Hepworth Surgery and Updates

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Hello Friends,

In this post, I am including the following information:

1. A big update- Surgery is scheduled!

2. A list of questions to ask Dr. Hepworth before surgery

3. A link to my CT SCANS

4. A list of my diagnoses and Symptoms

1. UPDATE:

Surgery with Dr. Hepworth is scheduled for August 21st in Colorado. First, I want to give thanks to this forum, @Isaiah_40_31 and @Jules, for their constant dedication, and everyone who shares and offers support. Living with Eagle has literally gotten me through to this point. Special thanks to @GCD and @KoolDude who really went out of their way to help me personally. I am forever grateful.

I have felt for a very long time that I am no longer myself, and that I cannot live this way any longer. Thank God, there is now a light shining brightly in the proverbial “dark tunnel.”

On August 21st, Dr. Hepworth plans to remove my right styloid along with a vascular surgeon who will “monitor” the re-compression of the IJV. I have an appointment with Dr. H on Tuesday to answer some of my questions. I am including my list below. I will be traveling from Florida. My mother will be there to help. Currently looking for a hotel with a freezer/fridge. Please let me know if you have any suggestions or questions I have not thought of.

2. QUESTIONS FOR DR. HEPWORTH:

  1. How will IJV Compression be addressed at collar bone level?

  2. Will both IJV’s be addressed during surgery, or just the right side?

  3. How and when will you address the Left side: styloid and IJV?

  4. Will you remove the styloid to the skull base?

  5. What methods might be used to keep IJV decompressed during surgery?

  6. What happens if the IJV re-collapses after surgery?

  7. Will you be measuring Intracranial Hypertension? How?

  8. Semicircular Canal Dehiscence – do I have this on the left side as well?

  9. When and with whom would I address the Semicircular Canal Dehiscence?

  10. C1? - any issues?

  11. Are my Carotid arteries being affected currently?

3. BELOW IS THE LINK TO MY CT SCANS:

https://www.dicomlibrary.com/?study=1.3.6.1.4.1.44316.6.102.1.20230724135035957.44196626728072068469

4. LIST OF MY DIAGNOSES AND SYMPTOMS: If you are interested (I have listed symptoms that may or may not be related to ES):

A. DIAGNOSES:

2017 :

Traumatic Brain Injury / Concussion/Whiplash : Auto accident

Migraine headaches (since childhood)

2018:

Eagle Syndrome- Bi lateral

2023:

ES Bi Lateral (Confirmed)

Intracranial Hypertension

Vascular Compression IJV (right)

SCDS- Superior Canal Dehiscence Syndrome (right),

  • B. SYMPTOMS: (B= BILATERAL):
    1. HEAD:
      Headache
      Head pain
      Head pressure
      Brain Fog / Cognitive Function
      Concentration problems

  1. NECK:
    Neck pain -B
    Jaw pain (when speak, chew, yawn or still) -B
    Tooth pain -B
    Burning behind ear - radiates into helix -B
    Swallowing difficulty
    Pressure in throat- increases when lying down -B
    Sense of “Strangulation” - increases when lying down on right side

  2. EAR / HEARING
    Ear fullness -B
    Inner Ear pain -B
    Tinnitus- very loud -B
    Pulsatile Tinnitus: Not constant- Noise in head- in time with pulse/ heartbeat -B
    Autophony: (especially upon activity) Hear voice, breathing -B
    Sound sensitivity- loud, uncomfortable/painful -B
    Hearing- difficulty -B

  3. VISION / BALANCE:
    Vertigo: Feeling environment is moving even when still
    Dizziness- Was sporadic; the dizziness and my head throbbing in pain have become progressively more debilitating. I haven’t been able to work or drive for the past month or more. I am currently on Short Term Disability. Creates nausea. I end up running into door-frames, drawers, and keep getting bruised
    Poor vision- exponentially worse
    Floaters- B Hooded vision- occasional
    Large visual black spot – SEEN IN THE DARK: (when I wake up in the night)- has “moving” spider-like legs and tons of black dots surrounding)
    Cataract- Right eye (just beginning)

  4. MENTAL HEALTH / OTHER?
    Anxiety
    Fatigue
    Heart palpitations
    Chest pain
    Shoulder pain -B
    Joint pain: -B Hands, fingers and wrists ache in pain (right side much worse than left)
    Incontinence: Embarrassing newer issue- 1 episode only of complete urinary loss of control - Bladder fully emptied while standing in kitchen. Often don’t have sensation of needing to “go.” Slow stream.

I hope that the sharing and collaboration can be helpful to others, now and in the future. I will keep you all posted along the way.

We are not alone.

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Congratulations! What a wonderful relief for you. I’m still figuring things out for myself so don’t have much to add at this point, but so happy this is scheduled and there is light ahead )).

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@EaglesWin :partying_face: :partying_face: :partying_face: I’m so excited for you!! Having a surgery date helps us leap forward into hope & out of symptoms-caused despair!! I’m so glad your day is coming up so soon & am happy we were able to support you as you worked toward & waited for your “big day”.

Your post is very organized & very thorough. Good work putting this together with how terrible your symptoms are. :star_struck:

Air BnBs/VRBOs are sometimes less expensive than hotels & will offer you a full kitchen & even a washer & dryer. I just checked the availability of the one we stayed in when I was in Denver w/ a friend who had ES surgery, & it’s available on the weeks both sides of your surgery except 8/19. I’d be happy to send the link for it if you’re interested. It’s a little on the pricey side, but it’s about 7 min. from Presbyterian St. Lukes Hosp where Dr. Hep does his surgeries plus reasonably close to grocery stores, gas, restaurants, etc. so was worth the cost to save travel hassles in downtown Denver. I’m sure there are also hotels in the area w/ kitchenettes that would work as well. Five Points, Cherry Creek & MidTown are the areas that Dr. Hep’s ofc recommended as being good, safe, & close to the hospital neighborhoods if you decide to look for an Air BnB/VRBO. The place we stayed was in Five Points area.

I have found that hotels w/ no fridges or mini fridges in the rooms are often willing to put things you need frozen in a larger fridge/freezer either in the hotel kitchen or in the area behind the front desk. I have utilized that accommodation in the past.

  1. Dr. Hepworth only does unilateral surgery so only the right side will be worked on, however, it’s still worthwhile discussing both sides pre-op.

  2. Dr. Hepworth does not take care of SCDS & will refer you to someone else for that. I recall based on @Ealge1 's experience w/ SCSD that one of the best surgeons for that is at UCLA Medical Center, but I can’t remember his name. I’ll do a search to see if she mentioned it in one of her last posts.

Many of your symptoms are related to vagus nerve injury/irritation & should subside as you heal or at the very latest after your left styloidectomy though I expect having the right side IJV decompression & styloidectomy will help you feel significantly better.:

Swallowing difficulty, pressure in throat, sense of strangulation, anxiety, fatigue, heart palpitations, chest pain, & even the incontinence (the vagus nerve is very busy in our bodies!!)

the jaw, tooth, burning behind ear are likely attributable to the trigeminal nerve. Skull base pain is very common w/ ES

I want especially to address your vision issues especially floaters that move, have spider-like legs w/ dots surrounding & hooded vision. I had these symptoms plus I could see “shooting stars” out of the corner of my eye sometimes when I blinked. This occurred a couple of years prior to my ES symptoms onset. I was afraid I had a torn retina. I saw a retinal specialist who explained that my vitreous humor was pulling away from the retina & the process would take a few weeks to a month. As we age our tissues inside & out dry out, & this VH detachment from the retina is something many people experience, usually in the 50-60 age group. It’s more common for women than men. I was also told that it would likely occur on my other eye as well, & sure enough, w/in a few days of the end of symptoms for the first eye, they started in the second eye though not nearly as severely. The only risk about this process is that the retina can tear so I had weekly appts w/ the retinal specialist until the process completed. It hasn’t affected my vision though now I have cataracts so the world is a slightly darker place. :stuck_out_tongue_winking_eye:
Posterior Vitreous Detachment (PVD): What Is It, Symptoms & Treatments(PVD,a%20common%20condition%20with%20age.

I’ll be praying for you - safe travels, ideal housing in Denver, & a perfect decompression/styloidectomy. :hugs: :pray:

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Not too long away, so pleased for you! Will be praying to for all to go well and for your IJV to re-open. Be prepared for a bumpy recovery, many of us experience ups & downs. It may not be a complete cure as you still have the other side in & the SCDS to deal with, but hopefully there’ll be improvements! Hugs and prayers :hugs: :pray:

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Thank you all! I am in Colorado. Traveled yesterday with the help of my mom and my cousin picked us up from the airport. I see Dr. Hepworth today for my pre-op. Monday is surgery at 1:30 pm. I can’t believe it’s here. I’m terrified and happy all at once. A lot is riding on this. But I will try to take it moment by moment and not get too far ahead of myself.

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You’re in good hands. Hoping for a quick recovery and end of your symptoms.

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@EaglesWin - I’m so glad you made it safely to Denver & that your surgery is coming up quickly. Very nice that you have relatives there to stay with. I will be praying for you & Dr. Hepworth - for a perfect surgery with a perfect outcome. :pray: :hugs:

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Glad that you have family support…hugs & prayers :hugs: :pray:

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Best wishes for your surgery tomorrow. You are in good hands. The surgery I had with Dr. Hepworth was by far the best. I’ll be thinking of you and sending positive thoughts hoping for the best outcome.

:four_leaf_clover: Good luck :crossed_fingers: :crossed_fingers:

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Thank you all for the kind words and support. Looking forward to being on the other side of it.

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@EaglesWin The other side is just a blink away! Dr H and I have been through a ton and IMHO he is the most compassionate and educated surgeon out there. I hope this gives you some comfort. Look forward to hearing how your day goes :pray:

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It does give me comfort. Thank you, @JustBreathe.

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Hi All. I’m pleased to report that my surgery with Dr. Hepworth was completed Monday, August 21st- Day 0).

First, I want to say that Dr. Hepworth is amazing. Brilliant, humble, patient, kind and expert. He explains everything so thoroughly, and addresses all concerns and issues. I’m forever grateful. I’m dealing with a good amount of pain and swelling. Today has been the most intense. Hoping tomorrow is better.
I will attach the report.

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IMG_51531963Ă—1684 933 KB

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IMG_51542956Ă—2373 2.3 MB

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Thanks for the update
your story and struggle helps me to get through this
i admire your strength to get this done and wish you the very best recovery
i will pray for your return to a normal life
thinking of you best wishes

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Great surgical report @EaglesWin! When Dr. Hepworth writes those reports it makes it sound like the surgery was a “skate in the park” for him. :joy: but we know by how we feel when we awaken from surgery that there was no skating going on!! Interesting that your styloid had adhered to your jaw bone. I recall we’ve had a very few other members who’ve had that happen as well.

I’m so glad you’re on the recovery side of this & anticipate much, much better days ahead for you. I expect you’ll be able to get back to the things you love once you’re recovered. I’ll be praying for the pain & swelling to subside ASAP. Your body knows how to heal, & those symptoms are protective so you don’t overdo & so you’re careful w/ that part of your body. :smiling_face:

Please keep us updated about how your recovery is going. :hugs:

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Fantastic! You are now in a place to heal which takes time and patience. No judgement for 6 weeks minimum. Be gentle with yourself!

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I hope that you heal well! Sounded a tricky case with lots of compression & nerves in the way, that might well cause lots of irritation with the nerves while they heal, so be prepared for that. Take care of yourself, hugs & prayers :hugs: :pray:

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