In this post, I am including the following information:
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.
How will IJV Compression be addressed at collar bone level?
Will both IJV’s be addressed during surgery, or just the right side?
How and when will you address the Left side: styloid and IJV?
Will you remove the styloid to the skull base?
What methods might be used to keep IJV decompressed during surgery?
What happens if the IJV re-collapses after surgery?
Will you be measuring Intracranial Hypertension? How?
Semicircular Canal Dehiscence – do I have this on the left side as well?
When and with whom would I address the Semicircular Canal Dehiscence?
C1? - any issues?
Are my Carotid arteries being affected currently?
4. LIST OF MY DIAGNOSES AND SYMPTOMS: If you are interested (I have listed symptoms that may or may not be related to ES):
Traumatic Brain Injury / Concussion/Whiplash : Auto accident
Migraine headaches (since childhood)
Eagle Syndrome- Bi lateral
ES Bi Lateral (Confirmed)
Vascular Compression IJV (right)
SCDS- Superior Canal Dehiscence Syndrome (right),
- B. SYMPTOMS: (B= BILATERAL):
Brain Fog / Cognitive Function
Neck pain -B
Jaw pain (when speak, chew, yawn or still) -B
Tooth pain -B
Burning behind ear - radiates into helix -B
Pressure in throat- increases when lying down -B
Sense of “Strangulation” - increases when lying down on right side
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
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)
MENTAL HEALTH / OTHER?
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.