I’m sorry your symptoms are getting worse. It’s most likely the angle your left styloid is growing, how thick it is or both, that are causing it to be more symptomatic. I know how miserable that is!
Making an appointment w/ Dr. Endres just to meet him & talk about his surgical approach would be a good starting point. It doesn’t commit you to having him do your surgery.
Here’s a link to a post @Jules wrote that has lots of information, including a list of questions to ask a prospective surgeon (it’s toward the end of the post), which may be helpful for you:
To encourage you, we’ve had other members with your type of symptoms, & they did go away once the styloids were cut shorter.
I had the opposite of your situation. My left styloid was longer & angled inward, & most of my symptoms were on the left. My right styloid was a bit shorter but was thicker & growing nearly straight down but wasn’t as symptomatic.
Please let us know what you decide about staying close to home or traveling for surgery. I know it’s a tough decision.
@Val7426 I’m 2 days shy of being 3 weeks out from my surgery. Just had single styloid on right side removed.Some days I’ve felt great but many I’ve kind of felt on the bad side the last week and a half.
I still have trouble with more solid food.I’ve noticed some swelling still. On left side I’ve notice like a nodule back kind of under styloid. My neck feels swollen. More clicking when turning my head. Normal?
When ever I have to rinse and gargle after my asthma medication it seems the water just pours down my throat. It’s like a flood gate opens. Then I choke. Am i weird or does this happen to anyone else?
I feel like I’m complaining. I dont want to be doing that. So sorry. On top of all of this I’ve had severe belly pain for a long time. Monday the 12th Dr Rager is doing an exploratory hoping to find out why I’m in such pain. Wed I’m having MRI w/wo contrast to check out a meningeoma. It’s small but since my mother died of multiple brain tumors the docs think it best that I’m checked thoroughly.
@Sandys_Mom21 - I’m so glad you’re having the follow-up MRI to check on the meningioma especially since your mom had brain tumors. I’m putting your abdominal exploratory surgery on my calendar, too, so I can pray for Dr. Rager to be very observant during the surgery & note anything that seems abnormal. I hope he’s able to help resolve what’s causing your abdominal pain.
As far as your ES recovery goes, your swelling may last 4-8 weeks (everyone is different) so it’s not surprising you still have some pain & have noted swelling on the surgery side. Recovery is up & down & will be so for several months i.e. good days followed by bad ones then more good ones, etc. Eventually the majority of the days will be good.
Is the nodule you feel in your neck or your throat i.e. inside or outside? I’m asking because I could feel my left styloid under my jaw, & my right one below my right ear - on the outside. Some people can feel them inside in their throats.
This may be happening because the glossopharyngeal nerve which plays a significant role in swallowing, is often irritated during ES surgery, which may have happened in your case. As a result it isn’t currently functioning as well as it should thus swallowing liquids isn’t as well controlled as you’re used to.
@Isaiah_40_31 thanks for the insight on the swelling etc. The doc didnt quite give it that same length of time. The nodule I feel I notice from the outside. I had reach up to my neck because my neck felt sore and thats when I noticed it.
Now a sense of relief. I thought I
was drowning when I had to gargle after my asthma medication.
I’m blessed again to have a Christian doctor in Dr. Rager. He will meet with me before surgery for prayer. Some private time for God and us.
I think that you’re entitled to have a bit of a grumble, with everything else going on as well as recovering from the surgery! If the nodule is on the outside of your neck it could maybe be a lymph node, it could be inflamed following surgery? Feeling lymph nodes does seem to be quite common…
3 weeks is still very early days, so not surprising that you still have some swelling, if you can keep up with the icing that will help, and if the incision has healed over you can try some massage , @premedmom posted this helpful info: How to do Lymphatic Self-Massage on Your Face, Head and Neck
As @Isaiah_40_31 says, the glossopharyngeal nerve might have been irritated affecting swallowing, and the vagus nerve is involved with it too, & that’s commonly irritated with surgery.
I’ll pray that your surgery helps & for your MRI too; God is good providing you with doctors who will pray with you before surgery! Sending you a hug too
I think @Isaiah_40_31 and @Jules really covered everything. Three weeks is still early, and you could have some lingering swelling that’s impairing your neck mobility and affecting your swallowing. JC had problems with solids for the first few weeks, like he couldn’t quite coordinate how to swallow. I can’t remember when it went away, but it did resolve.
Lymph massage is a great idea. JC only started doing it maybe two weeks ago, and he said it’s also helping to reactivate the nerve endings. He’s getting more feeling in his face. I’m not sure about the timing to start massage… he was told 6-8 weeks but that was a bilateral procedure with decompression. You should discuss it with your doctor or physio to find out the best timing to start.
I hope your MRI goes well! Wishing you all the best.
I get the pressure on the throat sensation and it causes me to gag too. I feel like my gag reflex is very heightened. Also, my pharyngeal muscles will start spasming. It’s awful. So sorry you’re dealing with this too.
Hi, have you checked with Cleveland Clinic in Ohio? I am two days post op and also had issues finding an experienced surgeon who has done ES surgeries and that took our insurance. I totally understand feeling powerless - needing surgery, having to travel out of state for surgery, but also needing a competent surgeon that participates with your insurance. I am still in the recovery stage, but so far I feel better than I have in months. Thus far, all Eagle Syndrome symptoms are gone. Don’t give up! Sending encouragement and praying you get the answers & help that you need.
So pleased that you’ve had surgery & are noticing improvements! If you’re only a couple of days post-op just be prepared that the swelling can peak in another couple of days, so you might feel a bit worse- keep up with pain killers, icing & sleeping upright if you can. Take care and I hope that you keep on improving!
Dr. Endres isn’t convinced I need surgery and is worried if he does the surgery I won’t have relief. He sent me to a Neurologist to be seen and have more tests maybe, just waiting for the office to call. My other Doctor doesn’t agree, Dr. Osborne was more than willing to do the surgery if I had 80K cash, so at this point I may need to get a third opinion. I liked Dr. Endres and I’m glad I gave in and made the appointment - thank you for the encouragement!!
@Torrine, If Dr. Osborne said you need surgery, then there’s a very good chance you do.
Another doctor you could check in with is Dr. Samji in San Jose, California. He did my ES surgeries & I had good outcomes. The only thing he didn’t look for was IJV compression which I ended up having, but the ES surgeries he did for me did resolve my nerve pain symptoms. I’m pretty sure his practice takes your insurance.
•Dr Hussein Samji, Camino ENT Clinic, San Jose 408- 227- 6300 Camino Ear, Nose & Throat Clinic (one of the most experienced ES surgeons in the US, does external surgery.) Contact his medical assistant Yerelin@caminoent.com for a faster response. (Dr. Samji doesn’t believe in vES w/ IJV compression).
Things went very quickly. I’m still in the hospital. I admitted thru ER LATE at nite . With my personal surgeon not home. Called to family emergency in PA. transferred to his best collegue. James Raccuia. i was cocerned. But God is good . So is new doc. Dr Rager got home then became ill. So more waiting but finally. Office girls i said sign both to care for me and she so " oh know they dont play well together" lol. They did end up working on me. Here its june9 and im still in hosp. I believe it was June 11th when I was released. Today I’m still not doing very well.
Jun 20 middle of night back to ER . First rt half of face went numb. Then left. Even eyes. Drs said was potassium and magnesium both dropped way low. Was to danger situation. But back home.
Been really rough road. In all total almost 30 days in hospital.
This was just an update.
@Sandys_Mom21 - You’ve been on my mind & I’ve been praying for you. I’m so sorry for the symptoms you’ve suffered. I know you had abdominal surgery scheduled. Did that go on as planned & if so, has it been helpful?
I hope getting your potassium & magnesium elevated has helped stop the facial & eye numbness. I’m glad you’re home now & hope you don’t have to go back to the hospital for anything anytime soon.
I wanted to know if anyone can explain to me how to post. I think I am doing it wrong. I just received results from an MRI that are disappointing due to the fact that they claim/the radiologist claims, that there is no sign of neuralgia, which was diagnosed by my original surgeon for my bilateral styloidectomy. They only found some issues with my C3 and C4, my neck. My issues are through the front of my neck under my mandible, which is extremely numb and under my mandible is extremely painful. I have a neurosurgeon that I follow up with on July 10. But, I had my first visit with her, and I don’t think she believes me.I’m getting very frustrated that no one is hearing me and not believing that this pain is real and debilitating. I’ve had every test possible, and they did note that I have anemia and B12 deficiencies. Hopefully, supplements will assist with that. Anyway, I wanted to know how to do a post because I seem to be doing something wrong. Thank you.
I’m sorry that you’re still getting nerve pain- I can’t remember how long ago your surgery was, but nerves can take months to heal, even up to a year… B group vitamins can help with nerve healing so good you’re getting a supplement.
MRIs can show some issues with nerves, but a FIESTA/ Ciss MRI is the best for showing what might be causing neuralgia, for example if a blood vessel is compressing a nerve, although they can be hard to get.
I’m sorry I can’t remember if you’ve tried nerve pain medications? If not, you could ask your neuro about that?
If you wanted to start your own discussion, on the home page there’s a blue button with a pen icon at the bottom left of the page, click on that & it comes up with ‘New Topic’ , click that & it comes up with a text box. Fill in the title & choose a category (General is fine), & type your post…then at the end click the +Create Topic blue button at the bottom left of the page, & you’re done!
I cannot thank you enough for your advice and input. I will post. It’s great advice regarding the MRI. I’m not sure what type I had today. I will find out and speak to my neurosurgeon about it at my follow up appointment. I do take gabapentin and I don’t really take it as prescribed. I usually take it Twice a day instead of four times a day as prescribed. I probably need to give it a chance and see if it actually helps if I take the actual dosage. I get nervous about taking too many medication’s. Again, I cannot thank you enough. It’s very kind of you to respond so quickly. I hope you are doing well and it really means a lot to have other people who have had this experience in whatever form that is, to speak to and get feedback. Thank you again.
that. So sorry. On top of all of this I’ve had severe belly pain for a long time. Monday the 12th Dr Rager is doing an exploratory hoping to find out why I’m in such pain. Wed I’m having MRI w/wo contrast to check out a meningeoma. It’s small but since my mother died of multiple brain tumors the docs think it best that I’m checked thoroughly.
time for God and us.
