Base of skull pain that comes and goes

Before your ES surgeries did you too deal with sharp random pains in the base of your skull? I don't get them every day but then none of my symptoms come for any rhyme or reason. I get sharp inner ear pain and under/behind the ear too...and so on. I know these are ES but what about the base of the head pain?

There are many nerves near the styloid process which are responsible for sensation/pain/muscle movement/etc... The pain in the inner ear and in/around the ear that you are experiencing are very commonly noted in others with ES. Are you confirmed with ES? The base of the head pain definitely fits the profile for ES as well. I had the vascular form of ES - the styloid process was kinking the right internal carotid artery. And because the artery has a lot of nerves surrounding it (called the sympathetic chain plexus), I would have nagging tension headaches that would start at the back of my neck (near the base) and radiate to the top and to the right eye. For a long time I thought it was just muscle tension... or just bad posture... so I would have my sister or someone give me a neck massage. But yeah, turns out to be the styloid. Once I got the styloid removed, I don't have that issue anymore (but I also had an aneurysm so I had open brain surgery so I feel after affects of residual headaches from all that here and there). Could you try to describe what you mean by "base of the skull"?

omg when did you have the aneursym? Thats a fear of mine! Was it before you had the ES surgery or after or was it from the surgery? I get a sharp pain in my neck and right at the base of the skull/head and it can shoot up to the back/top of my head. Today Ive had such pain in my neck. More left sided, if I had an adams apple, its right to the left of that When I pull my tongue back and or swallow, it hurts. Its like the glands are swollen. :( I have pains in my head yet too. I hate this. Im so scared Im gonna die. I was DXd a year ago with ES, been seeking a surgeon but only one I met has never done it. I meet 2nd one in April.

I get dull pains at the base of my skull. I literally have to stop everything to lie down. I had this happen a couple days ago. I was doing some hard work outside lifting boxes and it started. My ears feel swollen all the time. I am afraid of getting an attack or something so I am in a hurry to get dx so I can get the surgery. I will not wait.

L

Lisa,

Please don't be afraid! The aneurysm I had was entirely incidental and not related to the styloid at all as far as we know. The pain that you are having... shooting up to the back/top of your head sounds very similar to what I had. If I held good neck posture (actually had a neck brace for sometime) I wouldn't have them. And I can imagine the pain when swallowing - if you ES then the styloid could possibly be irritating the neighboring esophagus and all - "dysphagia" and "odynophagia" are two terms that are commonly used when describing symptoms of ES - they mean painful swallowing or difficultly swallowing. Hang in there! Praying that all goes well for you.

I hate that I have to wait til April 17th but know others have to wait longer and or are still waiting for a DX. I just want the pain gone and want to feel normal and like my old self. I'm so scared Im gonna die cuz of this. Like an anurisym or stroke. I fear it. I know what you mean about head position. In bed at night I have to get situated or I get pains. I cant lay on my side with my head looking up, I have to keep my head aligned with my body, facing forward or I have pain swallowing and head pain. :( SO scary. I pray the surgeon I meet with do the surgery on the outside of the neck so he can remove all/more than he would be able to by doing inside. Do you think they can grow back? I worry they came from my vitamin deficiencies but the symptoms didnt appear til after I started high doses of Vit D. Did you have any issues with vites/D?

I am confident that it will be well treated and you'll be good to go soon! I've read a case report (don't recall which) which mentioned a little line about regrowth of styloid processes but I would think that is very very rare and not something you should worry about. Just focus on meeting with the surgeon... let him/her know your symptoms and your concerns. And no I didn't have any vitamin issues... so I have no idea why the right styloid was elongated because the left was completely fine.

Thank you so much or your response. I just cant wait to meet the surgeon on the 17th and see if he'll remove these buggers. xo

Hi Lisa,

I also have the pain you've described - base of the skull & front of the neck. It was actually the neck pain which led me to find a hard lump under my jaw which was initially diagnosed as an infected salivary gland but was later identified as ES. I get sharp inner ear pain from time to time as well. I've had my right styloid removed as it was growing more straight down & I'm sure was poking on my carotid artery, vagus nerve or jugular vein as I was getting weird problems when I exercised. These are gone now post surgery. My surgeon also removed the stylohyoid ligament at the same time so there's less chance of the styloid re-growing (He also claimed he'd never seen a case of regrowth, & he's done about 100 surgeries). That ligament is a bit like your apendix in that you don't miss it when it's gone. I agree with Beary. Getting the second opinion on 4/17 is a good thing & may help to put your mind at ease. From all I've read about ES, it is not a problem that leads to death. Take courage from the huge number of people on this site who have ES, who have had surgery & who are, in most cases, much improved after surgery.

I will pray on 4/17 that you will find the answers and guidance you seek from this second doctor.

:)

Lisa said:

Thank you so much or your response. I just cant wait to meet the surgeon on the 17th and see if he'll remove these buggers. xo

1 more day til I meet the surgeon. I can't sleep. I have such pain and pressure in my head when I lay down. The left ES is so long now, I can feel it. Its like a long stick from top of the back of my throat to down in my neck. The right one that was the only one that bothered me, is poking the tonsil. I fear the left one is vascular now cuz I get woogy when I lay down and have to adjust to feel ok and minimize the pain. :( I wish this was behind me. I have been dealing with this since 08. I fear Ive had it so long that the damage is done. I just want these things out of me. :( Sorry for whining. I will be sure to ask about removal of the styolid and ligament. Thanks for that tip. x

Our bodies are designed to heal. Even if you've been suffering with ES since 08, I would still bet that you will notice a big difference in how you feel after your styloids are shortened. Just getting the pressure off of the nerves & tissues the styloids are poking will make a difference. Nerve healing does take time though so once you've had surgery you'll need to be patient as your body will gradually improve for up to a year post op.

I'm so sorry your pain is as bad as it is. Whining is acceptable here! ;) I'm having an off day myself today w/ oddball pains that I know are ES related. It wakes me up at night sometimes, too, but I'm definitely not as uncomfortable as you are. I'm so glad your appointment is tomorrow. If you like the doctor and feel comfortable with what he/she says then get yourself onto his/her operating schedule ASAP! Look forward to life w/o ES!!



Lisa said:

1 more day til I meet the surgeon. I can't sleep. I have such pain and pressure in my head when I lay down. The left ES is so long now, I can feel it. Its like a long stick from top of the back of my throat to down in my neck. The right one that was the only one that bothered me, is poking the tonsil. I fear the left one is vascular now cuz I get woogy when I lay down and have to adjust to feel ok and minimize the pain. :( I wish this was behind me. I have been dealing with this since 08. I fear Ive had it so long that the damage is done. I just want these things out of me. :( Sorry for whining. I will be sure to ask about removal of the styolid and ligament. Thanks for that tip. x

Hang in there Lisa....you are going to be OK. That is a long time to suffer from ES, but I agree with Isaiah 40:31 that the surgery will relieve a great deal of your symptoms. I was just like you at night, had to get my head perfectly straight with my body in order to sleep, and it felt like a stick choking me across my neck. If I moved my head even a little either way, I would feel dizzy and my heart would start beating weird and sometimes race. Doctors told me it was anxiety attacks, but it definitely was my styloid. I also had alot of pain at scull base, sometimes sharp and sometimes dull. So your symptoms are so very typical of ES and I believe with all my heart that surgery will give you your life back. I don't have any of those symptoms anymore. Praying that this doctor you are meeting with is the one to get those buggers out!

Thank you so much for you kinds words, you guys. I am really nervous of surgery but cant live like this. I just worry too much. :( I will post what I find out tomorrow. xoxo