nerdymedzebra

[nerdymedzebra]

As soon as i layed down like this i immediately was hit with pulsate tinnitus and what i can only explain as a feeling of blood congestion in the back of my head/neck suggesting blood was trying and failing to drain (maybe through my collateral veins that developed when my jugular became comptessed. Just over a week til styloid yeeting time!

https://www.instagram.com/p/CKfG6V9DPPh/

[nerdymedzebra]

Pre-opp appointment for my styloidectomy and venoplasty today! The dr was concerned that my #LongCovid symptoms stuck around so long and that we may have gotten it twice (didnt test in time to be sure) so he ordered some tests too. Ive never thought i had any autoimmune thing before though so im guessing the results will be fine...

https://www.instagram.com/p/CKNBiEcDnQO/

[nerdymedzebra]

Today, 10 months after being told i need a styloidectomy and venoplasty i finally had my consult (and surprise ultrasound) with the vascular surgeon who will work with my ent . (there were mix ups and his office just does NOT answer their phone 95% of the time and didnt call back for months??) I'm now all cleared for surgery, tho the last time this was scheduled (and canceled ) it was a 7 month wait 😭. But there's a chance my vagus nerve is all tangled up in there and im v excited to see if theres any dysautonomia difference after all this is done.

https://www.instagram.com/p/CGjb7IJD3wi/

[nerdymedzebra]

Had my annual eye exam today, and my deformed corneas have improved!!

I don't understand why the bottom pictures (today) are better than the top (last summer) but the Dr. said they are, so yay! 

Last year she recommended I take riboflavin and stop rubbing my eyes, but I only did the latter (can't afford supplements :( ). I also noticed that my eyes get blurry based on how I hold my head/back of neck, and if i let them slouch instead of holding my head up straight and properly, my vision can get blurry (probably from intercranial pressure from vascular smooshing by the CCJ). 

So, once I realized that this past year, I now adjust my head/neck instead of rubbing my eyes when it gets all blurry, so that's helped decrease the blurriness *and* the overall corneal deformation too. 

Whew! #EDS folks are high risk for keratoconus and I don't want that thankyouverymuch so i'm very glad to see something actually *better* for once! (My vision is still a bit worse and my prescription got increased, but at least it's not from that, or from IH related things, as she said my eye nerves all look fine and not inflamed or anything.) Anyway, remember to take care of your eyes and get regular eye checkups, EDS folks!

https://www.instagram.com/p/CFKmBHPjcNX/

[nerdymedzebra]

I just watched this video! Oh man. Chin tucks will make any compression between our styloids & c1 worse! 

Which makes total sense, but I wanted to share the heads up in case anyone else hadn't thought about it.

I have Forward Head Posture (aka Text Neck, but mine is just from EDS) so my PT has been making me do chin tucks (UNTIL I told her about my jugular compression suspicions, then she told me to stop those until I see the ENT next month) and turns out I may have been making the compression worse! (also if your posture is naturally chin tucked, it's also bad.)

Luckily I have instinctively switched from tucking my chin to just elongating my neck and letting my chin do whatever, and this PT recommends doing basically do that (though more chin raising). Obviously your own doctors > youtube PT... but this is worth a watch in case you're dealing with compression too!

[nerdymedzebra]

"Eagle’s syndrome has been traditionally defined as an elongated styloid process causing symptoms of cervicalgia, otalgia, and throat pain. These symptoms can also be caused by the proximity of the styloid process to the transverse process of the cervical vertebrae even in the presence of a normal length styloid process. In our series, the transcervical approach is safe and effective for styloid removal, and is preferred when the styloid demonstrates normal length and is in close proximity to the transverse process of C1."

"Although all 4 patients eventually had excision of both their styloid processes, the fact that all 4 had symptoms on the side with the shorter styloid process and more significant compression demonstrated to us that, in addition to the length of the styloid process, its relationship to the cervical vertebrae also played a part in symptom manifestation."

"Other than the pain and discomfort that may be due to styloidogenic impingement of the jugular vein and associated neurovascular structures, several studies have looked at chronic internal jugular vein compression and its proposed sequelae. Associations have been made with multiple sclerosis, migraines, and pseudotumor cerebri. A study by Dashti et al reported 2 cases of internal jugular vein compression by the styloid process causing pseudotumor cerebri that were resolved with styloidectomy. Patient 1 in our series also had a diagnosis of pseudotumor cerebri that was refractory to multiple spinal taps. His symptoms of headache, dizziness, otalgia, and cervicalgia, however, resolved after excision of his styloid processes."

Vascular Eagles is even less known and understood by professionals than regular Eagle’s, so it’s great to see this paper pointing out that even non elogated styloids can cause problems, like mine!

[nerdymedzebra]

@ES Group

I was supposed to have surgery this summer, but now I don't know when it'll be. I have vascular eagles, and was going to get my R jugular veinoplastied too. My symptoms were all neurological and i never really noticed any discomfort in the area before, or at least this extreme, anyway.

Until this last week or so. It's started feeling weird and uncomfortable. Today, it's very distractedly sore behind my ear. Warm and sore and wrong, and normally i don't stress about stuff like this, but this is kinda making me anxious. If i turn my head to the left or tilt it in various ways, it makes me suddenly nauseous and sometimes tingly, too

has anyone had a fairly sudden onset of pain where there hadn't been before? And especially, did anyone have this and talk to their doctor about it? I haven't been able to call Dr hepworth about it yet.

or, does anyone else know if there is anything else besodes styloid/jugular that might be causing so much discomfort, warmth, swelly feeling, tingling if i move, etc in the area other than this?

[nerdymedzebra]

I'm Lateral Quadrupod, My kiddo is Dynamic Quadrupod (sometimes dynamic tripod, he says). What about you?

Weird pencil grips are common in my adhd/autistic AND eds groups (tho those three groups overlap a LOT as well). Certainly not everyone with weird grips are any of those things, but still, worth pointing out!

(my finger joint HURTS if i try to hold a pencil the "right" way, because my finger bends too far back!)

[nerdymedzebra]

EDS can be life threatening. Almost no doctors take it seriously and literally say "theres no point in getting diagnosed" to our faces which is so extremely false.

Her death was ruled "coronary artery dissection due to Ehlers-Danlos Syndrome." it wasnt diagnosed til after her death.

Police attack and pepper spray unarmed protestors, though pepper spray has significant health effects on even healthy people, let alone those with health conditions. And then claim that their actions that triggered something fatal had nothing to do with them and it was only a "natural death"??? Bull shittttt.

But ofc they do this all the time.

[nerdymedzebra]

Systemic racism kills by more than police.

Also, American doctors blame EVERYTHING on anxiety in everyone but white men to such an extent it should be criminal, tbh, but i can promise you if i walked into the ER after collapsing like that, id have had a way more thorough workup, and drug use would not have been assumed (anxiety would be but theyd STILL go through the motions to do more tests and tell me to get a cardio referral at the least.) Ive never collapsed like that yet ive still had multiple heart imagings, with another coming up. Doctors always incorrectly assume my heart issues are from anxiety  (theyre from dysautonomia and EDS)  and i have to explain my conditions to them, but THEY STILL DO THE PROPER TESTS "JUST TO MAKE SURE".

This should be criminal level medical negligence.

[nerdymedzebra]

Once again, Idk if it has really made a difference but I'm very greatful I just happened to be put on blood thinners (until my jugular decompression surgery in July) before all this! I have enough blood vessel problems anyway (guess what structures blood vessels? Collagen, naturally.

---------

“Months into the pandemic, there is now a growing body of evidence to support the theory that the novel coronavirus can infect blood vessels, which could explain not only the high prevalence of blood clots, strokes, and heart attacks, but also provide an answer for the diverse set of head-to-toe symptoms that have emerged.

“All these Covid-associated complications were a mystery. We see blood clotting, we see kidney damage, we see inflammation of the heart, we see stroke, we see encephalitis [swelling of the brain],” says William Li, MD, president of the Angiogenesis Foundation. “A whole myriad of seemingly unconnected phenomena that you do not normally see with SARS or H1N1 or, frankly, most infectious diseases.”

“If you start to put all of the data together that’s emerging, it turns out that this virus is probably a vasculotropic virus, meaning that it affects the [blood vessels],” says Mandeep Mehra, MD, medical director of the Brigham and Women’s Hospital Heart and Vascular Center.”

[nerdymedzebra]

Using curves and white balance on my phones editing app i cant get the brightess better matched, but but this seems a pretty accurate comparison of my feet on a bad night, and my feet during the day when im fine. Both pics i havent really been on my feet. #Dysautonomia

https://www.instagram.com/p/B-yTYZzjWv-/?igshid=1kqc4zjr2582s

[nerdymedzebra]

#covid19 post: This is from earlier last month. A picture I had my bf take for me to share here, as it was oy the second time I've used a wheelchair in a place like this, but it made it soooo much easier!

But I forgot to post that day, then a few days later, I was sick. And now, 3 weeks later am I finally (mostly) back to normal (still a little cough). I had a Tele appt with my Dr last week and she declared me presumed positive for covid19. I think I got sick before CO even declared community transmission was happening here! Im curious as to whether I picked it up at ikea and had a short incubation time, if I got it at one of my Dr appts the couple weeks before, or if my bf's kid brought it home (he didn't get sick but me and my bf did at the same time kiddos mom and step-dad had "colds") or my coffee shop frequenting boyfriend did. Well never know of course, but I do wonder. I leave my house often like once a week max, yet even I had it before the state admitted to community transmission! So, lol.

Definitely going to get an antibody test when they are available to confirm (or disprove, I guess?) that's what this was! (at IKEA)

https://www.instagram.com/p/B-gRIsdD8Q3/?igshid=irc47a40l9c

[nerdymedzebra]

EDS/HSD and other hypermobile people! this well known EDS movement therapist  has made her online program free for 3 months! Since I usually have weekly pt and I'm feeling my absence, I'm going to try to start doing this. But we'll see. I can never manage to make myself do my PT homework :x Maybe if anyone wants to be my accountability buddy?!?!

[nerdymedzebra]

A new paper arguing that the cutoff for what is considered "elongated" be changed.

The research already shows that elongated styloids are quite common in the general public, and only about 4% are symptomatic. So this is frustrating because as we all know-- the objective measurement doesn't necessarily mean anything, because it's dependent on the rest of your neck anatomy.

However, it *doesn't* seem that what is considered elongated is actually valid anyway, since the average here in asymptomatic people is above it. 😕 So i do think we should have more accurate measurements... but also I know if they do change it it'll make it harder for some people to get diagnosed. :(

I think the Eagle's definition should stop being so measurement focused and be more focused on "is it actually messing with stuff?" But I won't hold my breath.

"The normally length of styloid process ranges between 20–30 mm, considering elongated those ≥ 30 mm, but other authors propose an elongated SP be considered > 45 mm.

In our asymptomatic patients, the mean length was on elongated range: 31.67 ± 0.97 mm on right side and 31.64 ± 0.90 mm on left side.

A 27.6% presented a morphologically elongated SP (>25 mm of continuous process), 49.5% presented a radiologically elongated SP (>30 mm), and a total of 9.59% had a longer length then the proposed ≤ 45 mm.

The high prevalence of asymptomatic patients with elongated styloid process in this study and the literature supports the need for a new definition of elongated."

[nerdymedzebra]

I know some folks with vascular Eagle's have carotid compression. This is about fixing stenosis, but I'm guessing that they are pretty similar in their reducing the amount of blood flow to the brain. Anyway, this shows that fixing that significantly improved cognitive function!

Has anyone here had carotid compression + surgery? Did you notice a difference afterwards?

[nerdymedzebra]

For #RareDiseaseDay I want to share some info about my most recent diagnosis: Eagle's Syndrome. There are two types: classical and vascular.

In VASCULAR TYPE (which I have) the styloid process may be elongated beyond 3cm but isn't always (mine isn't), but due to anatomical variation, the styloid may still be pressing on the carotid artery or jugular vein, and often the vagus nerve, too. Often the jugular & vagus nerve are squished in between the styloid process & the c1 vertebra, as mine is. (Some people the styloid process isn't involved but instead certain over-tight muscles in the area create the same effect. Idk if that's technically ES, but it should be imo)

This can causes problems with: getting oxygenated blood into the brain (carotid) or draining the deoxygenated blood out of the brain (jugular, which needs to happen before oxygenated blood can get in there via the carotid) leading to intracranial hypertension & possible cognitive & vision impairment; tinnitus (including pulsate tinnitus); pain and discomfort around the compressed area; possible ear problems; etc. The vagus nerve compression may contribute to dysautonomia as well (including syncope).

In CLASSIC TYPE, the styloid process is elongated beyond 3cm, &/or the stylohyoid or stylomandibular ligaments are calcified.

These can then cause a lot of trouble in the throat region, including: stabbing (sometimes all the way THROUGH the throat), face and neck pain, palsy, difficulty swallowing, tinnitus, TMJ, the feeling of something being stuck in the throat, syncope, and sometimes can even dissect the carotid artery, etc. As the NIH's rare disease page says:

"About 4% of people have an elongated styloid process. However, only a small percentage of these people (between 4 and 10.3%) have symptoms. The incidence of Eagle syndrome is therefore estimated to be about 0.16% (1 in 62,500)" 

(there is no estimates I can find on vascular type, but drs know about it even less than classical) ---- Eagle's syndrome is not well known by doctors. Dentists actually seem to catch it more than anyone else. There have been a lot of people with super long styloids poking INTO their throats and still the doctors refuse to acknowledge that Eagle's can cause problems. That's a huge issue for basically everyone with any kind of #RareDisease-- doctors can be aggressively ignorant. We need more awareness so more doctors know about it, and more regular folks know about it so they can seek out ES knowledgeable doctors in the meantime!

More info: https://rarediseases.info.nih.gov/diseases/9401/eagle-syndrome https://radiopaedia.org/articles/eagle-syndrome?lang=us &

Eagle Syndrome Group Eagles Syndrome

(Also, though I haven't seen it, I hear a couple weeks ago Eagle's Syndrome was featured on Season 3, episode 14 ("Influence") of  The Good Doctor! (https://abc.com/shows/the-good-doctor/episode-guide/season-03/14-influence))