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Eagle Syndrome - Online Support Group

New diagnosis of ES


#1

Hello,
I am a 51 year old male who has just been diagnosed with eagles syndrome. My CT scans show Styloid Calcification on both sides measuring 6.5 cm on rt and 5.5 on lt. The ENT that I saw said that I have very extensive calcification. Since 1994 I have had symptoms of Sternocleidomastoid muscle twitching and jerking my head invoulantarily. Mostly at night when I lay down. I have been recently having a lot of trouble singing because of horseness due to all of the pressure in my neck. I don’t have the same symptoms of others that have posted. Most say facial pain and trouble swallowing, I don’t have either of those symptoms. I feel like my Submandibular glands are swollen all the time, I have constant feeling of sinus pain without any congestion, I have major neck twitching at night, high blood pressure, low thyroid levels, high blood sugars, and heart palpatations. all which may or may not related. Many doctors have been baffled as to why I have many of these symptoms with no family history of any of them. I am hoping someone on hear has some clear insight as to where to turn to get relief, and any other helpful information since this is considered a rare disease. Thanks.
Mark


#2

Welcome to the group. I have the symptoms your having on my left side, (shorter side) but on my longer side (7+ cm) im having facial pain pressure numbness etc… the only way to get rid of your symptoms is surgery. Find a doctor that has experience doing the eagles surgery. Where are you from? There are a list of doctors.


#3

Also i have surgery scheduled for this Monday. Finally!


#4

Magen,
Thank you for the reply. I have read so many bad things about the surgery for this, and don’t know if I am ready to take those risks. I will give the list of doctors a look tonight. I really don’t know much about this disease as of yet. Need to research this information to better educate myself.


#5

Oh, and good luck on your surgery.


#6

Welcome Meman,

If you don’t yet feel ready to go the surgical route, you can ask a doctor to try various medications, such as gabapentin, that have sometimes proven effective in alleviating the symptoms of Eagle syndrome; that option is also discussed on this website.

However, as Magen said, surgery is the only real cure for Eagle syndrome. If and when you reach that point, you’ll want to find a surgeon with a lot of experience. ENTs who specialize in head and neck surgery, skull-base surgeons, and vascular surgeons are the kinds of specialists you’re looking for. Patients have had successful surgeries with surgeons who did not necessarily know Eagle syndrome, but who had extensive experience operating in that area of the body.

As for your symptoms, it’s hard to know since each Eagle patient presents with different symptoms. Just because your symptoms are “not standard” doesn’t mean you don’t have it. Best of luck!


#7

Meman,

There are several surgeons in the US who have done quite a number of ES surgeries. The rate of success in surgical eradication of symptoms is pretty high. No surgeon will ever guarantee that surgery will get rid of your symptoms but there are many success stories on this site. I am one. I had bilateral ES that the diagnosing doctor called “an impressive case of Eagle Syndrome”. (Is that really the kind of compliment one wants to hear?!?). I had heart palpitations, low blood pressure, swelling in the roof of my mouth & gums, collar bone pain, pain at the back of my skull, along w/ a lot of the “normal” ES symptoms.

Dr. Cognetti in PA is probably the most accomplished ES surgeon in your part of the country. Dr. Forest & Dr. Newman also come highly recommended. On the West Coast it’s Dr. Samji, & another member on this forum, tambralee, is seeing a surgeon - Dr. Chettri at UCLA Med Center who is also apparently a very experienced ES surgeon.

There have been a number of musicians & vocalists on this site who have had good outcomes from their surgeries & have had their lost voices return post op.

I hope this info encourages you. Surgery is the only cure for ES but symptoms can be managed via various medications & physical therapies as callove noted.


#8

That is the kind of feedback I want to hear. Thanks for that info Isaiah.


#9

There’s lots of info all about ES in the Newbies Guide section- there’s info about common symptoms, and also the results of a survey that members did about their symptoms. Yes, the typical symptoms are lump sensation in the throat and difficulty swallowing, but not everyone has them- I didn’t! Changes/ hoarseness in the voice are quite common, and as Isaiah says there have been quite a few vocalists who’ve struggled with this ES symptom. MusicGeek has posted a while back about her surgery, I can’t find any of her posts I’m afraid, but you can search for her in the members tap at the top of the home page, click on her icon, and then send a private message if you’re interested. There’s also info in the Newbies Guide as to what to expect from surgery, and what to ask doctors about before making a decision about surgery. Generally if you have an experienced doctor and they take out as much of the SP and any calcification as possible, and smooth off any remaining stub of SP, then surgery helps. There are scary stories out there, but it’s often because inexperienced doctors have just snapped the SP off, or broken it into pieces and left it in- yes, that has happened!!
There’s also been quite a few discussions about sucessful surgery- here’s a couple of links:


Information is the key to making the right decision, so have a good look around on here, and if you’ve any other questions, feel free to ask!


#10

Thank you all so much for all this info. It seems as though I have a lot more going on in my neck than just eagles. I just got my MRI back and it shows many other problems in my neck as well. I know have frozen shoulders and numbness in hands and feet as well, bone spurs, bulging disks, and degenerative spondylitososis. So mant issues going on I don’t know where to beging. I just feel like a bullet and a gun would be a better option. I don’t have the courage to do that though, and I also believe in God, so that is not an option. It is truely unbearable right now for me with all my issues. It is impossible to find help.


#11

Meman- I’m sorry that you have so many issues with your neck & calcifications- sounds like there’s maybe something underlying going on, did you see a doctor when you got the MRI results, did they have any suggestions? I know quite a few members have had problems with calcium & Vit D levels giving these sorts of problems, maybe a referral to an endocrinologist might be helpful?
I’m glad that you have your faith to keep you going; have you got family or friends to help you too, & to pray with you? While I was waiting for surgery & feeling pretty grim, I read the Psalms alot, & also Isaiah 43:1,2.
And if you feel really low & need someone to talk to, there’s info on crisis lines here: Crisis/Help Line

I’ll be praying for you, & God Bless. :hugs:


#12

Hi Meman,
WOW! You do have a lot to deal with. I don’t blame you for feeling overwhelmed. Try not to let the “big picture” consume you. Ask God to help you pick one area to take care of. When that’s done, pick another area & so on. Over time you will be able to manage all the things that are hurting you.

I think Jules made a good suggestion regarding checking w/ an endocrinologist (& I would add maybe a nutritionist) - someone who who knows more about vitamin/mineral deficiencies & their effects in our bodies. Some of what you have (spondylolysthesis/spondylosis/spondylolysis - not sure which you have - & disc bulges) can be treatable with physical therapy. Disc bulges can recede (I know from experience) & w/ proper abdominal, pelvic floor muscle strengthening, & postural work you can help your spondy symptoms reduce dramatically.

This is a wonderful opportunity to lean on God & grow spiritually. He will prove faithful! 2 Corinthians 12:9 “…My grace is sufficient for you, for My power is made perfect in weakness…”

I will pray, too.