Doesn’t sound scary. Good news, i nabbed a cancellation, so I’m seeing a Head and Neck Surgeon tomorrow! Hope he agrees with the sense of urgency i feel.
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I’d inform the technician about any existing clots though, just in case. They might pay extra attention at that spot and perhaps give you more accurate picture of that area.
@jschronce - There are very few people who have a problem w/ clots from IJV compression. That is much more common when the ICA is compressed by the styloid(s) & thus so is the risk of a stroke.
There are quite a number of links to research articles about IJV compression in the link under the General category on our home page. You’ll have enough reading to keep you busy for hours, but you’ll be very well informed if you get through all of them.
As far as how much styloid Dr. Osborne or Dr. Sorenson would remove during surgery, that’s a good question to ask when you have a consult. Letting them know that you want it removed to the skull base or as close as possible is also important. Also, if your IJV(s) are compressed, observing whether or not the jugular vein opens up once the styloid is removed would be an added benefit. Dr. Hepworth operates w/ a vascular surgeon in attendance so the vascular surgeon can step in & do a venoplasty in the event the IJV doesn’t re-open right away.
Taking copies of research papers to Dr. Sorenson regarding the benefit of external ES surgery & any that have symptoms mentioned which match yours is a good idea. You can also print off the two longer posts Jules wrote about symptoms (use the magnifying glass & type “symptoms” in the search box. The first & third posts that come up are hers & are quite detailed. I actually handed those Dr. Samji several years after I’d had my surgeries with him as I think all doctors have much to learn about ES even if they’re proficient in doing styloidectomy surgeries.
Here are a few things you can do to help yourself be more comfortable & maybe sleep better: Sleep w/ your head elevated at night. This can be w/ two or more pillows or bed pillows on top of wedge pillow (to make it more comfy). Many of our members w/ IJV compression found that getting an Rx for a blood thinner such as Plavix helped reduce their vascular symptoms making life less miserable until they were able to have surgery. Icing your neck intermittently throughout the day helps some people whereas using heat has helped others (experiment). Observe if there’s a specific head position or positions that seem to make your symptoms worse & try to avoid those.
Usually several studies will be done to examine the IJVs if there’s a question about their condition. The ultrasound is often first because it’s the least invasive & can be done dynamically more easily (i.e. w/ your head in different positions to see how each one affects your IJVs). A CT scan w/ contrast & an MRI &/or MRV w/ & w/o contrast will also likely be the steps following an ultrasound.
I hope the head & neck surgeon is really helpful & interested in your situation. Please let us know how your appointment goes.
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I did find a Vshaped/ orthopaedic/ nursing pillow on top of a wedge pillow did help, it seemed to take the pressure off the sides of my neck, it was helpful before & after surgery. Hope that you can get the ultrasound!
I don’t know of any existimg clots, just a worry and a what-if scenario. So far, my ENT and both Head & Neck surgeons don’t feel a need for any more imaging.
Good news! My appt with Dr. Sorenson went very well, and he has agreed to do the surgery. Without any prompting, he told me the left-side calcified ligament and entire styloid would be removed to the skull base. It is “same-day surgery”, so I should be going home that day with a small drain, which can be removed on third postoperative day at his office. He mentions in the plan that careful dissection of the facial nerve and monitoring is done. The word “dissection” scares me - is this a common step in styloidectomies?
Scheduler should contact me within a week, and it may be a month until first available date. We talked about having a vascular surgeon assist - he said shouldn’t be needed but one would be available if needed. Theres no plan for a possible stent or venoplasty at this point, and he didn’t want to order additional imaging. He asked if the imaging results would change my mind about getting the surgery, especially when the imaging might be inconclusive, and the answer is no. I’m resolved to have it done to hopefully relieve these scary, debilitating symptoms and perhaps prevent a catastrophic event from happening in the future.
Sure would appreciate any thoughts or concerns from you all about how my surgery plan is coming together! Thanks for all the info you have already shared - it has been very helpful!
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All I can say is WOW! SO AWESOME! Dr. Sorenson sounds like a doctor who needs to be added to our list! I’ll wait to hear how your surgery goes before giving him a place there though.
What he has proposed for you sounds just perfect. The facial nerve dissection he referred to is likely dissecting the facial nerve away from muscle or other connective tissue that may need to be removed w/ the styloid. This would serve to protect the facial nerve. BRAVO that he does nerve monitoring, too!
I felt certain there was a doctor in your state who would be familiar w/ this surgery. I’m so glad he’s finally turned up!
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That’s not something you want to have done. Better try to clarify this with their office.
Dissecting the nerves means they would be cut for ever. I am pretty sure the doc has something else in mind as that would leave your face paralyzed.
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That sounds good! Nerve monitoring is usually done to make sure the nerve isn’t stretched too much, hopefully as @Isaiah_40_31 says it’s just dissecting away from the surrounding tissues and not literally dissecting it, as @vdm says it would mean permanent paralysis so I would’ve thought that would’ve been mentioned (& would be extremely unusual!), but best to double check!
I had a drain in, they’re very good in that they do reduce swelling and the risk of infection, but can be pretty uncomfortable, just to prepare you!
Hope that you get a date soon!
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Interestingly, in my internet searching about the facial dissection, i came across a short video of Dr. Ryan Osborne (I considered having him do my styloidectomy) talking about this during paratidectomy surgery. My takeaway was that the most important aspect of successful facial nerve dissection is the surgeon having much experience doing it. I feel confident Dr. Sorensen has lots of experience after 20 years as a Head & Neck Surgeon, so that box is checked!
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Forgot to include the video link : How do you achieve facial nerve preservation in parotidectomy surgery? - YouTube
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Thank you for the link, @ jschronce! Very interesting info.
I am now scheduled for surgery next week, January 20, with Dr. Sorenson. Wanted to circle back to the “dissection” discussion. I asked Dr. Sorenson about it, and he explained there will be no cutting of the facial nerve! Dissection in this case refers to the necessary process of separating neck tissues and gaining access to the facial nerve to identify it and ensure that it is avoided via active monitoring throught surgery. He said if cutting it were intended, it would be called “transection”.
I have more to share, but should i start a different thread?..
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Thats awesome, hope you have a speedy recovery and must importantly some relief. I have a tele appt with Dr Osbourne tomorrow afternoon and im a bit nervous. I really don’t even know what to talk about at this point… Do you have any recommendations or insight for my appt? it kinda sucks when a doctor apppt feels more like a interview
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Were you able to send your imaging to Dr. Osbourne? It took took several different failed electronic attempts for me, until they learned that my imaging was done at Cedars-Sinai, which they had access to. He reviewed them before our conversation, and noted the “split-lesion” calcification may be causing some of the symptoms I described. My styloid lengths are not really elongated. Not sure if he planned to remove the entire styloid, so that’s something to ask Since both your styloids are elongated, I would think he would be willing to do the surgery, but which side, or will you ask for both to be removed? He didn’t feel additional imaging was needed for my left side case, which is clearly a calcified ligament, to do the surgery. I had his staff send the estimated cost and paperwork to fill out, but ended up choosing someone else more local to me in WA state, Dr. Douglas Sorenson. He can do it sooner, he’s in-network for insurance, and I believe he is a very experienced and competent head and neck surgeon, with at least some prior styloidecomies performed.
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Yeah i sent my ct scans through dropbox. i only have symptoms on my left side which is ironicallly the smaller side, but is also much think and touching my atlas. I want a surgeon here in tampa but the Drs recommended on the site for florida havent returned my callls. the Ent i saw close by stuck his hand down my throat and couldnt feel it and said its not eagles.
I’m so sorry you haven’t gotten calls back & the doctor you saw who felt your styloid claimed it’s not ES. That’s ridiculous, @Cazmagic! I don’t think the styloids can be easily felt in the throat unless they’re elongated (someone please correct me if I’m wrong!).
I suspect you’ve read that it’s not just styloid length that plays into symptoms. Sometimes normal length styloids that are very thick, angled, twisted or pointed cause the same problems as an elongated styloid &/or calcified stylohyoid ligament. There must be some feature of your left styloid that’s making it cause worse symptoms than the right one.
Things to ask Dr. Osborne would be
- Does he do bilateral or only unilateral surgery?
- If only unilateral, how many months required between surgeries?
- Does he electronically monitor nerves during surgery?
- Does he do the external approach? (We know he does but does he always do it that way?)
- How much styloid does he remove or how much does he leave behind?
- If this is relevant to your situation - How does he handle vascular ES cases i.e. compressed internal carotid artery or jugular vein - Does he make sure the vessel(s) is/are decompressed before closing the patient up?
- Is the surgery outpatient or does it require a hospital stay?
- Does he Rx prednisone to help reduce post op swelling?
- Expected recovery time post op?
- How many ES surgeries has he done?
Please let us know how your appt. goes.
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Thanks i definitely will ask, but I’ll have to wait until he offers you surgery. You remember my other post my left styloid is 37mm and right is 44mm, but the left probably twice as thick. Thanks for the support
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Thanks for posting the link to your previous discussion. I hope some others check it out & comment on it. I’m definitely not the most experienced at looking at images.