Hi all! I’m so happy I found this website. I have had pain under my jaw & neck for 5 years, it came on after my oldest was born. I have a blood disorder which results in chronic ear infections (possibly related to ES?) so I started seeing a hematologist at this time & he prescribed me Tramadol for the pain. I am still on it after 5 years & now my body needs it or I withdrawl but that’s different story. Over this time, I saw so many doctors & was referred to 4 different ENTs that never did anything but look in my ears. No scans, nothing. After my hematologist pretty much gave up & has since referred me to pain management, I found my own ENT in Twinsburg, Ohio. She is AMAZING & after a CT scan order at my first appointment, I was finally diagnosed with Eagle’s Syndrome in the middle of October '17. She also said I have the longest SP she has ever seen (I’ll find out how long on Friday & update) I’m having surgery (external) for the right side in 5 days in Cleveland, Ohio. I didn’t Google anything until last night as my doctor suggested I didn’t because it would just scare me. I watched a video of the surgery & it freaked me out. I’m 29 year old mom of 2 girls, ages 1 & 5. I’m nervous about recovery & the pain. Is it bad? My husband is asking if I really want to get the surgery, do I? Does it help? After doing one side, how many do the other? My doctor told me I have a 50/50 chance of it helping my pain but I’m optimistic. After reading other’s experiences I also wonder if my aura migraines (migraines started 4 years ago but auras began almost a year ago) are because of ES? Sorry for rambling, I just have a lot of questions!
There’s lots of info about what to expect from surgery, and links to discussions, and the past discussions are searchable by topic so you can have a look through some, which hopefully will help. No surgeon will gaurantee that your symptoms will go, but most members find that they’re better off after surgery. The most important thing is to make sure that the surgeon is experienced, and removes as much of the styloid and any calcified ligament as possible, as close to the skull base as they can, and smooth off any remaining piece- when people haven’t had good results it’s often been because the doctor hasn’t removed much, or they’ve even just snapped a bit off.
I’ve had both sides done, and it wasn’t as painful as I’d expected- most people are used to living with pain anyway, so to get rid of some symptoms is great! I found I couldn’t open my mouth wide, and chewing was painful for a couple of weeks, so I had soft foods and smoothies, so it’s a good idea to get stuff in ready for that in case. (But second time around I didn’t have any problems!) . To avoid swelling it’s a good idea to keep propped up, so a wedge pillow or V shaped pillow is a good idea, and ice packs as well. I didn’t lift much for a few weeks, so if you can get help with your girls, that’ll help your recovery. Seamom did a suggested shopping list- here’s the link:
Most people go on to have the other side done (for some reason the other side sometimes seems to get worse after the first one’s done!), but that shows that the op can’t be that bad or people wouldn’t do both!
I’m sure your doc has talked through the risks; there have been a few members who’ve had tongue weakness, and facial droop, but that’s not common, and a couple who’ve had arm and shoulder sickness- with time these have improved.
Most of us get to the point where the ES symptoms are affecting quality of life so much that we’re happy to get the op!
BTW- ear pain and migraines are fairly common symptoms, so hopefully you’ll find an improvement.
Hope this helps and ask if there’s anything else you think of!
Thank you so much Jules! I have been doing a ton of reading and looking at old posts. It’s just sort of nerve wracking agree watching a video of the surgery, which was a HUGE mistake. Thank you for the list of things to get, I will be going this week. I’m just glad something is finally being done. I’m ready for the pain to be gone!
Best wishes for your surgery, and hope that all goes well! Let us know how things go
Thank you Jules! I will update when I am able to.
I am also a mom to a 1 and 5 yr old. I just had a external sugery 2 weeks ago. The surgery was easy compared to my other surgerys. My doctor also said i had the longest hes seen. Just under 7cm.
How long after were you able to drive & pick your chldren up?
I drove 5 days post op. I couldn’t lift my daughter until a week post op.
Doctor said no lifting for atlest a week.
Good luck I’m waiting on drs and insurance right now I’ll
attach a picture of my devil spikes to show you some monsters inside who’s your dr and does he take United Health care insurance let me know I have been diagnosed already I diffenetly have e s and have had it for about five years I love in Hawaii and know one is capable here in the islands so travel and suffering are in my near future so god bless you and your family and I’ll pray for you friend and god speed keep us posted on you progress Aloha. Big island buzz:)))))
So I’m 13 days post op & I’m feeling good! Still swollen & some nerves were pulled (not damaged) so my tongue is hard to move on the right side making eating difficult. The funny thing is, I had ZERO restrictions after surgery. I cound pick up my daughter, drive (but not while using pain meds). My doc is hopeful the left side won’t need done. Guess we’ll see in a few months!
Really pleased that you’re feeling good! It does take quite a while for nerves to heal, so be patient… don’t overdo things though, there’ve been a few of us who’ve done that & set healing back. Great news, keep well!
That’s great news! I had the same problem w/ my tongue. It did take 6-9 months to heal. I sympathize w/ the eating struggle. I had to use my finger or an eating utensil to move the food to the left side that got over to the right side when I was eating so I could move it around to chew it. I actually ended up having a lot of blender meals initially as small bits were easier to eat.