Surgical and or Medical Intervention: Let’s Arm Ourselves With Data

I’ve been on this journey for several years now. All starting after an oral procedure. After multiple doctors I was finally diagnosed with Eagles. Styloids 4.5 both sides.

Researching the clinical and published papers you would think surgical Intervention has a high success rate. But, reviewing the members whom had surgery in this group… it’s a different bag. It seems 70% or greater of the members on here have not had the success they have hoped and in many cases been met with even more adversity.

As a statistician… I feel as we can come together and do a little crowd sourced case study. What I’m looking for is variable procedural outcomes. In other words… what procedure worked best.

If you’d like to share you’re experience and outcome please reply with the below template:

  1. Diagnosed with any other ailments: yes/no if yes, explain

  2. Bilateral Diagnosis of Elongation: yes/no

  3. Length of Styloid Process(s):

  4. Medical Intervention: Surgical/Medical/Homeopathic

  5. Surgical Point of Penetration: External/Oral

  6. Styloid Extraction: Entire (base of skull) / Partial

  7. Medical Intervention: List any meds prescribed

  8. Homeopathic Remedy: List

  9. Outcome: In general Success/Unsuccessful

  10. Would you recommend procedure/intervention: yes/no/why

The answer is out there and we can use data to make better and somewhat personalized decisions. I refuse to think pain is a must with this syndrome, but we must be our own best advocates. Arm ourselves with knowledge that is scarce in the medical field. Rightfully so as we’re pretty rare birds if you haven’t already heard.

If we start getting enough data in, I’ll make and present the pivot tables (stats) so we can visualize possible best practices.

God speed everyone.

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I can understand that you’re interested in researching the best outcomes & the data, but bear in mind that the results you read about on here are skewed & not necessarily accurate- we’ve found that many members after they’ve had a successful surgery want to get their lives back & forget about ES, so we don’t hear from them again, whereas those whose surgery hasn’t gone as well need more info & support, so they come back for that!
I nearly didn’t have surgery because I read on here a member’s post about how awful he felt after he’s had surgery with the doctor I was going to see- luckily I messaged him afew weeks later & he was recovering well, but hadn’t come back on to share that!
We do also have quite a few members with complicated medical history too, which affects recovery & overall results.
But to answer your questions,
1- I have a prolapsed cervical disc also, & possible autoimmune condition.
2- I had bilateral ES
3- 4 cmsboth sides
4- Surgery
5- External
6- Back to skullbase
7- Amitriptyline
8- No homeopathic remedies tried
9- Surgery very successful
10- would recommend it with a skilled surgeon especially for vascular ES. I got my life back!

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Jules,

Thanks for the explanation on why we might generally find negative experiences. There is actually a phrase for this, but I’m blanking on it. Great example of said phrase. I am so happy to hear you had a successful experience. That certainly brings me encouragement and hope. Something that we can all agree is sometimes hard to find.

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  1. Unspecified connective tissue (haven’t had genetic testing to confirm but family has hEDS), chronic sinusitis, multiple allergies
  2. Bilateral ES with right shorter than left
  3. Right 3 cm, left 3.5 cm
  4. Surgical intervention once diagnosed
  5. External
  6. Entire
  7. None other than typical post op
  8. Pre diagnosis I used cough drops and tea with honey extensively to soothe my throat
  9. Very successful, at my most recent follow up the surgeon called me the poster child for this surgery
    Would you recommend procedure/intervention: yes/no/why
  10. I would recommend - nothing else is as permanent and the impact my symptoms had on my life prior to surgery was so great. I’m glad I got this done.
3 Likes

Loumango,

I have worked w/ many ES patients over the 6 years since I had my surgery & can confirm first hand that there are a lot of people who have good surgical outcomes, but for the reason Jules states, they have not continued on the forum.

Here are my answers to your questions:

  1. Cysts in my thyroid, 2 are calcified; possible Undifferentiated Connective Tissue Disease
  2. Bilateral elongation
  3. Don’t know lengths but can send you a 3D image if you want
  4. Surgical intervention
  5. External
  6. To skull base
  7. Only meds Rxed were for post op pain & swelling management (Percocet & Prednisone). I’ve needed nothing else since.
  8. None
  9. Successful, but I have residual right-sided First Bite Syndrome which has finally nearly disappeared after 6.5 years; I had paralysis to the right side of my tongue (no loss of sensation just lost motor capability) for 9 months after my first ES surgery & nerve damage to the right side of my face which has caused my right masseter muscle to atrophy a little. I still have pain on the right side of my face in the area around my jaw joint but only if I rub it, so I don’t rub it. :stuck_out_tongue_winking_eye:
  10. I would recommend ES surgery done by an experienced surgeon. Surgery gave me my life back.
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Thank you for doing this, Loumango. I’m really interested to see what info we can make some sense out of.

One very important thing that I encourage you to add to the template, possibly as part of #9, is how long after surgery the information is being filled out.

One of my doctors said he doesn’t do styloid surgeries anymore because “everyone feels great when they finally recover from a surgery, but they always go back to feeling bad when the high wears off.”

While I disagree with his cynical approach, I have noticed that there are four phases that users on this site tend to find themselves in:

  1. Post-op: This seems to last for a few weeks or so and is focused on getting through the pain from surgery. With all of the swelling, it can be difficult to tell if any real improvement has been made.

  2. Recovered: After recovery from surgery, users can fairly accurately isolate and report which symptoms have lessened or disappeared. After a tough surgery and recovery, they can finally enjoy being relatively pain- and symptom-free (if all goes well).

  3. Short-term: The 6 month to 2 years period really seems to be the make-it-or-break-it phase. Some users find that their improvements stabilize during this time, while others find that their symptoms mysteriously return.

  4. Long-term: This phase is years after the surgery. Some users have reported very slow, but steady improvement during this time. Especially nerve issues can take this long to start clearing up.

I’m very curious to see if my perception of four phases holds up to any sort of statistical scrutiny, or if it’s all in my head. :stuck_out_tongue_winking_eye:

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@fivetiger,

I LOVE the way you think! You’re very observant &, in my estimation, right on target as far as the phases in which our users have found themselves.

As Jules & I have noted many times, people who have good, long-term surgical results tend to leave the forum & get on w/ their lives while people who struggle after surgery or experience regrowth & have to deal with ES all over again come back for support. These latter scenarios wrongfully make it appear that ES surgery is worthless or nearly so when in actuality many more people have been helped by it than not.

I’m sorry to say we don’t know the percentage of those who’ve done well long-term compared to those who’ve continued to struggle post op. Additionally, there are many people who join our forum but never post anything (they are affectionately referred to as “lurkers”) so we have no idea whether they ever have surgery, & if they do, what their outcomes were.