So, I've probably said this more then once... but I've had three neck surgeries.... Just got a major reconstructive surgery on my arm... and now my winged scapula is irritating my ES... I'm having the WORST tension headaches... neck and shoulder spasms... I can't remember if this was how I felt when things acted up in 2004-2007... I was swallowing and food got stuck... Just a literal pain in the you know what... My ENT had me see a Endo Dr. to make sure it's not thyroid related because i'm losing my hair to top the icing on my cake..... well, I was sent for a CT STAT... So hopefully i'll get answers because living this way is not a life to live if you are suffering this bad.... I know others are worse etc... people will always be worse off but i'm a firm believer that when its YOUR body... and you are what YOU consider NORMAL and that's taken from you... then even people worse off you can't compare... because your living in the pain and suffering that people don't understand....
I'm just beyond upset... hurt... irritated... depressed etc,,,, need an outlet and if it's back.. I want the surgery... it helped me beyond belief.. I can't live this way....ANYMORE
I'm so sorry to hear of your ongoing discomfort, I understand. It's no fun and it really is hard for others to relate to (even the medical field) unless they've experienced it. I was put through every possible test for over a year, various doctors trying to pinpoint what the problem could be. After xrays, MRI, ultrasounds, swallowing tests, etc, etc…a new ENT suggested a CAT scan with contrast. I wanted to share with you that the Radiologist report said that all was clear, no sign of ES, or anything. My ENT looked at the same images and he was able to diagnose and show me the very obvious images of ES, right side, vascular implications. Doctors initially thought my issue was thyroid related as well because my hair is falling out on top too. ;-( Do your doctors believe that your hair loss is related to ES? Hang in there, I will hope you get the results that you need for optimal healing.
OMG, I can't believe you had to go through so much... I actually saw 8 ENTs before I was diagnosed by my dentist! He could see it through an xray... crazy they can but Dr.'s can't!?
I got that scan and I honestly do not like radiologist reports. I don't think they are accurate 90% of the time. I have called my ENT for three days with NO response... I can't go to ER because they have no idea what's wrong... and also I went to PT for my arm yesterday and they taped the heck out of my back... But I still have ear pain here and there, spasms in my neck, discomfort etc... My hair is falling out and they say "stress" but I honestly say this IS false because in the past 6.5 years I have had more pain and stress and honestly have adapted to "stress" so when they state this... it is very upsetting... and your right... no one understands our pain... Is your ENT saying your hairloss is from ES? thank you for replying and talking to me because I think my weight gain etc is all going back to ES.
two years ago I found my hyoid bone was 16mm calcified... now again.. I think it's acting up..
you know I was curious... have you ever taken dietary supplements? I swear that by taking trim spa and green tea it honestly caused all this to happen... I'm lost but annoyed and just want to know... if all this muscle spasm pain is not the ES... then what is happening...
So sorry to hear that you're suffering again after all the surgery you've had. Maybe the surgery on your arm's upset some nerves- it wouldn't be surprising if all you've been through has set off muscle spasms too? I hope you get some answers, and hang on to the fact that surgery has helped before, and doctors are looking into it all for you.
Dr. Milligan just personally called me, he said the report indicates my hyoid bone is extremely calcified on the right side. depending on where my pain is would indicate if thats causing problems. He requested to the films so he can double check everything and we can move forward accordingly. I want to know why my hyoid bone is calcifying..... deep into my tissues he said... He is calling me back after he does his rounds with his patients because I want to ask about the horrible spasms and pain in the right side.. it just feels somethings in the back of my throat and im guessing this is the end result...
HANG IN THERE I HAD A HORRIBLE PAST WEEK ALSO. SINCERELY LAID IN MY BED PRAYING TO DIE AFTER AN ENT AT CLEVELAND CLINIC DIAGNOSED EAGLES SYNDROME AFTER 10 years of constant pain, and in his next breath told me there is a surgery for this condition but I think we will try pain management first! I left his office crying and so fell into major depression over the fact that I finally had a dx after 10 years from a world class facility like Cleveland Clinic and they are not going to do a damn thing about it. After laying around feeling depressed about it I called University Hospital in Cleveland sAw an ENT there who looked over my cat scan and agreed with the Eagles syndrome dx but also explained and showed me on the scan that my styloid bone is not only elongated it is laterally deviated and definately needs to come out…that was Mon. 9/29… She asked that I give her one week for her to consult with her colleagues and a vascular surgeon…my next appt with her is in 4 days…saying lots of prayers and trying to keep my anxiety low which trust me I know after 10 years of this crap is hard…I used to work in a cancer center and always had such remorse and empathy for my cancer patients there and it am blessed and thankful to God that I do not have cancer but PAIN IS PAIN AND IT DEMANDS TO BE HEARD…no one should have to suffer especially if there is a solution. I wish you all the best don’t give up. You are your only advocate. I will keep you in my prayers.
I hope they do the surgery.... esp if it's causing you pain... research or talk to your dentist... maybe they can help... surgery was the ONLY thing that kept me sane... LITERALLY!!! Pain meds never ever worked for this kind of pain...
Gia said:
HANG IN THERE I HAD A HORRIBLE PAST WEEK ALSO. SINCERELY LAID IN MY BED PRAYING TO DIE AFTER AN ENT AT CLEVELAND CLINIC DIAGNOSED EAGLES SYNDROME AFTER 10 years of constant pain, and in his next breath told me there is a surgery for this condition but I think we will try pain management first! I left his office crying and so fell into major depression over the fact that I finally had a dx after 10 years from a world class facility like Cleveland Clinic and they are not going to do a damn thing about it. After laying around feeling depressed about it I called University Hospital in Cleveland sAw an ENT there who looked over my cat scan and agreed with the Eagles syndrome dx but also explained and showed me on the scan that my styloid bone is not only elongated it is laterally deviated and definately needs to come out...that was Mon. 9/29... She asked that I give her one week for her to consult with her colleagues and a vascular surgeon...my next appt with her is in 4 days....saying lots of prayers and trying to keep my anxiety low which trust me I know after 10 years of this crap is hard...I used to work in a cancer center and always had such remorse and empathy for my cancer patients there and it am blessed and thankful to God that I do not have cancer but PAIN IS PAIN AND IT DEMANDS TO BE HEARD....no one should have to suffer especially if there is a solution. I wish you all the best don't give up. You are your only advocate. I will keep you in my prayers.
I hope they do the surgery.... esp if it's causing you pain... research or talk to your dentist... maybe they can help... surgery was the ONLY thing that kept me sane... LITERALLY!!! Pain meds never ever worked for this kind of pain...
Gia said:
HANG IN THERE I HAD A HORRIBLE PAST WEEK ALSO. SINCERELY LAID IN MY BED PRAYING TO DIE AFTER AN ENT AT CLEVELAND CLINIC DIAGNOSED EAGLES SYNDROME AFTER 10 years of constant pain, and in his next breath told me there is a surgery for this condition but I think we will try pain management first! I left his office crying and so fell into major depression over the fact that I finally had a dx after 10 years from a world class facility like Cleveland Clinic and they are not going to do a damn thing about it. After laying around feeling depressed about it I called University Hospital in Cleveland sAw an ENT there who looked over my cat scan and agreed with the Eagles syndrome dx but also explained and showed me on the scan that my styloid bone is not only elongated it is laterally deviated and definately needs to come out...that was Mon. 9/29... She asked that I give her one week for her to consult with her colleagues and a vascular surgeon...my next appt with her is in 4 days....saying lots of prayers and trying to keep my anxiety low which trust me I know after 10 years of this crap is hard...I used to work in a cancer center and always had such remorse and empathy for my cancer patients there and it am blessed and thankful to God that I do not have cancer but PAIN IS PAIN AND IT DEMANDS TO BE HEARD....no one should have to suffer especially if there is a solution. I wish you all the best don't give up. You are your only advocate. I will keep you in my prayers.
Wow - I have hair loss too. Especially the last 5 years. My gyn, old gp, & new gp have ordered thyroid bloodwork each year for the past 3 years. It always comes back fine and that’s the end of the “hunt.”
thats interesting!!! tonight they said it's my ptsd... but I wonder. if its hormone related... what if the thyroids being affected by the calcium???? like the thyroids being pushed by the calcium buildup?
Heather B said:
Wow - I have hair loss too. Especially the last 5 years. My gyn, old gp, & new gp have ordered thyroid bloodwork each year for the past 3 years. It always comes back fine and that's the end of the "hunt."
That's a very interesting theory regarding thyroid/calcium/hair loss relationship. I've been trying to wrap my head around the possible causes of my hair loss which has taken place for 9 months now. I have had the ES symptoms for 13 months. I was wondering if it was related to the vascular component resulting in lack of adequate blood flow/circulation in the scalp. I have had every possible test (nutritional, autoimmune, dermatalogical, etc) to explain my hair loss and there is no medical explanation. After ruling out all of those possibilities, it boils down to either post stress/grieving or ES related. After reading that Ang and Heather both have hair loss, I wonder if it can be a result of ES. I wonder how many others experience hair loss?
Hi Ang, when did you have your arm reconstruction. I am here to tell you that I am suffering from a strained or torn muscle in my shoulder, scapula area and when the pain gets bad, my Eagles symptoms come back. I am guessing that the nerves that are in our neck and scapula area also are up in that intracranial sheath with all the big nerves and I am guessing that the nerves that have been affected by your surgery are temporarily causing the Eagles symptoms. At least that is what I hope is happening. I was thinking the other day that it will be a very painful recovery if I need surgery on my shoulder because I am almost 100% sure that the recovery from surgery will cause Eagles symptoms. Right now, I wear NSAID patches or Icy Hot patches on the upper posterior section of my shoulder near my scapula very close to my neck and that keeps muscle pain down and keeps the Eagles symptoms from coming back. I am guessing it is not Eagles, just like, acid reflux also causes me Eagles symptoms. I hope that once your arm has recovered and you can relax all those muscles and nerves that your symptoms will go away for good. I sure hope so because I am also thinking of myself and think that if you start feeling better then I have hope if I have shoulder surgery. Best wishes and tell me how long ago your surgery for shoulder, scapula was and keep us all posted. Hang in there, I hope you will see some light soon/
Hey all, calcium, hair loss etc could also be a symptom of high serum calcium in your blood'' Primary hyperparathroidism. Notice I did not say thyroid, I said parathyroid, I had that along with thyroid cancer and eagles. Could be a connection.
Still doctors are stubbornly not wanting to diagnose hyperparathyroidism either, you can check if you may have the inkling, but I hope you all only have the Eagles. I am cured of the thyroid cancer and the hyperparathyroidism, but I think that those two had some relationship to why I have Eagles and osteoporosis and there is a connection to hyperparathryoidism and osteoporosis, so we can see medical science still has a long way to go to connect the dots. Maybe our children and grandchildren will have better luck, I know I have had much better information than my parents.
My story is quite complicated... I had ES and had two surgeries... about 7 months later was hit by a truck as pedestrian... It paraylzed my left arm, (bracial plexopathy) and then my throat hurt and I had calcium deposits forming from my tonsils so in 2009 so I got them removed, HUGE relief and I am NEVER actually sick now.. But then I had all this weird "pain" or the pressure pulling etc... So in 2011 they went in shaved my hyoid.... I DID have my shoulder fractured along with shoulder dislocated, ribs all broke on left side etc... So moving forward I got this reconstructive surgery on my left arm two months ago... and now being able to move my arm a lil more then the past 6 years my shoulder blades HURT... I'm having the worst muscle spasms... I have a "winged" scapula but i'm limited with what i can do with my hand... But my neck feels tight... like my brain is being pulled... weird pressure... and almost like calcium or something in my throat again... I really don't know the answer.. I'm going to try going in this week to talk to my ENT... My pt actually taped my back and that helped so0o0o0o0 much and with out it my neck acts up...
I know my ENT says if you have surgery to make sure they have your head in a normal position. about a year ago my gal bladder was taken out and they didn't and my ears hurt so0o0 soooo bad... I'm so use to pain the it's hard to explain symptoms to ppl as you know i'm sure. How did your shoulder and scapula get hurt? that's all me on my left side... and with alll my nerve damage... and my right side being bigger then my left... its complicated
emma said:
Hi Ang, when did you have your arm reconstruction. I am here to tell you that I am suffering from a strained or torn muscle in my shoulder, scapula area and when the pain gets bad, my Eagles symptoms come back. I am guessing that the nerves that are in our neck and scapula area also are up in that intracranial sheath with all the big nerves and I am guessing that the nerves that have been affected by your surgery are temporarily causing the Eagles symptoms. At least that is what I hope is happening. I was thinking the other day that it will be a very painful recovery if I need surgery on my shoulder because I am almost 100% sure that the recovery from surgery will cause Eagles symptoms. Right now, I wear NSAID patches or Icy Hot patches on the upper posterior section of my shoulder near my scapula very close to my neck and that keeps muscle pain down and keeps the Eagles symptoms from coming back. I am guessing it is not Eagles, just like, acid reflux also causes me Eagles symptoms. I hope that once your arm has recovered and you can relax all those muscles and nerves that your symptoms will go away for good. I sure hope so because I am also thinking of myself and think that if you start feeling better then I have hope if I have shoulder surgery. Best wishes and tell me how long ago your surgery for shoulder, scapula was and keep us all posted. Hang in there, I hope you will see some light soon/
I wonder too! I asked my PCP again Friday and he said it's ptsd... but part of me wonders if the calcium is pulling or poking on our thyroids? It's embarrassing and painful to say the least... I've had all those tests too... and Anxiety they say.., it's bizarre, I've had ES for about 11yrs... and never had hairloss until recently
Laurie said:
That's a very interesting theory regarding thyroid/calcium/hair loss relationship. I've been trying to wrap my head around the possible causes of my hair loss which has taken place for 9 months now. I have had the ES symptoms for 13 months. I was wondering if it was related to the vascular component resulting in lack of adequate blood flow/circulation in the scalp. I have had every possible test (nutritional, autoimmune, dermatalogical, etc) to explain my hair loss and there is no medical explanation. After ruling out all of those possibilities, it boils down to either post stress/grieving or ES related. After reading that Ang and Heather both have hair loss, I wonder if it can be a result of ES. I wonder how many others experience hair loss?
I m starting to see things out of the corner of my eye like a flock of Crows ,I look and nothing there no ghost no Christ sweat print just what’s there but in corner vision seems like a flock scatters when I look but at light speed The birds ; )