I’m sorry for your struggles w/ protocol, DeeG. Hopefully “minding the system” will pay huge dividends for you.
You go boy!
Update, literally just got out of my neurosurgery appointment and neurosurgeon believes styloid is elongated, bit he was overruled… What? Who do I send films to so I get another measurement? Putting me on a new med. New potential diagnosis is glossopharyngeal neuralgia. At least I can depend on a new diagnosis every 5-10 visits. Keeping it interesting!
Anyone been prescribed Tegretol? Does it act in same manner of or make a person feel like on antidepressant?
Some members have had success with Tegretol, it works as a nerve pain medication in low doses.
So sorry that you didn’t get anywhere with your appt.- ES is one of the listed causes for GPN, so it’s not really a new diagnosis! Why was he overruled? Was it the measurement which was disputed or the fact that this is classed as elongation? The doctors do disagree on what’s classed as elongation- anything from 2.5- 4cms!
Do you know what your styloids are measured as? Otherwise are you able to send your scans to one of the experienced doctors listed on the forum?
Thinking of you…
Dr. Samji does his own measuring. Not sure about Drs. Cognetti, Newman or Milligan. I think Dr. S doesn’t always trust the radiologists to be accurate. I’d go for a second opinion via phone consult w/ one of the doctors listed above. Dr. Samji feels anything longer than an inch (2.54 cm) is elongated thus I think he’s less conservative than some of the other doctors.
As Jules said, ES can be the cause of GPN thus having the styloid or calcified ligaments or both removed is also the remedy.
Hoping you can get a better idea of your situation soon!
I think ENT overruled Neurosurgeon or it could have been radiology, not sure… My confidence in their measurement is low. I think they like diagnosing me. I didn’t have any real expectations for this appointment just checking a box so it was a productive day. I’m going to try the injection for the neck/shoulder pain, got my claim filed (found out my previous advocate passed away) and got a doctor to verify his initial diagnosis. I’m completely satisfied. Now I can reply to Dr. Samji once I follow the steps for loading the films. And I am getting the greatest information EVER from this site! I am blessed to have found you all, blessed to be able to work and blessed to know it is not a personal attack on my sanity, it is a condition that I will be rid of pretty soon. Remember, I have seen ENTs over 20 years and only recently heard of ES. If it was still diagnosed as Meniere I would likely lose all hearing in the right ear so I’m glad that diagnosis has not come up again. Oh, styloid measurement was right on the margin. I have to look through mountain of documents to find exact measurements again. Finally got doctor to show me in a way I could see. Looked pretty long, but I have a stake in the game so I’m biased.
Thank you! I will persist. You must really know the VA. The system works great for more common illnesses, diseases or conditions… Enough said…
How are you doing? Haven’t heard anything in awhile! I hope no news is GREAT news (i.e. you feel good & are too busy to post!).
I was able to sit through entire Avengers movie this morning and it was worth it. I hurt before the movie because the commercials were super loud, but movie sounds fit so it didn’t hurt after movie started. Feeling good because I know I’m going to get healed and it is just going to take persistence and patience. A load is off my shoulders knowing I’m not a crazy hypochondriac. If no one has told you all you are great comforters I’m saying so. Blessings to each of you!
That is so great! Glad you were able to enjoy the movie. I’m anxious to see that one, too! I have to wear earplugs when I go to the movie theater these days & even for worship time in church. I don’t know if my hearing has become hyper sensitive or if I’m just getting old & less tolerant of loud noise. Whatever the case, earplugs are my friend.
I’m so glad you’re getting critical support from your friends on this forum. We are all here for you as long as you need or want us to be.
So glad that you were able to do something like this- and pleased that being believed has lifted a weight off you, I remember that feeling well!
It was fun!
Getting injection Friday that should resolve glossopharyngeal nerve pain. Will update on how that goes.
ill update more soon. but ive got finals tomorrow and friday so thats where my focus is. my left side is beginning to act up more everyday. its like its jabbing me under my jaw and making things very uncomfortable. the right side feels great. healing well. ive been massaging the scar and the muscles underneath as often as i can without causing too much pain. trying to break up scar tissue so that i might regain feeling a lil sooner. ill update more when i can
DeeG - i hope that injection does the trick to give you much needed relief. excited to hear how it goes.
Thank you, Shanef89! Totally forgot you’re in school even though that’s been the topic of several of your posts. I hope you do amazingly well! Good for you for persevering through pain AND surgery! I extra applause for your effort!
Sorry your remaining side is acting up.
Looking forward to an update post finals.
Hope all pain stays away and you are able to concentrate and remember all you studied. Agree with Isaiah_40_31 great perserverance with the challenge of such pain! Hoping you do very well with finals.
Oh my goodness, the injection hurt! The injected below c7. Strangely, nurse was reading my chart and told me he has ES. His ENT doesn’t believe in ES either so when he has flare up he pushes styloid into better position and pain goes down. His styloid is infringing on jugular. Don’t feel anything new yet, but could take a few days to ease pain from what I’m told. My low/mid back is very angry about this though! Also, I cannot eat anything cold or crunchy I had to fast 6 hours so I was hungry, but couldn’t eat my salad because it hurt my teeth. Has anyone had a shot below c7? Did you feel worse before you felt better?
Sorry that this has been so painful, hope that ut does improve soon for you! Interesting that tge nurse has it too, at least you had someone sympathetic with you!
Curious that you have tooth & lower back pain from the shot. However, many nerves that innervate our upper & lower bodies come from the spine so it’s possible that pressure from the fluid introduced by the injection is putting pressure on the nerves causing your current symptoms.
I think back reacted to my tightening up when that needle went in so deep. Doctor told me he had to go deep, but no one really knows what it really means until you feel it. Felt much better today! Haven’t tried cold food, but had ice in water and didn’t bother me. It’s more when I bite cold or hot food. Was able to get out in yard so that was great. Might have overdone it, but I won’t tell if you don’t. Still have main symptoms, but excess pain in the neck feels maybe 50% better. All days I live and work are good, but this one was a little better than usual so I’m glad I got the shot. The ramped up pain of last 3 years is down to what it was for 20 years prior so I don’t feel so panicked. Hope you are having a good day also.