Hi all, I have been suffering for over 10 years following a near death experience from a melon-sized neck abscess(drained in surgery, April 2002).
Last Fall, in a last ditch effort to dive into my pain for the sake of release/healing, I began doing almost daily intra-oral massage, slowly being able to massage deeper and farther into my throat pain. First came the stones - I believe both tonsilloliths and sialoliths… these still come out intermittently. Just last week, I was palpating my right palatine tonsil(trying so hard not to gag) and found a hard round bone. WHAT IS THIS HARD BONE IN MY THROAT THAT FEELS CENTRAL TO THIS PAIN?
I became obsessed with research and now that I have had some time, my sleuth found Eagle’s Syndrome and I feel some relief. Finally! … something that consistently describes my symptoms.
It has been a long time since I have been to an MD. I had been on a vicious treadmill a ways back being prescribed antibiotics repetitively when I NEVER once had strep throat, so I took my healing on as my own.
Now, I feel that I need to see an Eagle’s Syndrome specialist as soon as I can. My pain is bad EVERYDAY, and a I feel to be a very likely candidate for the surgery.
I live in California and I am willing to travel to see a specialist. Any comments, questions, or recommendations are welcome. Thank you for having me here!
Emma has posted a spreadsheet of doctors that members have suggested. I'm sure you can locate it on this site. One of the top docs is in California, Dr. Samji. He has done several successful surgeries from what I've read here.
I am sorry you have had such a struggle and I hope you are able to get some relief!!
Jayde - A physician with experience with ES and with the surgical remedy is your gold standard. When I spoke to Dr. Hussein Samji last week he said he has now done over 50 ES surgeries. He is Stanford, Harvard, and Dartmouth educated and currently practices with Camino ENT in San Jose California. Best of luck to you. In what part of California do you live?
I called Dr. Samji’s office today, and he agreed to take me on as a new patient. I see him on June 19th. It will be a 7 hour drive for me, and it is WELL worth it to me to be able to talk to a ES experienced doctor. I am already pleased with the friendliness of the receptionist, and I am relieved with Dr.Samji’s willingness to see me based off of my self diagnosis.
Just as an FYI - Eagle’s Syndrome has 4 diagnostic criteria:
(1) clinical manifestations (symptoms you describe)
(2) digital palpation of the styloid process in the tonsillar fossa (you found it yourself)
(3) radiological findings (3D CT Scan with radiologist's measurement of styloid processes) so he'll probably order this - recommend you get a copy of the disk for yourself too from the radiology dept that does it, and
(4) lidocaine infiltration test.
During the lidocaine infiltration test, lidocaine anesthetic is injected where the styloid process is palpable in the tonsillar fossa - positive for ES if symptoms are relieved.
I have also had neural therapy performed by a prolotherapy doctor. He injected procaine into my tonsils ~ It was not lidocaine exactly, but my symptoms were temporarily relieved… so I can practically check number 4 off for myself as well.
All I need is my 3D CT Scan, which Dr. Samji said he would get me set up for after our meeting later this month.
I am more than ready !!!
His office told me it is rare for somebody to just “know” about this, but everything I describe and point out as significant qualify as clear enough indicators that they are excited to work with me. I am excited to work with them as well.
Thank You so much for the lead and for the support. xoxo Jayde
Jayde, just make sure NTO to have any MRI's w/contrast as it builds up in the body, (search this entire site for all my posts on MRI contrast) also were any of those antibiotics from the Fluoroquinolone class? they can affect tendons all over body NOT just Achilles! Cat
Cat, Thank You very much for the tips, I will look into the MRI contrast stuff. I can certainly learn a lot more. I will also look into the antibiotics I was given years back to study more. I appreciate the leads, thanks again.
ang, Thank You for the referral ~ I am in with Dr. Samji right now. I think this is going to be it for me as he is an ES specialist, but of course I do not know yet, and it is always great to have another name for a doctor who understands and is not too far away. Thank You !!!
Hi everyone, I finally have some update information. I had a neck CT(no contrast) ordered by Samji on 6/20. My results are positive for Eagles. My styloids are 36mm on the right and 34mm on the left.
Samji was initially skeptical of my story and told me that all my tonsil stones/salivary stones are NOT Eagles related.
However, upon examination he was able to palpate my styloid that is jutting into my throat, so he changed his perspective to say that I may very well have Eagles ~ which the test the next day confirmed.
I am a member of a group of patients who believe we have been hared via Gadolinium contrast who've developed a "Systemic fibrosis/ sclerosis" no one will give us the time of day so much so that a recent visit of mine to a toxicologist who said, "come to grips with what has happened to you, you will NEVER PROVE its' from Gadolinium" is akin to me pointing to a rapist telling them "he raped me" and the docs NOT WANTING TO DO A RAPE KIT! (sorry if this may offend, but I am very sick from this developing a slew of issues from pancreatitis, to SJogren's two Eagles' (mine was removed on left, not so long but calcified so much so, Cognetti couldn't break it off with his fingers had to use a tool! along with thyroid cancer) will post about it some other time still healing, severe swallowing issues from the placement of tools/stretching of surgical site during surgery, sent home on feeding tube, with a tongue that faces West! two months I am post op right now still swallowing issues... below is the story of first GAD case, at $5 mil thats a lot of dough for each and very person think MESOLTHELIOMA FUND along those lines, yet of doctors REFUSE to diagnose us? what can we all d?! HIRE ONE EXPERT!
A federal jury in Ohio has awarded $5 million in the first case to go to trial in the multidistrict litigationinvolving patients who claim injury from the body scan contrast agent gadolinium. The jury found that GE Healthcare failed to provide adequate warnings of the health risk posed to those with impaired kidney function from Omniscan. As we have reported, the GE product is a gadolinium-based contrast dye used in MRIs and other imaging scans. The plaintiff in the case, Paul Decker, contracted a debilitating skin disease — nephrogenic systemic fibrosis (NSF) — as a result of being injected with Omniscan for a magnetic resonance angiogram in 2005. At the time, Decker was also undergoing dialysis for end-stage kidney disease.
Radiology. 2014 Mar;270(3):834-41. doi: 10.1148/radiol.13131669. Epub 2013 Dec 7.
High signal intensity in the dentate nucleus and globus pallidus on unenhanced T1-weighted MR images: relationship with increasing cumulative dose of a gadolinium-based contrast material.
1From the Department of Diagnostic Radiology, Hyogo Cancer Center, Akashi, Hyogo, Japan (T.K., H.K., D.T.); Department of Radiology, Kinki University Faculty of Medicine, Osakasayama, Osaka, Japan (K.I.); and Department of Radiology, Kobe University Graduate School of Medicine, Kobe, Hyogo, Japan (K.K.).
Have you thought about removing your tonsils? I had those stones too! after I had two syloid surgeries I had my tonsils and it totally helped! then had my hyoid done and nothing recent.
Jayde said:
Hi everyone, I finally have some update information. I had a neck CT(no contrast) ordered by Samji on 6/20. My results are positive for Eagles. My styloids are 36mm on the right and 34mm on the left.
Samji was initially skeptical of my story and told me that all my tonsil stones/salivary stones are NOT Eagles related.
However, upon examination he was able to palpate my styloid that is jutting into my throat, so he changed his perspective to say that I may very well have Eagles ~ which the test the next day confirmed.
Cat, Thank You very much for the tips, I will look into the MRI contrast stuff. I can certainly learn a lot more. I will also look into the antibiotics I was given years back to study more. I appreciate the leads, thanks again.
ang, Thank You for the referral ~ I am in with Dr. Samji right now. I think this is going to be it for me as he is an ES specialist, but of course I do not know yet, and it is always great to have another name for a doctor who understands and is not too far away. Thank You !!!
How do you know you have this? I've had many MRI's with contrast and now have issues? Cat said:
I am a member of a group of patients who believe we have been hared via Gadolinium contrast who've developed a "Systemic fibrosis/ sclerosis" no one will give us the time of day so much so that a recent visit of mine to a toxicologist who said, "come to grips with what has happened to you, you will NEVER PROVE its' from Gadolinium" is akin to me pointing to a rapist telling them "he raped me" and the docs NOT WANTING TO DO A RAPE KIT! (sorry if this may offend, but I am very sick from this developing a slew of issues from pancreatitis, to SJogren's two Eagles' (mine was removed on left, not so long but calcified so much so, Cognetti couldn't break it off with his fingers had to use a tool! along with thyroid cancer) will post about it some other time still healing, severe swallowing issues from the placement of tools/stretching of surgical site during surgery, sent home on feeding tube, with a tongue that faces West! two months I am post op right now still swallowing issues... below is the story of first GAD case, at $5 mil thats a lot of dough for each and very person think MESOLTHELIOMA FUND along those lines, yet of doctors REFUSE to diagnose us? what can we all d?! HIRE ONE EXPERT!
A federal jury in Ohio has awarded $5 million in the first case to go to trial in the multidistrict litigationinvolving patients who claim injury from the body scan contrast agent gadolinium. The jury found that GE Healthcare failed to provide adequate warnings of the health risk posed to those with impaired kidney function from Omniscan. As we have reported, the GE product is a gadolinium-based contrast dye used in MRIs and other imaging scans. The plaintiff in the case, Paul Decker, contracted a debilitating skin disease — nephrogenic systemic fibrosis (NSF) — as a result of being injected with Omniscan for a magnetic resonance angiogram in 2005. At the time, Decker was also undergoing dialysis for end-stage kidney disease.
Radiology. 2014 Mar;270(3):834-41. doi: 10.1148/radiol.13131669. Epub 2013 Dec 7.
High signal intensity in the dentate nucleus and globus pallidus on unenhanced T1-weighted MR images: relationship with increasing cumulative dose of a gadolinium-based contrast material.
1From the Department of Diagnostic Radiology, Hyogo Cancer Center, Akashi, Hyogo, Japan (T.K., H.K., D.T.); Department of Radiology, Kinki University Faculty of Medicine, Osakasayama, Osaka, Japan (K.I.); and Department of Radiology, Kobe University Graduate School of Medicine, Kobe, Hyogo, Japan (K.K.).
ang: have doc order tests for send outs to draw at hospital or lab having ability to bill with Mayo (some don't) do NTO let the doc tell you that you are barking UP the wrong tree, you DONT LOOK LIKE YOU HAVE NSF or anything of that nature, if they find high GAD then they do biopsies, I've had 9 and proved GADOLINIUMM in two samples, proved "focal dermal fibrosis and focal dermal fibrosis with increased mucin" in two, I have yellowing in left eye (scleral yellowing is a sign in whites of eyes)
the MROE people who get tested, the MORE we have to go BACK at the fad and say, "Looky here, CAUSE & EFFECT!"
then there is POWER IN NUMBERS, there can't be just 200-300 cases and those oNLY In people having CKD (Chronic Kidney DiseaSES)
they PUT this crap into our bodies, they can certainly ID it and it's sequelae IMO! then deal with the consequences, we ARE!
How do you know you have this? I've had many MRI's with contrast and now have issues? Cat said:
I am a member of a group of patients who believe we have been hared via Gadolinium contrast who've developed a "Systemic fibrosis/ sclerosis" no one will give us the time of day so much so that a recent visit of mine to a toxicologist who said, "come to grips with what has happened to you, you will NEVER PROVE its' from Gadolinium" is akin to me pointing to a rapist telling them "he raped me" and the docs NOT WANTING TO DO A RAPE KIT! (sorry if this may offend, but I am very sick from this developing a slew of issues from pancreatitis, to SJogren's two Eagles' (mine was removed on left, not so long but calcified so much so, Cognetti couldn't break it off with his fingers had to use a tool! along with thyroid cancer) will post about it some other time still healing, severe swallowing issues from the placement of tools/stretching of surgical site during surgery, sent home on feeding tube, with a tongue that faces West! two months I am post op right now still swallowing issues... below is the story of first GAD case, at $5 mil thats a lot of dough for each and very person think MESOLTHELIOMA FUND along those lines, yet of doctors REFUSE to diagnose us? what can we all d?! HIRE ONE EXPERT!
A federal jury in Ohio has awarded $5 million in the first case to go to trial in the multidistrict litigationinvolving patients who claim injury from the body scan contrast agent gadolinium. The jury found that GE Healthcare failed to provide adequate warnings of the health risk posed to those with impaired kidney function from Omniscan. As we have reported, the GE product is a gadolinium-based contrast dye used in MRIs and other imaging scans. The plaintiff in the case, Paul Decker, contracted a debilitating skin disease — nephrogenic systemic fibrosis (NSF) — as a result of being injected with Omniscan for a magnetic resonance angiogram in 2005. At the time, Decker was also undergoing dialysis for end-stage kidney disease.
Radiology. 2014 Mar;270(3):834-41. doi: 10.1148/radiol.13131669. Epub 2013 Dec 7.
High signal intensity in the dentate nucleus and globus pallidus on unenhanced T1-weighted MR images: relationship with increasing cumulative dose of a gadolinium-based contrast material.
1From the Department of Diagnostic Radiology, Hyogo Cancer Center, Akashi, Hyogo, Japan (T.K., H.K., D.T.); Department of Radiology, Kinki University Faculty of Medicine, Osakasayama, Osaka, Japan (K.I.); and Department of Radiology, Kobe University Graduate School of Medicine, Kobe, Hyogo, Japan (K.K.).
Dr. Samji is a regular ENT ~ who also does surgeries. He seems to be an Eagles expert(50+ ES surgeries to date) although he treats a lot more that just Eagles. I used the term specialist wrong, but if there is a “specialist” anywhere out there for this condition, he seems to be a likely candidate.
On the Camino ENT website, “Eagle Syndrome” is on the list of their “Conditions treated.” I enjoyed visiting this office - they take ES very seriously. Even the doctor assistants are well-versed in Eagles. This is remarkable to me ~ a whole office of people who on some level “get it.”
Even in this environment, I was met by the doctor with initial skepticism about my self-diagnosis, which was really hard for me to take. I felt that momentary empathy was missing, but really, I just think the doc viewed the complexity of my case with compassion, and was not sure if he could help me. Once he felt my right styloid, it all changed. I started crying some… I am in so much pain and this journey has been SO LONG, that I was about to lose it if I do not get some help !!!
I have no idea how I still have my tonsils. It is a freaking miracle. If having my styloids removed does not resolve my issue with stones, I will probably seek out a tonsillectomy.
Thanks for the encouragement !!!
ang said:
He is an ES specialist? Does he only work on ES?
Jayde said:
Cat, Thank You very much for the tips, I will look into the MRI contrast stuff. I can certainly learn a lot more. I will also look into the antibiotics I was given years back to study more. I appreciate the leads, thanks again.
ang, Thank You for the referral ~ I am in with Dr. Samji right now. I think this is going to be it for me as he is an ES specialist, but of course I do not know yet, and it is always great to have another name for a doctor who understands and is not too far away. Thank You !!!
Thank you so much for sharing. I would love to hear more about you and your painful and heartbreaking journey with all of this. I read your story and I felt so sick inside. I feel like our bodies are sacred and when they are abused by big pharma and poor medical practice, I feel enraged.
I am going to study more about gadolinium, and I have some self-research to do to keep me busy.
I can’t believe Dr. Cognetti had to use a tool to break your poor styloid. OMG !!! I am sad to hear how hard this surgery/recovery is being for you… my heart goes out to You <3
Cat said:
I am a member of a group of patients who believe we have been hared via Gadolinium contrast who've developed a "Systemic fibrosis/ sclerosis" no one will give us the time of day so much so that a recent visit of mine to a toxicologist who said, "come to grips with what has happened to you, you will NEVER PROVE its' from Gadolinium" is akin to me pointing to a rapist telling them "he raped me" and the docs NOT WANTING TO DO A RAPE KIT! (sorry if this may offend, but I am very sick from this developing a slew of issues from pancreatitis, to SJogren's two Eagles' (mine was removed on left, not so long but calcified so much so, Cognetti couldn't break it off with his fingers had to use a tool! along with thyroid cancer) will post about it some other time still healing, severe swallowing issues from the placement of tools/stretching of surgical site during surgery, sent home on feeding tube, with a tongue that faces West! two months I am post op right now still swallowing issues... below is the story of first GAD case, at $5 mil thats a lot of dough for each and very person think MESOLTHELIOMA FUND along those lines, yet of doctors REFUSE to diagnose us? what can we all d?! HIRE ONE EXPERT!
A federal jury in Ohio has awarded $5 million in the first case to go to trial in the multidistrict litigationinvolving patients who claim injury from the body scan contrast agent gadolinium. The jury found that GE Healthcare failed to provide adequate warnings of the health risk posed to those with impaired kidney function from Omniscan. As we have reported, the GE product is a gadolinium-based contrast dye used in MRIs and other imaging scans. The plaintiff in the case, Paul Decker, contracted a debilitating skin disease — nephrogenic systemic fibrosis (NSF) — as a result of being injected with Omniscan for a magnetic resonance angiogram in 2005. At the time, Decker was also undergoing dialysis for end-stage kidney disease.
Radiology. 2014 Mar;270(3):834-41. doi: 10.1148/radiol.13131669. Epub 2013 Dec 7.
High signal intensity in the dentate nucleus and globus pallidus on unenhanced T1-weighted MR images: relationship with increasing cumulative dose of a gadolinium-based contrast material.
1From the Department of Diagnostic Radiology, Hyogo Cancer Center, Akashi, Hyogo, Japan (T.K., H.K., D.T.); Department of Radiology, Kinki University Faculty of Medicine, Osakasayama, Osaka, Japan (K.I.); and Department of Radiology, Kobe University Graduate School of Medicine, Kobe, Hyogo, Japan (K.K.).
My 1st surgery is scheduled for August 11th. It is official.
I had resistance to scheduling this surgery because I am broke, uninsured, and dependent on my boyfriend to help me with this. I feel basically worthless. So much money has been “sunk” into me and here I am a 32 year old with no prospects. I have been suicidal since I was 5. I get scared when I think about anything but a perfect result with this surgery because my life as it is I can’t continue… I just do not know how I will keep it all going.
For now, I am racking my brain to figure out how to open myself up to change… to believe that there is something more to my life/my being than PAIN.
My current picture was actually 7 years ago. But i'm having a lot of stomach issues and i was wondering if it was toxins from so much radiation etc... my hormones are extremely low so they are putting my on dhea etc etc... what symptoms were you having?
Cat said:
ang: have doc order tests for send outs to draw at hospital or lab having ability to bill with Mayo (some don't) do NTO let the doc tell you that you are barking UP the wrong tree, you DONT LOOK LIKE YOU HAVE NSF or anything of that nature, if they find high GAD then they do biopsies, I've had 9 and proved GADOLINIUMM in two samples, proved "focal dermal fibrosis and focal dermal fibrosis with increased mucin" in two, I have yellowing in left eye (scleral yellowing is a sign in whites of eyes)
the MROE people who get tested, the MORE we have to go BACK at the fad and say, "Looky here, CAUSE & EFFECT!"
then there is POWER IN NUMBERS, there can't be just 200-300 cases and those oNLY In people having CKD (Chronic Kidney DiseaSES)
they PUT this crap into our bodies, they can certainly ID it and it's sequelae IMO! then deal with the consequences, we ARE!
How do you know you have this? I've had many MRI's with contrast and now have issues? Cat said:
I am a member of a group of patients who believe we have been hared via Gadolinium contrast who've developed a "Systemic fibrosis/ sclerosis" no one will give us the time of day so much so that a recent visit of mine to a toxicologist who said, "come to grips with what has happened to you, you will NEVER PROVE its' from Gadolinium" is akin to me pointing to a rapist telling them "he raped me" and the docs NOT WANTING TO DO A RAPE KIT! (sorry if this may offend, but I am very sick from this developing a slew of issues from pancreatitis, to SJogren's two Eagles' (mine was removed on left, not so long but calcified so much so, Cognetti couldn't break it off with his fingers had to use a tool! along with thyroid cancer) will post about it some other time still healing, severe swallowing issues from the placement of tools/stretching of surgical site during surgery, sent home on feeding tube, with a tongue that faces West! two months I am post op right now still swallowing issues... below is the story of first GAD case, at $5 mil thats a lot of dough for each and very person think MESOLTHELIOMA FUND along those lines, yet of doctors REFUSE to diagnose us? what can we all d?! HIRE ONE EXPERT!
A federal jury in Ohio has awarded $5 million in the first case to go to trial in the multidistrict litigationinvolving patients who claim injury from the body scan contrast agent gadolinium. The jury found that GE Healthcare failed to provide adequate warnings of the health risk posed to those with impaired kidney function from Omniscan. As we have reported, the GE product is a gadolinium-based contrast dye used in MRIs and other imaging scans. The plaintiff in the case, Paul Decker, contracted a debilitating skin disease — nephrogenic systemic fibrosis (NSF) — as a result of being injected with Omniscan for a magnetic resonance angiogram in 2005. At the time, Decker was also undergoing dialysis for end-stage kidney disease.
Radiology. 2014 Mar;270(3):834-41. doi: 10.1148/radiol.13131669. Epub 2013 Dec 7.
High signal intensity in the dentate nucleus and globus pallidus on unenhanced T1-weighted MR images: relationship with increasing cumulative dose of a gadolinium-based contrast material.
1From the Department of Diagnostic Radiology, Hyogo Cancer Center, Akashi, Hyogo, Japan (T.K., H.K., D.T.); Department of Radiology, Kinki University Faculty of Medicine, Osakasayama, Osaka, Japan (K.I.); and Department of Radiology, Kobe University Graduate School of Medicine, Kobe, Hyogo, Japan (K.K.).
