I was just curious what everyone's styloid process lengths along with some of your symptoms? Just a little inquisitive survey you could say.
My styloids are 4.5cm on both sides back in 2011 when I was first diagnosed. Its so hard to exercise as I end up with migraines worse than I already get them. Some of my symptoms include, sore throat, chocking on food, Left eye pain and swelling of the cornea, tightness and swelling of the neck and glands, brain fog, tiredness, migraines and head aches etc. I was never told what type I have so I am a bit curious to know.
My right styloid was normal at 2.5 cm and my left was 6.6 cm…I had excruciating pain on the left side that would make it feel like my carotid artery was going to explode! I had an intraoral left styloidectomy in July 2015 and have not had any symptoms since then. …Recovery was not bad for me at all. … Just like a bad sore throat…I slept in a recliner fire the first 4 or 5 days and was great after that!
Whoa! You and Brenda especially have some bigguns. I've not been able to get an official measurement (and the CT viewing software that came with my test results is, apparently, without any kinda measurement device that works form 1 slide to another. so helpful) but I've been able to MacGuyver some rough estimates. My right side is approx 2.5 cm, within the normal to small range, but the end bit is a knobby calcification of the ligament. Compared to my left side at approx 2cm also. The calcification coming from my right hyoid process is 3.5-4 cm (depending on which CT scan I'm fighting with), and also knobby and thick like extruded foam. They're like 2 skewers trying to meet in the middle of a club sandwich. I have some crazy symptoms, including stroke like symptoms and lack of muscle control in my upper back, but I won't know what's neck spikes and what's shoulder injury until after I get the calcifications removed.
I've read in some studies, and Dr Cognetti mentioned this as well during my visit, that the shape and angle of the extended styloid or calcification can play a big role in the symptoms as well. 4.5cm is pretty well into the classification of "elongated", but don't let docs brush you off because they're not crazy big enough!
The 'average' most docs use is 2.5-3cms, but some docs only consider over 4cm elongated. There are some links to research in the ES Info section mentioning that the angle etc. is just as important if not more so. I also found a brief mention about how the different mediums used in scans etc. can affect the accuracy of measuring styloid length; worth remembering, several members have found theirs were longer than the measurement on scans when removed! I didn't get a measurement from my scans, but asked after the first side was removed and it was 4.8 cms. Waiting for side 2 to be done! In the research the longest styloid measurement I found was 14cms I think- imagine that!!
A CT with contrast would show if you have vascular ES. The eye symptoms you're having sound worrying- have you got those checked out? Eye pain can be one of the symptoms if the styloid is pressing on the carotid artery, but can also be a symptom of increased pressure inside the head (I had that as the styloids were/ are compressing the jugular veins). I still can't exercise as I get headaches, and painful pressure in my ears and temples, but otherwise having one side removed has made a big difference.
@ Brenda- good to hear how well your surgery went!
Jules, was your surgery intraoral or external? Im so glad you found relief from having one side done. Do you plan on getting the other side done as well? Who is the doctor that did your surgery?
Ive gone to my eye doctor and he said that my cornea was so inflamed that he couldn't see the side of it. It couldn't get anymore inflamed than it was. He said there are many possibilities as to why it happened. He prescribed me eye drops to help with the pain and bring the inflammation down. Its happened on several occasions now. Im at the point where I cannot wear my contacts much. I even changed brands that I wear to see if that would help.
Im getting a CT scan with contrast done in the near future, anything I should ask for or tell them what to do so to speak? Id really like to get the most out of this scan. Any information to get the best accuracy would be great!
Jules said:
The 'average' most docs use is 2.5-3cms, but some docs only consider over 4cm elongated. There are some links to research in the ES Info section mentioning that the angle etc. is just as important if not more so. I also found a brief mention about how the different mediums used in scans etc. can affect the accuracy of measuring styloid length; worth remembering, several members have found theirs were longer than the measurement on scans when removed! I didn't get a measurement from my scans, but asked after the first side was removed and it was 4.8 cms. Waiting for side 2 to be done! In the research the longest styloid measurement I found was 14cms I think- imagine that!!
A CT with contrast would show if you have vascular ES. The eye symptoms you're having sound worrying- have you got those checked out? Eye pain can be one of the symptoms if the styloid is pressing on the carotid artery, but can also be a symptom of increased pressure inside the head (I had that as the styloids were/ are compressing the jugular veins). I still can't exercise as I get headaches, and painful pressure in my ears and temples, but otherwise having one side removed has made a big difference.
@ Brenda- good to hear how well your surgery went!
I had external surgery- luckily through this site I was able to find an experienced surgeon. I'm UK, so it was Mr Axon at Addenbrooks hospital in Cambridge. He's a skull base surgeon/ otolaryngologist, so is used to working in that area and has performed a lot of surgeries. He's particularly interested in pulsatile tinnitus and is researching that, so picked up on that as one of my symptoms and thought it might be down to Intracranial Hypertension, so did the CT with contrast and found that the jugulars were compressed by styloids. Although the symptoms are massively better with one side done, I do still get symptoms occasionally, and more pain now on the other side, so, yes, I'm having the other side done. It's a bit of a wait though- probably won't be until March/ April.
Some of your eye symptoms sound like it could be down to dryness- I get that a lot and have now got eye drops to moisten them which stops any inflammation. I don't know what your healthcare system is like, but I was able to get the dryness checked at an opticians, so didn't have to go to a doctor. They confirmed it and gave me a letter to give to my doctor for prescription eye drops- you can get OTC ones, but the prescription ones are better. I take Xailin, don't know if that's available where you are, but there's another commonly prescribed brand called Restasis that seem to work quite well. It might be an idea to get the dryness checked out (they just put a little dye in your eye and look to see how long it stays there, it's painless) once you've finished the drops you have as if they are dry you'll get the problem back again.
For the CT with contrast- Snapple was getting stroke-like symptoms with her head in certain positions, so tried to get the CT done like that, but not sure how successful that was. You could try the same if certain positions affect you- I only got more pain with head turning etc., didn't affect the vascular symptoms so wouldn't have helped.