I’m grateful for finding this forum! I’m scheduled for a left styloidectomy with Dr. Osborne on March 1st. Needless to say I’m freaking out a bit. I started getting really symptomatic about two years ago. It started with tachycardia and anxiety and then severe Gastroparesis. I’ve had so many other symptoms also. In August the tinnitus, dizziness, neck pain, jaw pain and ear fullness all started which led me to eagles syndrome. My styloids aren’t excessively long but they do seem very thick and looking at the CT they are definitely compressing my whole carotid sheath. I need good stories! I know there are good and bad stories but I really want to hear some good outcomes. I’m traveling from Florida to see him.
So pleased for you that you have a surgery date! The symptoms you describe are common with ES, and hopefully will resolve with surgery! Just be aware if you’re styloids are elongated bilaterally, once one side is removed quite often the other side ramps up, & occasionally symptoms can cross over & cause pain on the side that’s been operated on, so don’t think that the surgery hasn’t helped if that happens…also after surgery, healing can be pretty up & down, 2 steps forward & one back, so be prepared for that! There’s lots of info if you search for ‘what to expect after surgery’, if you’ve not already read those. And lots of success stories too!
Here’s a link to an old discussion about that:
Surgery for Eagles is usually successful! - General - Living with Eagle
I had surgery about 7 years ago- I’d felt pretty ill before my surgery, but felt so much better afterwards, I’m so glad I went through with it. I have a little nerve pain left, but that’s controlled with Amitriptyline, the vascular symptoms are pretty much gone.
I hope others chip in with their good outcomes too!
I can’t give you a good story as my journey has halted somewhat, the wheels have fallen off, and we are stuck miles from anywhere but we believe help is on the way…one day… hopefully but that’s enough about me
Sure you will be fine and really it’s the only direction you can go in, that aside could you elaborate on your gastroparesis as I have this issue as well
Those who claim that they know everything say my gastroparesis has nothing to do with my ES
Actually, all.of my symptoms they tell me have nothing to do with ES
I share Jules experience in some ways, though I didn’t have vascular ES. I did have my surgeries ~ 8 years ago & have had good results from them. I’ve been able to resume my life as it was prior to my ES diagnosis. I was fortunate to be diagnosed soon after my symptoms started so I don’t have the hard stories that so many on here do. I am very thankful for that but all the more sad about how much so many of our members have suffered & for so long. I expect good things from Dr. Osborne. You should have a really good outcome.
Do take to heart what Jules said about bilateral ES though. I had both the ramping up of symptoms by the remaining side & crossover symptoms after my first styloid was removed. It took getting both out before I was able to fully recover.
Thank you! All of my measurements seem to be worse on the left side. I have very limited space between my styloid and the transverse process on that side. My right side seems to have normal spacing, so I’m hoping that maybe I’ll get lucky and only have to have a left styloid removed. My Styloids aren’t even excessively long, but they do seem to be big in diameter and my left one seems to be growing inward. Thank you for the encouragement, I really am nervous and I don’t like the incision that Osborne is going to perform in but he just seems to be the most knowledgeable.
None of my G.I. doctors knew why I had Gastro paresis. It just suddenly developed acutely in the fall of 2021. I do feel like I’ve suffered from stomach problems most of my adult life. But when it hit that fall I lost 30 pounds and was a couple pounds away from a feeding tube it was so bad. I really had everything go wrong that can be attributed to my vagus nerves in 2021 so I know that that was what was being compressed.
Weirdly I started going to an acupuncturist and a chiropractor right before I started recovering so I do believe that the chiropractor took some of the pressure off my vagus nerve we just didn’t realize at the time that’s what it was. I have gained back most of my weight but I’m just ready to get rid of the dizziness and chronic neck pain and ear pain.
OK I’m hoping that at least having a left one taken out I can have my neck evaluate a little more thoroughly. I do believe I have some cervical issues along with eagle syndrome. I really do like Dr. Osborne I’ve consulted with him a couple of times and he just seems like this is another walk in the park to him. I really don’t like the thought of traveling all the way across country in case something goes wrong when I get home, but I have a great support system here that just wants me to get better.
Having good support at home makes a world of difference @Tamcol. I hope someone from that group is traveling with you for the surgery.
Make sure to arrange for a wheelchair to take you to your gate at the airport post op & carry empty ziplocks or a refillable ice pack with you so you can ice your neck on the plane going home. Bringing a washcloth to help insulate your skin from the ice is also a good idea. Even though it’s more expensive, some members have found booking business or first class seats has made the return flight much more tolerable because of the extra space to recline & stretch out your legs especially on longer flights like you’ll have.
I’ve put your surgery date on my calendar & will be praying for you.
My husband will be with me. I already have first class tickets and I’m prepared for the ice packs. Fortunately, he and I are both former nurses when we get back home. Both of my children are nurses also. Thank you for the advice on the wheelchair I didn’t think about arranging that. I am also thinking about arranging a car service to take us to and from so we don’t have to worry about parking. Thank you for keeping me in your prayers I covet them.
I’m really glad to know you & your family have medical backgrounds. I grew up w/ a dad who was a doctor & now my daughter is a nurse. I had aspirations of going into the medical profession, but God had other plans for me. It’s great that your husband will be with you. Good job going prepared for the trip home. Be aware that the airlines don’t let you carry gel ice packs on board the plane so you’ll need to have some vehicle that holds ice.
Glad you have first class tickets & your car plan sounds good. Uber & Lift are popular in California. There are also many taxi services as well. Not sure how they all compare price-wise. If you don’t have your lodging reserved yet, Air BnBs have proven to work well for many of our members because they often have full kitchens which makes food prep easier. It seems many people have cottages or in-law’s apartments (IDUs) on their properties which are more manageable than a whole house. There are also condos, townhouses & apartments listed, too. Just make sure to check what the cancellation policies are for any place you look at as they vary widely. So do the additional fees each “landlord” charges.
That’s great you’ll be so well cared for after surgery
I’m very blessed in that regard.
It sounds similar to my stomach
On going problems, the result after many checks was that my 'stomach goes to sleep and we don’t know why, you should try to relax more!!
Ok , Doctor, listen, I had a bad motorcycle crash years ago ,I hit a car at 50mph, I had a passenger on, and he crushed me, I hurt my back, amongst other things,maybe I have a trapped nerve? In the spine?nerve issue , maybe from the that accident? Spine related? Dr ,what do you think??
No , not possible
all works ok.
I am nearly convinced it is my bi laterals😂
If it doesn’t fit in their box, they just don’t listen….or refer you to someone else. I went from completely normal, to damn near disabled in less than 6 months. “It’s anxiety” was what my primary care doc had the audacity to tell me even though it was everythingggg vagus nerve related.
It’s frustrating ,I know
I’m a hypochondriac with anxiety disorders , they are in denial
I know what is happening, I feel it, yet they say it isn’t, or it can’t be, or it doesn’t, when I ask them then what is it anxiety is always first on their list of reasons