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Eagle Syndrome - Online Support Group

Whole family needs help


#1

I am a 43 yr old mother who has suffered from migraines, fast heart rate, ear ringing and pain, dizziness, facial pain, vision disturbances, occasional facial paralysis, neck pain, shoulder pain, and sometimes temp/gut/emotional issues. I have been run through the ringer with doctors, test and specialist that have no explanation.
Last april i went to a dental school and inadvertently through panoramic x ray found elongated temporal styloids. I started to research and found this site. I was amazed at how much this fit but have no desire for surgery unless it is life threatening(ie… my heart). So I made an apt with dr Dziguelewski at usf in gainesville off the list here. In the meantime my children also suffer with much of the same symptoms so I had them get the panoramic x rays also ( done at different places). My eldest daughter 24 has them(segmented), my son 23 has them(thick ones), my daughter 14 has them(thin like mine) and based off the symptoms of my two grandchildren (i raise) i’d put money on them having them also, however they were two little for the panoramic x ray.
I took all our x rays to this dr and he told me i didn’t have eagles and none of my symptoms would be caused from it anyways. (not what i read here and online) I dont have it in me to argue anymore with physicians and after a painful examination I left in tears, convinced i,d never return. Then my 14 yr old girl passed out hit the tile floor with her face hard, I’ve come close all my life(everything goes black) but never went down. My son has though several times. After the er and her doctor had no explanation, I took her ct which stated “at least calcification of styloids” and went back to dr Dziguelewski at usf, i tried to explain i believed this and our heart issues which are the most concerning to me could be caused by these bones. This dr again states no the symptoms are not from the bones or ligaments ( it was as though he didn’t want to deal with it at all), then he for the second time felt the bones through my mouth, at the back of my throat…I know he felt them, I felt them! It sent me into immediate severe pain, especial on my left side that radiated into my ear, my jaw and up into my eye and temple which lasted for the rest of the day… i again left in tears.
I have been through so much with doctors that i have very little faith in them at all, I have tried so many different kinds of medicine that i’ve given up and try to do things naturally. However its not just me, two of my children have unexplained heart rate and B/P issues like me, all of them including my grandchildren get sever migraine headaches, ringing in our ears, neck pain, visual disturbances worse in my son and youngest daughter who actually pass out. I have taken them to all the right drs and noone has any answers, the test are all negative, except for these bones, you can see them clearly on all our xrays and now I can’t find a dr who knows anything? I live in florida We have medicaid, unless its life threatening i don’t want cut on, but i need someone that can help us, who is knowledgeable and can help us navigate what is caused from this and whats not. My plan is to see an e.n.t. and ask them to please research this for me but my hopes are not high that they will. my primary dr is great and even he hasn’t taken the time, the kids pediatrician (who i wouldn’t trade for the world) also is content without knowing…I just don’t know what to do?? Tell my kids ''sorry but you’ll just have to live with pain, heart and other issues without help, understanding, or even acknowledgement…" that’s heartbreaking!!! Does anyone know of a dr in fl that actually acknowledges this? Can help us live with it or decide realistically what can be done? even if its an alternative practice?


#2

I’m so sorry that you & your family are going through this, & have been sent away by a doctor- the original list was compiled some time ag, I’m not sure which member saw him, but he would’ve done a successful surgery at some time. Unfortunately many doctors are unaware of a lot of the symptoms, especially the more unusual ones. A lot of members travel a long way for treatment, which would obviously be difficult for you. I don’t know much about the other Florida doctors on the list, but maybe you could message emma, she did the original list & lives in Florida, so knows the doctors there better than me. She has just had a revision surgery in Louisiana, so may take a while to get back to you; here’s a link to the discussion she posted, if you click on her icon the option to message comes up: Dr. Daniel Nuss , Baton Rouge La, Skull Base
The only other thing I can suggest is that you look through the info on the Newbies Guide section, & print off any research papers which help your case, like the symptoms you have, or angle of the styloids being important etc., & take them with you to your primary care doctor to show them that there are published research articles, doctors who do now about ES & believe it! There are articles about people who’ve had vascular ES & passed out & even had strokes- I don’t want to scare you, but maybe it might make your doctor take it more seriously. It sounds like you’ve had a lot of scans etc., but a CT with contrast would show any vascular compression caused by the styloids.
As for doctors, Skull Base/ otolaryngologist doctors are used to operating in the area of the styloid processes, so it might be worth trying to get a referral to someone in your area, rather than ENT if none of the other Florida docs look promising.
I can understand how tough it is to keep having to fight, but you sound really strong & your children need you healthy & to try to fight for them too. I really feel for you, & hope that you can get some help soon. God Bless… :hugs:


#3

Thank you :slight_smile:


#4

I am in early recovery and having some pain, so excuse my typos.
I think I remember a doctor in Lakeland. I have no info right now. I am sure being on medicaid limits your options, and you have to stay in state. The ENT’s you have seen are probably not specialists.
If Cleveland Clinic in Weston, Fl takes medicaid and you can get there. It is near Miami. I have seen Dr Alemar. He is a skull base physician, head of his department and very knowledgable. I saw him in 2013 to consult on my surgery that seemed to never get better. At the time, everything was done correctly, I just needed to wait longer for healing. He was on the list of doctors in 2014. Cannot guarantee that he is still there.
I believe University of Miami may have someone, but I did not know anything about him
You need to look for Head and neck surgeons who operate on cancers and specifically with a specialty of Skull Base tumors.
Moffitt cancer center has a head and neck department,but they only accept cancer patients. It is also hard to contact a special department. You might want to try just going there. The parking is on Magnolia dr. Gold parking area. It is valet parking, but I think, it is low fee or just tip based. I have to ask my husband. The Head and Neck Department is/was on the main floor that you enter.
You could ask if they have a skull base surgeon on staff and ask if there is anyone in the area who does the surgery on non cancer patients. When I feel better, I can try to locate someone… Also, try University of Florida in Gainesville ask for head and neck surgery department if they have one and ask the customer service person if they have any skull base surgeons.I have noticed that many of the department heads are skull base surgeons. NOT ALL HEAD AND NECK SURGEONS SPECIALIZE IN SKULL BASE.
Hope this helps.


#5

Thank you very much for taking the time to respond. I appreciate the help and will be praying for your speedy recovery.
Sincerely,

Keri


#6

Hi Keepingitreal,

WOW! You’re family is only the second one that I recall where ES has seemed to be a hereditary problem. There is another member on this forum who has a large family & she has ES & several of her children do too. So little is known about this syndrome & there is much speculation about whether it’s hereditary, as the result of injury, surgery, or some combination of hereditary predisposition & injury or surgery. No matter the case, the symptoms are terrible & can only truly be permanently dealt w/ via surgery. I’m glad Jules & Emma both gave you great information to help you proceed w/ your quest to deal w/ ES. There are many people on this forum who have struggled to find the right doctor. It’s truly heartbreaking to read what you’ve been through & without finding help.

I’ll be praying for you, too.


#7

Hi what are your heart symptoms? Any chest pains?


#8

Thank you. :blush:


#9

Both my eldest daughter n I have inappropriate sinus tachycardia 100-140 and our bp runs too low for beta blockers. Our symptoms do include dizziness, chest pain, tightness, shortness of breath, pounding and sometimes irregular heartbeat. On occasion our bp especially the diastolic will go up and our symptoms become significantly worse. My sons heart rate will drop way low into the 40 and 50’s and cause him symptoms ie irregular heartbeats dizziness ect. They have both been to the er for it with no explanation, as have I. However I have been to two heart Dr’s and run through the gammett only to be told they don’t know why. My son when he was younger went to a heart Dr, they seen irregular heartbeats in a stress test and spent a year trying to figure it out to no avail, no football and a double heart Cath later they still had no answer. I didn’t know about this then, we have learned to live with the symptoms and just rest when we need to. My youngest daughter’s pediatrician wants to send her to a heart Dr since she passed out and I am fearful they’ll do the same stuff to her they did to my son only to find nothing. My struggle in speaking to these Drs since finding out about these bones is the time, the info I’ve printed about symptoms and possible causes is lengthy and the Drs just will not take the time in a visit to read it or their interests lies in just doing what they know to make sure they’re in the clear if something does go wrong, which I get but then they don’t want to listen after, they just say they don’t know. So why let my babies or myself continue to be run through the ringer (radiating and surgical procedures) just to clear the Dr when this is more likely the cause? I’m not one to take chances with my children’s health but I sure don’t have much left for the medical profession unless I’ve no other choice. I’d like to find an alternative/ natural way to deal with this because my first heart Dr said he gets 35 dollars for seeing me and the only reason he does is cause the only way they get thr Medicare contracts is to accept the Medicaid. I’m a number to them and they only care about not being sued as a Gi Dr that i went to for a 2nd opinion stated “go back to your Dr, he’s doing cat scans every six months on you’re liver hemangeomas cause your young and he don’t want to be sued if you do develop something. He’s not doing anything wrong, we all will do that to protect ourselves”…smh
I understand, I do. They are doing a job and they have to protect themselves but this is what I’m doing also, it’s my job to Care for and protect my body and my children’s to the best of my ability. If I can do it naturally then that’s going to be the best option, if I can’t then God help me, and I believe he will if I care for his body to the best of my ability first… this is his body, he’s in me​:revolving_hearts::revolving_hearts::revolving_hearts:

So any advice on naturally dealing with this or recommendations for Drs that have proven interests in this, or even short to the point articles that I could take to the Drs I’m dealing with here, would be of great help.

Thank you in advance,

Keri


#10

I don’t mean to say the medical profession is all bad, please don’t think that. My mother was a nurse and the medical profession saves lives everyday and is doing wonderful things. I just mean to say I’m equally responsible for protecting myself and will weigh very carefully the value of my decisions when it comes to my body and my childrens.
I did not continue to get cat scans every six months for a perfectly natural condition, I also went to a different heart Dr., I have found a freedom of fear and a strength in the choice to love my body and protect it myself first. I would like very much to continue in this direction and it would be very fearful for me to have to have surgery for this. I in no way wanted to instill fear in anyone else, it’s a horrible feeling. I believe we are all on the best possible roads for ourselves for reasons unique to us and the best will work out for each of us. Listen to yourselves, your spirit guides you also. Blessings


#11

Dr. DZ removed my styloids - both sides at the same time intraorally - and he did a great job. But, he would not agree before the surgery that the surgery would help my symptoms. He said Eagle’s is controversial and there was not a consensus in the medical profession that surgery helped. Even the radiologist’s report included language that did not commit to an Eagle’s diagnosis - it said something like, “if the patient has Eagle’s symptoms, the elongated styloids could be the cause.” I think there are so many nerves and blood vessels involved that doctors cannot guarantee an outcome and the surgery is risky for the same reason. So, they are hesitant to do surgery. My surgery relieved the worst of my symptoms but did not fix all of them, and I have some issues that occurred as a result of the surgery that are irritating. But, Dr. DZ is a great surgeon and I trust his surgical skills completely.


#12

Send me a private message. Where do you live.


#13

Get ahold of Dr. Samji in San Jose and speak to Kimberly about this it’s his head nurse she might be able to shed some light on you current situation 408 227 6300 or ■■■■ she might be able to shed some light on you situation and give you guidance or miss Wendy in San Jose might be able to help you my name is Lance Rittenhouse and just had two styloids over 4.5 CTm removed in the last three months so I’m able and willing to help you and your family out numbers are 808 938 0340 if I can be of service let me know I’ll get Wendy on this ASAP and get back to you don’t give up the fight took five years to get my diagnosed and removed just got to find the right drs and staff to facilitate your needs I’m praying for you and will call Wendy now and get in the path to help you and your ohana or family I’m from Hawaii and we call family ohana so blessings to you and your ohana Lance buzzzzzzy Rittenhouse Aloha be well don’t give up your fight head up plow through this like it’s nothing it to will pass Aloha buzzesgles


#14

Isaiah_30_40 she’s very knowledgeable and has the insight to help with this must keep your faith and plow through this you’ll find help and strength through the lord and this forum good luck and god bless you and your ohana it will pass don’t give up hope amen buzzeagles aloha


#15

Thank you very much for your advice and referral. The kind words help heal the soul also. :innocent: I will be in touch, it’s a slow one foot in front of the other here but I won’t stop stepping :slight_smile:
Blessings to you and yours


#16

I messaged you my story and ENt and other info.
Buzzeagle63, happy you are willing to help her get answers, I will work on trying to locate the Florida doctors. God be with us.


#17

Sadly, the only “natural” way to deal w/ Eagle Sydrome is to receive cortisone shots or lidocaine shots in your neck periodically. These help some people from a few days to a few months & others not at all. Surgery is the only sure fire solution for relieving ES symptoms. As Catmd said, doctors will not guarantee that surgery will cure the symptoms but the testimonies of many, many people on this forum over the years it has existed demonstrate that surgery does make a huge difference in symptom reduction.
The vagus nerve is one of the nerves most often irritated by elongated styloids &/or calcified stylohyoid ligaments. The jugular vein & carotid arteries are also at risk for compression by the styloids/calcified s-h ligaments. Heart & vestibular problems are most often caused by irritation to the vagus nerve &/or compression of one or more of the vascular tissues mentioned above. The only way to stop the irritation or remove the compression is to take away the thing(s) that is/are causing the problems - in this case the styloids/s-h ligaments. Toward the end of his life, my dad had very strange heart problems that included the feeling he would pass out. He had many cardiology appts & wore a halter monitor for a month w/o receiving a diagnosis. This occurred during the period of time I’d been diagnosed w/ & had 2 surgeries for ES. He joked w/ me that he was sure glad he didn’t have Eagle Syndrome. It wasn’t until after he died (from a brain aneurism) that I got to thinking about his heart symptoms & am very suspicious that he might have had ES, & that’s what caused his weird heart troubles. Sadly it was too late to find out for sure.
I, too, am sorry to hear about the run around you’ve gotten from so many doctors & especially that you & your children are suffering so much. I know being on Medi-Cal doesn’t help your situation as it limits your doctor options.
Emma has offered you some fantastic leads. It would be great if you could pursue those. I know she’s at work trying to help you find a doctor or doctors closer to where you live who acknowledge ES & will work with you.
May God give you the wisdom you need & provide you with the absolute best doctor for you & your family to help free you from the health “prison” in which ES has placed you.


#18

I’ve found an article which looks into a sudden death- not to scare you, but in the discussion in the article they mention a couple of other cases, which detail symptoms like your family have- low blood pressure, fainting & cardiac arrhythmias: https://www.omicsonline.org/open-access/eagle-syndrome-and-sudden-and-unexpected-death-forensic-point-of-view-about-one-case-2■■■■.1000230.php?aid=26631
Hope this helps- there are others, if you have time to look mentioned in the Newbies Guide: ES Information: A Scary Subject
As for alternative treatments, as Isaiah has said the only real cure is surgery. Injections of steroids into the area can help with pain, & some members have been helped with chiropractors, but you would need to see someone very knowledgeable as they could do more harm than good- it’s not something personally that I would be willing to try.


#19

Thank you very much for your response. I am grateful. I actually did get a lidocaine shot about a year and a half ago for this spot in my back between my shoulder blade and spine that has been in constant pain since 2009, mri’s and drs dont know what it is from either but that dr put it into the side of my neck and the pain was gone within minutes, it didn’t last long but it did relieve the intense cramping that it was doing at the time. I am wondering with your suggestion if with some steroids it might last longer? I’ve always had posterior neck pain also (like i’m always tense), been on flexril for years because of it, of course theirs been no explanation as to why. I read one of Emma’s post yesterday that said something about the 11th cranial nerve being affected and possibly causing pain in the trapezius muscle. I google a pic of that muscle and sure enough It made sense, even the left shoulder pain i get is on the top towards the back. shoulder mri was neg too. I will print the article with a pic and see if my primary care dr will try the lidocaine and steroid shot. I feel very blessed here thank you again.


#20

Thank you so very much I am in awe at the support, guidence, and understanding I am receiving. Its hard for me to even comprehend that you so soon after surgery are going out of your way to help. It has been just me and my kids for over a decade now and I am not used to receiving help or even concern from others. I really don’t know what to say except to let you know that you ALL are making me feel very cared about. With tears streaming down my face right now I do not know how to thank you enough. :heavy_heart_exclamation::heavy_heart_exclamation::heavy_heart_exclamation: