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Eagle Syndrome - Online Support Group

Eagle Syndrome and Ehlers-Danlos?

Does anyone with Eagle’s in this group also have Ehlers Danlos Syndrome. I remember someone mentioning it, but I can’t remember if it was in this group. Thanks, Krista

Yes!!! I have ehlers danlos type 3 as well. I was wanting to ask if there are other ES patients that have hypermobility or double jointed. I have a feeling the styloids have something to do with some of those with cervical instability. Also, the chiari in some way. I think these styloids and EDS is a bad recipe for us. This is my own opinion. I just there was more research on Eagle’s syndrome. Also, Drs not rushing to judgement and saying its TMJ. Okay, I stop with my rant!!! I could go on for days and months about how frustrating it has been for the last 5 years!

Oh Amy, I've been there too!!!

I was just DXed with Eagle's after having symptoms since 2005-2006. I'm relieved to have a DX, but a little nervous as to how to move forward. Honestly, I don't know if I have Ehlers Danlos...Can one have EDS and not know it until the SXs become bad enough for your doctor to put the pieces together? How can I find out more about EDS?

Where are you in your "Eagle's journey"?

kljs29,

I as well have just been diagnosed with EDS, not sure which type yet I will see a geneticist in the near future. I also had my right styloid removed. I wore a neck brace at night for almost a year to stabilize my neck while I slept to try and keep my styloid from continuing to irritate my carotid artery as much as possible at night it helped a lot.

Your best bet with EDS is to educate yourself as much as possible and then get as much family history from as many family members from the side of the family you suspect it came from as you can and then take it all to your doctor and tell your doctor you want to see a rheumatologist and a geneticist. Research local doctors that are familiar with it first so you can make sure the doctor you are going to has EDS experience. Unfortunately like Eagles syndrome, EDS is rare and doctors don’t look for it as a rule.

RB

Thanks, R.B.! This all came about rather strangely. A few weeks back I ran across an online conversation about Ehlers-Danlos. It caught my attention so I jotted it down on a sticky note, but I was still fighting for my Eagle's DX, so I kinda' forgot about it. Yesterday when I was at my doctor's discussing my Eagle's DX, specialists and how to proceed (specifically if I would be able to get insurance approval to go out of network), he mentioned a different situation in which they petitioned the insurance company to send another patient out of network for (...wouldn't you know it???) EDS!

I mentioned that I thought there were some Eagle's patients who had EDS too and described a similar symptom (my left ankle often "pops out of joint" when I try to sit "criss-cross applesauce"). It peaked his interest, but we are still very focused on the Eagle's. It was too much of a coincidence for me, so when I got home last night and started to do my own research on EDS I was amazed at the number of SXs I actually have.

The strangest symptoms I have right now is that I feel like my tailbone is dislocated or "moving back and forth" when I shift sitting positions. We've done x-rays and a bone SPECT in the past and there is no evidence of a fracture, so the docs have concluded that the pain and soreness is related to a bulging disc located in my lower back. Now I'm beginning to wonder if it's actually due to the weakened or stretched ligaments???

I have another appointment with him in two weeks. I want to do my homework, but I don't think he'll be at all surprised if I come back to him with EDS. Part of me wonders if he won't maybe even "connect the dots" and reach the same conclusion too before our appointment.

If you google Beighton Score and it rates your over all flexibility of joints. But only a doctor should say yes or no. Beighton Score is what the geneticist used to rate a person. I didnt know I had it until about 3 years ago. Most Drs do not know what it is or have incorrect information. You have to educate some of them. It is considered rare but it will stay rare if Drs continue not check every patient. It would take less than 5 minutes for doctors to assess for it.

Here are 2 websites that are good resources for EDS
www.inspire.com

www.ednf.org

Thanks so much, Amy! (By any chance are you also a member of the TOS FB group too?) :-)

YES!!!..lol!! I thought that was you from TOS FB page! Dr Samji said that TOS & Eagle’s symptoms are very similar and he has seen both type of patients. It can be hard trying to figure out what is the best type of surgery. I never saw much relief from taking my neck muscles and first rib out. So far, this recovery has made the difference. I am glad to see one of you guys on here!!

Inafog,
I had EDS type 3 as well. You have very similar symptoms that correlate with Eagles syndrome. For my styloids to FINALLY show up was by a rotational CT SCAN. I have read another post that there styloids were visible by MRI or X-ray. But the majority only show up on CT SCAN. Then finding an experienced ES surgeon to look at your images is very important. Diagnoses by imaging is in the EYE OF THE BEHOLDER. My local Drs didnt think I had Eagles. Mine was below 3cm but VERY THICK. Also, my surgeon said my jaw bone is very narrow, made the area even more tighter.

Inafog, Your SXs sure sound awfully similar to mine. It is possible to see an indication of elongated styloids on an x-ray, but a CT scan will provide a more definitive answer, especially a 3D reconstruction of your CT scans. If you can get ahold of your panoramic x-rays from your dentist, you may be able to see them on those too. If you google “eagle syndrome x-ray images” or “eagle syndrome panoramic x-rays”, you should be able to find examples with which you can compare yours to.

I just posted a question about extra/fewer vertebrae.

Just had injections for pain in my mid-spine. The dr. took awhile to figure out how my back was put together. They finally said I only have 4 lumbar v., which in turn usually means 8 cervical v. Hmm. Could this affect Eagles. As I just had two craniotomies for SCDS, I am not surprised at any conclusions. I just wonder why no other dr. saw this; other than I think they assumed that two of my v. had compressed, but sill. 8 cervical v. gives a person a longer neck, swan neck; that definitely ran in the father's family. I always felt like a bobble head...

Another comment. Had to reread the postings to put it all together. I don't know about ES, but the hyper-mobility is there, as well as other symptoms which go with that. I also just read something (have to go back and find it) about the development of the jaw and ear areas. I have a short thin jaw, high palate, crazy teeth, etc., disorders of my eye on my problematic side. Extra this, missing that. My stylohyoid is calcified and thick, but not really extra long. If my neck was shorter, would probably have had more problems with the stylo?

Guess if I had had money and not had to work so hard and spent more leisure time in the sunny islands, I might not have had problems like this.

Just read that early osteoporosis is part of the EDS diagnosis. That is me..

Looks like I should have read more, but I forget things too easily. Also have the skin symptoms, etc., etc. Sure don't want to focus on this, but it is something I should ask my Dr. about. With all of my medical issues, I don't know how or why I have lived this long (67 yrs.), honestly, it was not a pleasant journey.

Hi Amy. I have tos and eagle’s. 6 cm on right 3 on left and mild cervical instability throughout. I am thinking of proceeding with styloidectomy as tos would be rough on my already weak neck. Hoping that styloidectomy will help me flex better and improve tos. What was your experience with dr. Samjii. Cognetti already said I was a good candidate. Thanks!

You would be in good hands with Dr Samji :wave::+1:

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Hi Jenniferobel,

I second Jules comment. Though I don’t have ED or TOS, Dr. Samji did my ES surgeries in 2014 & 2015 & I’ve been going gangbusters ever since I healed. Healing from this surgery does take time (a couple of months plus) after each surgery. Dr. Samji & Dr. Cognetti both require two surgeries for bilateral ES. Dr. Samji does make ES surgeries more of a priority in his practice than Dr. Cognetti so you might get in sooner. Dr. Samji also removes the styloid to the skull base if possible where Dr. Cognetti leaves about an inch of styloid (normal styloid length). Just a difference in surgical practices not necessarily right or wrong. The one caveat to that is that a few people have experienced regrowth when a bit of styloid is left behind. We have also had at least one member who said she had regrowth even after the styloids were cut back to the skull base. Some peoples’ bodies are just very determined to lay down calcium where it’s not needed.

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Thank you so much. My symptoms are upper trap weakness, facial muscle weakness, hearing loss, hoarse voice and unequal pupils with NO eye tearing. I hate to have my head in flexion which could be the eagle’s? I also don’t blink anymore.

My tongue also doesn’t like to move normally anymore.

How did you feel confident that it was the eagles doing it?

How was your recovery?

Thank you soooo much.

Hi Jenniferobel,

It sounds like your accessory nerve (trap weakness), facial nerve (affects the muscles of expression in your face); perhaps trigeminal nerve (mostly causes facial pain, but can indirectly affect hearing & can cause eye pain); vagus nerve (hoarse voice); the hypoglossal &/or glossopharyngeal nerves can affect tongue function. The oculomotor nerve would be the one affecting your pupils & blinking muscles, but it’s not typically affected by ES. Look up Two Minute Neuroscience on YouTube & watch the short video provided for each of the nerves I’ve mentioned. The location, function & symptoms of dysfunction are described for each nerve in each video. Watching these will help you understand better what problems your elongated styloids are causing as they tangle w/ these nerves.

Does having your neck in flexion cause severe pain or do you get dizzy, headachy, or experience pulsatile tinnitus? If you experience the latter symptoms, you possibly have some vascular compression occurring when your neck is in flexion. Elongated styloids can compress the internal carotid arteries or jugular veins when the head is in certain positions.

Tongue & other mouth issues were among my ES symptoms. I also had many others. I choked on food (needed to have the Heimlich Maneuver done on me a couple of times - most unpleasant), had blood pressure issues & heart palpitations along w/ lots of pain in my face, behind my eyes, at the back of my skull, in my throat, collar bones, teeth. Beginning to understand the cranial nerves & their existence in my neck & near the styloids helped a lot in giving me the confidence to believe that all my symptoms were caused by ES.

My recovery from each surgery took about two months w/ some nerve recovery taking up to a year or more. Some of my symptoms were gone when I awoke from surgery. I don’t work but if I’d had a job, I would have been able to resume it about 2 weeks post op.

I did end up with First Bite Syndrome & a half paralyzed tongue after my first surgery (my glossopharyngeal nerve was wrapped around my styloid process & had to be moved so the styloid could be removed. This irritated the nerve & caused the tongue issue). My tongue recovery took about 9 months. FBS is still with me but very intermittently now & even after 5.5 years is continuing to be less of a problem leading me to believe those nerves are still healing.

Having ES surgery took me from a somewhat debilitated state to being able to live my life fully again. I do still have a little pain here & there as well as a little facial numbness, but I count these friendly reminders of how far I’ve come and am thankful every day for how well my body has recovered. Dr. Samji did my surgeries. He had done about 70 ES surgeries when he did mine. He’s done 400-500 now.

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When you say two months, do you mean nerve recovery or to carry out your activities of daily living. My body literally refuses to flex my head and I get very dizzy if I do. I passed out at full cranial flexion. My hyoid bone is at c1-2 because of the calcifies ligaments which doesn’t help. My neck is very weak and no matter how much strengthening I try, it is slow going. One pt thinks because of the eagle’s, I won’t flex or retract therefore I won’t recruit my deeper stabilizers and that is also contributing to the thoracic outlet. I read on here that some people’s thoracic outlet resolves after surgery. I’m worried to think it is a panacea but I have so many wierd autonomic dysfunction symtpoms. Flexing my head causes my feet to turn colors as does eating. You could theorize it is the affect on the carotid sinus. I also have a very thin neck w little space between my cranium and neck and narrow palate. Dr. Cognetti approves me for surgery on June 5 but I wanted to speak to Dr. Samjii and see whoever had the most experience. Do you have a sense who is best with a complicated patient? It’s probably very tangled in there.

Thanks again.