Today i went to family Dr because i am not feeling well. This is the first time i have seen him since being diagnosed with ES. He told me he has seen two other people in his office in his life time that has had ES and just as the symptoms came on all sudden one day they woke up and was just fine symptoms were gone without doing anything! He dose not recommend the surgery unless the symptoms are super sever life threatening point!
Your doctor did not have ES mine did. My ENT and ultimately the one who did my surgery told me that the surgery was not always successful. His now retired partner operated on him when the pain was so bad that he could not handle his practice. He said that he tried steroid shots, pain pills, etc but ultimately the surgery cured him. He did not push me and I waited 2.5 years before having surgery because I had to recuperate from a thyroidectomy and a parathyroidectomy and the resulting medication requirements to replace my thyroid hormones. However, he said that I should have the surgery when it became a life quality thing. Believe me you will know, when you want to have the surgery. I doubt anyone who has Eagles syndrome has it go away, but I probably had it for about 10 years before I had symptoms. Once I had symptoms that were painful, they did not go away for more than a few days at most.
Thank You emma!!! I agree that no one knows what the pain is unless they have ES! I had the throat pain for week in Feb then i thank my lucky stars it went away but then i got feeling of food being stuck every single time i eat that drives me crazy. Yes the Dr. did say when the symptoms are life threatening and or altering severely when there no other option to have the surgery. So far i have lost 15 pounds since Feb. but i could stand to loose a bit before it becoming life threatening weight wise. I have hypothyroid for 17 years now that fluctuates.
I find that hard to believe since calcifications of ligaments can worsen and the styloids grow and often keep growing.
perhaps those patients had symptoms that were not attributable to styloids in first place and those improved.
From my training, once something grows and irritates or affects nearby structures, reversal is unlilely without "doing something" about what grew.
If youre talking about "miracles", I have heard and seen of a number of folks whose illness reversed in my 25 years of being a patient advocate/educator, but Im sure there is an organic reason for that. the body has amazing healing powers...for some.
Waiting for symptoms to magically disappear is foolhardy IMO. IF anyone's symptoms are bearable and manageable, waiting may be ok IF a DR is monitoring. BUT if the symptoms are not manageable, or if theyre affecting your life and/or theyre major doesnt have to be as dramatic as "life threatening", then considering what is not an awfully dangerous surgery isnt wrong IMO.
after all, surgery actually removes the problems that are caused by the styloids being too large. To me thats the blessing because not many conditions in medicine are as easily "cured".
waiting until "super severe life threatening" is in my opinion very foolhardy if your life is being affected in ways that make you feel restricted or in pain.
I think the fact he hasnt seen but 2 patients with ES may be unfairly and inaccurately coloring his opinion
(by the way , the reason the symptoms can suddenly appear is threshhold..the styloid are a certain length and get a teeny bit longer and suddenly pressing on nerves, or pulling on structures or compressing blood vessels. that doesnt mean the reverse happens
Thank You Fin24 that makes a lot on sense!! I agree some people get stage 4 cancer then it gone random but exactly how do bones grow then dispear. This was just a family physician not an ENT the ENT i saw in North Carolina told me i have ES is classic and showed me where and is willing to do the surgery when i ready. It is not his first choice but will do it he accully prefer i try Gabapentin but because i live 12 hours away did not see that as my option that why he said he do the surgery but i have been on the fence about it because the pain i had felt like throat cancer shooting into my ear went away but i still have hard time swallowing and my throat feels closed off some. From every Dr I see i get how dangerous the surgery is talk I say there lots of people that have this done and live to tell about it I don't get it?
I just noticed odd symptoms in Dec 2014. I was lucky an ENT diagnosed it quickly. My symptoms are not severe and they can sometimes get better or disappear for a few days. But since I show symptoms, I am not going to wait for them to get worse. I’m not going to wait for it to develope permanent nerve damage. I am 57 so I don’t want to wait and do this when I’m older. Perhaps I am taking a leap of faith by getting surgery, but it’s my best option for my future
I suppose the doctors are thinking that we need to make an informed choice, and take into account the risks of nerve damage. It's good that we do get this information to decide for ourselves- there are risks, as with any surgery. And Emma's right, you will know when it's right to have the surgery, whether that's because the pain is affecting your quality of life greatly, because you can't eat properly, or because you have vascular symptoms, or all of these! It's a shame that there's no research done to show actual figures for surgery- successful or otherwise. I have seen some research mentioning how many patients had reduced symptoms following surgery, but these were only for very small numbers of patients. The consultant I saw went through the risks, and mentioned how many patients he's operated on had had different nerve damage. (A very small number) For me, I felt it was too dangerous to leave in, so I was confident that surgery was the right choice.
I think the surgery is not a cake walk especially if the tonsils have to be removed with intraoral surgery. However, all surgeries have risks. This surgery is out patient surgery, yet takes a specialist to do it not a general surgeon. My doc is an ENT head and neck surgeon and feels very confident about the outcome.
You may be able to try an injection. Some Drs do a nerve block or pain meds into the area to see if pain stops. Im unsure how often this can be done, or if they only do it to "prove" your pain is from Eagle's and not anything else. Others here are probably more knowledgeable about this than I am.
All surgery is "dangerous". I recently survived brain surgery so I understand its all relative. Even MY surgery wadnt "dangerous" compared to others.
From what Ive looked at and Drs Ive spoken to, this Eagle's surgery isnt that bad on the scale of all surgeries.
The intra oral approach seems easier than cutting the outside of neck and carefully working their way down to the bones, but even then, head and neck surgeons tell me its fairly "routine".
for me, the issue and danger is my other medical conditions.
you say "I dont get it"? if theres anything you need help understanding..Id be happy to explain. Please ask anything.
sometimes it comes down to this: " is not having surgery going to have my life more miserable than having it?" IOW if not doing any medical procedure means pain, eating/swallowing problems, life changing symptoms etc then surgery becomes the option of more common sense.
I tell patients to not let fear guide them. Try to evaluate whats important to you. Being pain free? swallowing okay? and seek the pros and cons of treatment. then only you can evaluate if and when surgery is the way to go.
Put fear aside as best you can.
Gods blessing said:
Thank You Fin24 that makes a lot on sense!! I agree some people get stage 4 cancer then it gone random but exactly how do bones grow then dispear. This was just a family physician not an ENT the ENT i saw in North Carolina told me i have ES is classic and showed me where and is willing to do the surgery when i ready. It is not his first choice but will do it he accully prefer i try Gabapentin but because i live 12 hours away did not see that as my option that why he said he do the surgery but i have been on the fence about it because the pain i had felt like throat cancer shooting into my ear went away but i still have hard time swallowing and my throat feels closed off some. From every Dr I see i get how dangerous the surgery is talk I say there lots of people that have this done and live to tell about it I don't get it?
Hi Emma…I’m new to this site. I was wondering who your doctor was and if you would recommend them?