My ES Journey

[Cjrunner1]

Hi Everyone!

I was diagnosed w/ bilateral ES 1.5 years ago by my dentist. When I was diagnosed, I was scared out of my mind after reading about all the possible complications from ES. After seeing several doctors. I ended up being referred to Stanford Audiology & Dr. Damrose, but he was fully booked pretty far out so I made an appointment w/ his associate, Dr. Dewan.

Dr. Dewan’s surgical approach didn’t feel right to me. She did give me an injection in my neck which didn’t help at all. I went back later to see Dr. Damrose. I was also referred to Dr. Samji whom Dr. Damrose mentored.

Long story short, COVID-19 hit & prolonged my follow-up to discuss ES surgery because Dr. Damrose had to serve military duty out of the country due to COVID-19. My insurance wouldn’t pay for me to see Dr. Samji who is in San Jose, but I had full coverage with Dr. Damrose. I finally was able to get my surgery scheduled & yesterday I had my surgery.

As I am writing this, I think it is very important for whoever reads my post to know how stressful this entire journey has been. I had pain on the left side of my face, pressure behind my eye & on the left side of my face, down my neck & behind my ear. It was an occasional sharp, stabbing nerve pain, but the pressure was constant. I have not been able to sleep on my left side for the last 1.5 years. I have been literally suffering for the last year & a half. There are no words to express how bad it’s been.

Yesterday I underwent my first surgery by Dr. Joseph Damrose at 1 pm. When it was removed, my left styloid measured 6-3/4 cm (about 2-3/4 inches). See picture below.

Immediately after surgery, I felt relief from the pressure & like the stress from the last year & a half had been lifted off of me. Dr. Damrose was exceedingly patient, kind & gentle throughout this whole process. He answered all my questions & helped me understand why I was having the symptoms. He was very honest about the fact that surgery could help relieve them but might not cure them. His team made me feel extremely comfortable throughout the entire surgery process which was very important to me because I was alone due to COVID. He blocked out 3 hrs for surgery but finished in 1.5 hours & told me it was a textbook surgery.

Immediately after surgery, I was pretty groggy. The IV pain meds kept me out of pain. I also received an injection of Decadron to help give me some longer term relief from swelling. At my request, I was sent home w/ Norco for pain.

Today, I have some soreness in my neck but I’m able to eat & drink. I have a little trouble swallowing so am eating softer foods.The pressure in my face & neck are gone & my other symptoms have decreased dramatically. I’ve been able to take only Tylenol for pain & have been using ice intermittently.

I’m so impressed w/ Dr. Damrose’s approach & can’t wait to have my other styloid removed. I feel like I’m on my way to getting back to life as I once knew it. The anxiety & stress leading up to the surgery was way worse than the surgery. Today I’m very happy, relieved & thankful. I’m excited to go home tomorrow & rest up & heal. I feel like Dr. Damrose has given me a huge chunk of my life back & I’m so grateful. He is AMAZING at what he does. I highly recommend him if you are suffering from ES.

[Isaiah_40_31]

Cjrunner1 styloid & post op images:

[Jules]

So pleased that you’re out of surgery & have noticed improvements already! That’s great! Very good to have another positive recommendation for a doctor too
Not sure if you’ve read any post-op recovery stories & advice, but it’s best to keep semi-upright as much as you can to help with swelling, so best to sleep propped up, & ice your neck too, hopefully the meds you’ve had will help too! And it can get worse in the next few days, so don’t get disheartened if you have some rough days, but hopefully all will go smoothly!
Hope you can get plenty of rest & be taken care of! Keep us posted how you get on & God bless , Jules

[suzb80]

It’s wonderful that you have such a positive experience with your surgeon and now the surgery!

My 2nd and 3rd day were probably the most uncomfortable – I suspect all surgery meds had worn off by then. But ice and pain meds kept things under control for me.

Best thoughts for you going forward. This site is super helpful throughout the process.

[mouse]

How lovely to hear of your positive experience - thank you for posting. It gives those of us waiting for surgery a boost.

[Cjrunner1]

Ooooh man am I sore right now! I just got home from a 4 hour drive and had an emotional break down. I am in so much pain right now I need to just get a grip. This is 48 hours post op and I’m hurt more today. I was feeling wonderful and now I’m not. Lots of pain when I move my neck and swallow.

[Isaiah_40_31]

Those symptoms may hang around for a couple of days. A four hour car ride & having to sit in one position for so long may have been a little irritating to your surgical site. Ice often today & REST!!! Tomorrow will likely be a little better since you’re back home & can better do what you need to in order to be comfortable. If you have a lot of break through pain between pain pills, ask your doctor if you can take Tylenol, Advil or half of an additional pain pill to help tide you over to the next pain pill.

I’ll be praying for you to get through this period quickly.

[Jules]

Hope that soon settles, not surprising it’s worse, keep on top of the pain meds, don’t lay flat & take it easy! Praying for it to improve

[Cjrunner1]

I feel so foolish I was so happy feeling like wow that wasn’t bad! The last 24 hours have been awful.

[Cjrunner1]

Day 3 post-op. Woke up sore, throat feels swollen on surgery side. Pain meds every 4 hours. Norco, ice packs and cold water are my friends. Exhausted.

[Isaiah_40_31]

You’ll turn a corner toward the end of this week when the pain and swelling will begin reducing & you’ll begin feeling better. You’re in the hardest part of recovery right now. Rest & ICE, rest & ICE, rest & ICE. Let your family FULLY take care of you. Praying for the days to pass quickly & for you to start feeling much better ASAP.

[Victoria99]

So glad your surgery went well. Dr Damrose did both my styloidectomys June 2019 & Sept 2019. He is a great physician!!!

[Jules]

Hang in there, it will get better…gentle hugs

[Cjrunner1]

It’s been a roller coaster, swelling, healing and emotionally draining. Im getting through this I am. Determined. #EScantakeahike. Getting my life back!

[70melvin6]

So sorry that you are in pain. I know how you feel. Just remember that this kind of surgery is very invasive and takes time to heal. I also traveled 6 hours to have my surgery. I have never been a pill popper but PLEASE do not hesitate to take pain medication if you need it. Get lots of rest and ice as often as you can. Sending you lots of positive vibes.

[Cjrunner1]

The pain pills are making me sick. I choke on them because they’re hard to swallow. Dr gave me liquid pain meds. Thank you for your positive vibe.

[70melvin6]

Good, I hope that the new medication works. The first pain medication also made me nauseous so I switched. I’m not sure who in monitoring your pain but I had to go to a pain specialist to keep my pain under control. Because of all the new restrictions with opioids doctors have to monitor their patients.
Because my surgeon was 500 miles he couldn’t monitor me. Thus the pain specialist. He was very helpful and was able to help me keep my pain level down. Remember that your surgeon cut through a lot of nerves and muscles and this all takes time to heal. Be kind to yourself, get lots of rest and try to take one day at a time. You WILL get better. You can PM anytime. Sending you a big hug.

[Cjrunner1]

Day 6.
Today is the first day I woke up and feel somewhat normal. I can swallow without major pain and I want to get up and move. My swelling in my neck looks like it’s decreased some however I do have pain in my neck and under my left ear at my incision site. Ice, pain meds and pillows are still helping a lot. Feeling nauseous when I move around to much. Going to try to take a small walk today.

[Jules]

Good that you’re feeling a little better; I hope that it carries on improving for you…

[Isaiah_40_31]

HOORAY! Glad you’re feeling better. Sorry for the nausea. Not sure why you feel that unless your inflammation is somehow affecting your inner ear. I hope you do take that walk. It’ll feel AMAZING!