Just the one side. So far I don’t seem to be having any left side issues. The only left sided sign I got was my left nostril would flow; that’s no longer a problem post operation. I know lots of the facial autonomics cross over so that might explain why.
Oh wow. I read that the left side is the side that affects the stomach issues. Idk if thats true? Hoping stomach issues resolve with surgery
14 weeks. My scar is barely noticeable. Dr. Samji had warned against thinking styloidectomy would be a panacea, curing every ailment. After the car crash I had concurrent head and stomach problems which really confused getting a diagnosis. Now that the head problems have been addressed, it’s a whole lot easier addressing the stomach ones that persist.
They are, in a way, related. In the diagnostic process it was discovered I have Ehlers Danlos. That diagnosis led to the Eagle’s diagnosis. In Ehlers-Danlos all your connective tissue is pretty loose—great for demonstrating how limber you are, not so great when getting hit by a car. The car crash probably stretched my neck too far and my long styloid did some damage then my neck could no longer keep it off important structures. Down below where the seatbelt post was pushing on my gut probably did some damage the visceral connective tissue couldn’t protect against. So my tummy troubles aren’t caused by Eagle’s, but by the same thing that made Eagle’s a problem. At least I can think straight now.
So the functional neurologist, still thrilled with the improvements from surgery, can concentrate on the intestinal issues. He was wondering about the possibility of intussusception—another problem Ehlers-Danlos patients can get, where the intestine pushes into itself sort of telescoping. So back we go to old imaging and found some interesting things, promptly sent to the functional neurologist. For certain my small intestine near the end of the ileum is thickened and compressing the ileocecal valve. Whether it’s due to trauma, intussusception, herniation, Meckel’s Diverticulitis, or something else, I don’t know.
What I do know is there’s suspicious imaging right where my pain has been. It’s almost as exciting and relieving as when we found the elongated styloid. The doctors that admitted I had a serious medical issue often told me my problem was complex—that is, there’s more than one cause. One has been eliminated. Dealing with the abdominal issue is a lot less scary than having my neck cut open, which is all behind me. I can do this.
“ICV” is Ileocecal valve, right where the small intestine joins the large intestine. “Donut sign” is a term radiology uses looking for intussusception
It’s a shame that all your issues haven’t been resolved, but great that you’re working towards an alternative diagnosis for your stomach issues. You’re an inspiration to everyone for advocating for yourself & learning all you can about your health problems & causes… I hope that the latest scan finding can be sorted. We’ve had a few members with EDS, as you explained it makes sense that it could be linked to Eagles. Any shifts in the neck, whether through problems with vertebrae/ discs or connective tissue can alter the angle of the styloids, potentially causing compression of cranial nerves, IMO.
Hope that there’s still improvements as you continue to heal, & thanks for the updates, it’s really helpful!
A little over four months now. I don’t have any more numbness to my face or the weird little pains that would come with eating (not really ‘first bite’ syndrome I don’t think, I was spared that). I haven’t had a single TIA since the surgery, and all my neurological issues seem to have resolved. Something that might be attributable to the autonomic dysfunctions along with the unilateral nostril dumping clear fluids (yuck!) and right arm turning blue (scary!) is, my hair was always much thinner on the right side of my head. I can happily report all that is better and my hair is even both sides.
This is in no way an Eagle’s Syndrome issue now. It might be that the car crash caused my elongated styloid to compress my right vagus nerve proximally (near my brain) and the seatbelt clasp created or irritated an adhesion distally (at my abdomen) affecting that end of the right vagus. Eating would release gastrin which would cause my small intestine to move against this sore spot which would send a signal up the vagus where my styloid was a problem and all my weird things would happen. Now with the styloid gone, there’s still the intestinal issue and it still makes my vision burry.
Two weeks ago it was really bad and persistent so I went to the ER. The ER doc diagnosed me with ‘adhesions’ and sent me home with a gastroenterology follow up.
Adhesions are a VERY common problem. Your guts are supposed to slide around freely but trauma (like my car wreck) abdominal surgery (three C-Sections) and sometimes for no reason at all they can form, making tight bands that keep things from moving about. You can get surgery to remove or ‘lyse’ them but that surgery can just lead to more adhesions. Laparoscopic surgery has better outcomes but even that can cause adhesions. The osteopathic approach is external manipulation and mobilization of the gut.
So off I went to the GI doc. I liked him, and he confirmed adhesions as being by far the most likely issue. My pain is always in the exact same spot and if I twist around and contort myself I can get things to ‘pass’ and there’s relief. The other positive thing was, he confirmed the external manipulation was worth a try and had positive results for others. He had no idea about the blurred vision issue.
So the plan–meet with the functional neurologist tomorrow. I have some imaging to grill him about. Jump through the hoops for the referral for external manipulation/mobilization. If that doesn’t help then laparoscopic surgery. If that takes care of the abdominal issue but not the vision, it’ll be an isolated issue to take up with the neuro opthalmologist.
Adhesions are a nice, vanilla, common problem doctors don’t need explained to them. THat’s a nice change.
I’m sorry ES surgery didn’t take care of all your symptoms but am so glad to hear that you’re being persistent in pursuing answers & solutions for those that remain. I will pray for the external manipulation/mobilization approach to be successful & that the vision craziness goes away as the adhesions are eliminated. What an “adventure” you’ve been on! I’m so glad that some of your other challenges are gone now.
I hope your days are mostly normal now compared to what they were before your ES surgery.
Thank you as always for your thorough update!
I hope that you’re able to get the manipulation therapy referral & that it will help solve your remaining issues. Thank you for your updates; it’s really encouraging to hear of symptoms being resolved, especially the more unusual ones! Best wishes!
So great to hear things are improving for you. Your updates are very inspiring for me and help keep me moving forward. Hope you are able to get those adhesions taken care of…those intestinal issues can be crazy painful and scary. I think those manipulations sound like they could be very helpful. It is kind of nice to have something common/normal going on after all the oddities like blue hands and such! Hopefully the blurry vision just needs a bit more time to resolve!
Thank you for all your updates and info - so much appreciated!
Hi Everyone! I know it’s been awhile, but I remember pre-op reading EVERY story and being frustrated when the stories here ended very abruptly. So here’s my good/bad/very hopeful update.
First the good. You can’t tell I had surgery at all by looking at the scar. There are no bad side effects from the surgery. Best of all, my scariest complaint, the transient ischemic attacks where I felt ‘flat’, could not speak well, had no balance—are GONE. I would 100% do the surgery again knowing this would be the outcome.
Second–the other things are all back, maybe even worse—the blue hand, the blurred vision, the right lower quadrant pain. In the past I had a series of stellate ganglion blocks, they would provide complete relief but only last 2 hours or so.
Probably the most major ‘rabbit trail’ we ran down before finding the elongated styloid was my diagnosis for Thoracic Outlet Syndrome. It explained everything and the clinical tests they can do–strange specific arm and hand weaknesses, a pulse that disappears with certain movements, nerve conduction studies, sudomotor changes–I got 'em all. We fought the fight and got out of group to see the main TOS guy over at UCSD. After some very specific imaging studies at their TOS clinic, they found no rib or outlet abnormalities. They confirmed the diagnosis but said surgery wouldn’t help since my ribcage was normal. That confirmed what the radiologists at Sharp, Scripps and Mayo Clinic had said.
Here’s where this becomes a message of persistence, educating ourselves, and learning everything we can. We found the elongated styloid ourselves. Let’s take a look at the ribs.
While doing that, we sent a message to the functional neurologist and directly asked—“Do I have cervical ribs?”
At the next visit he said no, I reviewed your imaging with a very thorough radiologist. You don’t have cervical ribs. So we spent the majority of the visit showing him these images we printed up—
(Just a few. We actually scrolled through many images with him) The thing that was confusing was, cervical ribs by definition come off a cervical vertebrae. These shortened, floating ribs clearly came off T1 like first ribs should. The ribs below are broad, flat, and attach at the manubrium (top of the sternum) like first ribs should. When a doctor you consider brilliant says…“That’s weird”, you know you’re on to something.
Well, I do not have cervical ribs. The doctor sent our questions and observations back to the very thorough radiologist. I have rudimentary, or hypoplastic, first ribs that never fully developed and the second ribs developed like first ribs. The head of the first rib appears to be crushing the stellate ganglion, which could explain every one of my complaints.
The distinction between anomalous first ribs and cervical ribs is important. When you have cervical ribs, most of the time they cause no problems. Anomalous first ribs are an entire vertebrae lower and predispose one to TOS. More important, if you remove cervical ribs for TOS you also remove the first rib. If you mistake a short first rib for a cervical rib and take out the second rib you thought was the first rib, it can be very detrimental.
So…why were these anomalous first ribs missed for so long? I think it has to do with how radiologists count ribs, and the curveball I threw them. As luck would have it, I DO have an extra set of ribs, down at the bottom off a lumbar vertebrae, L5. So a radiologist looking at imaging from the front would count a normal number of ribs, 12 pairs, starting with what looks like normal first ribs at the manubrium. Then a look at the cervical spine (neck bones) shows a set of ribs coming from the first thoracic vertebrae, T1, with none from the neck bones. So, normal from the front, normal from the back. It isn’t until you scroll through you realize the bones that come from T1 end abruptly and aren’t the same ones that attach at the sternum. (this picture is mislabeled as cervical ribs and the second ribs are mislabeled as first ribs–we were still figuring it out))
So this rib needs to come out. Hopefully just the one on the right. Anomalous ribs do not cause TOS; they predispose you to TOS after a fall or accident. My history exactly.
If they had seen these years ago and done the surgery, it might have taken care of most of my complaints–but my elongated styloid still would have been causing daily TIA’s and I would have assumed the surgery was just a partial success. They missed it and we found something else needing attention. Even if we knew all this, I’m glad the styloidectomy is behind me. Now hopeful about the rib removal and an end to doctor visits.
Wow! You have been so persistent with seeking a diagnosis! I am glad that there’ve been good results from your ES surgery, & glad that you’ve now hopefully got a diagnosis & solution for the remaining problems…and making medical history?
Hope all goes well if you have further surgery, & let us know how things go!