Appointment with Dr. Hep's NP (Allison) - definite jugular compression (and possible EDS)

Hey all,

So I had my appt with Allison Love (Dr. Hepworth’s nurse practitioner) last week - and I was so blown away! She basically confirmed everything that I had researched and that you guys had said, and was able to get me in for a CTA within 2 days there in Denver (she wanted to do it local so that they used the proper protocols). She spent a lot of time with me, never dismissed anything that I said, and listened to the whole story. My appointment with Dr. Hep will be in May, and we will discuss surgery at that time - I will most likely have the left one out first since it seems to be the worst problem child. (I have a 75% compression of the left jugular and a 50% of the right). She also believes I DO have an active CSF leak (the first doctor that believed me), and we will address that if it continues to cause problems after removing the styloids.

Thank you guys SOOOOO much (@Isaiah_40_31 ) for recommending Dr. Hep - I sort of sat there and cried in the office which was all sorts of embarrassing. I feel like this has saved my life, and it was so worth the drive and wait for the appointment. For the first time in this whole journey I feel relaxed, like I didn’t have to fight and that the doctor’s “got this”.

One other thing that did come out of this has kind of shaken me a bit - she said that the only time she had seen a neck like mine was in someone with a connective tissue disease - specifically ehlers-danlos. She believes a big part of my problem is cranio-cervical instability and that my C1 keeps moving forward pushing even more against the elongated styloids. I have done some research and believe that I have either hypermobile EDS or am somewhere on the HSD spectrum.

I am able to bend over and put my hands flat on the floor at age 50 (with no warm up), both elbows and knees hyperextend, I have had 4 broken arms, multiple sprains, torn both rotator cuffs, had 3 knee surgeries, shattered my ankle, and dislocated my elbow. I have piezogenic papules on both heels, an arm span to height ratio of 1.05, and low blood pressure…that’s just to name a few. I have Band-Aids with me wherever I go because I always seem to be bleeding, I bruise very easily and I have atrophic scarring in multiple places. I never even thought about it being part of the problem - I just thought it was cool that I was so flexible and I was always the contortionist when I was a kid.

The realization hit me, however, that removing the styloids would alleviate the ICH and a lot of problems that I have been having lately - but the real source of the problem may be EDS. And then there’s the fact that it’s genetic…I am 90% certain that my youngest daughter has it as well. I am searching for a doctor here locally that is knowledgeable about EDS/HSD and will go from there. If anyone has any suggestions on how to pursue this I would love to have your opinion.

I’ve sort of opened up a can of worms, about 1/2 of my family have similar symptoms and it’s prevalent in multiple generations. I believe that my ridiculous amounts of high-risk physical activity over the years has caused a higher degree of injuries and problems than others in my family, which has triggered the CCI, which has triggered the vascular problems and jugular compression. Again, the rabbit hole just keeps getting deeper…

Anyway, thanks again to everyone who pointed me in the right direction, I owe you so much!


@Rather_b_hiking you might want to check with @hyperichard who had two surgeries with Dr Hepworth re connective tissue disorders.


WOW @Rather_b_hiking. Sounds like Allison’s surprising information is helping you to '“put the pieces together” even more thoroughly than you expected. Unfortunately, we’re seeing more & more of our members who have IJV compression also have CCI which very often goes along w/ EDS. I’m sorry I don’t know of anyone for you to see in CO, but it’s possible our resident EDS aficionado, @Snapple2020, may know of someone. I do know that Dr. Hepworth’s go to for CCI diagnosis/treatment is Dr. Henderson who is in Washington, DC, area.

I’m very sorry that you have this additional concern but am so glad you’re more fully informed now so that you can pursue more complete treatment for your symptoms.

Sending you a hug :hugs: & praying :pray: for steady forward progress in achieving recovery.

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Glad that you’ll be able to have surgery with Dr H, hopefully it’ll relieve the jugular compression, IH & CSF leaks…a worry that you potentially have a new diagnosis too though, but at least you can potentially get some help for your daughter & caution her about high risks sports…@Snapple2020 has posted alot about EDS as she & her daughter have it, she’s posted good info about getting diagnosed & treatments, if you have time you could search for some in the older discussions…
Hugs & prayers from me too :hugs: :pray:

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Hi rather b hiking!
Your history sound alot like mine! Ill try to keep it brief as I tend to say alot. Ive been struggling with EDS since whiplash at age 19, then skiing (i used to reside in CO) at age 22 and dealt with neck issues all my life. Lots of ligament tears. Now dealing with TOS and going in for knee surgery (old skiing injury) in a couple weeks. It is truly like playing whack a mole. I didn’t official know I had EDS until my daughter was diagnosed with POTS at age 13. They are finding high % of POTS patients also have EDS. I as well as my daughter have low blood pressure as well. She was tested at Vanderbilt and has known low blood volume (about 20% deficit) as well as small fiber neuropathy. We both have IBS. There is no doubt this is genetic.

I was surprised to find this in CO (a good place to start):

Gates Institute, Children’s Hospital Colorado, and the CU School of Medicine have joined forces to elevate our national leadership in research, innovation, and care for Ehlers-Danlos Syndrome (EDS), a collection of difficult-to-treat and debilitating connective tissue disorders.

I have several books I suggest:

  1. Joint Hypermobilty Handbook by Brad Tinkle, MD, PhD.

  2. Understanding Hypermobile Ehlers Danlos Syndrome and HSD

  1. New book set to release August 1. Its $148.00 It is really meant for clinicians but for those who like to research, it will be most comprehensive book to date. Written by several EDS specialists. (my hand surgeon William Ericson, MD. who is EDS specialist also contributed)

Feel free to message me privately. Ill be happy to chat on phone or wherever.

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Symptomatic - 1st Edition


The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders

1st Edition - August 1, 2023

  • Editors: Clair Francomano, Alan Hakim, Lansdale Henderson, Fraser Henderson
  • Paperback ISBN: 9780323950824


Symptomatic: The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders offers a novel approach structured around the panoply of 75 symptoms with which a person with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) may present to a clinician. The content is arranged intuitively from head to feet, with each chapter integrating clinical case studies with a concise discussion and two important diagnostic tools: a simplified algorithm for diagnosing and treating each symptom and differential diagnoses and alternative explanations for their symptoms. This is a handbook that combines the expertise of some 70 leading clinicians, representing more than 30 specialties. This book is suited for clinicians who need a concise and straight-forward presentation of the various and complex symptoms they confront in their clinical practice. It brings forth a field of knowledge emerging from interdisciplinary collaboration despite the pressures of specialization that bridges gaps in understanding between the several dozen disciplines implicated in EDS and HSD.


Dr. Henderson is who my hand surgeon referred me to for CCI evaluation although I haven’t made it back to east coast for further evaluation.He does not do telehealth that I am aware of. Dr. Henderson is a contributor/author of the above book set to come out in August. He requires a special rotational CT scan to evaluate for CCI. Luckily my hand surgeon in Seattle has someone in Seattle that does it to his specifications. I recently had one and my issues seem to be at C1-C2 although it isn’t severe. This area is always where my chiropractors go to adjust. It rotates out all the time. This whole group of doctors sit on International EDS Consortium.

Fraser Henderson, MD


Having a hEDS diagnosis made so much murky stuff in my life finally come together and make sense. And I think people who know their kids have it have a much easier time guiding and advocating for them. It may seem daunting at first, but it will help you make good choices for yourself and others, help you communicate better with your docs and surgeons, and get your needs met.


I just had Co-C2 fusion and occipital decompression for Chiari with Dr Henderson 5 weeks ago. He will do an initial telephone consult but requires an in person visit if surgery is a consideration in order to perform a very thorough neuro exam (which is the best I have experienced after seeing other NS) and review images.


thanks so much for the resources, I’m sure I’ll have tons of questions as this progresses.

It has made so much sense, it was a real “aha” moment for me - all of those little things that have continually plagued me through my life suddenly make sense. I was always the one sick, always the one hurt, it became a joke. I’m almost 50 (bday next week), and my approach to life has always been to push it to the limit. My favorite quote is:

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!” - Hunter Thompson

That pretty much sums up my life. I have asked myself a lot of questions in the last week, what would I have done differently if I had known my condition? Would I have wanted to know? I’ve done so many things and had so many adventures…in a weird way I am glad I didn’t know.

But…the flip side of that is where I’m at now, so many aches, pains, and I have been told I will need a knee and hip replacement in the next 5 yrs…and I know it’s just going to get worse. These are the things that keep me up at night.

My children are young adults now, my daughter that I mentioned is 21 and a pre-med biology student. She’s had many of the same problems that I had as a young person; GI issues, chronic headaches, and constant injuries. I want to speak with the doctor first and firm up this diagnosis before saying anything to her - but she’s got so much drive and is so strong-willed that I have no doubt she will be able to fight her way through this. I think it will make her a better doctor in the end (if the condition will let her get there).

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I have my visit with Dr. Hep in May and plan to get a referral to for CCI. I had a rather violent bicycle wreck 2.5 years ago that I know caused ligament damage to my cervical spine - that’s when everything went completely haywire and the IH started. It’s crazy to have to go all over the country to get evaluations. I’ve griped a lot about the lack of specialists in Oklahoma that are qualified to treat my issues, but in some ways it’s good because I’m right in the middle of the country. So yay?

Thanks for the help and resources!


Murky is right. When I read the Brad Tinkle EDS book many years ago, it all came together for me. All these issues that seemed unconnected in my life were connected. It was a relief that it wasn’t all in my head. I pretty much beat my body up physically for decades and now those old injuries and pushing of my ligaments are coming back to haunt me. I agree, now that I know all this from experience, I can caution my kids who also have some degree of EDS to not do any extreme sports or other things that will harm them.
Unfortunately not many doctors or medical professionals have much knowledge about EDS and no matter how much I try and communicate and even bring peer reviewed articles to them, they remain dismissive or uninterested. Finding doctors and dentists who have knowledge and know how to manage EDS patients is a huge challenge. Even my own PCP told me I am too complex to manage as a patient. I know there are Facebook EDS support groups by state and I was able to get a list of EDS friendly docs in my state via email. I dont do social media but this is a good resource to tap when looking for providers.


I was really surprised to find an EDS center popping up in Denver b_hiking. There is a movement to create EDS “Centers of Excellence” by the (MUSC) Medical University of South Carolina (doing gene research for hEDS) to help manage EDS patients because so many patients struggling to get proper care. I did not know one existed yet. You have Denver in your backyard and I encourage you to look into them as I will be myself. Being in Oklahoma is probably a better place to access EDS care as it is spotty on west coast with no cohesive care center. All of us who have hEDS are on a spectrum of severity or different subset of symptoms. It sure wounds like your EDS is significant to be looking at hip and knee replacement at age 55.
Sounds like your daughter is functioning well considering some of her symptoms. My daughter is 28 and has been disabled from POTS since age 14. Her headaches and GI issues started at about age 9. High levels of stress really impact her nervous systems and she really flares under these conditions.
We have been going down the GI rabbit hole for a couple years. Apparently alot of EDS/POTS patients have SIBO (small intestinal bacteria overgrowth) from GI motility issues. We have done food allergy testing and trying to go gluten free. Doc has given RX for Cromolyn for the GI issues which he gives for mast cell related symptoms. It has no side effects and one of the few meds that actually has been helpful.
I like your Hunter Thompson quote…Im with you on that one. :rofl:


That is a narly surgery to go thru. I saw a friend go thru Chiari surgery and the recovery was quite painful for her. How are you doing thru this? I am glad to hear you had a great experience with him!
Im glad to hear I can get an initial telephone consult with Henderson. That is what I was told last year when I called his office. My hand surgeon speaks so highly of Henderson. Now that I have the specialized scan he requires, I will have the disk sent to him for review and set up a phone consult. Id rather get a general idea about whether surgery would be an option and I should spend the funds to fly back there. I know he doesnt take medicare and his fee will be out of pocket so it will be a costly venture for me.


Very tough for you @JustBreathe, I hope that you heal well, will be praying for you, God bless :bouquet: :hugs: :pray:


It is a huge surgery for sure but my only option to save my skull base. I had the fusion/decompression 5 weeks ago and just had a cranial CSF leak repair (God willing my last) on Monday so the recovery from both of those is extra rough. Slow and easy is the name of the game :wink:


And good drugs. :crazy_face:

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@Rather_b_hiking I’m a little late to the convo here but I’m so glad to hear that you’re finally getting some answers! I found out I had hEDS about 3 years ago, which led to finding CCI, thinking I had a CSF leak and now finding out about ES. It’s been quite the journey with many ups and downs and mixed emotions. Ultimately it feels good to have answers and finally make sense of my body and what it’s been through in my lifetime (I just turned 38 this week and started having symptoms as a child). Another book I highly recommend, which is an excellent guide for patients and parents newly diagnosed with hEDS or HSD is Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. It has so much of the information you’ll need. Another great one is The Trifecta Passport by Amber Walker.

Feel free to reach out to me directly if you want to connect more about all of this. I’ve been navigating it for a while now and I’m always happy to offer whatever support I can!


@Melodious21 I’m a little late responding, lol, but it’s been a busy week. It’s funny - I went the exact opposite - from CSF leak, to ES, to CCI, to hEDS…to POTS, and now possibly chiari.

I just saw a doctor here locally who specializes in EDS, he’s a primary care but he focuses on diagnosis and management of EDS and getting his patients pointed to the right specialists. (He’s also a funny, quirky English guy and spent an hour and half with me) He diagnosed me with hEDS (I was a pretty easy diagnosis evidently - how my orthopedic and other doctors never caught this is beyond me…). He also diagnosed me with POTS, which explains sooooo much. I really didn’t realize just how bad things were. I’ve gotten so used to feeling so terrible that I take it for granted. I’ve gotten to the point that I’m not sure what “normal” feels like.

He also strongly suspects a positional chiari malformation based on my neck pain, occipital headaches, dizziness, balance problems, tinnitus and hearing loss, etc. My supine MRI shows a mild tonsillar ectopia (not enough to even warrant mention on the radiology reports), and he strongly believes an upright MRI will show something much more. I have that ordered and will be getting it on Monday. So my rabbit hole keeps going deeper!

I honestly not sure what to think at this point…what symptoms are due to hEDS, what are jugular compression, what are due to a possible chiari… And if I do have chiari, is that something to fix first? Or at all? I am just a bit overwhelmed. I don’t see Hep until May 11, so I’m just kinda spinning