Hi Everyone,
I’m a 35 y/o woman with ES. It is bilateral but I only have had symptoms on the right side (where the styloid is 1.1 cm longer than the left side).
I had the phone consult with Dr Samji on Tuesday and it went well. I live in SF and couldn’t make it to San Jose for the meeting but it didn’t really matter. Dr Samji was very nice and answered most of my questions. I’m trying to schedule my surgery for 11/11 but haven’t heard back from Lauren (the medical assistant). She’s not the most responsive but if I don’t hear back by Tomorrow, I’m just going to call her.
Dr Samji said he’s done more than 350 surgeries now and about 90% of symptomatic patients get relief. I’m very excited for this surgery as physical therapy, acupuncture, massages and body work haven’t worked.
Sending good vibes to all experiencing pain, anxiety and other symptoms - I hope you get a diagnosis and solution soon! It took me over 1 year of ENT, oral surgeon, orthopedist meetings, MRIs + 4 years of chronic pain but seeing the light at the end of the tunnel and really happy I didn’t give up and kept advocating for myself!
Welcome to the group! Well done being your own advocate - is there any other way?
You sound like you have a grasp on patience and trust - crucial for recovery! Plan on binging on something good on Netflix and start planning recipes with soft foods. Maybe if you have time, you could even freeze a dish or two. I’m sure San Francisco has lots of places with good soups if not
11/11 sounds like a lucky number - hope it works for that day!!! Keep us posted!!!
That’s great news that you are on your way to getting that styloid removed! If you’ve not already read up on what to expect after surgery thete’s lots of info on here, you can use the search function. And getting stocked up with ice packs & a wedge pillow as well as soups or smoothie ingredients. Let us know when you get a definite date so we can pray for you!
Thank you! There is no other way, SewMomma! Even my very supportive husband didn’t think anything ‘serious’ was going on. I noticed you had a bad ENT experience, I did, too - the typical “open up and say 'awww” method followed by “you’re the picture of perfect health” The Dr that diagnosed me (Dr. Bai at CPMC in San Francisco - love her!) was also willing to do the surgery but I chose Dr Samji because of his experience with these cases (over 350 vs none).
I hope you’ve found your way back to sewing.
Thanks for the well wishes.
I have my CT scan scheduled for the 7th, moving forward to see Dr. Samaji. I agree Lauren is not very responsive, just figure she’s super busy. I live in So Cal now but raised in the bay area. I hope you are ok with the fires out there.
Yep all that is correct and I also “fit the profile” of a tired, frazzled mom so it must all just be stress. Sigh.
Wise choice to go with the more experienced guy. I bet your local ENT will be super supportive with follow up in the future and you guys can discuss how well you’re doing!
I most definitely am sewing my kids Halloween costumes. That’s the best. And this year I plan to enjoy their candy too, lol! Last year I ate none. How sad is that?!!!
Great news about your phone consult. I’m sorry to hear about Lauren though. Maybe she is having to deal w/ the surgery center Dr. Samji uses & they’re not getting back to her w/ a date? Who knows. It would be nice if she’d let you know what’s going on though.
I had my first ES surgery on 11/17/14 so not too long after the date you’re hoping for. I had a “blender” TG dinner that year - the whole meal in a blender w/ almond milk. It looked nasty but tasted sooo yummy!
Looking forward to hearing when you’ve got your date booked.
So far in the South Bay Area we just have smokey skies. It may be worse in SF because that’s closer to the fires. Just depends on wind direction. We had some wind today that would rival the Santa Anas in So Cal. CRAZY!!
Hi Linj21!
You are well on your way to recovery and I wish you all the best.
11/11 is indeed a good day - its the day my son was born (and of course Veteran’s Day) I will be sending you positive vibes for a great outcome.
I had my first surgery almost 5 months ago and though I was a bit hesitant to do the surgery for the right side, I am now ready and trying to schedule something sooner then my February date. I got through it with support from this site and ice packs. I used two ice packs in constant rotation. Other then Tylenol I didn’t need much in the way of pain meds. My surgeon did not prescribe steroids so the ice was also key to keep the swelling down.
Hi all! Sorry I’ve been MIA - my surgery was moved to 11/25 so tomorrow is the big day! Dr Samji is hopeful that the surgery brings relief. He said 85% of his patients get good results when I went in for my pre-op on Friday (which I didn’t know was a ‘must’ now). He also mentioned something that stuck out to me - he doesn’t let his Eagle patients do chirproactic care. I went to a few for many years and the whiplash of the neck adjustments may have been what made my symptoms come on. This actually makes sense and I have only been doing body work (massage and phys therapy) and acupuncture the last year.
I hope the 1.5 hour drive home isn’t too bad but will bring lots of pillows and drinks for the road.
Will let you all know of my progress throughout the week.
Happy Thanksgiving!
I’m so glad your surgery is done & hope everything went perfectly. We will look forward to reading your next post which will hopefully have great news about a smooth surgery & recovery.
Hi Everyone! Hoping you all are having a lovely holiday break. Tomorrow will mark the 5 week post-op mark for me and I wanted to give a quick update. I must say that this recovery has been a doozy but having people’s support (be it at work, home or online) has made it bearable.
The first 2 weeks were pretty awful - not a lot of pain but a lot of discomfort and anxiety from the feeling of a ‘hole’ in my neck and things being moved around. It turns out that my case was very ‘extreme’ as I had a discontinuous styloid bone with ossification along the thyrohoid ligament from the skull base to the hyoid bone. The largest fragment was at the mid thyrohoid ligament and measured aprox 3 cm. This wasn’t notable in the CT scan and Dr Samji said in over 400 ES surgeries, this was the first time he had seen this condition. It took him a little over 2 hours when usually he does this surgery in ~90 mins. My incision was fairly big because the dissection of the stylohoid and stylomandibular ligaments was “very deep” … I guess this makes for a cool scar, or scar story at the least Swelling has gone down considerably (I don’t look like I swallowed a tennis ball) and I’m recovering from First Bite Syndrome which was pretty intense up until 2 days ago (I think because the bone was deep onto the hypoglossal nerve).
I have not fully regained sensation above the incision - my ear is slowly coming back, along with my cheek and neck but it’s still numb and tender. The feeling of the nerves reactivating is a very weird one but has been manageable. I also don’t feel pain in my throat anymore and the kink in my neck is gone (FINALLY!) I have in contact with @Isaiah_40_31 who has been SO helpful and supportive and have come to the conclusion that this recovery is going to take time and some days will feel good and other like set backs. Thanks to everyone who have shared their stories, support and insight. It helps!
Hoping everyone a diagnosis, successful surgery (if applicable) and a pain free 2020!
I also need to share that Dr Samji said that chiropractic care is no longer allowed for me. He thinks the whiplash from neck adjustments may have aggravated my condition. I had stopped going to chiropractors last year (2018) and think that was a good decision as it never seemed to help my symptoms.
Glad that you’re recovering & accepting that there will be ups & downs- your surgery sounds pretty major! Interesting that not all the calcification was visible on the scans too…
I had a whiplash injury many years ago & have had neck pain ever since…I was given treatment by a doctor, traction & manipulation, which made it a whole lot worse. So it’s interesting that Dr Samji feels it’s made your neck problems worse! Was it your case in particular do you think, or that chiropractic treatment isn’t good in general?
Keep healing, & best wishes, hope that 2020 is a better year for you!
@Linj21 Thanks for the update.
I am 3 weeks post op for external removal right side - my second surgery. The styloid was 4.5 cm, thick and hard and so glad its out!
The 2 month mark was a turning point after my first surgery with all of my crazy vagus nerve issues easing. This time its more painful but I have much less numbness than the first surgery - so I feel it more. Thankfully, I dont have the same vagus nerve issues. The skin pain is intense, much like pins and needles of sleepy nerves coming alive. I have found topical lidocaine to help tremendously. I do have FBS but intensity varies. Its good to know that yours has eased.
All the best to you for a speedy recovery and a healthy and happy - and pain free - 2020.
BG
There is no other way, SewMomma! Even my very supportive husband didn’t think anything ‘serious’ was going on. I noticed you had a bad ENT experience, I did, too - the typical “open up and say 'awww” method followed by “you’re the picture of perfect health” 
The Dr that diagnosed me (Dr. Bai at CPMC in San Francisco - love her!) was also willing to do the surgery but I chose Dr Samji because of his experience with these cases (over 350 vs none).
Swelling has gone down considerably (I don’t look like I swallowed a tennis ball) and I’m recovering from First Bite Syndrome which was pretty intense up until 2 days ago (I think because the bone was deep onto the hypoglossal nerve).