Any successful ES story?

Does anyone know or heard of any successful eagle syndrome surgery story? What I mean is that after a successful surgery does the Elongated styloids grow back after years to come? Or are they gone for good, like for the rest of our life?

1 Like

Yes. Nothing grows back and i hope they shouldn't. I am 25 years out from my first styloidectomy on the right side with the end to the severe pain symptoms and no change since. It really is possible.

Good luck. As I always state here delays in surgical intervention make lesting port surgical issues more probable.

1 Like

I had another Ct 2 years after removal no growth at all But still have symptoms ,a lot milder though compared to when the styloid was in.

Ditto for my left side--still symptoms but sooo much less. I was looking for the right side results but since all the styloid is out what I got is what I learn to handle and work with.

I had both sides done at the same time and literally had my life back. I still have a more or less chronic nerve damage from ES, and some days I still suffer painfull or anoying moments. But compared to what it was like before surgery … This is nothing. My hope is that - in time -nerve damage will go away entirely. But I still consider my surgery a huge success. Before surgery I felt ES and thought about ES 24/7 and pain was unbearable. It wiped me out. Now I spend most of my days thinking of every day stuff more than I do ES. Thats huge for me :slight_smile:

1 Like

I were told by the surgeon that it is possible but very unlikely for the styloids or ligaments to grow back. He said it would be more likely that scar tissue from surgery - worst case - can compress the cranial nerves - creating ES symptoms again.

I would go with what Eagle Rose says--it became all consuming with pain meds, no sleep, trying to figure out what I could do next, the pain, oh and the pain! Reading everything I could and taking it to my doctors. Research in the age before the internet. The pain, the various pains in different places but always pain. In my throat, in my ear constantly but sometimes it felt as if a red hot nail was being driven into my ear-then it would change to pressure. Thus I obviously had just an ear infection so antibiotics. Wrong though. And to compound the physical issues with the reticent doctors who say you don't have it, don't know what it is, but you don't have it. The depression of pain, being ignored, not enjoying life-I ask doctors about that but they don't seem interested. This syndrome is such an odd thing to deal with to them. I received the best frame of mind from my last (sainted) doctor.....it's not supposed to be there, I will take it out and see what you end up with and so we can go from there. "Do no harm" has become "do nothing so I can't be accused of doing harm". I can appreciate a doctor who doesn't feel comfortable doing it though. Then move on--I think I saw a total of 21 doctors over a 25 year period regarding this and only 4 did anything substantive. I over this experience as a lesson in don't waste your time with a doctor--one appointment a few insulting comments from them and I'm outa there. BUT because I was so desperate for treatment I would stay hoping they would treat me. It was a waste but it became so painful I wasn't thinking well about moving on to the next but did soon anyway. Denial of treatment is harm--just like lying by omission.

I have a question to everybody--do you have lower back pain like sciatica? I had sharp shooting pain down my leg for 5 years and since the surgery, although the sciatica is still painful I have noticed I don't have the hot sharp pain as much. An acupuncturist said this has to do with decompressing the Vegas Nerve (sp). Any ideas or experience?

Did other pains reduce following successful surgery?

I would hazard to say that where this elongation occurs is the worst place in the body-its such a tight space to introduce a large boney structure that I think causes cascading pain all over the body.

As to scar tissue, I keloid really think and have some adhesions but they don't seem to make it worse. not sure yet. My Doctor says it could take 2-5 years to see as the scar tissue softens. My 2 external surgeries cause him to be worried about cutting into tough scar tissue so he went through the mouth. That scar tissue is disappearing pretty quick.

My recommendation is to just have it done once! Some of us have become the medical equivalent of "measure once cut twice'.

Eagle Rose said:

I were told by the surgeon that it is possible but very unlikely for the styloids or ligaments to grow back. He said it would be more likely that scar tissue from surgery - worst case - can compress the cranial nerves - creating ES symptoms again.

I love you shaw, but you are the worst pre-reader/speller here lol.

I no.

That's why I be an engineer- but its not the spelling its the typing that's my story and I'm sticking with it.

Oh god I suck worse than I even knew (Think = thick). golly I always said I don't proof read just hit send.

shaw said:

I no.

no was on purpose. I know know.