By comparison to a lot of members, my Styloid is not that long. (3.2) with calcification. I was diagnosed in November of this year. My pain has significantly become worse. (7-10) most days. It's making my life miserable. I'm still trying to process this whole thing! I've been reading all the discussions, and trying to collect as much information as possible. It's been very helpful~Thanks for any answers I can get.
I think it's more about the angle they're growing, and what they pressing on/ pushing against. A lot of people (including me) have bi-lateral elongation but pain is a lot worse or only on one side! I get a lot of neuralgia type pain in my jaw, face, over my eyes, plus earache and pressure sensations in my ears, which has been helped with specific pain killers for that sort of pain. (amitryptiline) There was nothing else seen to be abnormal on the MRI I had, so it must be down to the styloids pushing on the glosso-pharangeal nerve and trigmenial nerve.
Have you had a CT scan to determine the length of the styloids then? There can also be calcification of the ligaments, which might not have shown up, but also cause a lot of pain people experience! Good luck!
Hi. My doctor said that it does not matter how long it is, it is simply a case-by-case basis regarding pain level. You experience pain with a 3.2-cm length, while someone else who has a 5-cm length may not even feel anything. In fact, I think that most people with elongated styloids do not feel anything. We are the lucky few - haha! Mine are both 4 cm each, including the calcified part, but I only have pain on the left side when swallowing. Not so much pain even - it's just like someone is poking me in the throat every time I swallow. Sometimes it gets irritated and I do have pain.
Good luck to you!
I don't know if it matters exactly how long it is, but positioning is quite important. I have bi-lateral elongation, but the pain is worse on the shorter one as it protrudes into my throat. My right side measures 7cm and the left measures 4.7 cm (the left is the one that causes me the most issues). The idea of surgery totally freaks me out.
Jules,
You are describing my pain exactly, Does your vocals go out? Not to mention the excruciating headaches...argh!
How long have you been dealing with ES?
USHIICEO said:
I don't know if it matters exactly how long it is, but positioning is quite important. I have bi-lateral elongation, but the pain is worse on the shorter one as it protrudes into my throat. My right side measures 7cm and the left measures 4.7 cm (the left is the one that causes me the most issues). The idea of surgery totally freaks me out.
USHIICEO,
Thanks for your reply, Doctor's seem to be the biggest challenge for all of us! It's almost funny, but, not...to hear some of the things the Dr.s I have seen have told me! Do you have a good Doctor? Surgery, is so scary for me right now, I can't even fathom it.... What are you doing to deal with your pain?
Nanners said:
Jules,
You are describing my pain exactly, Does your vocals go out? Not to mention the excruciating headaches...argh!
How long have you been dealing with ES?
USHIICEO said:
I don't know if it matters exactly how long it is, but positioning is quite important. I have bi-lateral elongation, but the pain is worse on the shorter one as it protrudes into my throat. My right side measures 7cm and the left measures 4.7 cm (the left is the one that causes me the most issues). The idea of surgery totally freaks me out.
Birdy,
Thanks so much for your reply, I appreciate it so much~ How long have you had ES?
Birdy said:
Hi. My doctor said that it does not matter how long it is, it is simply a case-by-case basis regarding pain level. You experience pain with a 3.2-cm length, while someone else who has a 5-cm length may not even feel anything. In fact, I think that most people with elongated styloids do not feel anything. We are the lucky few - haha! Mine are both 4 cm each, including the calcified part, but I only have pain on the left side when swallowing. Not so much pain even - it's just like someone is poking me in the throat every time I swallow. Sometimes it gets irritated and I do have pain.
Good luck to you!
Hi Nanners! I was diagnosed about a year and a half ago.
Nanners said:
Birdy,
Thanks so much for your reply, I appreciate it so much~ How long have you had ES?
Birdy said:Hi. My doctor said that it does not matter how long it is, it is simply a case-by-case basis regarding pain level. You experience pain with a 3.2-cm length, while someone else who has a 5-cm length may not even feel anything. In fact, I think that most people with elongated styloids do not feel anything. We are the lucky few - haha! Mine are both 4 cm each, including the calcified part, but I only have pain on the left side when swallowing. Not so much pain even - it's just like someone is poking me in the throat every time I swallow. Sometimes it gets irritated and I do have pain.
Good luck to you!
Nanners,
I was diagnosed Sept. 2013- the pain started about Dec 2011 I think. I had fillings done and tests on my salivary gland before diagnosis as I had pain in my jaw initially and saw my dentist presuming it was tooth- related. Looking back, I've had ear ache and sore throats for quite a while, which I now think are related to the ES as many others get this too. I was never told how long my styloids are, but I can feel both sides poking against my throat below the tonsils- yuk! I don't have any voice trouble though. Things have got a lot worse for the last 6 months so I have asked to be referred to someone more experienced, and will see if he's willing to do surgery. I have found good pain relief with amitryptiline, which helps nerve pain, so can sleep a bit, but I'm now finding if ever I accidentally lay in my sleep on my worse side I get a horrible feeling of building pressure, and pounding plus pulsatile tinnitus, so I think it's blocking a blood vessel. That scares me a lot, which is why I would now think about being operated on!
Jules,
My jaw feels like it spasms, not so much pain. Do you feel you have a good Doctor who gives good information. Are they willing to do surgery?
thanks
Nanners
I was diagnosed by a dental/ mouth consultant; I think he was sceptical about ES, and not particularly helpful. He wasn't willing to do the operation, but I wouldn't have wanted him to! I asked to be referred to a consultant recommended on here, so I'm waiting for an appt.- I'm in the UK, so waiting can be a bit long! I'll have to see if he's willing to do surgery- when I was first diagnosed I wouldn't have wanted it, but things have been lot worse over the last 6 months, so I think I would consider it.
Have you seen the spreadsheet Emma compiled (it's in the previous discussions section) with recommended doctors?