Non surgical treatment, drs in NY and linked to other illnesses?

General
1

Hi,

My ent says I have Eagles syndrome (has not done CT) but he is not really wanting to treat it because I have some as unyet diagnosed inflammatory autoimmune disease, scoliosis, do not respond well to drugs and have had inflammatory reactions in surgery. I have small fiber neuropathy and my neurologist is going to try to get me IVIG but I don't think she will succeed.

I would like some conservative treatment. I have been in PT but that made it worse, maybe some special kind of PT?

Any suggestions are appreciated and best to all. Thanks

2

Removal of the foreign body. PT did make it worse as it poked the calcified styloid into my throat and ear parts. No drugs needed but your surgical medical issues should be considered but nothing works better than removal.

Is the ENT just guessing? or can he feel the styloid? I had lots of treatment-pills, PT, analysis, etc. No treat, remove!

Too many pain meds that made me dumb-I finally had to ask "is it my fault I want to die with a normal sized liver?" Stop the pharmaceutical experiment I had become.

Get CT or a Panorex-It is cheap, simple and was the best pics I every had. Find a Head and Neck surgeon to look into your special needs too.

No Treat, Remove.

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I agree with Shaw. Surgery is really the only option. You've got a bone (essentially) growing in your neck and hitting all kind of nerves and arteries etc. You've got to get it out.

4

Thanks for the advice, the thing is I am not sure what is causing what pain and how bad my eagles is. Can you guys tell me what your symptoms were or are? I am also stupid and damaging my organs from pain meds but I also have body wide neuropathy, although the facial and head neck shoulder pain is mostly what I take pills for. But from what I've read, surgery is awful and often doesn't work.

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5

I agree - surgery is the absolute best option. I have widespread body pain that we have been calling fibromyalgia and I also have unexplained tachycardia. I have had surgery on one side, and I am going to have the second side done soon. I feel much better after just one side, I can't wait for the second side. I am curious to see if the so called fibromyalgia and tachycardia resolve after the surgery.

6

Do the surge. I suffered for decades with 'minor' pain, until a forced intubation worsened my Eagle's. I also suffered from fibromyalgia, chronic inflammation, sensitivities to everything from chemicals to the sun to whatever was floating in the air along with food... my body was always on alert. No medicine ever 'cured' anything for me; if my body didn't do it on it's own, it didn't get done. My hair was falling out, nails were thin and brittle, etc., etc.

My body overreacts to injuries by healing too fast and too much around the damage.... attacking a metal rod in my foot thinking it was a foreign invader and building bone so the rod had to be cut out. Stitches which were supposed to dissolve were encapsulated, with pus forming and then pushed to the skin surface... I had some yucky moments.

During my surgery my tonsil was also removed (going thru there, should remove anyway), because it was highly infected and had some kind of tissue issue... Almost immediately I felt like a web of confusion was removed from my body. The problems I have now (just two months later) is damages which are permanent due to the fight by body had from the time I was born (1947) plus all the injuries. I think the tonsil was harboring bad stuff due to the chronic irritation from the Eagles. My left side had no problems.

I was born with numerous internal and external malformations, so everything was more complicated.

However, everything I ever brought up to my drs. has been proven to be real. Even tho for years I was typecast as a hypochondriac, I am now considered one tough person.

While living with all of this, I never was a sedentary person. I could not sit down for long, and always felt the need to be moving. Like my body was in a constant state of agitation, but it made me highly productive. It was only after I got older and my body was wearing down that the Eagles and SCDS began to really destroy me.

One of the things I really notice now is that I can actually relax physically. After the eagles surgery all I wanted to do was sleep and eat (no medication). Then as my I improved my strength improved leaps and bounds.

While I was getting worse, I felt like a fragile eggshell with nothing inside.

7

Thanks for all your help. I have been definitely diagnosed with several other illnesses and I am pretty non functional but I thought the eagles was a minor issue for me. I guess I should get a CT scan. I had my tonsils out when I was young.

Does anyone have a doctor in NYC? Is Eagles associated with other illnesses, which is what my ENT implied - he says it is part of my whole inflammatory illness.

I am not good at surgery. Looks like recovery is very hard.....

8

My recovery was not very difficult at all. When I woke up from surgery I could immediately tell that soooo much of that constant overwhelming pressure that is so hard to explain to the doctors was gone. I get the second side done soon. I am very curious to see how much of my body's overwhelming inflammation will be gone.

9

April----

Symptoms:

  • Bad Doctors
  • Burning ear pain-like a hot nail being shoved in my ear.
  • Ear infections from a blocked/restricted Eustachian tube which made my ear feel like I had water in it or just got off a plane.
  • Carotidynia-caused by the process pushing against Carotid Artery-look it up-it has its own group of symptoms.
  • Trouble swallowing
  • Foreign body feeling in back of throat
  • Burning and tenderness in area behind tonsils


  • april said:

Thanks for the advice, the thing is I am not sure what is causing what pain and how bad my eagles is. Can you guys tell me what your symptoms were or are? I am also stupid and damaging my organs from pain meds but I also have body wide neuropathy, although the facial and head neck shoulder pain is mostly what I take pills for. But from what I've read, surgery is awful and often doesn't work.

10

April I had more but the site truncated it.

Get the CT or a panorex-it was the best picture I had. In a CT you are at the mercy of the density of the ossification and the computer that generates the image. My CT showed my Styloid to be .9cm longer than the one on the right but when I was operated on, it was 3cm longer. A CT isn't as great as I was made to believe and even my surgeon was surprised at how long it turned out to be,

11


The symptom of vascular neck pain, known as carotidynia, refers to throbbing pain of the neck and face with tenderness of the carotid artery. This was caused by the styloid pressing against my carotid artery deforming it. I had this for 15 years.

I had ES on both sides but not at same time. 1989 symptoms on right side, operation in Nov 1990. 1997 symptoms on left side. Thought it would be dealt with fast as I already had it on right side. 2 failed surgeries in 2002 and 2003-then I gave up. But in 2011 I began to think how this would be for 20 more years and started to pursue surgery while still young-ish and able to heal better than at 70. And why give in to feckless doctors and be in pain for ever. It was successfully removed internally in 2013. (it took 15 years-and it is thought the nerve damage is permanent but much less with the process gone-the cost of the delay)

shaw said:

April I had more but the site truncated it.

Get the CT or a panorex-it was the best picture I had. In a CT you are at the mercy of the density of the ossification and the computer that generates the image. My CT showed my Styloid to be .9cm longer than the one on the right but when I was cut operated on it was 3cm longer. A CT isn't as great as I was made to believe and even my surgeon was surprised at how long it turned out to be,

12

Thank you so much for your response and I am so sorry for all you have suffered. I don't know if what I am experiencing is from Eagles or from my inflammatory/auto immune thing, and I have had other surgeries and I am not good at it. I love my ENT, he has felt my throat and I almost jump out of the chair and he said it's Eagles syndrome but we are not going to do anything. I have had lots of facial pain and head pain for a while and now I am having a LOT of pain on the right side of my neck and behind my ear and the pain seems to travel around. I also have neck and back pain and scoliosis. I guess I am going to have to go see if I can get him to order as scan. I think my former dentist might have taken panaromic pics, I am not sure. The thing is if I am going to treat this I need another doctor and I am afraid!! Who successfully operated on you? To me surgery is a very big deal and I am sorry you had to go through so much.

Thanks for everyone's help, would love the names of doctors.

13

I hate surgery but I needed to find the will to do it. living with this is no life. I got a lot of yes you have it and I don't feel comfortable doing it. no one every denied I had it-x-rays and CT's don't lie. I went with the first doctor who said we will have to remove it. risky but the first successful surgeon I had in 1990 removed my hyoid bone by mistake in 2002--so its luck, skill, phases of moon. it is a crap shoot depending on if dr is having good day. great doctors make great mistakes I've found. I'll send friend notice for dr names.

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April-

I will let you know something about the knowledge of Drs. regarding ES. If a Doctor puts his figure in right on the bone, he knows something about ES.

I've also had Doctors-ENT's mostly dig around with their fat fingers and couldn't feel a thing. I left those offices feeling more pain and the idea that they were going to remove it by pushing it through my head. Leave them immediately.

The 2 doctors I saw that knew a lot at UCLA and Cedars, reached in from behind with one gloved finger and just touched the tip of the process, they knew where it was and those were the ones I chose to work with.

I have neck pain from auto accidents but it is nothing like the constant ES pain and the neck pain is reduced by chiropractic, physical therapy, and other treatments. ES is only dealt with by cutting the process back to a 1cm length from the skull-the length it is supposed to be. That is my amateurish experiential doctor talking. I'm not a doctor but I became an ES expert from the past 25 years of trying to convince doctors to operate. It is bad to beg for surgery but I tried-it never worked. You just need to find one willing and with the smarts to do it.

I call this doctor hell and you might be in it and on a doctor hunt.

good luck hunting and know the good ones are out there.

15

Thanks, I am petrified and hoping that this pain will go away because I am having a flare up in my whole body. My ENT is wonderful, and has operated on me twice, but I know he won't do this surgery. Thanks for your help

16

April, I just wanted to tell you that most people are helped a lot from their surgeries and the recoveries generally aren't that bad - especially from an external surgery. My last two revision surgeries done externally by an experienced Eagles doctor, were a piece of cake. The only surgery I had that was painful was one done by a surgeon who had never done an Eagles surgery before.

17

Thank you, I have had several surgeries that didn't turn out so well. Would you mind sharing the name of your surgeon? I am glad you are feeling better.

18

Several of you have mentioned autoimmune disease, fibromyalgia other issues, so I will post this so you can possibly gain insight or confidence in your battle to better health. This has been my fight since probably 2005, but definitely since 2010, and I have found answers one by one. So hope it gives you some encouragement. I hope it doesn't bring anyone down, but doctors are so one sighted.

I have to say this because I had tachycardia and other weird problems and the three problems that I am going to mention are all related because they are related to calcium regulation or calcified ligaments. If you have Eagles, or fibromyalgia or heart palpitations or severe anxiety, bone pain, or kidney stones or a combination of the above. Make sure to have your calcium checked. and if it is consistently in the high normal range that is 10.0 or over in the US, you may also have a bad parathyroid gland causing hypercalcemia. Do not believe that it has to be above the normal for this to occur. By the time most doctors determine you have this you could be dead. Closely related to this is thyroid malfunction of any kind. My thyroid tests were normal, but I had a thyroid tumor cancerous, and I only found it because I had so many problems and my doc thought I was mentally ill. I found out about parathyroid disease and had a new doc test for it, bingo, but he also did an ultrasound and found a thyroid tumor. At the same time, I showed my ENT my lump in my throat that was causing pain like strept throat, Bingo again Eagles. Three diagnoses within a month. The feeling of something in the throat can be any of the above so do not put all your eggs into Eagles, but be aware of these relationships because more often than not fibromyalgia is not fibromyalgia, mental illness is not mental illness and these syndromes are related someway. All of the above, for me and I am feeling better than most of my life since dealing with all three. Good luck and don't be shy about studying your labs and checking them on the internet because these bone and calciium, heart, anxiety issues are all related. I am sure other neurological and neurological illnesses are also related. Our bodies need balance and when we do not have balance , we have a domino effect. So please be steady and keep on pushing on looking at whatever symptoms or group of symptoms might be related to what problems. We are in this together and WE ARE ALL deserving of better health and drugs are not always the answer. They are often the cause of more problems but so can be surgery. Good luck to all in finding the proper answer for each of us as individuals. Sorry this was long.

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emma said:

Several of you have mentioned autoimmune disease, fibromyalgia other issues, so I will post this so you can possibly gain insight or confidence in your battle to better health. This has been my fight since probably 2005, but definitely since 2010, and I have found answers one by one. So hope it gives you some encouragement. I hope it doesn't bring anyone down, but doctors are so one sighted.

I have to say this because I had tachycardia and other weird problems and the three problems that I am going to mention are all related because they are related to calcium regulation or calcified ligaments. If you have Eagles, or fibromyalgia or heart palpitations or severe anxiety, bone pain, or kidney stones or a combination of the above. Make sure to have your calcium checked. and if it is consistently in the high normal range that is 10.0 or over in the US, you may also have a bad parathyroid gland causing hypercalcemia. Do not believe that it has to be above the normal for this to occur. By the time most doctors determine you have this you could be dead. Closely related to this is thyroid malfunction of any kind. My thyroid tests were normal, but I had a thyroid tumor cancerous, and I only found it because I had so many problems and my doc thought I was mentally ill. I found out about parathyroid disease and had a new doc test for it, bingo, but he also did an ultrasound and found a thyroid tumor. At the same time, I showed my ENT my lump in my throat that was causing pain like strept throat, Bingo again Eagles. Three diagnoses within a month. The feeling of something in the throat can be any of the above so do not put all your eggs into Eagles, but be aware of these relationships because more often than not fibromyalgia is not fibromyalgia, mental illness is not mental illness and these syndromes are related someway. All of the above, for me and I am feeling better than most of my life since dealing with all three. Good luck and don't be shy about studying your labs and checking them on the internet because these bone and calciium, heart, anxiety issues are all related. I am sure other neurological and neurological illnesses are also related. Our bodies need balance and when we do not have balance , we have a domino effect. So please be steady and keep on pushing on looking at whatever symptoms or group of symptoms might be related to what problems. We are in this together and WE ARE ALL deserving of better health and drugs are not always the answer. They are often the cause of more problems but so can be surgery. Good luck to all in finding the proper answer for each of us as individuals. Sorry this was long.