First Visit with ENT-Have Questions

Symptoms and Treatments Doctor Information
1

Hi, Everyone!

I'm the one who went to Mayo Clinic/Rochester MN for a comprehensive work-up and among the issues, they found on CT scan a left stylohyoid calcification, without elongation, indicating possible Eagle's Syndrome that needed worked up. It answered a lot of my symptoms. They recommended I go to an ENT when I returned home to have this evaluated.

Today was my ENT appointment. I had seen him last December for one of the symptoms--it felt like I was swallowing broken glass. (He diagnosed cricoarytenoid arthritis then.) I brought with me my CT scan, the CT report, and a list of how the symptoms tie in with Eagle's syndrome and my medical history.

The ENT doc poked on where the ligament bulges in the mouth to see if he could replicate the symptoms. It was hard to say--although there was pain and then an ongoing numbness/tingling afterwards.

He did NOT look at the CT scan but he kept it and said he would look over all my info later.

He said the only way he treats this condition is with surgery. He uses the inside-the-mouth technique like a tonsillectomy. Said recovery is about the same as a tonsillectomy too. It would only take him 20-25 minutes to shave off some of the ligament, and he said he might also shave off part of the hyoid bone based on my symptoms. The recovery time would be one week. But he said there's only a 50% success rate with this sort of surgery when the ligament is calcified but not elongated. (And keep in mind he didn't look at the CT to see if it was even elongated or not. QUESTION: Does the CT need to be ordered with extra "slices" in that section to see a more accurate length of the ligament?)

I asked if I definitely had Eagle's and he said the CT scan and the symptoms certainly point to it but there's no real way to know for sure because some patients can have a calcified ligament and no symptoms. He said he'd look over my CT and paperwork, and he'd have me think about the surgery and he would think about it too. He left it sort of open-ended. Didn't say he would call, and didn't schedule a return appointment.

I will be going back to the same office to see a different doctor on Monday for a videostroboscopy to evaluate for vocal cord dysfunction, although the doc today does not seem to think I have VCD. So I guess I'll ask the staff then what I should do with the way this ENT left things. And also pick up my CD of the CT scan because I'm thinking I need a second opinion.

Any feedback from you all?

I do have the following symptoms:

  • Swallowing issues w/ aspiration (relatively normal swallowing test)
  • Feels like swallowing glass when I sing, and tighter lungs
  • Hurts to turn my neck
  • Left ear fullness
  • Left side of face feels “dull” compared to right side
  • Head and neck pain, had PT for this 12/2012
  • Cough up phlegm, especially after meals
  • Pain with yawning
  • Nocturnal Oxygen desaturation

And I have the following previous diagnosis for neck/throat issues:

  • Tonsillectomy
  • Thoracic Outlet Syndrome
  • TMJ adhesions (non-trauma related)
  • Eustachian Tube Dysfunction
  • Laryngopharyngeal reflux
  • Cricoarytenoid Arthritis
  • Cervicalgia with PT
  • Possible Vocal Cord Dysfunction

I also have Sjogren's Sydnrome, Diabetes, Bronchiectasis, and other health issues that complicate matters.

Another question: I've read some reports where Eagle's can turn dangerous (fatal). Do most people get treatment to prevent something WORSE from happening (like a vascular event) OR do most people get treatment to alleviate symptoms? If I can put up with the symptoms (not saying I want to, but if I decide to), is there any other reason to get surgery? It's a lot to consider!

I've had 12 surgeries, and have had complications with almost all of them, so any time I can avoid surgery is a good thing.

Thanks!

Kathy (aka WillisWay)

2

Hi Willis Way,

I would recommend getting a second opinion from an ENT who is very familiar with ES and who does the external procedure. If you have issues with the hyoid and the styloid they have a better visual field of everything. Most of us with ES have multiple issues. In my opinion If he can't feel the styloid or take the time to look at the CT scan during your appointment that you are paying for is not a good sign. Take your CT scan and run!!!

What area of the country are you in?

3

Hi WillisWay; BigsBug is right and she just had surgery! That is a bad doctor and I've had a lot of experience with that. My surgeon now looked at CT and discussed it with me. I've always been told that external is best and had it done in 1990 on the right. I have to have it internal on the left since I've had 2 failed attempts externally on the left and good doctors say that I have too much scar tissue adhesions now so if they did do it externally they wouldn't guess what they would find-so since it was explained to me I'm ok with it.

That's what you need, a doctor who will discuss your symptoms with you and have you feel the doc patient relationship that used to be lauded. As for the CT-what was it of? My best is of the neck top to bottom; side to side and front to back-each with about 70 slices and the styloid shows well in all of them.

Has a calcified stylohyoid ligament been considered? that can accompany a calcified styloid. It runs from the styloid to the hyoid bone so I wonder if that's why working on the hyoid is mentioned.

the CT is a good way for a doc to see not poking around-if you already have the symptoms how do you duplicate them? My doctor just touches it to see its location and does not press hard so as not to make it worse. The symptoms seem like it could be ES. Ear pain, water in the ear feeling, most of the above.

For the past 25 years I've dealt with my ES and have read about people finding out they have it when the styloid puncture the carotid artery causing an eschemic (sp) stroke. ES effects 4% of the population but only 4% of those have symptoms-that's us here.

Welcome!

Shawn

4

the doc not looking at the scans and talking to you about them is a big red flag for me.

I had three tell me I did not have any such problem without looking at my scans or reports.

then when I insisted that they take a look, they pretty much went into "lets humor this guy so he will leave" mode.

they went into the next room, and I could hear them say, "that is the worst I have ever seen"

after finally looking at the picts, each one said that it was too involved for them and sent me to the next and we did the same dance again 2 more times until I found dr cognetti.

his suggestion of doing interoral and "shaving" some off, not sure about that. from what I have read on this site, everyone that has had partial removal has had little or no relief.

curious how he would work on the hyoid from the inside roof of the mouth too.

the one I had on the right side had grown down and was attaching to the hyoid. caused lots of weird stuff. cough, gag, restriction when swallowing. it also had caused the spit gland under the jaw line to swell up and I felt like I was drowning most of the time because the gland was over stimulated or something.

dr cognetti went in through the neck and worked on it, he removed the styloid, and did something to the hyoid and gland.

the right side was done on may 31, 2013 , the left on july 8. I noticed improvement as soon as they woke me up. only problem was doc insisted on doing two surgeries. but it was well worth it.

keep checking older posts on here, there are several doctors mentioned with good results. I cant say enough good about doctor cognetti and his team. he listened and gave feedback, that is key to any doctor visit. I would not put much stock in one that would not even go over the scans with you. (been there, done that, for about 13 years)

something else that impressed me about dr cognetti, one of the first things that he said to me was, " I want to let you know that I am not an expert in eagle syndrome, this is so uncommon and there is so little known about it, there is not really anyone that can call themselves experts with eagles" that meant a lot to me, he was not going to toot his own horn and let me know what I needed to know up front.

bottom line, don't give up, keep looking until you find someone you can get straight answers from and feel comfortable with

1 Like
5

Hi WillisWay,

I brought my scan to the ENT and he is ordering another one because the original was done in standard "axial plane" view. He wants a "sagittal plane" view to properly see the growth.

As for the calcification length, you need to consider that most people's idea of ES is that the styloid process grows (ossification) beyond the normal 2.5-3 cm, so when quoting length, they include the normal length in the total. But if you are talking about the stylohyoid ligament, then you start measuring after the normal styloid process length.

By the way, this kind of confirms what I believe about ES: - that it can be either the ossified growth of the styloid process OR the calcification of the soft tissues of the stylohyoid complex.

It would seem likely that in the case of the styloid process actually growing, the directionality and position in the neck would be more random than in the case of a calcified styloihyoid ligament, which would be more fixed in directionality and position. The latter would probably be more likely to cause the vascular version.

As for your ENT's methodology and opinion, I agree with everyone else, that he is a cause for concern. When and if it comes time for me to have surgery, I wouldn't waste my time with the intra-oral and will definitely opt for the external approach. If it turns out that it is the actual ligament, don't have both sides done at the same time. You will need time to discover how the missing ligament will affect normal activity as well as give your body time to adapt to not having it around. If it is a ossified growth of the styloid process, then your body won't miss what shouldn't be there in the first place.

Good luck with getting a proper diagnosis. Keep trying and don't give up.

Red Pill

6

You have been given good counsel. I would use Dr. Cognetti in Philadelphia if I was as close are you are. He has done quite a few people on the forum who have flown from across the country to see him. He may humbly say he is not an expert but he is one of the few that we know of on the forum to highly recommend. Just my opinion.

I just had the external done on my right side, last Thursday; I am still healing and doing quite well. Still a bit sore and bruised but all in all ok. It is still too early to tell about all my symptoms until all the swelling goes away but a large majority of them are gone.

I hope you get a good second opinion that you feel more comfortable with.

RB

7

Thanks everyone for your replies. I've learned a few things from your interaction. One big one seems to be that me having a calcified stylohyoid ligament is treated differently than those who have an elongated styloid. So does a calcified stylohyoid ligament (what I have) present differently than an elongated styloid (have different symptoms or risks)? And what questions should I be asking regarding risks, complications, conditions this can cause, etc?

For those who recommend I go to Dr. Cognetti, you may not be aware where I live. I'm in a town outside of Austin, TX. The closest "expert" to me would be either Dr. Donald Donovan in Houston, TX or Dr. Richard Ragsdale in Allen, TX. Both are about the same distance from me. The one in Houston is affiliated with one of the top medical centers in America, so that one might have a little more klout with me. I'm reading through everything I can find on these two doctors here at the Living with Eagle community. If any of you have had a negative experience with them, I know you aren't supposed to put that on this site, so if there's a way you can give me a warning, I'd appreciate it. I've gotten the runaround with too many doctors on too many issues lately to have much patience for chasing down a "dud" doctor.

I called the ENT in Austin, TX I saw yesterday, and left message with his nurse to ask if he is had a chance to look at the actual CT scan (what Mayo Clinic said was a calcified stylohyoid ligament that needed follow up with ENT). I wanted to know if he was definitely diagnosing Eagle's syndrome, because that's the first thing--to know what we're dealing with.

Thanks for your help. Reading your notes on this thread, on reading other discussions here at the site is extremely beneficial.

One more question: Is there a big risk with a calcified stylohyoid ligament of having stroke if it compresses the carotid artery? I'm already at high risk for stroke due to: Dad died of stroke at age 52, and I'm age 50. I've been treated with high BP since age 31 and have had times when even 3 medications couldn't keep it stabilized, I'm diabetic, I have autoimmune disease, and I have familial high cholesterol. I have lots of the symptoms you all mention that are associated with Eagle's syndrome.

Again, thanks!

Kathy (aka WillisWay)

8

Hi Kathy,

I live in Hawaii and I went to Dr. Cognetti. It's very important to find someone who has real experience with Eagles. I also went to the Cleveland Clinic because they are so well known, but my experience with them was not that great. They didn't know that much about Eagles in my opinion.

From my viewpoint, for a first surgery, the optimal experience to prevent future problems is to go to someone experienced with doing Eagles surgery who takes the whole thing out with an external surgery.

9

Thanks, Heidemt! I just returned from a 10-Day comprehensive medical evaluation at Mayo Clinic in Rochester, MN. So I'm not opposed to going far to get good treatment. It's just that I did NOT get helpful results at Mayo, so right now I'm simply tired of researching doctors and wondering if they will really help. The discovery of the possible Eagle's syndrome was told to me AFTER the fact, when I returned home from Mayo, because I asked for the rest of my test results. I was there for several different issues, so right now I'm following up with about 12 different specialists. It's not merely the Eagle's syndrome I'm dealing with. And all of it is contributing to me having physician fatigue. I'm also in a stabilization boot up to my knee for an Achilles tendon bulge that is being questioned as a mass, needing a biopsy, but the specialist can't get to it for a few more weeks. So, while I'm sitting here with my foot up, I have time to research the Eagle's syndrome and develop a plan.

10

Hi Kathy,

I completely understand physican fatigue. That's a common symptom of Eagles : ).

I want to clarify something that I didn't make clear in my other post. I didn't have surgery with Dr. Cognetti. I went to see him to be evaluated for surgery, but he turned me down. I eventually found Dr. Samji in San Jose, CA and had a very successful surgery with him, so it turned out good. I was trying to make the point that unfortunately, a lot of us Eagles patients have to travel great distances to find someone with knowledge and experience with Eagles. I regret that I had my first two surgeries by doctors who were experienced surgeons, but weren't familiar with Eagles. Neither of them took out enough of the styloid and I continued to have many problems and lots of pain.

Best of luck to you - I know it has to be hard with multiple issues and problems. I think it's good you're researching and asking questions. I sure wish I did more of that before I had my first two surgeries.

11

Dr Ragsdale has operated on one of our members, , but I think he only does intraoral If you have a lot of issues and may need part of the hyoid removed, you need to be getting advice from the best and external surgery has been more successful for most of us. If you read the posts or ask Viperbone, she will tell you that Dr. Donovan was awful to her though one member did get good results from him. Viperbone had high hopes because like you she and I live in the south. I have scratched Donovan off my list since he saw Viperbone. She ended up going to a Dr in Pittsburg.

Dr Cognetti and Dr Samji have been the most successful and at ease doing external surgeries. This recommendation is based on the number of our members who have had great results from them. Many of our members including myself have had some success with other doctors, but these two are the standouts so far. As more people come forward and have more excellent recommendations the list may grow, but we are interested in making sure that we get the best possible help for each other if we can, so I guess you could say we are trying to maximize our chances of having positive outcomes the first time by going to the doctors that we know will give us the best care. The best possible outcome is to have the first surgery be successful. If you do find someone wonderful in TX, let us know. I was perusing the doctors at MD Anderson for ENT's one day and I found someone that was in the same group as Dr. Donovan who actually states skull base surgery as part of his practice. I cannot remember his name, but thought he sounded more appropriate than Dr. Donovan.

12

Hi Emma,

I would like to add Dr. John Milligan to the site. He is my surgeon and is amazing. He has 2 offices in Arizona one in Phoenix and one in Scottsdale. I go to the Scottsdale location so I will give you that information. He has done 2 other patients on this site as well. Sustain had her styloid removed TODAY!!!! She loves Dr. Milligan too. He only does the external route. He has a new assistant so there is learning curve with her but she is very nice too. But I have been training her along the way on ES, FMLA, Short Term disability paperwork ;-). I have not had a bad experience with any of his staff.

6565 E. Greenway Parkway #101, Scottsdale, AZ 85254 phone #480-948-2056

Willisway,

Arizona is a closer than Philly or San Jose ;-) It is worth a phone call. Here is a little information on Dr. Millingan:

Dr. Milligan is an active member of the Valley’s medical community, serving on numerous boards and in many medical staff leadership positions, including: Chairman of Surgery at Phoenix Children’s Hospital, ENT Section Chief at Banner Good Samaritan Medical Center, and a member of the Surgery Committees at both Banner Good Samaritan Medical Center and Phoenix Children’s Hospital. Dr. Milligan is a founding member of the Skull Base Surgery Team at the Barrow’s Neurologic Institute.

13

Long but informative: PLS READ TO END!

Your remark about the boot is what i am going to address first, have you had recent treateent with Fluoroquinolone antibtiotics with or without any steroids co-prescribed? there are many people I know of who've been harmed by this combo, or just a FQ (CIPRO AVelOX OR LEVAQUIN are the more common ones) me being one and also harmed by the Gadolinium MRI's so many of us have had in pursuit of a diagnosis. I have high amounts of Gadolinium in urine and some found in blood, (yet my doc wanted me to proceed to see a psychiatrist for Lyme related issues feelign my comlaints wer psyhcosomatic/hypochondriacal) BUT it's been 2.5 years sicne my last MRI with contrast and teh doctors are draggign their feet to help me. I do believe a combination of both have contributed to my current condition of "possible Eagles' syndr"
I am seeing Dr Marlind STiles (A Stiles of Jefferson FRi) he took my one and only panorax xray and said he thought I might have it as they seem to be elongated.


I'd also seen Cognetti and he did not think so...


Trouble is almost five fold...

The ENT dept had taken pics of nmy throat (I had a vallecular cyst on rear portion of tongue and was told by Dr Mark Rosen that "he ca't reach back that far to do a swab/culture" PICTURES HAVE BEEN CONVENIENTALLY LOST!"

I asked for the swab myself and in front of Rosen a nurse and hubby got thick black fluid out of it, they cultured it and told me it was negative.

WIthin 3 days I went to local dr for swab and it cultured for Klebsiella Oxytoca pneumonia. So one of 3 scenarios:


Their lab did not do test properly.

If they DID perform it at all & yet charged for it.

They CAUSED the KO.

I've had problems all around with teh ENT dept but not dental. They've lost or destroyed another biopsy sample taken the day the vallecular cyst was removed and when I'd gone back for my post op, I was asked to submit to an awake-biopsy, not my favorite feeling to have injections to back of throat and have incisions made. The day of the intial biopsy I had reddish blisters called the surgeon, Dr Curry ENT and asked if he still wanted to do the biopsy-he did hence the negative result then positive within 3 days locally. I do have igG issues addressing (at Jefferson-what am I an idiot?!) yes at month's end

I also had an LP in their neuro Dept, because I've had histopry of Lyme and many positive tests despite treatment and needed to know if the Lyme passed BBB (blood/brain barrier) that would definitely get me better/longer, more intense, treatment. My rx was written by Dr David DOrnfeld of Middletwon NJ and given to their neuro Dept Dr Christopher Skidmore. The day of the procedure I was chattering incessantly because of nerves, it had taken me 7 years to get up the courage to even have it done. They had to insert it twice because I, Like you HAVE SJOGREN"S (BTW I test neg biopsy partoid gland neg yet amm dxd with it due to loss of all teeth (how's there no room for doc ROsen to even do swab when I have a wide-open space?!) hmmm?!? GUess what else harms glands making tehm unable to perform, why FIBROSIS/ SCLEROSIS! of course.

within the week I get my report and NOTHING on it refers to Lyme, NOTHING nto a word of Lyme in the report! WHEn that is what appeared on the rx! in Dr DOrnfeld's handwriting! CSF was checked for everything BUT LYME!? Really, I did a complaint to my own doctor he told me to call JEfferson, I called JefFerson/Skidmore, tehy told me to talk to my own doctor-BOTH DOctors did a letter to eah other stating they'd done all things "properly' NOT SO and I have been so sick (4 bouts of the KO Pneumonia and 3 hospitalizations in 2012 alone!

This is not the only stuff, in 2005 I saw rheumatology dept Dr Nora Sandorfi, now at Fox Chase (is THIS where they send all the bad doctors?) who "promised me I did NOT have Sytemic Sclerosis/scleroderma" GUess waht I test a low positive for NOW? You got it...Syst scler 1:40 ana nucleolar pattern. How'd I find out?

I went to local dermatologist becaue of skin tightening they thoguht it looked like SS with my history and all & after teh GAD in my urine and serum/blood I found out about the Connection to NSF (except i DO NOT CURRENTLY exhibit kidney disease) The docs think 350 cases world-wide of NSF and newer screening (do you now have KD-NO?! FIne we weill now inject you wtih a toxic rare earth element called Gadolinium My poison was magnevist-soem have this with one MRI Ive had at elast 10 in 13 years!)

It is so frighteing to know that being sick, we submit ourselves to such testing, some invasive some not. But for a drug to stay in my system causing all sorts of problems, this many years later and to be detectable is so BAD and for docs whom we are supposed to trus t for HONEST OPINIONS< to seem to cover things up because they do NOT want to be the ones to claim teh first NON-NEPHROGENIC CASE OF SYSTEMIC FIBROSIS in the world.

I've also travelled to Cleveland Clin, in 2011-summer and all they wanted to give me for hemifacial spasms and dystonia were DRUGS! (and they did not want to reove impacted barium rorm bowel-see below) I'd taken my Lions's share for "FIBRO" Paxil, ELavil, Effexor, Neurontin, Vioxx Baycol & ZEllnorm last 3 pulled from market only Zellnorm brought back, believe me I suffered packed on 80 lbs to 5'1" body and was bedridden 4+ years which was really undxd Lyme, Babesia & b. burgdorferi, Thyroid dis (toxic multinodular goiter-ablated 2005 within one month's time, developed pancreatitis) dropped to 92 lbs; Lupus (speckled homogenous pattern ana 1:40 also) teh KO pneumonias, RSD/CRPS for which they wanted to infuse me with Ketamine an animal tranq, at Hahnemann and had the paper for me to sign within MINUTES right there pen in hand, when that drs study was pulled for one reason or other (Dr RObert Schwartzmann neuro) his pateients cacmce out of the buidling literally as ZOMBIES SO SAD!

All I am saying now is to try to keep things GOING INTO BODY to minimum, I do want surgery if I can find someone to admit it's what I have and help me get ridd of the pain and spasming. I can make it stop myself lying in bed and placing head on a ball occipitally, yet when i get up it returns 80-90% pain relief is a great % but it's temporary. I need permanence!

My new motto is : NIEO-NOthing IN Everything Out! They can take as much tissue biopsies, bones, hair, blood urine or spit, etc they want and TEHN check it under various microscopes etc but when it comes to putting anything in to see what lgiths up, NO THANKS> I am no Sprague Hawley Rat or a knockout mouse. I have had 5 dermal biopsies with GAD found ocne thoguh not in amounts tehy would be concerend with-if it has made it's way to my out skin....WHAT IS IT DOIG TO MY INTERNAL ORGANS? FIBROSIIS OF COURSE IN BOWEL WHERE ELE? AND MAYO WILL ONLY QUANTIFY DERMAL BIOPSIES They recently changed their sites list to exlcude teh sentence "100 healthy controls" becuaes

if you ahve tight skin ANYWHERE and have had MRIs with contrast have your own PCP order thees sendouts only a major hosp can do them as sendouts as tehy have to have an acct with Mayo to bill (BUT guess what MY INS WAS NEVEr BILLED ! did they do the test or did they fudge it? Hmmmmm I will be writing a book on this sometime in future when I get the answers I am longing for.

http://www.mayomedicallaboratories.com/test-catalog/alphabetical/G

SO i implore all of you with similar stories to review your cases, see how much GAD you have in you and THEREIN may lie the answer, as tissues atrophy/fibrose/sclerose, whatever verb you want to use, pain is the result and needs to be addressed, it can affect circulation becaue like a flattened hose, a vein or artery with scarrign within it will not wok up to speed! if with surgery, so be it. I know lifting my head to look up and getting sharp schock-like pain down arm is not good, nor are the lumps in throat/neck BTW although I have had ablation to thryoid, I still HAVE NODULES, chasng down everyting else I hve not even addressed this but did bring it up to Cognetti who pretty much wanted to BLOW out of the room, knowing the history I have at Jefferson...how'd they manage to screw up so mcuh? Dunno

Maybe they had lessons from Hahnemann, went on for 2nd colorectal surgery in two years time, simple removal of cerivacl cuff and they:
Caused hematoma,

non-contrast CT found RETAINED BARIUM in bowel I have been trying since 2010 to have removed and no doc wants to touch me with ten foot pole becasue it would mean they'd have to admit it shoudl have passed and when zi suffered the hematoma and the barium was discovered, they shoudl have goen RIGHT BACK IN like they wouldve had to do if it were a hernia (which i suffered at childbirth 24 yrs earlier)

and teh best part?

The gyno onc Dr STEPHANIE KING YUP HORROR now at FOx chase with her Hubby, FORGOT TO TAKE MY TUBES AND OVARIES!

AN oh yea, my paterna Grandma, died befoer i was born, at age 51 of "some form of cancer" at SLoane KEttering in NY and I have tested twice postiive for CA 19-9 and no one can figure out why!

I am sick, sick, sick of doctors, but will NOT rest till I hld them all accountable and start to feel better or as best I can is psite if my conditions.


PS I was in hurry with this and having tiight hands often make typoes I will apologize for I can spell ; > )

Cathy

2nd warning some have been totally pulled from market


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

http://en.wikipedia.org/wiki/Quinolone

Google MRI toxicity stay off attorney sites, I do believe there are many of us in the same boat-YET NOP ONE'S MAKING THE CONNECTIONS and teh docs do NOT want us to rock the boat!

and I am not bashing Cognetti personally , I just did not like the way I was treated and WILL get my answers no matter where i have to travel. I am in NJ Ocean County and on FB under my real name. Message me if anyone ahs any ?'s it's my pleasure to help anyone like me

Good luck with Achilles injury-don't psuh it but keep it moving so it doesn''t atrophy much

http://en.wikipedia.org/wiki/Gadolinium

AND TEH GADOLINIUM WE ARE URINATING OUT IS IN OUR DRINKING WATER SO WE GET DOUBLY DOSED AND POSIONED! MANY MORE ARTICLES I HAVE in laptop

Anthropogenic gadolinium as a microcontaminant in tap water used as drinking water in urban areas and megacities

http://www.academia.edu/Documents/in/Anthropogenic_Gadolinium

http://en.wikipedia.org/wiki/Sclerosis_(medicine)

WillisWay said:

Thanks, Heidemt! I just returned from a 10-Day comprehensive medical evaluation at Mayo Clinic in Rochester, MN. So I'm not opposed to going far to get good treatment. It's just that I did NOT get helpful results at Mayo, so right now I'm simply tired of researching doctors and wondering if they will really help. The discovery of the possible Eagle's syndrome was told to me AFTER the fact, when I returned home from Mayo, because I asked for the rest of my test results. I was there for several different issues, so right now I'm following up with about 12 different specialists. It's not merely the Eagle's syndrome I'm dealing with. And all of it is contributing to me having physician fatigue. I'm also in a stabilization boot up to my knee for an Achilles tendon bulge that is being questioned as a mass, needing a biopsy, but the specialist can't get to it for a few more weeks. So, while I'm sitting here with my foot up, I have time to research the Eagle's syndrome and develop a plan.

14

hey, its me again, still following this thread.

your questions about distance for treatment and blood flow

distance, I live in southern Illinois, we are told some of the "best" doctors are in our area, closest being in stlouis.

went to them and only got the runaround.

I ended up making a total of 3 flights to philly to see doctor cognetti, it was expensive but after about 13 years of chasing these symptoms and being miserable,, the cost and time was well worth it to have someone that did not blow me off or keep telling me to come back in a month to see if there was any improvement knowing full well that if it had not gotten any better over the last 13 years, it would not get better by the next month. all it did with those doctors was make a few car payments for them...

blood flow issues,

what I had was the full blown elongated/enlarged styloid on both sides. the CT with contrast showed that the juggler was constricted 50%+ on both sides. my blood pressure was up, head constantly pounding and if I did anything that made the blood pump harder, exercise, picking up heavy objects etc, the pounding would get worse. the scans said that the flow was restricted that much when in a neutral/stable position. I found that my near black out spells were most likely caused by the restrictions. I could turn my head back and right and I would start to go into black out mode. at one point, I was asleep and my head got in a bad position (back and right). I remember that it seemed like I was floating over the bed yelling at myself, I was saying "wake up, wake up now or you are going to die" when I did wake up, my head felt like it was about to explode. I could hear the blood going SWOOSH, SWOOSH. I finally got my head put back to straight ahead and the pressure regulated but the headache was terrible for quite some time. I did not get any doctors to go on record to confirm but I think I was just a couple minutes from stroking out if I had not made myself wake up..

this was all with the return flow blocked off and it was making back pressure. I am thinking that having the flow going in blocked off could have symptoms different but just as dangerous because the brain is not getting enough blood.

if the ligament is enlarged, I don't see why that couldn't cause similar restrictions if the placement is in a bad place. there is not much room in there and if everything is not the size it was meant to be or in a place it is not supposed to be in, it is going to cause problems.

these things are nothing to fool around with.

15

I just can't believe your description of hovering over the bed and yelling at yourself; I"VE HAD THE SAME EXACT "DREAM STATE" I'd done some research and had put this off to an "out of body experience" and feeling it was connected to my low BP (I have scads of other health issues). I'd also "dreamed" that I would give myself CPR and when I did wake up, I thought I'd have my fists against my chest but really never have. I had even reached out in this dream state to try to pull my body back, and once made hubby stay awake to see what it was I did in this state; he said I go stiff as a board and have extrememly shallow breathing. I often "dream taht I am dreaming" that is, I am aware in the dream that it IS a DREAM, if that makes any sense. A sleep study revealed 57 spontaneous awakenings the doc (pulmonologist) did not want to pursue.

Right down to the Thumping, but my head DID explode in a way. I'd always dreamed soemone was playing baseball, I'd hear the crack of the bat INSIDE MY HEAD< NOT IN MY EARS< as it met the ball, I'd tehn see a bright light, as if someone were shinign a flashlight right up against eyeballs. I did sufefr myoclonus for eyars and had taken Klonopin, but got rid of almost all drugs a few eyrs back when tehy weren't helping. I do take pain meds as I have Sjogren's induced pancreatitis.

BUT OMG OMG OMG... I just cannot get over your description, so eerily similar to my own. I will bet you a cup of tea that no one believed your desriptions, unless this is the first time you are relating this.

I am also posting a pic of a PT ball I use at the occipital area and just normal laying down pressure at back of head either with pillow under it or not, I get the BEST bloodflow I ever had, I'd venture to say 80-90% of my pain and burning (neuropathy produces burning and this alleviates it bigtime)

I don't think it should be fooled around with either, but Cognetti felt I did not have it, did you explain thsi phenomenon to him? I see Facial pain mgmt dr Stiles at JEff Tom, I am definitely showing him this post, I am in total amazement! Then I am getting Stiles to call not only Cognetti but Evans as well, whether I need an MVD or an Eagles procedure, tehy better do something, because doing NOTHING borders on the criminal!

Cathy

PS: I affectionately call this PT ball, "MY BOOBS" My cousin's a PT and I've asked him if he can find these and no luck I've been on the prowl to find another pair, I can't seem to locate even on web searches, I bought it from my PT in NJ and she can't remeber what company she orered it from. If anyone ever sees one, I will pay a bounty to get another pair. They run about $15-$20

Thanks!

518-IMG_0350.jpg2592Ă—1936 1.33 MB



trooper dude said:

hey, its me again, still following this thread.

your questions about distance for treatment and blood flow

distance, I live in southern Illinois, we are told some of the "best" doctors are in our area, closest being in stlouis.

went to them and only got the runaround.

I ended up making a total of 3 flights to philly to see doctor cognetti, it was expensive but after about 13 years of chasing these symptoms and being miserable,, the cost and time was well worth it to have someone that did not blow me off or keep telling me to come back in a month to see if there was any improvement knowing full well that if it had not gotten any better over the last 13 years, it would not get better by the next month. all it did with those doctors was make a few car payments for them...

blood flow issues,

what I had was the full blown elongated/enlarged styloid on both sides. the CT with contrast showed that the juggler was constricted 50%+ on both sides. my blood pressure was up, head constantly pounding and if I did anything that made the blood pump harder, exercise, picking up heavy objects etc, the pounding would get worse. the scans said that the flow was restricted that much when in a neutral/stable position. I found that my near black out spells were most likely caused by the restrictions. I could turn my head back and right and I would start to go into black out mode. at one point, I was asleep and my head got in a bad position (back and right). I remember that it seemed like I was floating over the bed yelling at myself, I was saying "wake up, wake up now or you are going to die" when I did wake up, my head felt like it was about to explode. I could hear the blood going SWOOSH, SWOOSH. I finally got my head put back to straight ahead and the pressure regulated but the headache was terrible for quite some time. I did not get any doctors to go on record to confirm but I think I was just a couple minutes from stroking out if I had not made myself wake up..

this was all with the return flow blocked off and it was making back pressure. I am thinking that having the flow going in blocked off could have symptoms different but just as dangerous because the brain is not getting enough blood.

if the ligament is enlarged, I don't see why that couldn't cause similar restrictions if the placement is in a bad place. there is not much room in there and if everything is not the size it was meant to be or in a place it is not supposed to be in, it is going to cause problems.

these things are nothing to fool around with.

16

I forgot to ask, do you have any dental issues? I was told I had "calcified roots," despite great dental care as kid & adult, I lost all my teeth due to Sjogren's and felt that maybe the "scaffolding" of having teeth within the gums plays a part, in that atrophy ( I also have SS) pulls the tissues "back" , there seems to be nothing to hold the mouth open, at its' normal height, as it were; I also feel there is no room for my tongue with the resorbption SP? of the jaw. I am 18 years edentulous (w/out teeth) so it's not a new phenomenon. ALso the veins/artereis in back of head are beginning to feel infected ( I have blisters in thraot right now-might be my lupus/ss/who knows) There is one particular way I turn the head that makes me feel like I will vomit, it goes staright for that exact vein/artery. this is all new to me this week. A friend of mine chastised me for laying on the ball, she feels I might break a clot off and stroke too! ( I am a former smoker) quit 10+ yrs ago.

With the calcified roots, oral surgeons had a heck of a time trying to do root canals, one tooth had to be done twice, I said NO DEAL, take the last two teeth out (they were the eye teeth on lower, they had done an apicoectomy-going thru the jaw to get to the tooth root instead of thru the tooth as it had a cap on it-looked like a hilt of a sword!) the denture then snaps in like a LEGO! see pic

So now I am wondering if I'd had Eagels all along and THAT is the true cause of My SJOGREn's because I do NOT make the AB's that SJs patients have nor does my parotid gland test positive for SJs, yet I make no saliva, no tears (tears ducts have been cauterized painfully so) and I have made some salivary stones in the past.

I can't wait for tom's appt!

516-overdentureattachmentAxiaalADJ.jpg (20.7 KB)
17

no real dental issues, all 4 wisdom teeth out back in 1980 or 81. a few fillings.

I did have "transient" tooth and jaw pain. it felt like a bad cavity but the pain would not stay in one place. it moved around from top to bottom, side to side. of course, the doctors told me to get to the dentist and have it checked. they checked and found nothing wrong with the teeth.

amazing, post op, I have not had even a twitch in any of the teeth since I had my "fangs" removed.

I had to name them fangs, I worked the night shift for the last 24 years, I finally decided to take the move to day shift, had to have the fangs removed since I was not on nights any more. that was a hit with the office staff in philly.

for your "boobs" I have never seen any of those for sale, but I made something very similar with a sock and tennis balls. lay on the floor and put them between the floor and the back of my head.

that is something else that the doctors cant figure out with the symptoms. the back of my head (occipital ) was sore all the time. post op, right side, it was really sore for about a week. then the sore went away and it has not hurt since. thought it might be a coincidence until it happened again post op left side....

I was also having trouble with focus and pain with my left eye. my vision would change several times during the day. it was worse the worse the headache was, also when head was pounding bad, the pupil on the left was a lot larger than the right. all the docs said there was no way styloids could cause eye problems. all the controls for the eye are inside the skull and the styloid is outside the skull. I was sent to the eye doc, (same as the teeth) and the eye doc said he could not find anything wrong.

I put it down as being caused by the changes in the blood flow up there. they didn't really want to agree with that theory.

another strange thing, I have not had the issues with the eye post op. I did just get a new pair of glasses in march, pre op. those glasses were pretty much right on for the correction. post op, the prescription for the left eye is now off by about 3 levels. ( but styloids cant effect the eyes or vision)

dr c did put it out there when he said , there is a lot about this that we don't know about. he did want me to send him a follow up list of things that got better so he could properly document everything.

I am not sure what it was that convinced him to take me in, but I brought in paperwork from 13 years worth of doctor visits where I had been chasing the symptoms, a huge list of meds I had been given, list of doctors, pain management, you name it I took it and pretty much said that I was desperate for some kind of relief. I even told him that I had thought about how I could break them off and taking a razor knife and cutting the things out my self.

maybe more documents on what and where you have been would help your cause..

Cat said:

I forgot to ask, do you have any dental issues? I was told I had "calcified roots," despite great dental care as kid & adult, I lost all my teeth due to Sjogren's and felt that maybe the "scaffolding" of having teeth within the gums plays a part, in that atrophy ( I also have SS) pulls the tissues "back" , there seems to be nothing to hold the mouth open, at its' normal height, as it were; I also feel there is no room for my tongue with the resorbption SP? of the jaw. I am 18 years edentulous (w/out teeth) so it's not a new phenomenon. ALso the veins/artereis in back of head are beginning to feel infected ( I have blisters in thraot right now-might be my lupus/ss/who knows) There is one particular way I turn the head that makes me feel like I will vomit, it goes staright for that exact vein/artery. this is all new to me this week. A friend of mine chastised me for laying on the ball, she feels I might break a clot off and stroke too! ( I am a former smoker) quit 10+ yrs ago.

With the calcified roots, oral surgeons had a heck of a time trying to do root canals, one tooth had to be done twice, I said NO DEAL, take the last two teeth out (they were the eye teeth on lower, they had done an apicoectomy-going thru the jaw to get to the tooth root instead of thru the tooth as it had a cap on it-looked like a hilt of a sword!) the denture then snaps in like a LEGO! see pic

So now I am wondering if I'd had Eagels all along and THAT is the true cause of My SJOGREn's because I do NOT make the AB's that SJs patients have nor does my parotid gland test positive for SJs, yet I make no saliva, no tears (tears ducts have been cauterized painfully so) and I have made some salivary stones in the past.

I can't wait for tom's appt!

18

I just looked at these posts,,, looks like we keep making entries for a novel......

19

i want to thank you for this post trooper dude: as i am new to this and have been diagnosied with ES and have an appt with Cognetti Sept 5. You have answered some of my very imporatant questions that i have been looking for on this site. I saw one post from you a while ago and tried finding it again to ask. and here it was, love how things work out sometimes. this is my first post and not sure how to do. but enjoying the info for not feeling alone with this :)

trooper dude said:

the doc not looking at the scans and talking to you about them is a big red flag for me.

I had three tell me I did not have any such problem without looking at my scans or reports.

then when I insisted that they take a look, they pretty much went into "lets humor this guy so he will leave" mode.

they went into the next room, and I could hear them say, "that is the worst I have ever seen"

after finally looking at the picts, each one said that it was too involved for them and sent me to the next and we did the same dance again 2 more times until I found dr cognetti.

his suggestion of doing interoral and "shaving" some off, not sure about that. from what I have read on this site, everyone that has had partial removal has had little or no relief.

curious how he would work on the hyoid from the inside roof of the mouth too.

the one I had on the right side had grown down and was attaching to the hyoid. caused lots of weird stuff. cough, gag, restriction when swallowing. it also had caused the spit gland under the jaw line to swell up and I felt like I was drowning most of the time because the gland was over stimulated or something.

dr cognetti went in through the neck and worked on it, he removed the styloid, and did something to the hyoid and gland.

the right side was done on may 31, 2013 , the left on july 8. I noticed improvement as soon as they woke me up. only problem was doc insisted on doing two surgeries. but it was well worth it.

keep checking older posts on here, there are several doctors mentioned with good results. I cant say enough good about doctor cognetti and his team. he listened and gave feedback, that is key to any doctor visit. I would not put much stock in one that would not even go over the scans with you. (been there, done that, for about 13 years)

something else that impressed me about dr cognetti, one of the first things that he said to me was, " I want to let you know that I am not an expert in eagle syndrome, this is so uncommon and there is so little known about it, there is not really anyone that can call themselves experts with eagles" that meant a lot to me, he was not going to toot his own horn and let me know what I needed to know up front.

bottom line, don't give up, keep looking until you find someone you can get straight answers from and feel comfortable with

20

Cat,

The red physical therapy device you mention is called a "still point inducer" and it is used in craniosacral therapy. You can google it by that name and by the product in a variety of places. I've had one of these for years, but never thought about how it might help my Eagle's symptoms. Brilliant!

Kathy (aka WillisWay)

Cat said:

I just can't believe your description of hovering over the bed and yelling at yourself; I"VE HAD THE SAME EXACT "DREAM STATE" I'd done some research and had put this off to an "out of body experience" and feeling it was connected to my low BP (I have scads of other health issues). I'd also "dreamed" that I would give myself CPR and when I did wake up, I thought I'd have my fists against my chest but really never have. I had even reached out in this dream state to try to pull my body back, and once made hubby stay awake to see what it was I did in this state; he said I go stiff as a board and have extrememly shallow breathing. I often "dream taht I am dreaming" that is, I am aware in the dream that it IS a DREAM, if that makes any sense. A sleep study revealed 57 spontaneous awakenings the doc (pulmonologist) did not want to pursue.

Right down to the Thumping, but my head DID explode in a way. I'd always dreamed soemone was playing baseball, I'd hear the crack of the bat INSIDE MY HEAD< NOT IN MY EARS< as it met the ball, I'd tehn see a bright light, as if someone were shinign a flashlight right up against eyeballs. I did sufefr myoclonus for eyars and had taken Klonopin, but got rid of almost all drugs a few eyrs back when tehy weren't helping. I do take pain meds as I have Sjogren's induced pancreatitis.

BUT OMG OMG OMG... I just cannot get over your description, so eerily similar to my own. I will bet you a cup of tea that no one believed your desriptions, unless this is the first time you are relating this.

I am also posting a pic of a PT ball I use at the occipital area and just normal laying down pressure at back of head either with pillow under it or not, I get the BEST bloodflow I ever had, I'd venture to say 80-90% of my pain and burning (neuropathy produces burning and this alleviates it bigtime)

I don't think it should be fooled around with either, but Cognetti felt I did not have it, did you explain thsi phenomenon to him? I see Facial pain mgmt dr Stiles at JEff Tom, I am definitely showing him this post, I am in total amazement! Then I am getting Stiles to call not only Cognetti but Evans as well, whether I need an MVD or an Eagles procedure, tehy better do something, because doing NOTHING borders on the criminal!

Cathy

PS: I affectionately call this PT ball, "MY BOOBS" My cousin's a PT and I've asked him if he can find these and no luck I've been on the prowl to find another pair, I can't seem to locate even on web searches, I bought it from my PT in NJ and she can't remeber what company she orered it from. If anyone ever sees one, I will pay a bounty to get another pair. They run about $15-$20

Thanks!

518-IMG_0350.jpg2592Ă—1936 1.33 MB



trooper dude said:

hey, its me again, still following this thread.

your questions about distance for treatment and blood flow

distance, I live in southern Illinois, we are told some of the "best" doctors are in our area, closest being in stlouis.

went to them and only got the runaround.

I ended up making a total of 3 flights to philly to see doctor cognetti, it was expensive but after about 13 years of chasing these symptoms and being miserable,, the cost and time was well worth it to have someone that did not blow me off or keep telling me to come back in a month to see if there was any improvement knowing full well that if it had not gotten any better over the last 13 years, it would not get better by the next month. all it did with those doctors was make a few car payments for them...

blood flow issues,

what I had was the full blown elongated/enlarged styloid on both sides. the CT with contrast showed that the juggler was constricted 50%+ on both sides. my blood pressure was up, head constantly pounding and if I did anything that made the blood pump harder, exercise, picking up heavy objects etc, the pounding would get worse. the scans said that the flow was restricted that much when in a neutral/stable position. I found that my near black out spells were most likely caused by the restrictions. I could turn my head back and right and I would start to go into black out mode. at one point, I was asleep and my head got in a bad position (back and right). I remember that it seemed like I was floating over the bed yelling at myself, I was saying "wake up, wake up now or you are going to die" when I did wake up, my head felt like it was about to explode. I could hear the blood going SWOOSH, SWOOSH. I finally got my head put back to straight ahead and the pressure regulated but the headache was terrible for quite some time. I did not get any doctors to go on record to confirm but I think I was just a couple minutes from stroking out if I had not made myself wake up..

this was all with the return flow blocked off and it was making back pressure. I am thinking that having the flow going in blocked off could have symptoms different but just as dangerous because the brain is not getting enough blood.

if the ligament is enlarged, I don't see why that couldn't cause similar restrictions if the placement is in a bad place. there is not much room in there and if everything is not the size it was meant to be or in a place it is not supposed to be in, it is going to cause problems.

these things are nothing to fool around with.