Good morning all - I hope all the Fathers out there had a great day yesterday.
I wanted to reach out with two questions.
First, I wanted to see if anyone else has experienced neuro symptoms that have been explained by Eagle, and if so, if surgery took care of those. I’ve noticed that over the past few years I’ve been a bit more clumsy than normal, with brain fog/fatigue. I started having feelings of Derealization/Dissociation starting about 12yrs ago when my ear cracking initially began. The other neuro symptoms started shortly after receiving the COVID vax. I don’t mean that to be a political statement, it is just a matter of fact. I’m highly suspected to have EDS, so I am hoping that the neuro symptoms are not being caused by something like CCI. I am tending to not believe that to be the case as I still lift a few times a week and run 1-2 5ks (sometimes longer) per week too. I would think that if these aren’t being caused by Eagle, it could be POTS or something a bit less scary than CCI. Long story short, has anyone had similar symptoms that were relieved by the styloid surgery?
Second question - I got in touch with my ENT with my question around Eagle syndrome. I have a follow up with him beginning of July, but I’m going to try to see if I can get some imagining done in the mean time to get ahead of it. What would be an exhaustive list of imaging I should ask if I can get between now and when I see him?
Vascular ES can cause brain fog/ fatigue, in my case this has definitely improved with surgery. Can’t say I ever had the derealisation or dissociation so I don’t know about that… Do you get the typical POTS symptoms of dizziness etc when standing up quickly?
The best testing you can get would be a CT with contrast, timed to see the arteries & veins. If you have symptoms when your head is in a certain position, occasionally a CT can be done like that so you can tell if blood vessels are being compressed like that. Personally I wouldn’t get any more imaging done than that as depending on who you see, they often work with particular departments to get imaging done exactly how they want.
@AugustWest94 - We have a number of members who’ve suffered from the derealization/dissociation problems & it was related to IJV compression. When the IJV(s) are compressed, deoxygenated blood can’t flow out of the brain as quickly as the freshly oxygenated blood flows into the brain through the carotids. This causes a high pressure situation in the brain called intracranial hypertension (IH). The symptoms you’ve mentioned can be related to IH. Once the IJVs are reopened, the symptoms compression cause will often resolve. For some people it happens quickly but for others it can take some months.
I am 6 days post op for Right Styloidectomy. So, it is early yet in recovery, but thus far, surgery has resolved all of my Eagle Syndrome symptoms. I have been given a new life. I too, had new neuro symptoms evolve after my Covid vaccine (the 2nd one in the initial vaccine). I have not had a vaccine since. My husband and I both have suspected the vaccine caused a reaction in my body. I also don’t mean this to be a political post, only recording my own body’s reaction to the vaccine. Brain fog, dizziness, feelings of unreality that would come & go. Migraines and tremors that landed me in the hospital. I did not have an Eagle Syndrome diagnosis at that time, and Neurologists couldn’t find a diagnosis. They were reluctant to say that the new Covid vaccine caused or exacerbated my symptoms. All I know is that I had almost all of the Eagle Syndrome symptoms for years (right side only), & doctors blamed my symptoms on depression, suspected and ruled out MS and a host of other illnesses. I think a 3D CT scan with contrast would be helpful in diagnosing you. It helped with my diagnosis. I wasn’t diagnosed until this April - my dentist saw the bilateral elongation of my stylohyoid ligaments on a 2D pano and said, “I think we just found a huge piece of the puzzle”. He saved my life. I was deteriorating rapidly by that point- unable to eat or talk from the jaw pain, having to choose whether to speak or chew (ie if I eat, then I can’t talk the rest of the day). The dizziness caused fainting spells and I passed out in the night and fell flat on my back, spraining my back, neck, trapezius muscle. (That pain is still there 2 months after the fainting/falling). I couldn’t look up or down, or side to side without twirling & dizziness and intense neck pain. I was too weak and dizzy to walk on my own. I was confined to a chair watching life go by. I am a very active person (exercising, gardening, hiking, fishing etc) and this was killing my spirit. I had several MRI’s and CT’s that did not show the bilateral elongated ligaments. A CT scan with and without contrast, & a 3D Angio CT scan both with & without contrast finally showed that I did have Eagle Syndrome. I would encourage anyone who needs a correct diagnosis to obtain the needed CT’s. A 3D reconstruction CT is also what top surgeons order to find or rule out Eagle Syndrome. Eagle Syndrome IS a puzzle, and there still is not a lot of information out there for patients, providers and the medical system to understand and diagnose this rare and debilitating condition. Don’t give up. Don’t believe that you are “just depressed or crazy”. Know your body, believe your body, inform yourself and be your own best advocate. Push if you need to; assertive not aggressive. There is hope. 6 days ago I had Styloidectomy surgery at Cleveland Clinic - yesterday I planted my garden (wisely and with help & breaks). Don’t give up. Wishing you all the best and the “right puzzle pieces” for your best and healthiest life.
Thank you for sharing your story, @Suzygrace! I’m so glad you’re doing this well soon after your surgery. Just be careful (as you noted you were) not to over do too soon. Recovery occurs by baby steps so we recommend not jumping back into life w/ both feet too soon as feeling better makes us want to do that! If you notice a return of symptoms for a few days from time to time, that is normal. They’ll usually fade away again in another few days. I think “backsliding” is one way our bodies force us to rest a bit more than we want so recovery can proceed most efficiently.
So pleased that the surgery has helped you already! And thanks for sharing your story, it’s such an encouragement for members to hear…well done not giving up
Thank you for sharing. I also have atypical eagles symptoms so I’m always asking to see if surgery has helped with these other problems! I also have intermittent pain behind my right eye.
I had so many symptoms- some that my surgeon questioned were ES related. Dr. Ryan Osborn in LA told me on a zoom appointment that he believed all my symptoms were related to Eagle Syndrome. My surgeon at Cleveland Clinic wasn’t so sure. The only symptom I did not have was the sore throat that many people have. But the last 3 weeks I was having bouts of gagging/choking - as if someone was putting their finger down my throat. When I woke up in recovery, I was pretty out of it, but my symptoms had gone. I am 9 days post op with still no ES symptoms. I do have more pain yesterday and today as the numbness around my incision wears off, but it’s just part of the healing process & will get better. I am told there will be twinges of nerve endings firing here and there, but so far so good. The intense burning pain in my right jaw and ear & eye pain and the constant dizziness is all gone. I am hoping you can get surgery a d get relief.
