I’m so excited to share that Im officially on the surgical schedule with Dr. Cognetti for April 10th
We’re starting with the less complicated side for just styloid removal on the left. He says he believes there is no c1 involvement on that side. This makes me just a little nervous because I know some people who’ve later had to go back to have the c1 shave but he seems like he’s a good choice to make that call. This is my non dominant side for my IJV flow, but my nerve pain has been starting to get worse on that side.
I have quite a mix of classic and vascular eagle symptoms. My top two greatest hopes from surgery are to reduce head pressure/recurring csf leaks and to not have an overactive gag reflex.
We will get this side done and reevaluate. I have an inkling I will need both sides done but for now I am feeling pretty good moving forward.
So, you have an overactive gag reflex. I haven’t heard of that. My gag reflex is almost completely absent despite the styloidectomies. I hope you can resolve that with a procedure, because it sounds really tough to deal with on a daily basis. I was hoping for some more tinnitus relief, but I think that problem is one that doesn’t go away easily. My surgeon only said my throat pain, swallowing, and voice would improve afterwards. I was hoping for more, but I still have about 6 months to see where I land after the styloidectomies.
Yeah I searched it in the eagle syndrome facebook group. Surgery has helped resolve this in a handful of people so I hope it helps me too. Im sorry about the tinnitus! Is it pulsatile tinnitus or a different kind for you? Did you have any imaging for your ears and did anything come up if yes? That must be so frustrating! I hope you eventually get relief and that you’re still healing
I am actually considering getting a consult with Dr. Cognetti! I am not far (Bucks County) and he seems to be an expert at Eagles. My current ENT will do it, and I feel confident he would do a good job but he wants me to complete a GI work up. That’s what has me thinking I should try to get an appointment with Cognetti.
I am so curious since you mentioned you gag reflux, mine has been horrible for many years and everyone has told me it’s anxiety… but now you really have me thinking it maybe related.
He seems great! Do you have classic eagle symptoms or vascular or a bit of both? The wait for a new patient appointment with Cognetti is pretty long. Mine was scheduled for six months after first sending my imaging. I did have to have a angiogram with manometry (more testing) due to having vascular type. I would say it depends really where your issues are symptom wise.
Unfortunately there isn’t much science that points to overactive gag reflex. It usually says the opposite, but nerve compression as its own entity can cause weakness as well as becoming hyperactive due to misfiring signals. It would make sense that it can happen just not alot of literature. I’ve just read it based on other people’s personal experiences before and after surgery on the facebook group.
Thank you for sharing your surgery date with us @Twistyburrows! I’m very excited that it’s coming up soon! I will pray for you on surgery day & especially that this first surgery knocks your overactive gag reflex & your CSF leaks. If not, & you have a second surgery (most of our members w/ bilateral IJV compression find a second surgery is necessary for the best results), then hopefully that one will be the cure.
I would consider myself under the classic category but after reading here I guess I do have some vascular symptoms. The whooshing tinntius is super annoying as well as dizzy spells. My worst symptoms are the classic ones though. I have been stuck on a soft food diet for almost three years now due to swallowing issues & throat pain.
Thank you so much for sharing, I learn so much every time I read here! Do you mind if I ask what other symptoms you face having vascular Eagles?
Oh wow I’m so sorry that must be so debilitating. I’m sure you’re ready to get a move on and get treatment as soon as possible. The only thing I would add is that Cognetti looks at if there is c1 involvement that could be contributing to symptoms that could be more related to vascular type. I THINK, but also compression of the jugular veins could also just be styloid involvement like on my left side. It’s definitely a hard choice to decide who to go to especially because we’re all so eager to get our lives back!!
My main concern with vascular type is the debilitating high intracranial pressure and headaches which for me have caused cerebrospinal fluid leaks. I already had a huge surgery to close 3 leaks and we think I’m leaking again.
Separate from that is nausea and vomiting from head pressure (not just gag reflex) pulsatile tinnitus, dysautonomia symptoms like feeling like I’m fainting, vision issues like blurring and spots in my vision as well as pulsating vision like my heart beat is in my vision, it kind of darkens my vision with heartbeat if that makes sense. There’s Dis-equilibrium or feeling like I’m on a boat. I use a cane for balance. Can’t raise my arms for long without almost fainting. I get derealization/depersonalization from high pressure on the brain. I’m trying to be very thorough for you but I think I’m missing some. OH brain fog is another one issues with word recall and have almost no memory. Pretty bad fatigue too. If I think of anything else, Ill add it in
Poor you, hope that the surgery helps, I do remember how grim I was feeling before my first surgery and how desperate I was to get it done, I think your symptoms are more severe than mine were
I will be praying and sending you good thoughts for your surgery. It will be here before you know it!!
Oh yes, unfortunately I have had to become very resourceful and try to keep my weight/nutrition up. I keep a list of restaurants I want to visit once I can eat normally again (I call it my Hope List).
Amazing that you have a Hope list!! I love that. I’ll be thinking of you! Hope you can get the care you need quickly and get started crossing things off the Hope list!
It’ll be here before I know it! I will say that I’m relieved to be able to give my brain a break from all the research it took to get here! Hope you’re doing extremely well!
I have similar symptoms that come and go. The styloidectomy (in Ohio) didn’t really touch the worst of the symptoms, but hopefully Dr. Cognetti can take good care of you and make life easier. Please update us on how your doing periodically. Praying for good results.
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issues with word recall and have almost no memory. Pretty bad fatigue too. If I think of anything else, Ill add it in