One lingering question I have (and get overwhelmed searching for clarity), is why do you need different surgeons for the differently presenting types of ES? I wondered if the Vegas nerve is being compressed, would removing the styloid not resolve those issues? Is there more to that surgery than removal that constitutes needing a certain surgeon? We feel based off of my husband’s symptoms that he has compression on that nerve which is causing so many of his symptoms. Would appreciate a little more insight. Thanks
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As long as the surgery is done by an experienced doctor, who understands that the styloids should be removed as close to the skull base as possible then this should remove the compression on the vagus nerve and help his symptoms.
We only suggest that members should look into certain doctors is when someone has vascular ES, so the styloids are compressing blood vessels- this is because the experienced doctors will check that blood is flowing properly again before finishing the surgery, as sometimes there can be other compressions on the vessels, like muscles, other blood vessels or nerves.
If your husband doesn’t have any symptoms of vascular ES, then it should be okay to see any experienced ES surgeon.
Have you seen anyone yet, have you got a doctor in mind for the surgery?
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He is scheduled to see Dr. Chan-Leveno in Dallas, in late April. I also started the process of getting an appointment with Dr. Cognetti (which will be in August) in case we needed to go a different route. My husband’s symptoms are throat pain that began on left side only (with the feeling that something is stuck in his throat). However this all began early November. This last month he has been mentioning he sometime feels pain on right side as well. He has dizzy bouts daily, initially had severe gastrointestinal issues (GERD), has lost over 20 pounds, neck and shoulder pain, pain behind ear and lower energy. He feels so much better than the first few weeks of the onset of all of these symptoms, but “pretty good” seems to be the daily answer of how he feels bc all the symptoms are still present. Some days worse than others. Especially by the end of the day. Mornings are the best time for him. Do you think we are on the right track thinking vagus nerve is at play? How do you discover for certain which kind you have? When you are waiting months for an appointment, it would be discouraging to find out you needed to schedule with a different specialist and start the process over again.
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I’ve also read someone post (who used Dr. Chan) say that she doesn’t remove to skull base bc she considers that a “high real estate area”. So there is that too. But several have posted about successful surgeries with her and she seems to be the most experienced in the Dallas/Fort Worth area.
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@Acliff - Here’s a post @Jules wrote that will help you differentiate between non-vascular & vascular ES symptoms: ES Information: Common Symptoms And Possible Explanations For Them
Dr. Cognetti does surgeries which include IJV compression if it’s necessary so one of the two doctors you’re planning to see for certain could help your husband if he does have IJV compression. When the IJV is compressed it is often between the C1 vertebra & the styloid - up very close to the skull base, but sometimes the styloid alone is the culprit. If C1 is a contributor it may need to have a bit taken off of it to help the IJV open.
If your husband has internal carotid artery (ICA) compression, which usually occurs farther from the skull base, then it is usually naturally decompressed by the styloid being removed. The fact he’s experiencing dizziness could possibly point to carotid compression.
Most people who are diagnosed with ES have bilaterally elongated styloids. It’s not uncommon for one side to have worse symptoms than the other. It’s also normal for symptoms to come & go over days or weeks. As you suggested your husband’s GERD symptom could be caused by his vagus nerve being irritated by his styloid(s). Vagus nerve decompression also happens naturally once the styloids are shortened, unless C1 is the cause of the vagus compression. Did your husband have a CT with contrast? If so, whether he has vascular compression of any sort or not should be visible in his imaging.
Neck & shoulder pain are typically caused by the spinal accessory nerve which runs through the sternocleidomastoid muscle (SCM), the largest of our neck muscles, & down into the shoulders. Pain behind the ear is often caused by the occipital nerve & is also a common ES symptom.
Dr. Chan has done quite a number of successful ES surgeries for our TX members. Most surgeons don’t cut the styloid completely back to the skull base but leave 1-2 mm to protect the facial nerve which exits the skull right where the styloids attach. That small amount of styloid remaining typically isn’t problematic. We know that Dr. Cognetti leaves .5-1 mm of styloid post op so he gets very close to the skull base. He’s extremely experienced w/ ES surgeries & has done them for 11+ years.
Thanks for breaking that all down. Really appreciate the detailed info. We have requested his ct scans more than once. The first time they sent the notes but not the actual scans. Have resubmitted for the actual scans. Hoping to get this week! I’ll share when we have them.
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Your husband certainly has some symptoms which we see when members have vagus nerve compression… It’s good that you have an appointment with Dr Cognetti arranged, although it’s a long wait…
As @Isaiah_40_31 says we have had members who’ve had successful surgery with Dr Chan, but I will just link in this discussion by @WillisWay
Post Visit with Dr. Chan - General - Living with Eagle
You can always send someone a private message by clicking on their avatar…
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Acliff, If you have any questions about my experience with Dr. Chan, please feel free to send me a private message. I’m wishing your husband the best and think it’s great that you are advocating for him!
Kathy (WillisWay)
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I am a big advocate of getting as much testing as possible. As well as multiple opinions. There are limited Drs who deal with vascular. If it’s a simple styloid removal, there are more options. Many surgeons want their patients to get a venogram done in the hospital. My imaging was crystal clear that C1 was involved and I did not want just anyone who treats ES to be involved in my care.
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Hi! Based off my CT, my IJV compression looks to only be caused by my C1 vertebrae, not my styloid at all (though it is elongated and possibly causing other issues). If you don’t mind sharing, did your surgeon end up doing a C1 shave? I have a bunch of consults lined up but am afraid an ENT won’t touch that even though it looks quite severe and I’m symptomatic.
I know how over whelming this is!!! Trust me. Full disclosure, I got opinions from Annino in Boston, Costantino in NY and Hepworth in Denver. I did a lot of testing and also did the cerebral angiogram/venogram in the hospital in Long Island with Patsalides. I ultimately decided on Hepworth. My imaging was crystal clear that I had C1 involvement bilaterally. I hesitated with Hepworth as he is not a neurosurgeon and has been on record of not liking to do C1 shaves. Unfortunately, surgery was not a success. I am even looking at more sinus surgery (literally just got off the phone with a local ent who ordered a sinus cat scan this month) that Hepworth appears to have caused more issues with from sinus surgery. I was told by Costantino I am still substantially compressed on my surgery side and he ordered me a new venogram which I will schedule to do in NY sometime this Spring. As many in this group know, I waited a long time before having surgery and thought I choose the decision that was best for me. Things can happen. This surgery is still widely controversial and complex. Hepworth did my C1 shave. He may not haven taken enough off or the process he uses was not a goof fit for me. If C1 is involved, you need a provider who is experienced in doing this. Its much different than just getting a styloid removed. Do not rush into anything. I will probably end up with more surgery with Costantino and perhaps even a revision. Not sure when I will schedule my sinus surgery in!!! Good grief…
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Wow thank you for the thorough response and I’m so sorry the surgery you waited so long for didn’t help and possibly did more harm than good. I’m also doing a bunch of consults; I’m trying to get in with Dr. Nakaji after my CTV since he’s a neurovascular surgeon. The ENTs I’m looking into (Dr. Damrose, Dr. Cognetti) are able to treat IJV compression, but I’m assuming that’s when the styloid is causing the compression, not C1.
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@Jess1 - I don’t know about Dr. Damrose’s approach when C1 is predominantly causing IJV compression, however, Dr. Cognetti now operates w/ Dr. Heller (neurosurgeon) who does a C1 shave if it’s required for the best decompression results. They are a good team & our members who’ve seen them for vES have had good outcomes.
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I wont repeat much more than others but the red flags to me are the dizziness (vascular?) and the cause of the 20 lb weight loss. Also the severe GERD…has he has full GI workup? endoscopy, colonoscopy, etc?
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Correct. If C1 is involved, there are only a few providers. Constantino is quite good at this and he uses a Neurosurgeon which is an extreme advantage.
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He had an endoscopy the second week of the start of symptoms. They said he had GERD. They did two biopsies (esophagus and stomach). Both came back negative and no signs of cancer. They put him on medicine to coat the stomach and help him get his appetite back. Also started a prescription strength antacid. He did begin to feel better with stomach symptoms and began eating to the point he is eating normally now. But he still hasn’t gained any weight back.
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@Acliff - I’m glad the medications your husband is taking are helping him feel better. It’s curious that he isn’t gaining any weight back but at least he isn’t in terrible discomfort anymore. Vagus nerve dysfunction can cause lots of issues. I’m just looked up to see if the vagus nerve is involved w/ metabolism rates & found this interesting research article: Role of the vagus nerve in the development and treatment of diet‐induced obesity - PMC
I only read the abstract, but it does mention that a “blocked” vagus nerve can cause weight loss or lack of weight gain. “Vagal blockade, which inhibits the vagus nerve, results in significant weight loss.” Thus if your husband’s digestive problems are related to the vagus & it is chronically irritated by elongated styloids, it will likely require getting them removed so his vagus nerve can recover before his gastrointestinal issues full resolve.
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