*** VERY LONG READ- WHAT IVE LEARNED**** MOST IMPORANT PART 
I have been on the forum non-stop. Since only discovering my diagnosis ~ 3 weeks ago, after I confirmed my diagnosis with Dr. Middleton in Florida. I keep contemplating on when and what to post. But given my recent conversation with Wendy ( whom I cannot thank enough for her support ) I figured I’d start here.
((( I plan on adding more info on my sx and journey later. For starters, I am a 36 yr old female from San Antonio Texas whose been looking for answer the last 2.5 yrs and have traveled to 3 different states to get here, seeing over 28th different specialists at that. A story for another time
The Left styloid was removed with Dr. Osborne on the 25th. The procedure I’d say was very successful. I cannot speak highly enough about both Dr. Osborne and his team. The procedure took 3 hours, due to my small frame he did have difficulty with removal. The top half of the styloid needed to be removed piece by piece but he was able to removed everything from the base of the skull. He said in the next 5 days there would be a lot of answers. I’m normally am one to have a tough recovery, swelling always tends to be 10-fold with any sort of surgery. However, my swelling 5 days out is completely gone. The “head bra” has been my worst enemy, but it helped tremendously with swelling. Had to keep that sucker on for 5 days straight! I did use my pain meds for the first day and half the 2nd day, but since have been sticking to only Tylenol. I never had a feeling of something in my throat till after the procedure, Dr. Osborne felt it was just throat irritation but after the drain removal the feeling was gone. The incisions have some tenderness, but them and the ear are still mostly numb. He stated come day 3 he anticipated possible palsy due to the movement of the nerves, but that it would resolve in the few days to weeks. Unfortunately come day 3, I did indeed realize my lower bottom lip (right side) doesn’t match my left lips smile. (Husband is finding loving humor in this- its truly pretty small). For now the biggest discomfort I have is jaw pain, worrisome because that fear of TMJ and trauma is what started all this. I did have a dizzy episode day 2… but thankfully it resolved within a few hours, I mention this because of a recent post I came across.
Yesterday…
In the last 5 days its really hard to say what I am feeling.( still have my left styloid to be removed) The throbbing nerve pain in my teeth and jaw is gone. I do have moments when I feel tenderness there but its not the debilitating nerve pain I suffered from. My resting heart rate of 110 is now 78. The tinnitus is definitely very must present and perhaps a little louder. We attempted a causal 2 walk mile yesterday that did indeed leave me pretty winded, I have since stuck to napping and allowing more time to rest. I don’t know if is in my head or not, but now there is 100% awareness to left styloid when I was 100% sure my right was the one to target.
Today…
I had my left styloid removed roughly 10 hours ago, 6 days after my right styloid removal. My right at this point is still having mild jaw pain, but the bruising is apparent so it makes some sense. The left styloid was the lesser of the two in location and size so Dr. Osborne stated everything went smoothly. I am not experiencing any pain at the moment but am also taking my pain meds every 6 hours as prescribed. I currently have mild swelling but my head wrap is doing a great job keeping that controlled. Zero drainage in my tubes. Im sure there will be more swelling tomorrow, hopefully no need for stronger meds. The biggest discomfort for today is 110% my throat! Ibuprofen is allowed since I’m done with surgery and having smoothies and popsicles has helped. I dreaded re-agitating my throat after the first side but was glad things were done 1 at a time. The incisions are about 2 inches in length, they start at the edge of my face just before my ear canal down to about an inch below the mandable corner. Stitching looks great and so far google photos show minimal visibility but that is the least of my concerns.
WHAT I LEARNED- Dr Osborne shared with me that the incidence of 4% of people is a lot closer to 8%. That the majority of these cases are found via dentist and chiropractors. Another key issue is once the scans are done to many radiologist classify findings as “normal” and the patient never finds help from there. ((( I had multiple CTs x rays, mris and panos done, I was also told it was normal from various specialist, that’s when we flew to Florida to see Dr. Middleton for confirmation on his ordered CT))) He also expressed that not having styloid removal was not addressing the big elephant in the room. That’s what made my decision among others to move forwards with surgery as opposed to CCI tx and prolotherapy. He also expressed that a good 40% of people with ES have an underlying connective tissue disorder! ((( I just found out I had a 10 degree rotational aspect in my ribcage… “too small to be considered scoliosis” - per spinal specialist, yet its what caused my snapping scapula sx i also had a few months back!— Which is you guessed it, caused by Scoliosis, its what also LEAD ME TO FINDING EAGLES!) - I Mention this because of a recent post about shoulder pain. one very important thing he said to me was…ONE SYMPTOM I SEE ON ALMOST EVERY PATIENT IS THE “FEELING OF IMPENDING DOOM.” When he told me this, I could no longer hide my fears, he saw right through the pain and trauma, I immediately was consumed by my emotions and burst into tears. It was this statement that convinced me that he was going to be the one I needed to see. When I thanked him for working me in on a SAME DAY apt on a Friday afternoon at 6:00PM after a full day of surgery, he told me a story of a 18 yr old patient who took his life. He stated " I couldn’t get to him in time" - I have no words. What I can tell you, even before my recovery, I know this Dr. has saved my life and a found faith I never had before. He may not be easily accessible but I cannot stress enough how much I would recommend just a telemedicine appointment with him to finally have your questions be answered, that alone can help the healing.
Protocol- is a 1 day follow up to remove head wrap and add " head bra" 2 day follow up to remove drainage tubes. Head bra is to be keep on for another 48 hrs. ( Wrapped a good 5 days in total.) He stated I didn’t need to sleep elevated but I still did. I also never used any ice. ( head wrap was too thick to help) He does prescribe pain meds which he stated most patients only needed the 1st day ( and has been pretty true for me) and weeks course of oral antibiotics. After the head wrap is removed he advises on leaving the incision site open with only a minimal topical antibiotic OTC cream to be applied AM and PM.
There are plenty of ups and down moments but at this time I can genuinely say I’m happy. Each day is a different day and I am cautious as I know there are still plenty of painful days ahead. I am so thankful for having this community to help me through this process and am open to any and all questions. Thank you to all of the amazing, caring, intelligent people who contribute to this forum. This forum is truly saving lives.
