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Eagle Syndrome - Online Support Group

Please someone help me


#1

Hi , First I had a ear ringing on my right ear and then a month later I had pain on my jaw and went to urgent care , the doctor said I had a TMJ issue and we went to dentist had a mouth guard as steroids for pain. it did not work for me after my steroids over.I got a pain on my teeth and took a scan of my teeth, dentist told me o had a hairline fracture and did a root canal , after that I had a pain on my chin to throat and felt stuck on my neck . My husband took me to ER. They did a CT and found I have a ossified styloid process and we got an appoinment with ENT. She told me it is not because of ES, I might have a chronic infection and she put me on antibiotics for 20 days.

But we were not satisfied and went to another ENT doctor, he ordered an CT with contrast. Everything was normal other than this Ossified styloid process. He suggested me I might have muscle spasm and reflux and gave a medication for that.

We still not satisfied and our family doctor suggested us to meet ENT surgeon in Baylor’s college of medicine in 14 days. I am waiting to have a good positive answer at least from this doctor.
If they surgically remove this will it be ease with the symptoms. Please give me a positive answers . I am little afraid.


#2

Hi Maha & welcome to the site! I’ve just sent you a PM with some info, before I saw your discussion!
Firstly there’s lots of info in the Newbies Guide about ES symptoms & treatments, and also about getting diagnosed.
Your story is not unusual as lots of members get turned away & misdiagnosed, but keep fighting, you’ll get there in the end! There’s a list of doctors familiar with ES in the Doctors Info section- it’s worth seeing someone who has experience with ES, even if you have to travel a way- some doctors do telephone consults so you could try ringing them, there’s quite a few in Texas.
And read up as much as you can, take some printed out research papers with you which support your case if you like so you can show doctors, so they can see that you know what you’re talking about.
Good luck!


#3

Hi I am from south Wales UK. I too have been misdiagnosed but after 3 years and 2 lingual tonsil operations later, I still had symptoms. Eventually an Eagle eyed surgeon spotted abnormal length styloids on a ct scan with contrast, he has now referred me to maxiofacial after seeing them, ent and maxio will then decide options. Maybe get a referral to maxiofacial?


#4

Hi! I had surgery yesterday to remove my ossified ligament. My main symptom was resolved instantly. Your biggest challenge is going to be hunting for a good surgeon. Don’t stop till you find the right one, my maxofacial guy said the surgery was above his wisdom teeth pulling capability lol. We’re here for you. Collect research, shop for a surgeon and keep assuring yourself that YOU know your body!


#5

Thanks Jules. Will the surgery is only option and will it be safe if we do surgery?. Little panic about surgery. Fortunately I got an appoinment with the doctors who are in the list. Our family doctor recommended him to us.


#6

Hi SewMomma,
Hope you are feeling good . Please update your experience in surgery. Is it intraoral or external . I am not scared about the surgery.


#7

Hope you are doing good . Thanks I have an appoinment with DR Donald Donavan in Texas .


#8

Hi there, after reading this I had to jump in on the conversation.
I live in Texas and did not have any success finding any doctors. I saw 26 in two years. I was misdiagnosed many times. I went through a mandibular joint replacement and a 4 level neck fusion without relief from my pain. None of the doctors I saw would diagnose with ES. Dr. Newman was on the list and he misdiagnosed me. Dr. Samji in San Jose did both of my styloidectomies , one in August and the other this past November.
Just thought I would let you know about the Texas scene…
Total of 4 1/2 years now and finally I am on the road to relief.
This space does not have enough to explain all the turmoil I and my husband went through. Not to mention the money and time and suffering I went through.


#9

I am sorry that you have gone through a lot. Dr Donald Donavan from Baylor’s college of medicine Houston is in the list , he did 20 surgery in the past year. Let’s see if nothing is worked out . Have to see another doctor.


#10

Which hospital have you been referred to?


#11

There are risks with surgery; it’s a personal decision with how bad your pain is or how your life is affected versus the risk. But with a good surgeon those risks are minimised. Equally there can be risks of compression of blod vessels & nerves if you leave the styloids in! Tgere are treatments which can help with ES symptoms, like nerve pain injections and injections of steroids into the area, but these don’t cure ES, they just help the symptoms, the boneis still in there, so surgery is the only cure.


#12

Hi Maha,

So glad you found this forum. You’ve been given lots of good advice by the people who’ve responded to you.

Surgery is the only real cure for ES & yes, it does help to relieve the symptoms. Sometimes they don’t go away completely, but they are minimized to a point where you can live with them, & they are no longer affecting your life in a bad way. The pain in your jaw, face & throat should go away after your styloid process is removed. It will take time (1-12 months) though as nerves have been irritated or damaged, & they heal slowly. Some symptoms disappear as soon as the styloid is removed which is good news (as in SewMomma’s case).

I hope you’re able to find a doctor local to you, but as gbr said, if not, traveling is also an option. Many people on this forum have traveled out of their home states to have surgery with a more experienced surgeon. It sounds like Dr. Donovan is pretty experienced. Hopefully he’ll be supportive & able to help you. If you have any uncomfortable feelings about him during your appointment, know that there are other good ES surgeons. It is important for you to feel comfortable with the doctor you choose.


#13

Baylor’s college of medicine


#14

Morriston Hospital, Swansea, South Wales. Uk

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#15

Hi S, I live in Aberdare. Since joining this group you are the 7th person within a 24 mile radius of me to have ES symptoms. Considering that ES is rare this seems to be a high figure.


#16

Omg that is a high figure. Good to know the there are others like us close by. We should try and firm a local support group

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#17

HI S, I have already met up with two people who live close to me. The last time we met up we met in Merthyr. The next time we meet up we had suggested Cardiff, because that’s where one member lives. Are any of these locations any good for you? One member is still recovering from her second styloidectomy and I had my styloidectomy last July (but experienced problems following it). However, at least it has been removed from my throat. Take care.


#18

Look for an Otorhinolaryngologist, not just an ENT. One thing I had to do was to get away from private hospital physicians because they tend to keep you in a loop with just their doctors. I suffered for 17yrs. until I went to a University based hospital. They do research and they have the most up to date diagnostic equipment.

In other words, doctors teaching doctors. I just recently, Jan. 8th went back to OU Physicians (University of Oklahoma) and saw the doctor who finally, after 17 yrs. diagnosed me with ES. I had not seen him since 2004, when a colleague of his did the surgery on me. That was the end of the symptoms and pain. He does do the surgery but, not that many. My surgeon passed a few years ago.

Dr. Kremple is the only doctor that is dealing with ES. and most of his patients are cancer patients. I begged him to continue to help ES patients because many are suffering. He said Okay.


#19

Shalom Jules, Just a few lines for you. I did see Dr. Krempl on Jan. 8th. I had made the appt. back in Nov. and he was that booked. He is at the Stephenson Cancer Center which is still part of OU Physicians, in Oklahoma City.

Since I had not seen him since 2004, he did remember me. Dr. Runkle was the surgeon who did my removal of tonsils and styloids. I let him know how much he needs to continue helping ES patients. He does diagnose ES but, his patients are mostly cancer patients. He is hard to get an appointment with but, he said he still sees ES patients.

I told him that so many are suffering like I was and that I have him on this ES Blog. He smiled…I asked him if he had a problem with it and he said, No. He was very happy to know that I was doing okay and if I had any problems, to give him a call.

So, he is still doing ES and he is the only one in Oklahoma who does the surgery. My surgeon passed…


#20

Thanks for that Hadassa! :grin: Glad that you are okay!