After many years and an increase in symptoms i decided to follow up and see if maybe my ES has progressed. I spent a decent amount of time trying to find a physician who had experience with ES patients. KNOWING i have ES he would rather have me do a CT scan AND an MRI in an attempt to prove my symptoms are more likely due to TMJ, migraines, or problems with cervical spine!!! I understand wanting to rule out other causes, but why would he think that one of these other conditions could cause all my symptoms-- just NOT ES?!? UUGGGHHHH
Who did you go to? I would look a little further. Since your dentist discovered it first, maybe he might be able to find you a oral surgeon who would help prove it is ES. You definitely need a CT scan of the styloids before you progress any further because that is THE only good way to prove ES.
Thx Emma. I think i will keep looking. Its just that i will probably have to travel to find someone with experience and i will need time to talk myself into a possible surgery far away from home 
I understand, wadams. Unfortunately, only about 1 in 50 of us seems to have good luck with local doctors without a referral from this site. That's just my best guess at a stat, but I do know it's not pretty. Maybe your ENT was like my (supposedly experienced in ES) doctor who actually assured me I didn't have eagle syndrome, and then went on and on about how lucky I am that I don't have it because it's such a terrible disease.
Meanwhile, I sat there staring at him while suffering from all the symptoms of this terrible disease...
I think sometimes it's like the Emperor's new coat: we end up going to the doctors who don't dare admit they've never heard of it, so they fib.
I ended up having to travel from the West coast to the East coast of the US for my surgeon, Dr. Cognetti, but it was worth it.
Hi all. ~~ The same thing happened to me, and I went to see a Dr. recommended on this site, Dr. Henderson. He totally 'pooh-poohed' ES, saying he "used to think it was a big deal" but didn't anymore.
When he asked if I'd ever considered that it might be TMJ I wanted to say 'do I look like a moron?' I mean, that's the first and most obvious thing that comes to mind when you have face pain!
He was fairly quick to say I likely have EDS .... I'm skeptical. And he recommended LOTS of follow-up tests, some intrusive (spinal tap.)
I got more information from Dr. Snyderman in Pittsburgh (I had to travel there ... I'm in the DC area.) He was wonderful and willing to do ES surgery in as early as 3 weeks. His protocol is one night in the hospital after surgery. That said, he could not guarantee that my symptoms were actually from ES and that since mine has been soooooooo long (24 years) its likely that the damage is already done and irreversible.
I did like him VERY much. And even though I'm disappointed and confused with Dr. Henderson, I thought he was ok too.
I don't know what I'm going to do .... I'm following up with my Rheumatologist I've been seeing for years. I'd think EDS would be under his umbrella.
Good luck to everyone, and may 2014 bring some freaking relief!!
~Can't remember my 'on-line' name! Oh ... Hopeful
I agree doctors want to push this problem off on another cause. I really wonder about those that they say are not symptomatic it is so easy to attribute this to another cause sinuses TMJ fibromyalgia etc I am in the process of waiting for an appointment with a Rheumatologist on Jan. 21 thank god it is almost here I have waited 2 months. The ENT wants to rule out Fibromyalgia before he will operate because of all the pain the surgery would cause. What the doctors do not realize is how much pain the Eagle syndrome causes and sometimes you just feel like cutting the styloid out in front of the mirror at home! The symptoms of this are so bizarre and seem as if they can’t be related to a bone in your neck that it takes 20 other specialists to say it is not anything else before they will admit it is Eagles.
Wadams: Please refer to the recent posts I've made concerning MRI contrast useage, I hve HIGH amounts of this in urine soem in blood and taht is 6 yrs post last MRI with/contrast!! that said it's casuing myriad of leaht issues with a dx of scleroderma via blood but docs won;t admit it because it is IATROGENIC (drug/doctor caused) they talk to one another of that I am certain!
A simple test of my own discovery, is to take a set of balls...tennis balls, or the softer pick sponge rubber balls, place into a sock, position at the occipital area, then behind ear at precisely the placement wehre they'd so surgery incisions, make micromovements on this ball, while lying down. NOTE ONLY DO THIS IF YOU HAVE NO RECENT SURGICAL SCARS I WOULD NTO WANT TO HEAR YOU'VE RIPPED YOUR NECKS & HEADS OPEN, AT INCISION SITES, ALSO CHECK WITH DOCS FIRST SO IT'S OK TO DO IN YOUR PARTICULAR CASES.
When I've done this* doctors and my hubby etc can "feel/palpate" the increased bloodflow all way down into toes and the sides of my feet, especially at the popliteal artery in left leg (of note yes I was hit by lightning traveling this exact route and into left hand and havec scar tissue there seen by naked eye I don;'t NEED drugs inseretd int o me to show this damage (I discovered this by virtue certain neck movements would relieve pressure and improve bloodflow, thus relieving pain, albeit just in bed while lying down performing the above actions. SO I KNOW it is a mechanical issue right where the styloid is)
For me it is goign to be a matter of gettign to a doctor who is going to listen to me and use what they gave doctors BEFORE teh advent of lethal tests like MRI's etc, his eyes ears and knowledge and intuition. If I can relieve myself of pain 50-75% temporarily, a doctor may be able to do it permanently!
Cathy
PS: I am not telling anyone NOT toget tests just choose wisely that CHOICE is yours...of note I HAVE NO PRE-EXISTING KIDNEY DISEASE, the FDA is covering this up as are many doctors in teh field of NSF! I bleieve i have the first non-nephrogenic case and will go to my death stating this, hwere ELSE did it come form wehn I was told I did not have Systemic Scleroiss for many years and recently started testing POSITIVE fo rhti sin my blood-thing is it is the DOCTORS interpreting bloodwrok and stating, "your #'s jsut aren;t that high to diagnose you-even tho they are +" They don;t want to diagnose this it would virtually remove 1/2 their revenue straight away!!
and there are also Antibiotics that can have affected us casuing facial/neck situations: http://www.fda.gov/Drugs/DrugSafety/ucm365050.htm
FDA Drug Safety Communication: FDA requires label changes to warn of risk for possibly permanent nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection
FDA Drug Safety Communication: FDA requires label changes to warn of risk for possibly permanent nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection
facial paralysis
FDA Strengthens Fluoroquinolone Warnings, Facial Paralysis Surgeon Responds to Nerve Damage Risk
Top facial paralysis surgeon Babak Azizzadeh, MD, FACS, responds to the FDA strengthening the warnings on fluoroquinolone antibiotics.
facial paralysis
Read more: Siemens Dx test panel recall draws FDA's 'most serious' label - FierceMedicalDevices http://www.fiercemedicaldevices.com/story/siemens-dx-test-panel-recall-draws-fdas-most-serious-label/2013-09-04#ixzz2e3IP9k9l
Subscribe at FierceMedicalDevices
IF YOU HAVE HAD IMAGING WITH CONTRAST MRI'S AND FEEL ISSUES THAT CONTINUE AND HAVE NOT BEEN DIAGNOSED-GET THESE LABS DONE THEN IF POSITIVE GET THE DERMAL BIOPSIES DONE-NOT THESE ARE SENDOUTS FORM A LOCAL HOSPITAL TO GO TO MAYO-YOU DO NOT HAVE TO TRAVEL TO MAYO IN MN, FL OR AZ:
http://en.wikipedia.org/wiki/Gadolinium
http://en.wikipedia.org/wiki/Sclerosis_(medicine)
THIS CONDITION IS NOT ONLY HAPPENING IN THOSE WITH KDINEY DISEASE OR IN THOSE WHO'VE HAD MORE THAN 1 OR MANY MRIS WITH CONTRAST-IT IS OUT THERE IT IS UNDER-DIAGNOSED AND NEEDS TO BE ADDRESSED!
Eagleheart:
What we all have to start doing is to appear at our appointmetns with a list of our ymptoms along with papers/resutls subatantiating what we know at present, wtih a sentence at the bottom that states:
I believe I have Eagle's synrome and having been sufefring with this for "x" amount of tiem. IF Dr "Smith/JOnes" feels you are not and refuses to do testing aor to diagnose, HAVE TEHM SIGN THE PAPER PLACE COPIES IN OYUR FILE AND WHEN OYU GET HOME, SEND ONE VIA REGITERED MAIL, this way it cna;t "get lost. Of note Jefferson & Cognetti, Curry, have conveneitnly LOST my pictures I asked them to take blaong malfunctioning computer NEW system, LOST or failed to prepare properly, a biopsy sample form teh back of my throat neecisitating another procedure not under anestheisia, painful! and lost slides i brought to them of a partoid gland biopsy done outside Jefferson. I live 1.5 hrs outside Jefefrson fo ranyone caring to go, I know the area well and will go along for the ride if you'd like or take you in my car, you pay for the gas, I will accompany you. It's tiem we tag-team doctors so they can't IGNORE what is in front of their noses.
BTW Cognetti only "felt" my styloids internally with his fingers on outside and other hand down throat, saying he didn't FEEL them, but then, noting the entire LACK thereof of any gag-reflex whatsoever, can we say, "Peripheral Neuropathy caused by Fluoroquinolones and Gadolinium?!" seeing him & Dr Stiels who I really like, as he has charted absoultely EVERYTHING I have brought up wehn the ENT Rosen exclaimed, " I dont want to HEAR about Gadolinuim, I aske ddo you want to hear about having posioned my body via Steroids & Fluoroquinolones (LEvaquin) during two post op visits i '08?! Yes I jhave been at this that long, chronic nfections and dont get me started on theirallergy/immunology dept telling em how "Migrnat farmworkers come here to sell us their blood then IVIG is made, trying to scare me from wanting EXPEN$IVE Privigen therapy that my ins co turned down, FOR NOW, doing letters as we speak forcing their hands! my systemic problems are also at forefront...grrr
Cathy
eagleheart said:
I think sometimes it's like the Emperor's new coat: we end up going to the doctors who don't dare admit they've never heard of it, so they fib.
I ended up having to travel from the West coast to the East coast of the US for my surgeon, Dr. Cognetti, but it was worth it.
Lifelongeagle, do NOT let them try to go down that road, been there done that, They kept me on many drugs for many years. (Baycol Vioxx Zellnorm that are PULLED FROM MARKET and have caused muscle issues with me-Zellnorm broguht back with ABB Warning) then Elavil, Effexor Neurontin & Paxil-just visit the Benzo Boards for those given ebnzos fo rFibro to see what I mean-I was able to cold turkey tho I don't advise, it is UGLY and painful to withdrawal-why start when that may not be the case?!_) Yes I believe FIBRO exists, but IMO, it is undxd Eagle's with my situation some IgG issues and Thyroid to boot (Just got dxd thyroid cancer CHristmas Frickin Eve via email! doc is in India....)
Their drugs led me to being bedriden 180 lb zombie 4+ yrs with undxd Lyme the start of some of my issues and it took me many years to unravel what they tied me up in. First of all NO DRUG is going to FIX EAGLE"s it may help with the side effect of pain etc, but that would be tantamount to me telling you thatilling your windhield wiper resevoir with some blue fluid, will help you drive, because your tire is flat!
Cathy
PS Stnad your ground with docs, MAKE tehm diagnose the right way before putting all sorts of dyes and contrasts into the body, that in MY case are still with me 6 rys later, does it happen to eveyrone ? who knows Unless you've had an MRI with contrast, you won;t know if you have, it may behoove you to get blood & urines sent to Mayo meidcal labs See my other posts on thsi!
C
Lifelongeagle said:
I agree doctors want to push this problem off on another cause. I really wonder about those that they say are not symptomatic it is so easy to attribute this to another cause sinuses TMJ fibromyalgia etc I am in the process of waiting for an appointment with a Rheumatologist on Jan. 21 thank god it is almost here I have waited 2 months. The ENT wants to rule out Fibromyalgia before he will operate because of all the pain the surgery would cause. What the doctors do not realize is how much pain the Eagle syndrome causes and sometimes you just feel like cutting the styloid out in front of the mirror at home! The symptoms of this are so bizarre and seem as if they can't be related to a bone in your neck that it takes 20 other specialists to say it is not anything else before they will admit it is Eagles.
Hopeful, OM FRICKIN GEE a lumbar puncture to dx Eagle's OMG he is an idiot RUN from this gu, run fast!! do NTO look back! I've had LP done for Lyme woudn up in hospital, I DO need another for GLycien levels twice HIGH in labwork through blood work, recommended by expert in Mitcohondrial disease to see f Glycine level is affectin gBlood brain barreir, but t check for Eagle's that way is like i said in previous post-adding windhsield flui for a flat tire!! Geeze some docs... can we say, "Pad the Bill and make as much $$ for our hospital system?!"
I was at UPMC over Thanksgiving and saw Dr Duvurri, and had teh FNA for Thryoid there, got results CHristmas Eve, he is in India for holidays may be back already-is Snyderman,neuro-jsut checked computer, I see him on the UPMC list right next to Raymond Sekula who I did NOT see in person EVER, but told me a few yrs back via email, "I Dont think you have hemifacial spasm" this was BEFORE I was privy to Eagles' I knew I had issues, but what docs can just look at paper records WITHOUT looking at a patient in person?! again to use the car analogy (it's the only way hubby understands my situation...) hat is like telling someone to just keep driving down the road because teh exit is there, but they have nails in the tire...
BTW I Do hear good things of UPMC re: Hemifacial spasms, mine are relatively mild not closing my eye at all, but the people of the HFS list are NOT mentionning Eagles' at all ( I was todl not to post ther becuase of mentioning teh L word...Lyme seems to be taboo for anyone shhhhh it really doesn't exist but in our minds...much like Eagles' unfortunately!
I will be headed back to UPMC, if not for a head (Eagle's) & Neck (Thyroid) surgery! wnana bet they want to do them separtaly, making more $$ but I am requesting a combo-plate sepcial 2 surgies at same time...BTW their snackshop at the one hosptial (Passavant?!) where they have neuros and cadrdiologists, serves the largest portion of coleslaw as a side dish it mus tbe 8-12 ozs and the marble rye-bread on sandwich is about 1.5" thick, is fit for hungry man! and all costing like $4! with a pickle too!
Hopeful said:
422-IMG_3169.JPG (1.88 MB)Hi all. ~~ The same thing happened to me, and I went to see a Dr. recommended on this site, Dr. Henderson. He totally 'pooh-poohed' ES, saying he "used to think it was a big deal" but didn't anymore.
When he asked if I'd ever considered that it might be TMJ I wanted to say 'do I look like a moron?' I mean, that's the first and most obvious thing that comes to mind when you have face pain!
He was fairly quick to say I likely have EDS .... I'm skeptical. And he recommended LOTS of follow-up tests, some intrusive (spinal tap.)
I got more information from Dr. Snyderman in Pittsburgh (I had to travel there ... I'm in the DC area.) He was wonderful and willing to do ES surgery in as early as 3 weeks. His protocol is one night in the hospital after surgery. That said, he could not guarantee that my symptoms were actually from ES and that since mine has been soooooooo long (24 years) its likely that the damage is already done and irreversible.
I did like him VERY much. And even though I'm disappointed and confused with Dr. Henderson, I thought he was ok too.
I don't know what I'm going to do .... I'm following up with my Rheumatologist I've been seeing for years. I'd think EDS would be under his umbrella.
Good luck to everyone, and may 2014 bring some freaking relief!!
~Can't remember my 'on-line' name! Oh ... Hopeful
Hey Cat ....
I was very impressed with the entire setup at UPMC. Dr. Snyderman felt my styloids from both inside my mouth and outside. Mine are so long (just over 6cm on the right and just under 6 on the left) that he'd have to make the incision in my neck and work his way up. My styloid apparently ends 2 fingers from under the jaw line.
LOVE your car analogy! I think when one says '2 fingers' as a measuring tool it should be for pouring whiskey.
Interesting you mention mitochondria. I've had 2 muscle biopsies and found to have mitochondrial myopathy ... which is abnormal but not diagnostic. I've been on the working theory that I have fibromyalgia for almost 20 years.
~~ Good luck Cat! Hopeful
Cat said:
Hopeful, OM FRICKIN GEE a lumbar puncture to dx Eagle's OMG he is an idiot RUN from this gu, run fast!! do NTO look back! I've had LP done for Lyme woudn up in hospital, I DO need another for GLycien levels twice HIGH in labwork through blood work, recommended by expert in Mitcohondrial disease to see f Glycine level is affectin gBlood brain barreir, but t check for Eagle's that way is like i said in previous post-adding windhsield flui for a flat tire!! Geeze some docs... can we say, "Pad the Bill and make as much $$ for our hospital system?!"
I was at UPMC over Thanksgiving and saw Dr Duvurri, and had teh FNA for Thryoid there, got results CHristmas Eve, he is in India for holidays may be back already-is Snyderman,neuro-jsut checked computer, I see him on the UPMC list right next to Raymond Sekula who I did NOT see in person EVER, but told me a few yrs back via email, "I Dont think you have hemifacial spasm" this was BEFORE I was privy to Eagles' I knew I had issues, but what docs can just look at paper records WITHOUT looking at a patient in person?! again to use the car analogy (it's the only way hubby understands my situation...) hat is like telling someone to just keep driving down the road because teh exit is there, but they have nails in the tire...
BTW I Do hear good things of UPMC re: Hemifacial spasms, mine are relatively mild not closing my eye at all, but the people of the HFS list are NOT mentionning Eagles' at all ( I was todl not to post ther becuase of mentioning teh L word...Lyme seems to be taboo for anyone shhhhh it really doesn't exist but in our minds...much like Eagles' unfortunately!
I will be headed back to UPMC, if not for a head (Eagle's) & Neck (Thyroid) surgery! wnana bet they want to do them separtaly, making more $$ but I am requesting a combo-plate sepcial 2 surgies at same time...BTW their snackshop at the one hosptial (Passavant?!) where they have neuros and cadrdiologists, serves the largest portion of coleslaw as a side dish it mus tbe 8-12 ozs and the marble rye-bread on sandwich is about 1.5" thick, is fit for hungry man! and all costing like $4! with a pickle too!
Hopeful said:Hi all. ~~ The same thing happened to me, and I went to see a Dr. recommended on this site, Dr. Henderson. He totally 'pooh-poohed' ES, saying he "used to think it was a big deal" but didn't anymore.
When he asked if I'd ever considered that it might be TMJ I wanted to say 'do I look like a moron?' I mean, that's the first and most obvious thing that comes to mind when you have face pain!
He was fairly quick to say I likely have EDS .... I'm skeptical. And he recommended LOTS of follow-up tests, some intrusive (spinal tap.)
I got more information from Dr. Snyderman in Pittsburgh (I had to travel there ... I'm in the DC area.) He was wonderful and willing to do ES surgery in as early as 3 weeks. His protocol is one night in the hospital after surgery. That said, he could not guarantee that my symptoms were actually from ES and that since mine has been soooooooo long (24 years) its likely that the damage is already done and irreversible.
I did like him VERY much. And even though I'm disappointed and confused with Dr. Henderson, I thought he was ok too.
I don't know what I'm going to do .... I'm following up with my Rheumatologist I've been seeing for years. I'd think EDS would be under his umbrella.
Good luck to everyone, and may 2014 bring some freaking relief!!
~Can't remember my 'on-line' name! Oh ... Hopeful
Wadams-looking down the responses I have some ????. Do you have a CT showing elongated styloids? If yes you really don't need anymore radiation. With all the tests I've had I thought the Dr's goal was to burn them off from the outside-like chemo. One CT really is enough. Or a really good x-ray or panoramic x-ray. But the CT showed my styloid was pressing up against or into my carotid artery. MRI's never showed anything ES related in my head.
I've had TMJ for about 20 years and ES is nothing like TMJ pain. A night guard relieved a lot of the really bad TMJ pain but didn't do anything about ES symptoms. I think he's coping out.
If you have elongated styloids, they need to come out and then see what your symptoms are then. They aren't supposed to protrude into your mouth cavity anyway. If they can be palpated then----duh---take them out. The surgeon that removed the last 3cm of my left styloid in September (the first 3.5cm was removed in 2003, the medical equivalent of measure once cut twice) immediately reached in my mouth with 1 finger and felt it so that gave me confidence he knew what ES is. I've had many, many, many ENT "doctors" dig around for it and not be able to find it-plus they seem to have really fat fingers and no finesse. Not a good sign.
I might still have TMJ symptoms but now I know that that is what they are or just healing from ES surgery.
I hope you find a doctor willing to listen at least. Refusing to know is another story. I had many doctors send me to the Cedar's pain center for pills like celexa, viox, etc. this showed me they knew I had something but didn't want to pursue surgery.
Is it my fault I want to die with a normal sized liver? No more meds!
I found my great surgeon just because my medical group sent me to him--all by accident. I was seeing a really highly recommended one at UCLA too. I'd have let either do the surgery because they took my symptoms seriously and knew what I had and understood the consequences of not shortening it down to the length it was supposed to be. I had a case of carotidynia--my styloid was sticking into my artery so they both had vascular surgeons ready if they needed to sew it up because it was damaged. Carotidynia has it's own set of symptoms because the carotid artery has nerves in it too that were being irritated. It is not just the symptoms you can feel I learned.
I know its hard to get a glacier to move. I hope 2014 is lucky for you. It seems its just been luck to find a doctor with skill. Which is better than the other way around.
I just got my final bill I don't have to pay $47,777.21 for the entire procedure.
Wiskey, uugggghhhhh, poopoo, are all feeling we get here. 2 fingers? no I got 1 finger for these guys.
Good luck if you need a Dr. in LA there is Burke at UCLA and Chen at Cedars. Those are good recommendations. Bad ones I have many but privately as per site liability.
Shawn
Thx Shawn. I get excited when i see someone post from LA but i am in LOUISIANA (which may explain more than one of the snafus i have experienced!). Thx for the info and encouragement though. I really appreciate how helpful everyone on this site is. Its good to know you can get an answer to just about any question
Wadams:
what part of LA? My sister just had a stent put in at Tulane, 4 days after Christmas, she lives just outside NO (Nawlins or NEw Orleans for the uninitiated...I have trouble with using CN or CA for Canada as CA is California!) But learning as many mnemonics as I can, even making a few of my own, NIEO, as in "Nothing In, Everything Out!" meaning stick nothing into the body but take everything out if it bothers you!
Cathy
wadams said:
Thx Shawn. I get excited when i see someone post from LA but i am in LOUISIANA (which may explain more than one of the snafus i have experienced!). Thx for the info and encouragement though. I really appreciate how helpful everyone on this site is. Its good to know you can get an answer to just about any question
Cat,
I am in Thibodaux, about an hour SW of New Orleans. If you know any docs here who treat ES, please share! Hooe things went well with your sister
I will let you know if I hear anything! I have a wide range of medical issues and you never know what you might find out!
that is pronounced TIB O DOE right? I knew someone with that last name too !
Cathy
ooops sorry. in CA LA is los angeles. I forgot about Canada also.
Yes, Cat. Your pronunciation is spot on!!
; > )