Hey guys, I’m new to this forum and new to exploring Eagle’s syndrome. I’ve been almost completely bedridden for over a decade. I’ve had chronic Lyme which is still being treated. I also have mitochondrial dysfunction. More recently I developed severe mcas and can only eat 2 foods reliably. My doctors thought I had craniocervical instability and possibly also chiari. However, I went through a lot of trouble to get invasive traction to test is fusion surgery would help, but invasive traction did not help enough for them to think I should get surgery. However, both my neurosurgeons said my scans showed Eagle’s syndrome (well one insisted it wasn’t Eagle’s syndrome but called compression of the jugular by the something something styloid). So now I’m here trying to figure which is any of my many issues can be caused by Eagle’s syndrome
I guess my questions are the following
do you need to be in a lot of pain to have symptomatic Eagle’s syndrome? I’m often miserable, feeling like life is draining out of my head, or struggling to breathe or having other neurological issues with myoclonic jerks, but not actually in severe pain.
can Eagle’s syndrome cause mcas?
can is cause dysautonomia and/or mal de debarquement syndrome?
do people get worse from the surgery in the worst possible case? Or is it one of those, worst case, you don’t improve things?
I guess I should add one neurosurgeon said I should get a bilateral glossopharyngeal block to test if my Eagle’s syndrome was irritating my nerves. The other neurosurgeon saw me after I had a CTA that was supposed to have a venogram too, but the report didn’t mention venogram so I don’t know if it was done. Anyways that neurosurgeon said my jugular was definitely compressed. So those are the 2 docs that have told me I might have Eagle’s syndrome issues.
Hi Bailey, & welcome to the site!
You poor thing with all these conditions, and being bedridden for so long, very, very tough for you…It’s so hard when members have multiple conditions to work out what’s causing what symptoms, and sometimes it’s not possible to know for sure until after surgery & to see what’s left I’m afraid.
ES doesn’t always cause alot of pain, it does depend on the angles/ length/ width of the styloids & which nerves they’re irritating. I found amitriptyline for the nerve pain helped me (it was a constant aching pain, maybe a 4/10 all the time?) so was bearable, but then I started to get the vascular symptoms - I had bilateral jugular compression- which made me feel really ill, so then I decided I had to have the surgery.
ES can cause neurological issues as the styloids can compress the vagus nerve, and some members have had neuro issues like myoclonic jerks, although whether it is from ES or a coincidence we don’t know! We have also had some members with chiari and dysautonomia, and also MCAS, so there’s seems to be a link but not necessarily a cause…You can search the past discussions for all these subjects, here’s a discussion in which @JustBreathe has posted some info about MCAS, her post is about no.118, it’s quite a long discussion but includes talk about jugular compression so that might be interesting too! There are more if you’re able to look?
Very rarely would people get worse from surgery- there are risks as with any surgery, some facial or tongue paralysis seem to be quite common as these nerves can be stretched a bit with the surgery, but this usually resolves within a few months and sometimes exercises. There is a risk of having a stroke in surgery, but I can only think of one member who’s had this over the 8 years I’ve been on the site. So usually surgery helps resolve at least some of the symptoms, although for example if the jugular veins have been badly compressed they don’t always reopen and maybe need ballooning or stenting. I was very lucky and mine were fine after surgery, it made a huge improvement to how I felt! The risks with surgery are mitigated by finding a good, experienced surgeon though, we have a list in the Doctors Info Section if you need it.
I’m sorry we can’t be more definitive about what might be causing what of your symptoms, it’s very hard for you, sending you a hug
Thanks so much Jules! Your reply is actually very helpful. I’m at a point i my illness where I assume nothing is definite in terms of this is definitely causing that or such and such a treatment will definitely have a certain result. I’m glad to hear you don’t always have pain, since pain has never been one of my biggest complaints.
Currently I sent a bunch of scans and their reports off to Dr Cognetti. I’m hoping he’ll be more open minded since probably the one things my doctors do agree on is I’m a weird case.
Oh one other general question. Is it safe to post Dr names online? It seems like it is here, but I’m asking since I come from the Lyme community and I know chronic fatigue community has this issue too where they don’t publicly post doctor names because medical boards often will try to take away the medical licenses of doctors who don’t follow specific guidelines even if the patients are not helped by the guidelines but are helped by non guideline treatment.
We discourage doctors’ names being posted when something negative is being said about a specific doctor or clinic. The specifics can be shared through a private message just not in the public forum because even a good doctor can have a “bad day”, & we don’t want to put anyone’s medical reputation in question.
It’s ok to mention a doctor’s name who has helped you but perhaps don’t go into great detail with the specific treatments.
Your symptoms are all similar to mine. Are you in the US? If so, Dr Hepworth in Denver. Send your recent scans for initial screening. Hopefully you’ll get an appointment with a nurse practitioner there. All that will take months.
Meanwhile, you could try Dr Cognetti for consult, but as far as I know he does not do some additional treatment and monitoring that Dr Hepworth does.
Lyme, MCAS, CCI, more, including mostly bed for decades—all are familiar to me. Can you eat protein?
Hey violin! Hmm, Denver is on the opposite coast from me and would be difficult to get to, unless they can do all their treatment virtually. I am kind of curious about the scar from a styloidectomy. I also used to play string instrument (unloved stepsibling of violin ). Does it usually look like violin hickey? Or is it futher down?
I can currently eat grass fed beef and Napa cabbage. Though we just had a scare with possibly losing grass fed beef. We looked into various elementsl diets but I can’t tolerate vitamin d or glutamate so they apparently love to stuff the formulas with both. I’m technically not allergic but they basically turn me catatonic because of how much they flare my brain inflammation.
Viola? Very much loved!
My styloidectomy will be right side first. Even if it were left, which might happen for me in the future, I believe the outside scar would be back of and higher than the “hickey”. Regardless, please try some soft covers for the chin pad area? Before I knew about styloids I used to half-joke about I wonder if I have a violin bunion.
Oh I hope you can continue your current two foods and add back a few. Yes it has seemed to me that the jugular constriction makes our neuro inflammation worse, perhaps because the brain lymphatics, glymphatics, eventually drain into veins. Like plumbing, perhaps it all gets backed up. I was advised to sleep slightly propped up on several pillows. Not sure it helps but low-tech to try.
Do you have headaches? Neck aches? Congratulations if not.
You’ve probably tried some of the MCAS suggestions like antihistamines? Some people do better with compounded versions of everything in order to avoid reactions to inactive ingredients. Can you take anything anti inflammatory, even baby aspirin with a meal?
Maybe some very gentle downward stroking massage to help the lymph and veins flow?
Dr Cognetti must be very good. A Stanford doctor mentioned him to me.
So much to consider and try out. Surely this next step of styloidectomy sounds like worth investigating. Sometimes I think of my body as being like an old precious violin that requires special care. And over the years most violins need the neck replaced. It’s a common repair. Done properly it does not decrease the value in the least, and makes it more playable. Let’s hope the metaphor is true for us.
I haven’t actually played in a long time because I’m too sickly. I wasn’t that good anyways, plus very few really wrote great music for my instrument . So it’s not like violin when you can listen to Chloe Chua or Hilary Hahn and think, I just play that piece! Although if you’re playing at the level I suspect you are, you probably have played all the fun famous pieces and it’s just a matter of reinterpreting them.
I don’t really get super bad headaches or neck aches. My neck rarely hurts. My head, hmm often feels bad but I guess I don’t always think of it as hurting.
I’m on tons of antihistamines, both natural and Rx. I have an mcas doc, though he doesn’t really do much. Mostly I have a chronic illness doc that does most of the stuff for me. He’s the only one doing active new stuff for me, will and the people he sends me to. I also have to get a lot of meds compounded. I can’t tolerate lactose or have issues with most alcohol sugars. Alcohol sugars tend to break down my biofilm and then I have to take antibiotics otherwise I get crippling mal de debarquement.
Sigh. I hear ya. I haven’t wanted to play in a very long time.
I had to look up mal de debarquement. How difficult for you.
You have a lot of company in mcas sensitivites, unfortunately. I’m glad you can get some medicines compounded.
I have to reread your first post. Are you starting up to try to contact Dr Cognetti? Wouldn’t it be fabulous if you have a good result from styloidectomy! It certainly sounds like a reasonable next step.
And then there will be another helpful treatment, and another… It’s a process. And you are making progress.
The Lyme treatment that helped me the most, well, maybe it’s not pertinent in this forum, but I still take low dose Doxycycline. Plus itraconazole as antifungal.
Sometimes I stop them for awhile but generally I feel better on them.
I had a bodywide venoplasty 8 years ago for the treatment of dysautonomia from Lyme. I felt much better afterwards. That doctor discovered my bony constricted jugulars when he could not get his catheter up through my jugulars, which was considered the aim of the procedure. But for me the styloids are not long so no one wanted to do styloidectomy until I found Dr Hepworth. His nurse practitioner told me it’s the angle of my styloids doing the compression. I don’t notice actual pain from the styloids, I guess.
A doctor who helped me the most with Lyme treatment prescribed home hyperbaric oxygen. I was on his meds for a couple of years, then an OxyHealth mild HBOT chamber, which is next to my bed. I used it with just room air for a couple of years, then another doc prescribed the oxygen concentrator addition. I had to go VERY SLOWLY on adding the oxygen, like only 5 mins increase per every several days.
OK, ‘nuff for now. Great that you’re already on the way to see Dr Cognetti.
Yeah I see Dr J in dc for Lyme. He’s done a tons of different antibiotics and various things for Lyme. He did suggest liberation therapy at one point. I wasn’t as sick then as I am now so I declined because I wasn’t sure about it. He did talk about hbot at one point, but I have very bad bartonella and babesia so hbot is a double edged sword.
That is interesting that they couldn’t widen your veins at the styloid. It does sound like you found a real problem.
I had one other question about compression do the jugular and vision. My right eye vision is way worse than my left. From early doc reports, it appears my left jugular is compressed /more compressed than my right. Is this like a normal thing where the compressed jugular on one side affects the eye on the opposite side?
I don’t think IJV compression symptoms typically cross over but you have to figure both halves of your body aren’t exactly equal so it’s possible for you to have worse visual symptoms on the right w/ less IJV compression.
Some members have had bad compression one side & a weaker/ not so open jugular the other side, naturally not through compression- I can’t remember the medical term for it But basically, it’s common to have a dominant & non-dominant jugular vein, so if the dominant one is the compressed one then you’ll get more head pressure…maybe that’s the case with you? Although why both eyes aren’t affected I don’t know…
Really glad you were able to get an appt. this summer. I don’t know if you thought to ask to be put on a cancellation list, @Bailey. We highly recommend that, & I think all doctors offices keep one on an ongoing basis. If you didn’t, call the office tomorrow & ask to be added.