Treatments for Eagle's Syndrome

How many different types of surgeries or treatments are available for Eagle’s Syndrome?

Which surgery or treatment available has been the most successful and least dangerous?

Thank you for anyone that can respond.

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Hi @GodisAWESOME ! :heart: I believe typically external surgery is more successful than intra-oral. It is my understanding that the surgeon can access more this way so if there are nerves wrapped around the styloid process, calcification of the stylohyoid ligament, scar tissue, compressed veins, odd-looking glands, etc., the surgeon can addesss those things either anticipated beforehand from scans or as a game-time decision. The gold standard is SP’s cut back as close as possible to skull base because they can grow back although that is unlikely but it can happen. There are pain management choices like blocks and nerve pain medications like Gabapentin but they are just band aid fixes and not long-term solutions.

Be wary of chiropractic care and myofascial release physical therapists. Any manipulation of the neck, especially of C-1 to C-7, can make symptoms much worse. Many of us have vascular symptoms and/or instability in C-1 due to the SP compressing the jugular vein inbetween the SP and atlas of C-1 (impingement causing vascular compression and vascular symptoms also called Vascular Eagle’s Syndrome or VES-there is VES and Classic Eagle’s Syndrome and no other types-be wary of a surgeon who may not recognize VES if you have vascular symptoms) and the SPs banging into the atlas’s of C-1 on either or both sides. Diet and eating paleo/mediterannean, forsaking all sugar, gluten, and processed foods and carbs seem to help a lot. High grade fish oil supplements, zinc, and bioavailable curcumin supplements keep me functioning. I was recently diagnosed with Lyme disease and the folks on that Facebook forum swear Eagle’s Syndrome and fibromyalgia are caused by Lyme. I am still learning about all that. A “lyme diet” interestingly enough is what I mentioned above (mostly) and helps greatly with inflammtion associated with Eagle’s Syndrome. I believe if you can control your inflammation through food, you can buy yourself some time to get to a surgeon.

Beware of medications that cause tinnitus called ototoxic. Most all pain meds including over the counter and antibiotics, Benadryl, and the things you’d normally look to for relief are ototoxic. Tinnitus caused by these meds are its own special kind of hell. I had to stop them and its been very difficult. There is a product on Amazon called Lung Cleanse by the company Wild and Organic and as a side effect, it quiets tinnitus.

If you go to the top of the page and type Surgeon’s List in, youll get to a list that contains surgeons by state. Dr. Hackman, Dr. Cognetti, Dr. Constantino, and Dr. Hepworth come up a lot in the forums. Dr. Osborne is private pay only but he is also mentioned and a member’s husband @lingerpartyof9 is having surgery with him I believe on 1/10/24. He has two videos on Youtube if you type in his name and “Eagle Syndrome.” His next documentary will be about @lingerpartyof9 husband. Hope this helps. Stay strong.

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Thank you, Heather, for responding and for the enlightening information. I am going to my new PCP tomorrow morning and I am trying to prepare bulleted information to share with him.

It is interesting that you mention Lyme disease possibly associated with Eagle’s, because I was bit by a tick that I found engorged with blood several hours later, and possibly it was actually the next day, but no doctor would really entertain this as a problem or give credence to this because they say my tests were normal, even though I had several bands showing otherwise, but I guess they were considered as having been exposed in the PAST. Anyway, that was interesting…

An earlier Chiropractor who reviewed my images said I have an issue at the C-1/C-2 are that there is pinching of the vertebral artery. At the time, I could not get any doctor to listen to anything I had to say where information was from a Chiropractor, but if it hadn’t been for this latest Chiropractor who did the CT Cone Beam Biopsy, I would not know about ES. I feel now I know what has been causing the constellation of symptoms I have been having since 2020.

Good to know about the Wild and Organic Lung Cleanse product. Maybe I will try that; I’m hoping, though, that when the ES gets resolved, I will not have tinnitus anymore!

Regarding the autoimmune diet, you are right that it works quite well. When I first got this, I was trying everything, and that type of diet really helped. My problem is I have not stayed disciplined.

The medication that seems to be keeping the BP spikes at bay that I believe are happening due to pressure on an artery is Metoprolol Succinate ER 25 mg 2 x day; the problem is I don’t like being on medicine and after being on it 2 years this past June, I have noticed strands of my hair falling out. This can be a side effect.

I am familiar with Dr. Osborne and have contacted his office; he’s very expensive and does not accept insurance. I have seen the video with Jim Beaver, and I, too, have those types of dystonic storms he exhibits in the video. Apparently, this is very rare, too - even rarer than ES.

Thank you for the information. God bless you for your help and insights.

Julie

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How interesting we share many similarities when it comes to our ES. I wanted to let you know I did a second edit to clear up a couple things if you have time to re-read the post between now and your appointment with your primary physician.

Re: the beta blocker, ES irritates the vagus nerve and can cause all kinds of heart issues like pain, palpitations, and a fast or slow resting pulse. Sometimes we are misdiagnosed as having tachycardia or other heart ailments when it’s in fact from the SPs causing compression of the cranial nerves, the vagus included.

I was on a short-term dosage of the same medication for a CT angio of the heart two weeks ago. Unfortunately, they didn’t seem to work and my heart sped up instead of down no matter what meds they administered. When I have chest pain, I try to think positive it’s the vagus and not anything worse and usually the pain resolves right away. When I think the worst, the pain intensifies so there is definitely a mental component to all of this. Same with the my tinnitus.

Please look up the ototoxic effects of your beta blocker. It was reported to cause and increase tinnitus in patients but you should talk to your doctor about it at your appointment. Maybe you can wean from your meds and switch it maybe you don’t need it anymore. Anyways, tinnitus can become catastrophic and they don’t tell us the meds we think are helping could be hurting. The ES may cause some of it but when I got off all my meds and used the Lung Cleanse, my tinnitus all went away.

I’ll pray your appointment goes well and your primary doc is receptive to your needs. Take someone with you if you can. It sets the tone so to say, If you can’t, go in with pre-written statements and articulate what you need. The primary care doc will likely not be able to answer many ES questions so don’t get discouraged if you have some and he or she has no answers. :heart:

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Yes, I am aware that Metroprolol Succinate can cause tinnitus, but my Cardiologist will not agree that the tinnitus I started having in February, 2021 is the reason. Unfortunately, when I went off it in April this year, my symptoms returned, so I went back on it about 10 days ago until I look into the Lung Cleanse, but not sure I can get off it because it seems to keep the extreme BP attacks I am having somewhat at bay. BUT, because I was off it for a couple months, it takes some time to build back up in the system, so I think that is why I am having the attacks again.

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I don’t know where the second edit is that you are referring to…???

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Sorry about that. The edit is in the original (first) reply I posted to you. :slightly_smiling_face: