It has been awhile since I posted anything, mostly because there wasn't anything new to report as well as me being preoccupied with a hernia surgery recovery. It was a good dry run for when/if I get a styloidectomy.
I am curious to know if anyone out there has been tracking the growth rate of their "tusks" ?
I just had a 3d CT with contrast on September 30th. The previous CT scan (no contrast) was done on May 28th, in which the ES showed up as an incidental finding. The first scan measured the styloids at 4.5 cm on the left and less on the right. The current scan measured the left one at 5.4 cm and the right one at 5.1 cm.
Assuming the first measurement was correct, that pegs the growth rate at almost 1 cm in just 4 months.
Does that rate of growth seem about average or does it differ for each of you?
I won't be seeing my ENT until Dec. 9th, but I was able to get an advance copy of the report (which he most certainly has by now), but I won't have access to the actual images until the end of this month (When scans or x-rays are done in a hospital, patients can request a free copy, but have to wait 30 days). I am unable to confirm whether he has requested a copy of the images, though I can't imagine that he wouldn't have.
At least I have a clearer mental picture of my situation, firstly that it is actually ES and not SHCS (Stylohyoid Complex Syndrome) and secondly, that I am apparently not in imminent danger of experiencing the more severe symptoms that many of you have experienced to date. The report reads:
"The styloid processes are noted to be elongated, measuring approximately 5.3 cm on the left and 5.1 cm on the right with their distal ends located just below the parapharyngeal spaces. Adjacent structures do not appear to be impinged by them with the paitient in the neutral supine position. The soft tissues of the neck are otherwise unremarkable".
I kind of take offense at the last comment. Where does he get off calling my neck "unremarkable"? ;)
Holy cow...if that is the growth rate...that seems so fast!
Do you think the slices they took the first time didn't exactly hit at the end of the styloid on the images (the actual end of them was 'in between' image slices, but maybe the second set happened to capture a slice right at the true end of them?
I think with the way it spaces the images, it might be possible to err up to however many cm the spacings are. Then again, from the sides, you wouldn't really have this problem with the spacing.
Otherwise....ahhhh I do not want to hear that these things can grow so fast....wow!
I don't have multiple sets to compare to help out on your question, sorry! I'm sure you have the most excellent neck, EVER. ;)
I am allowing for the possibility that the first scan was improperly interpreted. That scan was looking at the cervical spine from the occipital to C3 and just happened to catch the elongated styloid processes. The recent scan was requested by a ES ENT to specifically show the styloid processes. Both scans had different radiologists interpreting them and different sections of the neck being looked at with different angles. I'm not even sure how familiar these radiologists are with Eagle's.
I will wait until I have access to my copy of the scan, then I will contact the ENT (if he doesn't contact me sooner) to ask these pertinent questions, though given the info in the report, it is unlikely he will deem it necessary to discuss anything prior to my appointment on Dec. 9th. Worst case scenario, I can try and contact a second ENT (in my region) familiar with ES and see what he thinks about the images.
I agree that 1 cm in 4 months seems very fast, but there may be other factors involved besides faulty starting measurements, such as diet, environment, metabolism and/or secondary medical conditions. Just as the symptoms and shape of the elongated styloids seem to vary from member to member, so can our individual rate of growth.
As for the neck comment, maybe we should all have a neck "beauty pageant". We can have several different categories based on gender, age, pre-surgery, post surgery, length, girth, etc. No Tiaras allowed!
It might not be a growth rate, it might be a calcification rate. My left styloid in the CT showed it to be only 1cm longer than the one on the right where 3.5 cm was removed in 1990. I told my surgeon that was impossible because what I felt was the same length as the right one prior to 1990. It was 3 cm-only the thickest boniest part showed on the CT and he was "surprised" when he opened me up expecting to take out 1 cm-he needed to increase the incision to get it. These ossified processes are not bone but cartilage that has begun to calcify and grow and they never showed up accurately in my x-rays, the CT's only show bone and you can shine a light through them sun to see it well anyway. So what is really there might not be all that is there-mine were all shadowy anyway and then this came out. looks like .9cm to me!
I'm posting this to show these doctors and patients who believe these doctors that all they think they see might not be all that's there and remove it and see how the symptoms disappear. This one was pressing against my carotid artery pinching the HG nerve, plugging my Eustaceon tube causing infections and was what was left after 3.5 cm was removed in 2003. A 6.5 cm picture would have been better! But it was never very visible in a CT.
That's my theory. Also the report doesn't say how you feel-scans be damned!
The process might be getting more visible as it calcifies. but un remarkable? I don't think so. MY surgeon was ready to remove 1cm so anything is worth removing to see if your symptoms diminish. My Doc at least took that position-but he was number 7 and 10 years in the search. I was at the point "remove it already and stop guessing with my pain" this doctor did!
WOW. You need to have these out!!! "adjacent structures do not appear to be impinged by them"???????? What are they waiting for? For the adjacent structures to BE damaged by these monsters? That is incredible. I am now having problems with the nerves that run down my neck and it started when mine were only 3.5 cm!!! These symptoms will last for the rest of my life since my research, so far, hasn't given me a reason to think, otherwise.
I would also take offense to your neck being called "unremarkable" and I would also take offense to the entire report!
Your statement about the calcification is a valid hypothesis, and one that I subscribed to myself until I researched further. Now I am more of the belief that it can be either ossified growth of the styloid processes OR calcification of the soft tissues of the stylohyoid complex. Truth be told, just when I am certain of knowing the truth, new information comes to light that forces me to re-think and modify my theories.
I also allow that all this new information can be just as incorrect as the old. Until several of the "experts" sit down in a room and hash this out until a consensus is reached, I fear we will still have competing theories and different syndrome names that are small parts of the same condition.
I remain skeptically open minded and open mindedly skeptical. Given that I have another condition that involves ectopic calcification (* Kimmerly Anomaly), it would be easy to conclude that my recent scan is showing exactly that..CALCIFICATION. But if the scan is accurate (or more correctly, if the radiologist's interpretation is accurate) regarding the adjacent structures not being impinged, then I would have to lean toward freestanding bony elongations of the styloid processes.
Ultimately, I think the only sure way to know, would be to perform a vivsection style investigation, layer by layer, then remove the "bony" structures and test them to determine whether they are made of osseous or calceous material.
Once I have my copy of the images (only 1 more week), then I can investigate further. Keep in mind, that to date, I have only experienced minor symptoms, the most serious of which- momentarily & partially passing out as well as shoulder pain- last occurred over 2 years ago. I imagine that could have been the "distal ends" passing over arteries and nerves as they grew. The only real symptoms I seem to have now is occasional Tachycardia and obstructive sleep apnea (perhaps due to impaired tongue muscle function).
* Interestingly, the calcification only seems visible in an X-Ray (taken laterally) and has not been identified in the last two CT scans even though they were specifically looking for it. Maybe, as you suggest, it is all about light and angles.
Yikes! Now you got me thinking what mine could be at. I didn't get an exact measurement. The tech doing my scan said approx 27mm and 22mm. My scans were done in March. I have surgery on Oct. 28th. I guess I will find out on that one soon..... at least. Crazy!
How rude huh?!
The radiologist said something similar on my MRI calling my brain "grossly unremarkable". Of course my husband had a field day with that one!! :)
As I touched on earlier, The first scan (neither 3D, nor with contrast) could very well have been insufficient to show the full length of the styloids/calcified ligament, or may have been interpreted incorrectly.
I don't want to rush into surgery until I have a very clear picture of what my current situation is. In my previous reply to Shaw, I mentioned that I only have minor symptoms so far. I just took time off work for hernia surgery and given that I don't have full time status there, I am cautious about taking more time off. On top of that, I have applied for medical employment insurance for the recovery period. Compensation is based on hours worked over a 12 month period. If I am approved, I will have to build up many more work hours before I can expect to get a second compensation. I keep buying lottery tickets, but so far, no real luck with them.
As for the "unremarkable" comment, that's just medical jargon for "nothing out of the ordinary"
I wouldn't go all "Chicken Little" just yet, but thanks for giving me the opportunity to segue into one of my other discussions.
I believe that one of the key clues to resolving our "affliction", is to determine what is causing the ossification and/or the calcification in the first place. It has been shown that some of those who have had the intra-oral surgery, seem to have a re-occurence after some time has passed. If the ossification/calcification is caused/facilitated by diet, environment or secondary medical conditions (Diabetes, Parathyroid/Thyroid problems), then even with complete removal via extra-oral surgery, there is a chance of re-occurrence if none of the factors (mentioned above) change. These factors would also affect each of us differently, so your rate of growth may very well be much lower.
Don't mean to scare anyone, but Halloween IS just 10 days away! I guess your husband's comment will be getting him a "trick" instead of a "treat" on the 31st. :D
If you check out my profile page, I have several medical articles that might interest you. Many of them deal with the topic of the root causes of calcification. I am still searching for a possible root cause for ossification.
In the 25 years I've had this either on the left or the right side-but never at the same time of course, I have found that all the comments above are valid. no one has a single symptom or even a multiple of symptoms. Mine hit with a vengeance on both sides when each decided to harden up-the one on the left showed it had been broken twice and healed. Doctor's aren't sure if that was what caused the ES or occurred when the cartilage had already ossified. After 15 years I didn't care about the theories or their reluctance-the first doctor removed my hyoid bone by mistake, the second removed only the first 3.5 cm. I still had all the symptoms and 2 surgeries under my belt.
This surgery relieved most all of my symptoms unless its a dream Im not sure now but the scaring will take 6 months to soften but I already feel so much relief after it was done correctly.
But waiting for the right doctor is the best thing and I respect a doctor who doesn't feel comfortable doing it but 2 doctors felt really fine doing it and messed up badly so it's not up to them much its up to us to decide if they should touch you. This time I just said yes and it worked out really great.
So I wish you all the luck and skill and patience you deserve! Keep up the good work and put their feet to the fire.
But waiting for the right doctor is the best thing and I respect a doctor who doesn't feel comfortable doing it but 2 doctors felt really fine doing it and messed up badly so it's not up to them much its up to us to decide if they should touch you.
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I just wanted to emphasize this - this is so true!
Hey Shaw did they do anything besides removing the bone ,I’m mean did they remove anything else or repair something that was damaged Glad your surgery was a success
I just had a neurologist tell me (I am having nerve problems that may have been caused by the bones) that he doesn't believe in Eagle's syndrome. He said "I don't think there is even such a thing as Eagle's syndrome" !!!!!! I told him I hope it never happens to you. My primary physician said be prepared to have this neurologist tell you it is all in your mind.! I won't be seeing him, again.
Red Pill said:
Tiger,
As I touched on earlier, The first scan (neither 3D, nor with contrast) could very well have been insufficient to show the full length of the styloids/calcified ligament, or may have been interpreted incorrectly.
I don't want to rush into surgery until I have a very clear picture of what my current situation is. In my previous reply to Shaw, I mentioned that I only have minor symptoms so far. I just took time off work for hernia surgery and given that I don't have full time status there, I am cautious about taking more time off. On top of that, I have applied for medical employment insurance for the recovery period. Compensation is based on hours worked over a 12 month period. If I am approved, I will have to build up many more work hours before I can expect to get a second compensation. I keep buying lottery tickets, but so far, no real luck with them.
As for the "unremarkable" comment, that's just medical jargon for "nothing out of the ordinary"
I read here once an ENT took one of us seriously because he was one of us and knew what we were going through. is it necessary for a doctor to have the disease to think we have it or it even exists-I'm beginning to think it's just laziness.
I went to a facial pain specialist in San Francisco who told me he didn't believe Eagles existed. And I had to pay $500 to see him because they didn't take insurance - and then I go in there and he tells me he doesn't believe there is such a thing. I think I may have started to change his mind when I told him about my history, but it's irritating to pay $500 just to teach some doctor about your condition.
