Hi All!! New to the group and to ES. I went to a NUCCA Chiropractor a week ago at the urging of my Neurologist for my migraines and my constant headaches from my Chiari Malformation as well as my tinnitis, dizziness, numbness in face, arms, hands, occasional sore throats with no explanation, pain below my ears with no explanation, etc. The Chiro did x-rays and found what he believes to be ES and I am currently awaiting referral to ENT. I read through the list and closest specialist to me for ES is Manhattan, KS. I have messaged my doctor about going ahead with CT’s and let her know (she is my PCP) about the one in KS. She has put in a referral already for an ENT through our Saint Francis healthcare system here in Oklahoma prior to me finding this group. I will see what she can come up with on getting me in to KS. I also having Pseudotumor Cerebri, Psoritatic Arthritis, Fibromyalgia, Hashimoto’s as well as have Thyroid Cancer post thyroidectomy, I have C6/C7 fused, Syringomyelia, and I am probably leaving out something lol! MY brain is shot! As well as most of my body!! LOL!!! I am going to attempt to attach the x-ray images he took, please ignore the massive of fat tissue, as well as the fact that at only 44 I have had to have most of my teeth removed due to them just crumbling…they were so thin they would just break off. Oh the joys of all my illnesses. Thank you for letting me join, seeing your stories, getting info and any help or just companionship you all can provide!! It is greatly appreciated!!
Hi amybaby,
WOW! You have entire medical book of health challenges, and I’m so sorry you’re dealing with so many rare & difficult illnesses. I’m glad you came here for info & support as we’ll do our best to encourage & inform you about all things ES.
Here’s a link for all the forums under the Ben’s Friends umbrella as there are others you may want to join: https://www.bensfriends.org/community-list/
The best way to upload images is to click on the underlined up-arrow at the top of the text box then upload pictures from your computer into your post. Your first image didn’t come through at all. Your second & third images did show up when I clicked on the links in your post. I can see that your right styloid looks a bit long in images 2 & 3 but can’t see your left styloid. I assume the first image was of your left side. Can you try to repost it?
It sounds like you’re on your way to getting some help w/ the potential ES diagnosis. I hope the doctor in OK can help you but if not then the KS doc for sure! We try to keep our list up to date but sometimes doctors move, retire, or stop dealing w/ ES so please let us know if you find that to be the case with anyone you contact from that list. If your doctor in OK will work w/ you, & you feel confident in his/her ability to help you, please pass along that name to us as we’d love to have at least one ES doctor referral per state.
Looking forward to supporting you however you need.
Let’s try that one image again…I think it was the front view. I only have the one side view that came through. I only have PDF copies of the images…sorry. image 1.pdf (234.1 KB)
Left side shows well on that one! Looks pretty long…can’t see on the right side though, it could be the image, or it could be that it’s not so long…
Thank you!! I am hoping I can get a CT and learn more from it too. I will definitely get images from it when I do. I appreciate the help!!!
Hi Amy,
Im assuming with Chiari you have EDS? Have you had surgery for it?
I have EDS and although I dont have Chiari, I have a close friend that does and had surgery back in 1991 at UCLA and then surgery a few months ago for CFS leak. She had horrific headaches.
You have alot going on. No doubt you will need a very experienced ENT doc given you other medical conditions. Have you had a CT Scan done the past few years? If not, I would suggest you request a CT Scan without contrast of the neck.
Hi amybaby -
I’ve annotated the most recent image w/ arrows pointing to what looks like your styloids to me. I’m not a doctor so may be totally wrong. I agree the left looks very long & the right maybe a little long but unsure. When you get your CT scan, please ask for the radiology tech to include some 3D images. These will make it much easier for you to see what’s what. My CT came w/ four 3D images - R, L, front close-up & front full skull.
image 1.pdf (464.4 KB)
I have had MRI’s of the cervical spine but not CT’s in the last few years. I have requested a CT be ordered. I have not been diagnosed with Ehlor Danlos but have often wondered if I have it…I have been told by a rheumatologist in the past I am double jointed and my sister and I both have issues with massive scar tissue which is classic with EDS.
Right now I am in a waiting game on further testing and ENT referral for ES too…
Wow amy, I was told I was hypermobile for years and wasnt until my daughter diagnosed with POTS which commonly has alot of EDS and saw a geneticist that I went down the EDS rabbithole.
There is a really great book called “The Joint Hypermobility Handbook” by Brad Tinker. This book will blow your mind. So many years of such weird symptoms that finally all come together. It was like my life. I have had decades of problems that all tie back to the EDS. I wish I had known back then what I know now. The primary one has been I have had to have numerous nerve decompressions from scar tissue from unknown origins. Alot of hand, wrist, elbow ligament tears and repairs. Im not sure how old you are, but this tends to worsen as we age. Often as in my case, I have early onset osteoarthritis and osteoporosis. My elbows are so bad now that they dislocate when I even try to vacuum. Ive had a pretty active live generally and its hard now to limit myself so I dont aggravate the osteoarthritis. Good luck on the ES referral and all.
heres a good link: https://www.ehlers-danlos.com/
Chiari is almost always associated with EDS. You didn’t mention if you had surgery for it? Just like ES, there come a point where the only thing to deal with it, is surgery.
I am now almost 45…this September as a matter of fact!! Geez!! It’s coming quickly! I have had Chiari decompression back in 2010. I also have a dura patch with most of my cerebellar tonsils removed. I often wonder if EDS isn’t in the cards for me and my family as my sister has mixed connective tissue disease and my little nephew is showing signs of having some of the same issues. Our mom was also double jointed and had a lot of the same issues prior to her death from Alzheimer’s.
Hi amybaby,
I agree! Where does the time go?! I’m turning 64 in Oct. One more year until I jump into the Medicare fray. I’m not sure if that’s good or bad.
I was tentatively diagnosed w/ undifferentiated connective tissue disease a few years ago as I had one blood test that showed antibodies related to rheumatoid arthritis then in a follow-up test those were absent but antibodies related to Lupus were present. I am happy to say that I am now free & clear of all blood markers for either of those diseases. I’m not sure if it was lifestyle or diet changes or both that helped turn that around for me, but whatever the case, I’m very thankful to be in the clear now.
I found an interesting article which compares UCTD with MCTD. It’s short & easy to read: https://www.medicinenet.com/mctd_vs_uctd/views.htm
I’m sorry you’re also dealing with Chiari. Have you checked out the Ben’s Friends Chiari support group? You can read posts w/o joining. Your family history does sound like it predisposes you to potential connective tissue challenges. I hope all this doesn’t hinder your ability to deal w/ ES.
I have checked it out! It is a great forum!
The article was very interesting as well! Thank you!!
I have also gotten my CT’s scheduled for later this week…on Thursday so I will get a disc as well from that. I have gotten an appointment with a local ENT in Tulsa, OK via my PCP but did give her the name from the list that showed up for OKC as well at OU that I had not previously seen on the list and my NUCCA chiropractor had a patient who went to the Cleveland Clinic. I gave her that information as well. He is the one who found my ES.
I am not sure if I converted this right or am uploading it correctly. My insurance only approved the CT neck with contrast. I have the images and tried to convert it to 3D. I am not seeing the styloids but I also have no clue what I am looking at!
Hi amybaby,
The angle of the top picture really doesn’t allow us to see much except the front of the hyoid bone so I labeled your styloids & your hyoid bone in the two lower pictures & your hyoid bone in the top picture.
Your left styloid looks like it’s close to normal length though it’s very pointed & curved which could potentially cause ES symptoms. The right styloid looks thick & a bit elongated. I’m not sure I can see all of it in the scan image. It doesn’t look like you have any stylohyoid ligament calcification at the hyoid bone end but that call would best be made my a doctor as my opinion is just that - my opinion - not a doctor here.
Click on each picture to get a larger version where you can see the labels better.
Thank you so much for the info!! I see an ENT on the 21st and will go from there. They did look longer in flat films lol. But I don’t have my report back yet either so no measurements from the radiologist yet. I did let the tech know what we were looking for and showed her the flat films and I think she took some images through that segment separate too so maybe they will give me some answers on the report. Again thank you for looking!!
You’re so welcome!! I hope the ENT is very helpful for you.
Sorry Amy, I’ve deleted the link to your report to protect your privacy; it showed your name & DOB…if you want to copy & paste the conclusion & post that as a quote that’s fine; great that it shows you do have ES! (I don’t mean great that you have ES, but that it’s been confirmed!)
Hi amybaby,
I did read your report before it was deleted & just want to say, I almost made a comment about the greater horns of your hyoid based on the way they looked in your scans above (kind of spiraled or segmented), but I didn’t know if that was an artifact of the 3D slicer or if it was actually how they looked. Interesting that they are elongated. More often we see elongation of the lesser horns as that’s where the stylohyoid ligaments attach. Again we face the “which came first the chicken or the egg” scenario - is it the lesser horns that elongate or the s-h ligament calcifying from their attachment at the lesser horns that gives the lesser horns the appearance of elongating? Don’t know that anyone can truly make that call.
I didn’t even think about that part!!! I was in a hurry to get to my NUCCA chiropractor visit and it came through right before I needed to leave! Sorry about that!!
Here is the report contents from CT Neck w/contrast 9/3/2020
- Elongated bilateral styloid processes as well as the greater
cornu of the hyoid bone which can be seen in Eagle syndrome. - No mass or lymphadenopathy within the neck. No inflammatory
changes.
Date of Exam: 9/3/2020 (Received on: 9/3/2020 2:23:29 PM)
Reason for Exam: Possible Eagle syndrome.
EXAM: CT OF THE NECK WITH CONTRAST.
(NO COMPARISON AVAILABLE)
TECHNIQUE: Computed tomography of the neck was performed with
intravenous contrast from the base of the brain to the thoracic
inlet. Sagittal and coronal reformatted images were reviewed. A
dose reduction technique was used.
FINDINGS:
Visualized brain parenchyma is unremarkable. Circle of Willis is
intact. Visualized orbital contents are unremarkable. Visualized
paranasal sinuses are clear.
Torus tubarius and fossa of Rosenmuller are unremarkable.
Parapharyngeal soft tissues are normal without abscess or mass.
Bilateral masticator spaces are normal. Bilateral parotid and
submandibular glands are unremarkable. No upper cervical
lymphadenopathy. Base of the tongue and epiglottis are normal.
No airway compromise. Thyroid and cricoid cartilages are
maintained. Vocal cords are symmetric. Thyroid gland is
surgically absent. No residual thyroid tissue noted. No lower
cervical, supraclavicular, superior mediastinal, or posterior
triangle lymphadenopathy.
No significant atherosclerotic plaque or narrowing of the
bilateral carotid systems. Visualized lung apices are clear. On
review of bone windows, no suspicious lytic or sclerotic lesions
identified. Anterior cervical fusion hardware at C6-7.
Elongated bilateral styloid processes measuring up to 4 cm. In
addition, the bilateral greater cornua of the hyoid bone are
elongated and extend posteriorly approximately 8 mm anterior to
the transverse processes of C3. Note that the tips of the greater
cornua are in close relationship to the bilateral carotid bulbs.