Hello all just a little backstory on me I have been suffering from ongoing pain in my neck arms and hands for the last 15 to 16 years. We first thought it was thoracic outlet syndrome which I was just diagnosed with last year but I’ve always felt like it was not my thoracic outlet but my pec minors only. So I had two surgeries back to back at Cleveland clinic by Dr. Caputo and had my pec minor’s resected. That did help some pain below collar bone only into the armpits. After my first surgery the headaches came on with a vengeance and so did the neck pain. I have it on both sides and my arms and hands are still affected. I wanted to continue looking to find something wrong and he referred me to just to see an ENT. On Facebook I am on a group member of an Eagles board and I noticed there are very sporadic symptoms for people. Finally had a CT scan and it showed elongated styloids. My doctor is at the Cleveland clinic Dr. Lamarre. Has anyone used him and had surgery by him? If so tell me your journey. Have you had any issues after him surgically fixing you and did it help? I have an opportunity to get an injection prior to Scheduling surgery for kind of like a diagnostic but I’m thinking about just jumping in and getting the surgery done because he even said that’s not even 100% that the shot will tell me yes or no that I need surgery. I just know that I am done with all this pain I’m having I have supraclavicular swelling my left more than my right. And the pain in my neck and hits that glossopharyngeal nerve with bouts of horrendous pain and when that comes on it scares the crap out of me. Anyone’s got similar symptoms?
Hi Carabear!
So sorry that you’ve has surgery already & that didn’t help- we’ve had a few members with both conditions or who are trying to work out which one is causing what.
Quite a few members have had GPN caused by ES- there are medications which can help with that which might be worth trying if you haven’t already? Like Gabapentin, Lyrica, Amitriptyline, Carbamazepine. There’s info in the Newbies Guide Section about them. Heat or ice can help a bit with pain, if your muscles are tense Baclofen can sometimes help, & sleeping semi upright can do a bit too.
The steroid/ lidocaine shot can help with the pain, but not always…some doctors do use that as a diagnostic tool, which is a bit of a worry as it doesn’t always work! if you do decide to go for that, it can be done under ultrasound.
I hope that you can find something to help while you decide about surgery.
What is GPN? I am on nortriptyline 100mg. Helps some but not a ton. On a muscle relaxer. Not much help there. Live with my ice and heating pads lol. I am going to try the surgery. Waiting on the doctor to get back to me with a ton of surgical questions. I have long styloids it is worth the try.
GPN is Glossopharyngeal Neuralgia. It can be type 1- electric shock like pains, or type 2- burning or aching, more constant.
Surgery made a night & day difference for me, Carabear708. I was pretty debilitated from my symptoms which were wide ranging. After surgery, I am fully functional though it took some months after each surgery to recover. I am so thankful! I had bilateral ES w/ surgeries in 11/2014 & 8/2015.
How are you doing? Have you decided to have surgery? If so, have you chosen a doctor & do you have something scheduled?
I will have surgery in July. No date yet waiting for them to call to schedule. My doctor is Dr Lamarre at cleveland clinic. I am severe pain everyday. Lots of neck pain and swelling.
I’m glad you have a doctor selected & hope your surgery date gets settled soon. Try ice to help w/ neck pain. If that doesn’t work, try heat or alternating ice & heat. I hope the time seems to pass quickly till surgery. I’ll be praying for you. 
Thank u very much.
Hope that you hear soon, gentle hugs: 