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eagle syndrome symptoms?
An ENT confirmed Eagle Syndrome, bilateral.  This was after excluding dental issue, eyestrain or problems, TMJ, stroke, etc (fI have a serious family history and PAD, personally).  The muscle relaxant my md gave me to try for a week last spring worked the best for the pain, but put me to sleep so I discontinued it.  

I went to a neurologist in August bec of 5 months of pain.  It is located in front of ears, behind jaws, radiating up to eyes and down to throat--adams apple and the back of my neck feels stiff.  I have since had periods of double vision, ears ringing or throbbing, and increasing difficulty swallowing.  I was missing several days of work at a time, he put me on the anti-seizure stuff they are using now which allows me to work but not effectively.  Took me off analgesics. It feels like I have the headache and sore throat of strep throat all the time, just less or more depending on the level of the Depakote.  My ENT doctor says he does not do or recommend the surgery for eagle syndrome; could my headaches be problems from a blood vessel growing into my ear or what?   I am deeply depressed due to the debillitation of my life from the pain.  Who should I go to for a second opinion?  What should I ask for? I do not have a history of depression before this condition.  I am 53 and female.
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I find this group so interesting because I think I am a verified member. Many doctors, many rt. side only symptoms-tenderness under ear, above eye pain, jaw and tooth pain, all chronic with weeks of trouble then quieting down. Getting worse.
I am a nurse in West Texas and have pretty much seen every type of specialist there is. I did have a 3D scan for eagles but only showed styloid processes elongated (4ml) but symmetrical. I would love to find a dr. in Texas who would be knowledgable about this syndrome. Suggestions, anyone?
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I think i have been diagnosed with eagles.
The dr i saw was very reluctant to operate and said, if i can find a dr overseas in another country, to go for it.

This is what my ct report said after almost 10 yrs of symptoms

the process measured 2.7 in length, with a further 1cm of the proximal stylohyoid ligament demonstrating calcification/ossification. the left styloid process and comparison measures 1.7 cm, and the mid stylohyoid ligament also demonstrates some ossification/calcification. the cartoid sheath does not clearly appear distorted on either side.  

conclusion- slight asymmetry of the stylohyoid ligament and styloid processes, with the right side being longer than the left. this is uncertain of clinical signifigance and is a common finding in asymptomatic patients.

The dr i saw didn't really explain this to me properly. I usually see another dr who is very clear. Could someone please explain this to me? thanks angie

You seem to know alot about eagles. Could you please help me with some info, and maybe a few surgeons who will do an operation. he was making out to me that pretty much, i wont get the op done in Australia ( my country) he kinda treated me like a Hypochondriac. Thanks
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I am so relieved to have found this forum.  For about two years I had suffered with excruciating stiff neck pain and sore throats that appeared to be seasonal.  Finally I decided I could not live without having this condition treated.
I visited an ENT who actually asked my primary physician if I was prone to hypochondria as I showed no signs of an infection inflammation or tissue distress exceptI did have an enlarged gland under the right side of my jaw to which he proclaimed it was cancerous.  I was skeptical re: the cancer diagnosis as I had this enlarged gland for at least 20 years.  But the pain was annoying at best and other times debilitating.  He wanted me to take a biopsy.  I did not want to risk seeding if it was indeed malignant and wanted them to remove it and biopsy it once it was out.  To his credit he insisted the biopsy be done, it was negative.    
My initial MRI was negative and I was then scheduled for a CT scan with contrast when the ENT gave me the Eagles syndrome Dx.  He suggested I live with the pain and use OTC analgesics.  I left his office being relieved my condition was real.  
Two years later I have now developed tinnitus and difficulty swallowing.  I also wonder if the blurred vision and glaucoma I have developed over the past few years could be related to pressure on the nerve or carotid artery.
The tinnitus is enough to drive me to get the surgery.

This forum has helped me greatly    
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After a year of increasing problems my dentist did a pana. to see if I had TMJ. He found the elongated styloid process. The ENT said it was "Enigmatic" and there was a lot of research on it, maybe one or two papers here and there. And he didn't think it was causing my problems, so he isn't going to worry about it. Easy for him to say. Now I'm looking for a doctor who will deal with this seriously. I'd rather live with the horrible symptoms than go to another doctor who tells me to relieve the stress in my life and I'll be better.
Anyone have advice on how to find a doctor to help me?
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Dear Doctors Friends.,

I am a patient from Sri Lanka and my name is Indika  (Male/38 yrs/University Lecturer)

I have been diagnosed as Enlarged Bilateral Styloid Process which is seen in 3d ct . My symptoms in its chronological order as follows.

1. Pain, irritation and redness in my left eye (20 years)
2. Difficult to swallow (20years)
3. Unusual tiredness coming from throat area (20 years)
4. Drowsiness in left eye (3 years)
5. Palpitations / Difficult to breath from throat area (1 years)
6. Changes in emotions with body movements. (8 years)

Most of these symptoms disappear when I lie on bed and drive. As I feel many of these are related to movements in my left arm.Now I am virtually bed ridden.

I humbly and hopefully expect your valuable medical  advice on this and whether it is possible in your country.

Awaiting your advice to save my life.


My Personal E Mail Address is
***@****

Yours faithfully,
Indika
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Dr Ramirez at the Sani Dental Group in Alsalbagones Mexico  across the Border from Yuma Mexico will take the Bones out 500 $ each side   you will lick his Hand from the Relief !!
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did you get help  ?
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I had all the same reply from my Dr's  I was Eagle Syndrome  Non of the dr's are taught of the Condition because of the original Reports from 1937 A simple snip will cure you. There is a Clinic across the Border from Yuma Az .  Sani Dental Group   Google them they will cure you  500 $ each side !!  you will Lick there Hand from the  Releif !!
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I have found help The Dr in Atlanta Ga  Knew nothing of this Condition  I found a Dr in Mexicalli Mexico just over the Border foem Calexico Ca Dr Roberto Takeo Raviera Estalano Maxifacio Surgey  He is going to do Sugery on my Mother and Myself as if is a Generic Defect and is Passed on in your DNA  The Dr know everything there is to know about Eagle Syndrome the American Dr's just Pilled me up and Shot ne Neck with Cortisone and no releif the Dr in US wanted to Fuse my Neck I found Dr Rivera by Chance and he is a Angel sent to Help Us !!  ***@**** He will save you !  The Pain will soon be gone !!  March 22 2012 is the Sugery
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correct  email for Dr Rivera       takeorivera @aol.com
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Try an acupuncturist also. I have a lot of these symptoms and it seems to stem from my neck being weak and easily dislocated.
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recently while I was probing around my mouth with  my tongue I noticed that there was a bone protruding out from my upper jaw on the left side.  I went to the right side and noticed that there was also a bone protruding but it was a lot smaller.  Leading up to this I had a one sided headache that persisted for 2 months some days worse than others.  This headache still comes and goes and is always on the left side.  I was convinced that I had something growing in my brain/skull....the C word.  I have also recently noticed that I have a dull aching sensation on the left side of my throat towards the back and sometimes my ear will ache on the left side as well.  I also have minor facial pain in my cheeks that sometimes extend up towards my orbital area all on the left side.  I had no idea what was going on until I found this "eagle syndrome" thing.  I dont want to sit here and self diagnose but I cant help but think that this is what I have.  I do not have any symptoms that keep me from going to work everyday but from reading everyone else's posts I'm thinking that it will get worse over time as the bone continues to grow?  I don't really want to get surgery so I guess I will just wait and see if things get worse.  It's scary to get weird bumps and aches in your mouth and head area.  Anyone else have minor symptoms like this?
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I had periodic pain in the right side of my jaw / neck / ear for a number of years.  It would come out of the blue and would last a few hours / days.  Often it happened in the evening and some Advil would be all I'd need.  It was always on my right side.  As time went by, my doctor and I felt it could be swollen glands from allergies and a medrol dosepak seemed to do the trick.  Over time, however, the presentation changed.  

I get pain with activity and the pain will start in my right jaw or ear and radiate often to the other side of my neck / ear and down my chest and back.  It can be excrutiating at times.  It will resolve if I stop what I'm doing and just stay still. It's worse in cold weather.  This issue worsened throughout last year until New Year's Day of this year when I had a pain attack that just about put me into a fetal position.  Heat, cold, Advil, tylenol, nothing worked.  Even another medrol dosepak did nothing.  

I ended up sicker and sicker through the month, saw an ENT who told me I had myofascial pain syndrome (I also have fibromyalgia), but blood work indicated Graves Disease.  I am on medication for Graves and have been seeing an ENDO for several months.  Thinking that this pain could somehow be related to my thyroid, I was put on prednisone and am currently on 17.5 mg / day along with my thyroid medications.  I no longer need to take Vicodin for the pain, but do have days with pain episodes.

My symptoms appear to be similar to yours, but I'd like to know if Eagle Syndrome responds to steroids and if there is anyone else who has had to differentiate the pain from Eagle Syndrome with pain from thyroiditis.  Also, does activity set off or increase the pain i.e. climbing stairs, carrying items, etc.  My carotid arteries are clear.  Thanks.  
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I am a 43 year old femail and was just diagnosed with Eagles Syndrome in April of this year.  My first symptoms that we know are associated with the syndrome first occurred in January and February where I had a constant severe sore throat, painful swallowing and lost my voice for over 2 months. After all tests came back negative I told my doctor "I'm not a hypochrondriac" that's when she told me about the extreme small possibility it could be Eagles Syndrome and we then had the xray that proved that it was. I have it on both sides. My Doctor was very straight forward with me and said that she has only done the surgery once about 10 years ago and wouldn't be heartbroken if I chose to seek another physician at UCSD that may be more experienced...love my doctor for being so honest.  But I may have another complication, back in Sept. 2011 I started having severe vertigo episodes which could possibly be associated with the syndrome which could lead to stroke, we are still doing tests to determine this. But up until this past weekend my symptoms were minimal and liveable...but Friday I came down with severe throat pain radiating to my jaw, face and ear, pain with extending my tongue, painful swallowing, couldn't eat, trouble drinking and was on Vicodin all weekend...now I'm seriously considering the surgery.  These are unliveable symptoms and I'm thankful for having a good doctor who actually would like to perform the surgery and I trust her.  If you live in San Diego area you should see her.
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3161766 tn?1343731313
I had bilateral Eagle's syndrome.  Just had the second styloid process removed.  I am still recovering but I can say I am glad I had the surgery.  It was done intraorally so the recovery is like that of tonsillectomy.  I live in the New Haven, Ct area and was lucky enough to find an ENT familiar with this syndrome who has the courage to operate.  NOT taking care of this can cause all sorts of serious problems.  My bones were 3 inches and a little longer than 3 inches.  One was growing into my mouth and could be felt under my tongue.  The other was growing into my throat and was making it difficult to swallow.  
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Who is your ent
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Hi my name is Dena" My mother sister and i have Eagles syndrome. I did have my right styloid partialy dissected. They said it was longest one ever been dissected and it went down in the New England journel of Medicine. My surgeon is Dr. Charles Moore @ Emory Hospital in Atlanta. He performed a intro oral approach. I now need to do the right side. It is a very painful surgery. And it takes 2 months of healing drinking liquads only. Im glad i did the surgery But Cleavland clinic does the outside apprach. Which i wish i had done. Because they can remove more. Im now on permant dissabilty. I have good days and bad days. But at least i know its not in my head. Its a real disease!!!!! Also you need a 3D cat scan to identify the lenghts of the styloids" Best of luck to you all. I know living with this is TERRIABLE!
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Please give me the name of ur dr and number in San Diego.  Thank u
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Please what is the name of ur doctor and number and location.  I live in UTC.   THANK U SOOOOOOO MUCH
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I have severe pain in my throat, neck,ear, mouth and teeth for the last 2 years. i've been for every test and x-rays possible, BUT according to all..... nothing wrong.... I am sure that I have 'Eagle syndrome", al my symtoms are the same, it is unbareable, I did some research and also find the same symtoms on "Temporal tendonitis". I'm from South-Africa does anyone knows a docter here who treads this??/
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1830085 tn?1318186062
I had a car accident and had a CT of my neck and I was surprised by a Diagnosis of Eagle Syndrome....I get left ear pain, Pain runs along my clavicle to my shoulder. Pain with the turning of my head. And YES I have had this popping sensation upon Swallowing almost my whole life. A very unique , awkward sensation. I get ear pain too. Most of mine are in the left side.
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I'm 78 and have had these severe coughing episodes till I feel I am blacking out or I have an emesis. I have had tinnitus for years and years, lately my first episode of ocular migraine. My jaw and face feel as if I had severe case of mumps.
Swallowing is really sometimes a problem and attempting to move my tongue with eating is excruciating. Even with attempting to swallow saliva can make me cough and choke because my swallowing is so bad. With my latest episode I could not even drink through a straw as the pulling was so painful.
Had a panoramic xray at the dentist.and she says the elongation is visible on the xray, and it is significantly prominent.
See an ENT tomorrow, wish me luck.
Nokomis
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Socalt, when you noticed this bone protruding more on one side than the other, did it feel like a bump on the roof of your mouth back in the direction towards your tonsils? I have 2 noticeable bumps in that region on the upper side, but the affected side's bump is noticeably larger feeling.

Can you describe where the protruding bone was in detail?
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Having left styloid (Eagle's) removed 9/13/2013 @ UPMC Presby-Pittsburgh, PA.  ENT. Surgeon.  Discomfort in neck/throat, swallowing difficulties, etc...Dentist identified Eagle's 3 years ago.  Took all this time to find ENT to remove styloid.
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I know this is a very late response to this but may I ask the name of the Doctor who helped you there at Stanford?

Thank you,
stillsinging
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Hi everyone, just some thoughts, I have Hashimoto's (hypothyroidism), had my tonsils removed when I was 38 due to bacteria picked up when I moved to another state.  However, when I had the tonsils removed it set off a chain of events.  My body went into overdrive when the tonsils were removed and that is how I came to get the Eagle's Syndrome.  I had styloidectomy bilaterally 2 yrs ago.  Today I am having problems once again.  I am waiting to hear from my Dr. at UTSW in Dallas.  Don't know for sure, but this may also be the reason I also have Dystonia.....? Can anyone else connect the dots on your situations?
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Could you tell me how you are doing after the operation and how you pain level is.  How long did it take you to recover from the surgery.
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Could you give me the name of the doctor who performed your procedure at UPMC. I am from Pittsburgh and in the process of locating a doctor who is familiar with the condition.
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I also get clicking in throat and very frustrated lkke yourself, have you found an answer yet please?
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I had styloidectomy surgery in 1994 on the left side, and another in 1998 for the right side.  Both were elongated, and the symptoms presented were different in each case. The elongation on the right side was not present at the time of the 1994 surgery; it apparently grew in the following years until facial pain brought me to surgery. Both doctors were in Santa Monica, CA.  I am not sure about the first surgeon's availability, and I would not recommend the 2nd surgeon due to bedside manner.  However, surgery in both cases relieved the symptoms immediately for at least a decade.
I am looking for yet another in Southern California if you know of one, as I am experiencing  pain on the left once again.  Anyone have any recommendations?  I will also share my experience. Each surgery was not a complete removal but a 'reach in as far as the instrument would go and snap off the end' type of surgery, through the mouth, so at least half of the elongated styloid hyoid complex was remaining after each surgery.  there is much we need to share with each other.  I am disheartened to hear from this chat room that the medical community knows very little more than they did in the 1990's.
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I just had the surgery June 2nd.   I have elongated styloids on both sides.  He did a partial removal on the longest one.  I cant understand yet what has happened but all symptoms have gotten worse.  Dizzyness, tinnitus and a migraine that has lasted 7 days now.   Something is definitely wrong and I called the surgeon and he said he is baffled.
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Definitely locate a doctor who will do surgery.  It completely gave me my life back!  My doctor went in from the tonsil point.  I have read about surgery from they outside, but mine went inside.  It was absolutely amazing.  If you check out a site called livingwitheagle.org, they have been creating a list of doctors who have helped them.  Find one and go!!!!   It will save your life.  
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Hi, this is a long shot since this post was 6 years ago, but my wife has long suffered with face and throat pain for years and has had a difficult time finding a doctor in Canada that will do the surgery.We live in Victoria, BC. also. Can you give me the name of the Victoria ENT you saw that did the surgery.    
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I have been having pains in my  throat for awhile now,it hurts more if     Italk,some times it feells like some one strangeling me a I also get     pain,sometimes when I turn my head or neck,went to ENT,he did ct scan,said it was eagle syndrome? what can I do for it and should I go to different kind doctor? I'm 46 and overweight,have throaid problems,high blood problems,very hyper,tired a lot and work 40 hrs,most of time on my feet.drive about 40 miles each way to work,no kids and no pets,no friends,husband very keep to our self type people,was not raised that way,but conformed to his ways,he is 61,very French,me mixed nationality?
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1972888 tn?1414223159
That makes me sad that it didnt last. Did you ever have more surgery since you last posted? How are you doing now?
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1972888 tn?1414223159
How are you doing? Was surgery a success?
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Did you get your surgery?  How are you feeling.
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who is your doctor.  Please share with us
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Anyone ever had an oral surgeon do this?
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I have found 3 places that specilize in Eage Syndrome - UAMS - Little Rock, UT of Dallas, and John Hopkins - do not go to an ENT to have surgery go to one of these specialist - I am sure there is others but I did extensive research and so did my local doctors - my husband is scheduled on September 16 at UAMS - I will keep you informed.  
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My husband has been diagnosed with Eagle Syndrome - we have an appt with UAMS in LIttle Rock - who did you see at John Hopkins I am overnighting my paperwork for him there today - I have read great things about them for this disease.  I am so glad to hear you are doing well.  If you get a chance please send your doctors name and keep me updated.  Prayers.  My email is ***@****
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My husband has Eagle Syndrome and we are looking at different hospital surgeons now - can you send me the name of yours.  We go to UAMS next week then John Hopkins.  Trying to get the best surgeon we can.
My email is ***@****
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Call UAMS in Little Rock or John Hopkins - they are specialist in this area.
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I have read more success rates in going thru your neck - when they go thru the throat it usual returns within one year
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crazy
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They only get worse as time goes - go see a Eagle Syndrome doctor specialist asap - one is UAMS Little Rock - John Hopkins and UT of Dallas  - goodluck
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Did you use a surgeon who specializes in Eage Syndrome - ifnot find one and make an appt
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I'm thrilled to hear UAMS specializes in Eagle's! I'm in Fayetteville, and didn't know there were any good specialists in the state. Can you tell me what doctor your husband is seeing, and what department/clinic? Thanks!
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Hi, I am a 48 years old female. My doctor recently found out that I am suffering from Eagle syndrome. before my doctor was thinking It's a 'Trigeminal Neuralgia'. I've sharp shooting pain comes to my lower right jaw. my neurologist were treating me with the medicine name ' carbamazepine' and I am still taking it. when the pain is severe doctor give me 'morphin' with saline. I haven't have any medicine given for 'Eagle Syndrome'. Doctor also told me 'Trigeminal nerolgia doctor mix up with 'Eagle syndrom'. I've seen an specialist for 'Eagle syndrome' and he told me i don't have to go for surgery yet. The pain that i go through is horrible. Please share what's happening and how doctor treating you with me/ us. thanks
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Hi spice,late response, but i get most of the symptoms all others have,also dystonia,  strange thing also, i see my heart beat in my vision,
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I am unsure of all of what I have, but I don't have dystonia but I see my heartbeat in my vision too.
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Bubba4783

Where is your doctor located? Everyone is suggesting finding "an experienced ENT" but where the hell are they? I don't want to be a guinea pig and I certainly want to figure out how to start a study into this rare syndrome.
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