Sorry for my slow reply. We were camping this week & just got home.
The lidocaine gel sounds like a not so fun adventure. I’m sorry that it didn’t give you at least a little relief for the nastiness of trying it!
The phone number I sent you is the office number for Drs. Chen & Judson. I’ve included a link to the full US ES Doctors’ List below.
I’m glad your sister is able to be a medical resource for you. Hopefully between the two of you, you’ll find some one experienced with ES who will be able to properly take care of you this time. I’m glad Cupcake5 is being helpful as well. It’s always good to have other input & hear other people’s experiences.
Hi everyone. Hope ur all doing well! Checking back on the site as im preparing for my next surgey. Left side is acting up terribly! But surgery side feels great! I just wanted to let you guys know that i called every single DR on that list for NY and CT. Noone in CT handles it except refers you to the idiots at yale new haven hospital who are not familiar with eagles in my experience. And the drs in NY when i called i had to explain what eagles was so i gave up. Thankful for finding Dr Cognetti bc of this group. Hoping everyone is hanging in as this has been the worst thing ive ever gone through in my life. Im pretty sure im about to loose a promotion at work which ive been working so hard for bc of this illness has affected my job skills, plus missing so much work. Its very depressing. Im holding onto the smallest glimmer of hope that i could someday get back to my almost pre-eagles self so i can work hard again and back to my life. Living in pain is not a life. I was good for a few weeks after surgery and im back to the couch bc the left side started to really act up plus stomach issues. A few more weeks a few more weeks. Hang in there everyone. Just keep praying for answers and help to get better Xoxox
I hope that your second surgery goes well, & that you’ll be free of pain. It’s so frustrating when the second side worsens after the first side is removed, but at least you’re able to have the next op with an experienced doctor. I hope that it comes round quickly for you, & keep strong,
What great news that your first surgery was so successful but sad that you’re in so much pain from the remaining styloid! So glad you’ve pursued that second surgery. You WILL feel better once that styloid is removed. Remember that it will take some time after surgery before you feel great again.
Well Shalom imunique724!!! This sounds somewhat like what I went through back in 1987 through 2004. It was painful and I was being sent down several rabbit trails. It was so hard. Suffered allot but, Yah was so good to me because HE ordered my steps out of Houston, TX. and I moved to Oklahoma in 1997 and I was finally able to get diagnosed and a week later, I had the surgery and my life changed completely.
I have been well for several years but, now I am having a little issue on my left side so, I think I just need to be scoped and see if the styloid is calcifying, again…Only thing is, I could not get an appt. with the doctor who finally diagnosed me till Jan 8.
I hope I can maybe get bumped up??? Thank you for your encouragement
Hang in there, one day, one minute, one second at a time. I had to live like that for 17 yrs and it was hell on earth. I prayed allot and I finally got a diagnosis. I had the surgery and I am pain free. Last week I had some sensation but, not that bad. In Jan. I will see my doctor that diagnosed me to maybe scope me to make sure the styloid is not calcifying, again. Surgery and removal of the styloid process, I think is the only way this will go away…
Lol! No I don’t know why you got a email. I was just thankful to see a person post they are symtom free after 3 years. I had surgery on my right side for eagles ,but have had some issues so I’m kind of concerned to have the right re-done is what I’m being told. I still need the left side done. It was refreshing to see your post!
Overcomer1-
Since you have bilateral ES, it’s very common to still have symptoms after your first surgery. The remaining styloid will be causing problems as long as it’s still present. Often the symptoms get even worse after one styloid is removed. They can be on the opposite side of your body from where the remaining styloid is which can be confusing & make you think your first surgery was unsuccessful.
I’m not sure how long ago your first surgery was, but until you have your second styloid removed, you won’t be able to know for sure what’s causing your current symptoms.
I hope this is helpful info.
Just to give everyone an update! Finally almost pain free after years!
Had surgery for ES August 24, 2017 and still lived in pain until just a few weeks ago Nov 24, 2018. After much physical therapy, etc finally went to pain management (I don’t take any pain pills)… They put me on Gabapentin nerve pill mid August - finally by mid November it worked!
Seems to be reattaching the nerve damaged with scar tissue from when the ES bone was poking the tissue for over 2 years. Maybe we finally found something that can help after surgery!! God bless all of you and I hope this info might help somebody else.
Thank you, didixon! How wonderful for you to FINALLY have relief!! Some medications do take time to work, & the dose needs to be tweaked for awhile to get the medication to the right level for it to be effective. Sounds like you’ve had success there.
Finally after 2 years in total extreme pain. Been 1 yr 4 months since surgery. So if others are still in pain since surgery - I would recommend trying the Gabapentin nerve pills which seemed to finally solve the problem, but it took them 4 months to work too! Just never give up is what I’m trying to tell people! I just knew someday I would find a cure for the pain afterwards! Lord knows I went thru it all - physical therapy, needles, etc. , but this finally seems to help it all!
So wanted to share with everyone still living in pain after ES surgery!
Like one Doctor said to me - most people would just give up (and take pain pills) I never gave up and didn’t take more than melting an aspirin in my mouth to kill the pain. So I hope Gabapentin might be the cure for those with tissue issues after surgery - but I have been on 3 of them a day for 4 months and finally – I’m about normal now! Yeah!
I am looking at surgery. The symptoms are painful and is a real quality of life issue. Did you have both done at once? Internally or externally. Thank you for your support and for sharing your story.
This topic was informative to me. It is so good to know there is light at the end of this.
I can’t even imagine what my “normal” would actually be. I think back and relate symptoms from my teenage years, and I am now 54.
Hi Rearcar, Maybe I overlooked this, but I didn’t notice your having been sent for post-op imaging. Have you had a CT since this pain has recurred? I hope that you find answers very soon.
Xoxox
that you’re in so much pain from the remaining styloid! So glad you’ve pursued that second surgery. You WILL feel better once that styloid is removed. Remember that it will take some time after surgery before you feel great again.
