Good point Jules. I am really grateful it happened now and not after I saw him! Still holding out hope it might settle down again.
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Well knock on wood, but I feel much better today. Still not 100 percent normal but don’t need pain pills or even NSAIDs today. Hopefully tomorrow is even better. Now I just have to decide if these episodes of pain (this one was about five days) are worth living with or what I do about them?? I would say yesterday my pain was a 7-9 throughout the day and it never really got a lot better even with two pain pills and Tylenol.
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Glad you’re feeling better today blossom. In my humble & non-medical opinion, getting the styloids removed is very worthwhile. Your symptoms are likely to get worse w/ time, & the longer you wait for surgery, the more you run a risk of permanent nerve damage. Since you already know you have vascular issues from ES, risking long-term damage to those vessels is just not worth it in my book. Of course, the timing needs to be right for you. Just needed to give my “two cents”.
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It was the thought of the potential damage to major blood vessels which made the decision for me to have surgery, but it is a personal decision. Presumably withput surgery you’ll be on the blood thinners permanently? Are there long term effects to that to take into consideration too?
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I’m not sure re: the blood thinner but is something I’ll ask about. I’m just confused because my angiogram did not show compression of the jugular at the location of the styloid at all. Not sure though if this means anything. There is not really any other explanation for my pain? I read my procedure report and actually it’s my left transverse sinus that is slightly narrow and pressure was slightly elevated. But my pain is all on the right, so it’s weird. My symptoms have been on and off but definitely have not gone away completely like they did in August when they returned at high altitude. My throat has been hurting a lot more and headaches are intermittent. If they’re here to stay… I definitely need to do something about it. Just don’t know what would even help! Hope Dr H has some ideas.
Hi blossom,
You noted that your angiogram was done w/ your head in a neutral position, & it’s been mentioned that the head in neutral often does not show vascular compression. The head needs to be in the position that provokes vascular symptoms for the compression to show.
Think of it this way: As you go about your day, your head/neck are rarely in neutral position for very long because activities of daily living require constant head/neck movement up/down, side to side, diagonally up/down, neck flexed/extended. It’s during these continuous head/neck movements that your jugulars are most likely being compressed (most often between the C-1 transverse processes & the styloids). Your jugular veins are like the filling in a sandwich w/ the styloids on one side & the TPs of the C-1 vertebra on the other & IJV in between. With every head/neck movement your IJVs are getting squished a bit. Getting the styloids removed will accomplish two things - decompression of the IJVs (which will have room to expand & contract as they are no longer sandwiched between two bones) & stopping irritation of the cranial nerves which are being annoyed by the elongated styloids, giving them a chance to heal.
Many people have questioned whether or not ES surgery will help. I can say that when the surgery is done by a knowledgeable & practiced ES surgeon there is almost always significant improvement post op. The recovery itself is a journey, but the outcome for most of us has been life changing in a positive way.
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Thanks Isaiah. The way you described it makes perfect sense. The doctor who did the angiogram didn’t have much explanation for why blood thinner would help or why I’m in so much pain and said my symptoms were “nonspecific.” I think I am in a little bit of denial that something is actually wrong with me and I still feel a little bit “crazy” even though I have such Bad pain. I may have internalized this just having been in limbo for so long without a firm diagnosis and so much testing. After all, lots of people are diagnosed with eagle syndrome with CT scan alone, and mine did show elongated styloid and possibly calcified ligaments. I hope I come away from my next appointment with Dr H with a firm diagnosis and a plan that is not just more testing. I’m definitely open to surgery I just want to know that that will actually have potential to help!
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blossom,
It would be good to know if your s-h ligaments are calcified because if they are, they need to come out along w/ the styloids or you’ll have incomplete recovery &/or eventual worsening of symptoms w/ the need for a second round of surgeries. Mine were partially calcified i.e. looked like dotted lines in my CT scan. I was glad Dr. Samji saw that & removed them as well as my styloids. That is to say make sure Dr. H is clear about that situation.
The styloids/calcified ligaments can tangle w/ up to 6 of our 12 cranial nerves which is why the symptoms are “nonspecific”. They’re too diverse to be diagnosed as anything in particular (except ES) but many doctors only look for certain symptoms associated w/ ES & dismiss everything else.
If you have a few minutes, look up Two Minute Neuroscience on YouTube & search the 2 minute video for each of these nerves - Trigeminal, Facial, Glossopharyngeal, Hypoglossal, Accessory, & Vagus. I think you’ll have some “AHA moments” as you watch these videos & the sources of many of your symptoms becomes more clear.
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Yeah, last time I was there he said my styloid was quite long and the ligaments looked to be stretched over my arteries. Not sure if that means they are calcified but another question I’ll be sure to ask. I did watch the neuroscience videos but that was back in April or May so I may need a refresher. Kind of a bummer to think I’ve been dealing with this for that long!! 
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If your CT scan was done without contrast, & you can see the ligaments or parts of them, then there is calcification on them, & they need to come out. A CT with contrast will show ligaments calcified or not.
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Hi Blossom! Did you post elsewhere about your appointment with Hepworth in November? Curious what you decided to do…
@Melcomcosh Hi, yes, there are some updates here: Follow up after my angiogram - #33 by blossom though I haven’t made a ton of progress since then…
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Replied on your other thread!