i was recently diagnosed with elongated styloid process
I am not sure how this differs from Eagle Syndrome (or maybe a distinction without a difference?) Anyway, I first had symptoms about 4 years ago; pain and difficulty swallowing. The pain was not severe. I went to a throat specialist who basically ended up telling me it was probably a stress or grief reaction (recent death of relative) , or might even be my imagination. Anyway, it went away within a couple of months. Over the last 4 years I would occasionally experience a fleeting episode of the same symptoms. Particularly if I stifled a sneeze (no doubt, the straining of muscles associated with that activity would trigger symptoms). Sometimes only lasting a few minutes, sometimes a day or two - but would always fade soon. About 3 months ago it got worse, and I actually had difficulty swallowing for several hours due to pain. This prompted me to go back to a specialist. His preliminary diagnosis of elongated styloid process was confirmed by CT scan of the neck area. He told me I should have surgery on both sides (two separate external styloidectomy surgeries), though there is no urgency so long as I am not troubled by symptoms. I am 59 years old.
Here are my questions:
1) Anyone have both sides done at the same time? opinions?
2) I asked how many surgeries he has performed; answer "10-15". Not a very precise answer, and my family thinks that this is not that many surgeries in total. opinions? Is this considered relatively routine surgery?
3) this diagnosis from a regional medical center (not very large). I am preparing to get second opinion at the Cleveland Clinic (close by). Can anyone recommend a particular surgeon there for this procedure?
4) It has been almost 2 months since I have had noticeable symptoms. Any opinons on whether I should even schedule the surgery at all at this time? I have not read about any substantive risks with delaying until symptoms become uncomfortable.
I agree with your physician's recommendation specifically for an external approach to remove the elongated styloid however; recovery from the surgery can be arduous and there are risks of permanent nerve damage. For those with ES so regularly painful it interferes with life functioning, it is well worth the low percentage of risk. If you are not symptomatic, I would not have the surgery.
I have very long styloids on both sides but have only been symptomatic on one side. When I questioned the surgeon about whether I should consider surgery on the non-symptomatic side after the first surgery, he advised not to. I don't think you'd want to have both sides done at once, even if you were highly symptomatic on both sides.
Irondon. My suggestion is get your consults and pick out a surgeon that you will be comfortable with. If you do not need surgery, do not do it, but if you already have a doctor in mind, you will be capable of making the surgery decision if and when you need it. I had Eagles symptoms for many years, they were mild and I had no clue. When the symptoms became intense, I had no where to go. I did point my lump out to my ENT. Luckily he had Eagles and understood my pain. I did not have this forum for 2.5 years as I continued to have more pain. Finally, I asked my ENT to do the surgery, At this point, it appears that the surgery was a success. I am not in pain most of the time and what pain I do have is from a disc in my neck. I did not have the options of consulting doctors before the pain got severe. This is something that you can do, but as my doctor suggested. Only do surgery if it is a quality of life issue. Only you can decide what quality of life is. Also, some of us would probably suggest that you don't let the pain get too intense and the situation to get too far out of hand because you can suffer nerve damage and surgery is more difficult if the calcification is really serious. It really is an educated decision. Only you can make it. Good luck.
Emma- How does the pain you get from the disc vary to the Es pain? I've just had MRI results showing a disc bulging and pressing on one of the nerves- c5/c6. The consultant who diagnosed me is actually an orthodontic consultant so not that knowledgeable about ES or the spine. He's agreed to refer me to Mr axon recommended by others on this site, and I'm going to try and get a referral for a spinal team, but I'm not sure what symptoms are caused by which thing, so which would be a priority! Have you had treatment for your disc- I think you've said before you've had bone spurs too? Did you look into the DISH autoimmune thing too? Sorry to hijack your discussion Irondon!
Jules
emma said:
Irondon. My suggestion is get your consults and pick out a surgeon that you will be comfortable with. If you do not need surgery, do not do it, but if you already have a doctor in mind, you will be capable of making the surgery decision if and when you need it. I had Eagles symptoms for many years, they were mild and I had no clue. When the symptoms became intense, I had no where to go. I did point my lump out to my ENT. Luckily he had Eagles and understood my pain. I did not have this forum for 2.5 years as I continued to have more pain. Finally, I asked my ENT to do the surgery, At this point, it appears that the surgery was a success. I am not in pain most of the time and what pain I do have is from a disc in my neck. I did not have the options of consulting doctors before the pain got severe. This is something that you can do, but as my doctor suggested. Only do surgery if it is a quality of life issue. Only you can decide what quality of life is. Also, some of us would probably suggest that you don't let the pain get too intense and the situation to get too far out of hand because you can suffer nerve damage and surgery is more difficult if the calcification is really serious. It really is an educated decision. Only you can make it. Good luck.
Just to jump in here - coincidentally, I had a problem with my disc too - I'm pretty sure it was C5-6 and it was in the midst of all this Eagles stuff. The main pain I had was in my arm. The disc was pressing on the main nerve that went down my arm as I recall. I eventually got a plastic disc put in. But the MAIN reason I had the surgery on the disc is that when the Eagles doctors found out I had a disc problem, they tried to put my pain off on the disc issue. So I had the disc replaced so the Eagles doctors would take me seriously. It was good to get the arm pain taken care of, of course, but it also helped me convince subsequent ENT's that the pain I was having was due to Eagles.
That's what I'm worried about- I'll probably have to wait a while to see Mr Axon on the NHS, and then could get fobbed off like that! I don't get much arm pain- aching in both arms at the front which feels more muscular- it's more the pain and constant tingling in my neck and left shoulder, and I get what I presume is occipital neuralgia, which is the real killer when that happens. The neuralgia doesn't really fit consistently with either of the conditions though as the nerves for that are higher than my disc problem, but in a different place to the styloids. But then we all get weird symptoms which can't be explained! Oh the joy of trying to diagnose yourself!!