U of Penn accepted their first pediatric Eagle’s patient. Dr Newmam removed both styloids, one at a time to the skull base. A year later they grew back, perhaps because he was still growing. Dr. Newman did not drop them or make excuses, he redid both surgeries again. I contacted Earmom recently,her son is doing well. U of pennsylvania has protocols in place for pediatric patients.
These are all excellent doctors. Check the list, some of the old ones may need to be removed. They may have worked for one patient. If they do not accept eagles, then they decided against the risk.
As far the rest of us, we can find doctors.
We know Cognetti and Samji because they were first,but we need to pay attention to all the others as well.
Momof2, mkalicet keep us posted.
Dr Nuss told me to check out Jackson, Mississippi and Birmingham, Al.
If I can lay low in bed away from family a little longer, I plan on doing that.


#15

Thanks for a great discussion all. To say I am frustrated is an understatement. I saw the ENT in West Des Moines Iowa and he showed me my scans. the right side is extreme and terrifying to look at. The left side is a quite large spot but not as bad as the right. He said you don’t have Eagle’s syndrome because you don’t have as much trouble swallowing. He also had the nerve to say everyone has calcified ligaments in their neck. I was in his office with him for literally Less Than 3 minutes and he got me out the door. I have been hesitant to come back to the site because I feel like no one wants to help me and I’m so frustrated. I have so many other health issues on top of this. I have fibro, ra, eilers danlos syndrome, all of the lymph nodes around my collarbone and the ones directly under my ears are swollen, my blood work is bad, and everyone just says they have no idea why everything is bad. They are watching lumps in my lungs and one on my liver. They don’t understand being in pain 24/7 Can literally be a life or death sentence mentally. There are no pain meds being distributed as I am supposed to take Ibuprofen. So I’m supposed to take 40 ibuprofen a day? I seriously don’t know what to do and I’m tired of feeling sorry for myself.


#16

MomOf2,

WOW! I’m so sorry! Some of the symptoms of other things w/ which you’ve been diagnosed could be related to ES - for example - your swollen lymph nodes could be a symptom of ES. It’s truly amazing what pains & other problems disappear after ES surgery if you’re taken care of properly during surgery.

Are you able to travel out of state for surgery? Depending on what’s bad in your blood work, you might have to see some improvement there before a surgeon would be willing to operate on you. I’m telling you this not to create more disappointment but so you don’t jump into a promising surgical situation only to be turned down because of bad blood work. See what you can do to improve your numbers there if possible. Sometimes stress alone can make a mess of our bodies & that reflects in what our blood shows.

I’ll keep praying for you to find the right doctor(s) & medical solutions so you can live your life in a healthy body.
:sunflower:


#17

I can understand how frustrated you must be, doctors can be so ignorant. I never had pain swallowing, but definitely had ES! & I don’t have calcified ligaments! The first doctor I saw said that ES couldn’t cause any vascular compression- & I had bilateral compression of the jugular veins.
As Isaiah says, the stress can obviously affect your blood results & RA too; so if you can try not to worry it’ll help, but easier said than done I know. I’m convinced that the irritation caused by that stupid bone can cause inflammation & affect the immune system, but that’s just my layman’s opinion! So there’s not much you can do about that effect…
There are some pain relief options other than ibuprofen- anti-depressants and anti-convulsants are good for nerve pain in low doses (lots of info in the Newbies Guide section), so that might be worth trying. Also some members have had pain relief with lidocaine/ lignocaine patches so maybe that might be a possibility for you?
Not sure who you saw, & we have to be careful not to post negative comments about named doctors for legal reasons, but Hawk87 had surgery with a Dr Douglas Van Daele at the Uni of Iowa Hospitals Clinics, he’s not on the list yet.


#18

I will try to get in with him. Unfortunately I am not able to travel out of state. As a single mom, and working basically part time at my full time job - sometimes I barely have money for food. My medical Bill’s are killing me. And I don’t qualify for any assistance. Its a no win situation so that’s why I just want to give up.


#19

You can’t give up yet MomOf2…you’re just getting a good start at it. If you could get your doctor to prescribe some Tramadol, it may be helpful for that chronic pain. It’s a bit stronger than the ibuprofen but not so strong it knocks you on your butt. It’s kind of a nice functioning pain medication. I have also started to supplement with CBD oil. I have finally been able to get some restful sleep and it also helps with inflammation. I am still trying to decide how best to resolve my issue and I do want to have the surgery. But I am also going to be very selective about who I choose to do it. I’ve had enough surgeries in my life to know how important it is to have the right surgeon. My intention is to only do this once. So, try to find ways to calm yourself and those babies in efforts to lower the stress, thus the increased pain. Ask your doctor what he/she suggests for assistance with your medical/financial issues. They will surely have some suggestions. I know it’s rough but it will get better, you just have to believe it! :butterfly:


#20

Good news to report. I got a 2nd opinion in Iowa City. Surgery is scheduled for Nov 19th, right side only at this time which is good because all my major symptoms are in the right side with the exception of major ear issues on the left. Fingers crossed it works! He’s removing the entire styloid. Not sure what to expect from recovery since I have horrible fibro problems and I have Eihlers Danlos Syndrome. Thanks everyone for listening the short time I’ve been a part of this group.