Dr. Hackman Surgery 2/28/22 + Full Story

General Eagle Syndrome Stories
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Hi Dobbs,
I hope you are doing well. Thanks for all the information you have shared here. I am new to this site but I have an answer to your question because you wanted to treat your cervical instability first before the styloid surgery.

You are suffer from symptoms similar to mine exactly, which started with skin problems (Brown spots on the face and extremities and a burning sensation), rapid heartbeat, must sleep at the same time every day or else have a strange heart attack, feeling chronically tired when doing simple activities that leave me bedridden for days, then headaches, ringing in the ears, vision problems (It happens to me like a fog when I wake up in the morning every day and my vision is blurry), neck, shoulder and chest pain, difficulty sleeping and other similar symptoms.

I have been suffering from these symptoms since 2020. I do not do any sports activities except hiking and I have never had any accidents or traumas.I live in the Middle East in Saudi Arabia, but when these symptoms started, I was living in Britain. I visited many hospitals in six Arab and foreign countries, and they did not know the reason for this strange disease. Then I ended up ten months ago with Dr. Hauser in Florida. He diagnosed my condition as cervical instability and vagus nerve dysfunction, and prescribed six sessions of prolotherapy for me.

However, after six sessions, there was no clear improvement. Then he took a venogram scan to determine that Iā€™m suffering from Eagle Syndrome, and he advised me to have surgery. I decided to return to my country, Saudi Arabia, to have surgery there, but the Saudi doctors strongly opposed this diagnosis and refused to do the surgery, saying that they did not agree with Dr. Hauserā€™s diagnosis.

Dr. Hauser encouraged me to have the surgery, but when I read what happened to you, I realized that the Saudi doctors may be right, or their doubts about the diagnosis need to be considered.

I started treatment for cervical instability first with Dr. Hauser but my problem has not been solved and the symptoms are still ongoing and even increase with any daily activity I do. I lost my job a long time ago because of this disease.

I hope you tell me what you did to solve this problem and has your health improved?

Thank you so much Dobbs?

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@strongman - Welcome to our forum. Iā€™m sad after reading your story & discovering what youā€™ve been through.

I suspect the fact you have CCI is what caused you to develop ES. Our members who have CCI and ES (they are commonly together since we believe having an unstable C-spine encourages the body to elongate the styloids in an attempt to create neck stability). Unfortunately, even if the styloids do help stabilize the neck, they cause many other problems when they get too long, curved, thick, or pointed, including causing the symptoms youā€™ve listed you have. This is because of the cranial nerves & vascular tissues which ā€œliveā€ in the same area & are irritated or compressed by the styloids. These symptoms are often reduced or go away completely once the styloid(s) are removed, however, for people w/ CCI, styloid removal can make their neck instability worse. We have had some members with CCI who worked hard to strengthen their supporting neck muscles after ES surgery which seemed to help reduce the symptoms of CCI, but the need to do the muscle strengthening is permanently ongoing if it is to continue to be successful.

Our member @vdm started a couple of very good threads that discuss cervical stability, posture & exercises that can help reduce pain & other symptoms though the real ā€œcureā€ initially is getting the styloids cut back so they stop irritating the nerves & in your case possibly the internal jugular veins.

The links below will be helpful for you.

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Hello Isaiah_40_31,
Thank you very much for your reply and for your feelings. I really appreciate your kind support. Iā€™m happy to join this forum. Also thanks for all the information you provided that will help me a lot.

My journey with this disease is very difficult and is still ongoing. The available solutions are very few, but I deal with all solutions with extreme caution because they are not always effective and are not guaranteed solutions.

I was told by a Dr. Osborne four months ago that he could not guarantee that my major symptoms would stop after the surgery. I believe that is what all surgeons would say. I do not have health insurance in the US and this makes the experience very expensive financially, especially with the possibility of neck movement being affected after surgery since I was diagnosed with cervical instability.

Thank you so much Isaiah_40_31for everything!

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Good morning! So, I also saw Hauser, who referred me for styloidectomy, and 2.5 years later I stand by my thoughts that it was the absolute worst thing I could have done. I truly believe that had I NOT had the surgery, and only treated the instability and corrected posture, that I would have a much better quality of life. Thus far, the combination of PICL stem cell procedures done by the Centeno Schultz Clinic, Atlas Orthogonal Chiropractic to align my c1 and c2, as well as multiple rounds of PRP and nerve hydrodissection treatments have been the most help. I have also been treating chronic inflammation and found out that I was working in a water damaged building with toxic mold for 9 years before my neck injury, and have also had to begin treatment for that as well. From my understanding, mold exposure can weaken the bodyā€™s connective tissue, and contribute heavily to ligamentous instability, as well as other issues with connective tissue. I have improved some with this combination of modalities. I donā€™t know that I will ever be what I was before the injury. But I can say, without a doubt, that styloidectomy made my path to recovery more difficult, and at this point is probably the one major mistake that I made in seeking treatment for the symptoms that I continue to combat.

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@Dobbs , so sorry that your ES surgery hasnā€™t helped you at all, it is always a tricky one to know what symptoms are causing what & which treatments/ surgeries to try first especially when you have CCI. Thanks for your info and hoping that the treatments youā€™re trying now do keep improving your conditions. :pray:

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Hi Dobbs,

Good morning
I hope you are doing great and recovering quickly. Thank you for your reply and for all the information you have provided.

I have noticed that my condition is similar to yours and this caught my attention, please can you mention the names of the doctors and their locations that you have followed up with them and have improved with their help?
Because I live in Saudi Arabia which is a 25 hour flight from Florida and I need to see if I can visit them soon.

Also please I would like to ask you if there has been any improvement in the weakness of your hand and shoulder? Because I have a weakness of my shoulder and hand on the left side and this is one of the symptoms, and have there been any improvement in your eyes problems and fog when waking up in the morning? Because I suffer from this fog and weak vision in my eyes, especially the left eye?

Some of my main problems are vision problems, tinnitus, and weakness in my left hand.The tinnitus increases with any activity I do, such as working on the laptop for a quarter of an hour or reading a book for a quarter of an hour. And limb pain.

Please what is the toxic mold that you are being treated for? because I was living in a relatively old house in Britain when this problem occurred to me.

I have had very slight improvement with the prolotherapy sessions. I am still suffering from these problems and they are getting worse with time.

By the way, one doctor here in Saudi Arabia told me that the problem might be in the soft tissues, but he did not offer me any treatment and there was no evidence of this at all.

Thank you Dobbs and I wish you a complete recovery from this strange disease.

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@strongman - Reading this topic may be helpful for you as our member @IvdM also had a difficult and unusual situation. He saw Dr. Middleton who is also in FL & got some good information & help from him:

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I think itā€™s important for people to realize that this condition is often multifaceted and a styloidectomy surgery is often only one part of the solution. If the styloids are causing compression, then in most cases surgery really is the only treatment that works.

I think the key is to also simultaneously, or sequentially, address the underlying structural issues that may have led to the calcification of the ligaments. This certainly includes physical therapy, atlas orthogonal adjustments, PRP / stem cell injections, cervical curve correction, etc.

I wonder how many people who still have problems after styloidectomy surgery have undiagnosed CSF leaks?

Iā€™ve heard only good things about Dr Hackman as a surgeon but it seems that to fully treat this disease you need a holistic approach and someone who is willing to discover how everything fits together.

Iā€™m fortunate to be a patient of Dr Hepworthā€™s since he seems to be on the cutting edge of understanding the complexity of this disease and how it manifests in different people.

I also think there needs to be an integrative approach where some aspects of this issue may need surgery, but other aspects can be better addressed more conservatively.

There seems to be an unnecessary separation or even animosity between doctors who are in Western, conventional medicine and those classified as holistic, naturopathic or chiropractic. In reality, often the best outcomes can be had with a combination of approaches.

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I completely agree with you, @jrodefeld!! Well said.

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Hey @Dobbs I have sugery scheduled with Dr. Hackman October 2nd and everyday I want to cancel. I have a broken styliod process at the base of my skull, but it seems like im maybe getting better slowly over time maybe. Its been 4 years now. But please can you help me with alternative treatments before i fully commit to this surgery like how to navigate and be on a treatment plan for sometime first so i can maybe heal. Im 26 and i dont want to make the mistake of getting this surgery and it ruins my life even more.

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Hi Isaiah_40_31,
Thank you so much for this information.
Have a nice weekend!

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I hope you do find help from our forum. Iā€™m sorry for the expenses of travel & the challenge of time changes you have to endure to get the care you need, @strongman. Weā€™re always here for you for free so please post whenever you need someone to listen or encourage you.

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Thank you Isaiah_40_31for your support and help. I really appreciate all of this and I am really happy to join you and learn from your experiences in this beautiful forum.

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So, in my case. I already had a CCI diagnosis when I went in for styloidectomy bc I was referred for styloidectomy. The surgery HAS helped many people, and Hackman is EXCELLENT. I donā€™t want anyone to get it twisted, itā€™s just that in my specific case, eagles syndrome was not the correct diagnosis, despite the elongated styloids and calcified ligaments being present. It was a logical step, but not what eventually started to lead to any form of recovery.

In my case, in hindsight, I would have gone down the path of treating CCI via regenerative medicine, and worked with a CIRS-literate doctor/functional physician to figure out the metabolic issues with my body as well.

I had a gut feeling going into the surgery that it may not be the right solution for me, and in hindsight I should have followed that instinct. But I also do not feel comfortable giving medical advice, as I have no qualifications to do so. I know thatā€™s not super helpful, but the reality is that there are extreme symptom overlap for: CCI, ES, CIRS, Lyme, and many other conditions. My combination was CCI and (awaiting the results of a genetic test, CIRS).

I have worked with 2 MDs for my CCI, both of which have been amazing. A DC/AO for my alignment issues, which has been super helpful. And have also done meridian therapy, functional medicine, detoxes, acupuncture, diathermy, postural correction, diet overhaul, meditation, breathwork, so many modalities all at once (with doctor supervision) to try to give my body a chance to heal.

I do feel like it is finally, and slowly, starting to heal up in a way that has the chance to be lasting. And I do feel like I would be further along without the styloidectomy surgery, but in some cases, it has helped people tremendously. So I will sign off with this:

The surgery is permanent, and can always be rescheduled. But the path for alternate things is long, frustrating, and expensive. I am out of pocket hundreds of thousands of dollars trying to figure things out. Fortunately, I feel like I am finally on my way there, though not where I want/need to beā€¦ itā€™s been a grind. I hope this is helpful!

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I have also been treated for thoracic outlet syndrome, and have done neuromuscular therapy as well as cubital and carpal tunnel; yes I did have arm and hand weakness. And still do to an extent, though it has improved some.

The mold part is TRICKY. Because once exposed, and there are many different types, if confirmed on labs, your body can become highly sensitized to it. Finding a doctor or practitioner that is literate in CIRS, if you do find confirmed mold exposure/water damage in your home or other dwelling, then that would be the route to go. In my case, aspergillus & stachybotrys have both been found in my former office and former home. Both of which had water damage.

CIRS is difficult to treat, but the shoemaker protocol is the gold standard, as long as there is a practitioner who can properly assist and guide through it.

As I have stated before, there are extreme symptom overlaps with CCI, CIRS, ES, and more. And in many cases, the blending of MD and holisitic is really what the body needs. It was in my case. Itā€™s just that the instability and chronic dysfunction of my nervous system form CIRS were the big issues, not ES. But many people do get relief from the ES surgery.

I know this may not be the silver bullet answer you are looking for, but I also want to be as candid as possible. Getting answers for issues in the head/neck region, as well as neurological and cognitive issues, as well as weakness, never seem to be 100% straightforward. In my case, it was the old rain barrel where my body fought off blow after blow, but it eventually could not longer handle things and my functionality rapidly declined after my injuries.

I hope this is helpful!

Dobbs

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Hi Dobbs,
Thank you for this detailed and thank you for your time. I have benefited a lot from your experience with this unfortunate disease. I wish you a full recovery and return to your good life.

I suffered in the same way and went through the same situation, but the doctors in Britain and Saudi Arabia did not know the cause of this disease and diagnosed it as a psychological disease, but I was sure that it was not psychological because I suffered from pain that suddenly spread throughout my body while I was in Britain studying my doctorate.

The cause of the disease may have been toxic mold because I lived in a relatively old house in Britain, and the other reason is that the symptoms at first were similar to allergies and burning in the face, feet and hands. Then something like electricity appeared in the face and neck, then ringing, blurred vision, neck pain, headaches and shoulders, rapid heartbeat, something similar to panic or fear, difficulty sleeping, muscle pain and a number of other symptoms. I visited nine hospitals in six countries and all tests and medical checks were normal. I was treated with acupuncture
sessions, laser sessions, physical therapy, breathing exercises, yoga, and changing my diet. After three years, I reached Dr. Hauser in Florida from Saudi Arabia, who diagnosed my condition as cervical instability and vagus nerve dysfunction. After seven months of follow-up, there was no noticeable improvement. He then requested a venogram scan and determined that I was suffering from Eagle Syndrome. All the doctors I was following up with in Saudi Arabia were not convinced by this diagnosis and advised me not to undergo any surgery. I still suffer from this disease, and the strange thing is that the symptoms are still ongoing and increasing with time. As happened with you, I have spent hundreds of thousands on this disease and I lost my job due to this issue. I am still looking for a solution for it.

Thank you for this information and I wish you a fully recovery.

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Iā€™m so sorry that youā€™ve been struggling with all these symptoms for so long & have lost your job through this ā€¦itā€™s so hard to know what symptoms are being caused by what condition, & which ones to treat firstā€¦I hope that youā€™re able to get a diagnosis of whatā€™s causing your issues. Unfortunately it seems to be very common to have quite a few other rare disorders alongside ES, like Ehlers Danlos, CCI, MCAS, POTSā€¦there seems to be quite an inflammatory element involved quite often.

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Hello Jules,
Thank you very much for your reply and for your feelings. I really appreciate your kind support. Also thanks for the information you provided.

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Hi Dobbs,
Sorry about all your frustrations.
Iā€™m new to this community and your posts stood out to me because I have a consult with Dr. Hackman in November for ES. I also have some sort of CCI and I see an AO on a regular basis. Iā€™ve been in contact with Dr. Centano for a consult though he doesnā€™t think I have classic CCI. I have every single symptom in the book for both ES, CCI, TMJ and TOS. I feel like a mess. Worst is I have Dysautonomia leaving my nerves very irritated. And I have POTS where I have low blood pressure and get tachycardia. I learned about all this stuff from Dr. Hauserā€™s videos online. Those videos were a great learning tool for me.
Iā€™m terrified of getting styloid surgery because I have a feeling it will leave my neck more unstable. I also donā€™t like the fact that they seem to tear through muscle and cut tendons to get those things out. So I donā€™t know if I should address the CCI first, I know of a doctor in Estero Florida who does PRP for the back of the neck. Then see how I handle that and if it works or doesnā€™t, then try the route of ES surgery.
I know your situation is that the ES made things worse for you and that you shouldā€™ve only focused on the CCI as well as your immune system problems with functional medicine.
I notice you mentioned seeing a holistic doctor in Indianapolis. Did you choose them after doing a bunch of research for them? What stood out the most with that holistic practice? I know I have problems with molds and other allergens. I live in Florida and its bad here. You also said youā€™ve worked with MDā€™s for your CCI, what type of MDā€™s are you referring to?
Thanks your your help.
Aaron

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I need to make a correction to your statement, @MisterFrodo. There is no ā€œtearing through muscle nor is there cutting of tendonsā€ during a styloidectomy. The doctors cut very precisely & attempt to separate muscle fibers rather than cutting them & tendons/ligaments are moved out of the way vs. being cut or torn. There may some minimal cutting of muscle if itā€™s part of the source of vascular compression, but even in those cases, the muscle that is removed is generally inconsequential to normal body function. What you have described would leave a patient more disabled post op than pre-op which is certainly not what a surgeonā€™s aim is when doing ES surgery on a patient.

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