Hi everyone on this wonderful forum, I’m trying to get evaluated for ES!
First, I’m a 53(F) and have a slew of diagnosed health issues, to include Ehlers Danlos, POTS, MCAS, SFN, and CVI (chronic venous insufficiency), PVCs and PACs. These all began as covid related issues, even the hyper mobility had a strange sudden onset. Since covid, I have also developed a mitral valve prolapse, a torn hip labrum and torn knee cartilage. My one condition prior to covid was 25+ year old lumbar spine injury, from a sports collision that left me with a grade 2/3 lumbar spondylolithesis. It’s a lot to manage.
Second, I’ve been having the following symptoms for the past 3-4 years, which are specific to possible ES:
— intermittent L side neck pain (right over the carotid artery, where the pulse is taken). It comes and goes every few months, and can last several weeks to over two months. When it flares, it is unrelenting in it’s presence, but it can vary from a very sharp pain to dull, to a burning pain. When at it’s worse, the pain is about an 8 out of 10, then can fall back to a dull 2-3. It is constant in any position, yet turning to the left or down seems to make it worse.
— it is often accompanied by a strange “catching” feeling, like something in my neck gets caught and then releases, like a pluck on a guitar string
— My voice is hoarse if I talk too long on a phone, etc. I have trouble swallowing pills.
— I had a three year period of constant L sided pulsatile tinnitus. This actually began the day of a vaccine and later reduced a lot when I began treatment for POTS (which also began with a vaccine and got worse with covid). My POTS doctor said I had a 30% blood flow deficiency to my brain and put me on Mestinon to help with blood pooling in my extremities.
— I also experienced strange head issues, where the top rear of my head felt tremendous pressure, and would internally vibrate. Like an internal tremor, but not seen from the outside. Happens most often in a supine position. These were daily for almost three years, but have reduced more recently.
— also had the feeling of “bubbles” or water traveling up the back of my head and neck (CSF leak?) No doctor would take me seriously on this symptom, nor the tremors. (This began after a vaccine and worsened with Covid)
— I have L sided jaw pain and jaw subluxations. I clench on the L side and wear a night guard.
— I often have L sided head aches and occasional migraines. Migraines began with Covid.
— my L eye waters a lot. My computer distance vision is blurry (had a sudden onset) and no glasses will fix it. I have been near-sighted since age 8.
— I have brain fog, short term memory issues and word finding issues. These began with Covid. I take LDN for this, and it helps enough that I was able to go back to work full-time.
— I had extreme weight loss with Covid, and began having cervical spine instability (head felt too heavy for my neck, lots of overall neck pain)
— I get very dizzy if I look up at the sky or ceiling (cannot get on a ladder anymore). I also get dizzy if I bend over, especially in a position like kneeling to look under a bed, for example (I will black out)
— I have unexplained heart rate issues where my HR is too high with any exertion. I am only able to walk at a slow to moderate pace. I do long walks daily, but I am not able to build up any stamina due to high HR (stress tests are normal). I used to be a D1 athlete and a competitive distance runner, so this slow walking limitation is frustrating and confusing.
— I’m sure I am forgetting other symptoms! I also recognize many of these could be long covid or immune driven.
Third, and to my main question: What is the best imaging for me to have at this point? Despite my large medical team, no one is familiar with ES, aside from my physical therapists who are somewhat familiar from the EDS community. My vascular doctor is willing to investigate the neck pain and has ordered a Head and Neck CT with and without contrast, but she asked that I reach out to ENTs for better guidance. I contacted Dr. Cognetti’s office and they said those tests are fine. Dr. Costantino asks for a Head and Neck CTV and a brain MRI. These are quite different requests so I am confused what to share with my doctor. I also have had poor reactions to MRI contrast in the past (give me long migraines)
One last note, I do seem to have a weak vascular system, with “floppy” veins and arteries. I bruise very easily, and often blow vessels in my hands from simply carrying a pot of water or bumping something. I was tested for vEDS, and while I tested negative for it, I do have an unknown mutation on the gene that causes vEDS (so, I have what is called a VUS or variant of unknown significance). Some doctors tell me to be extra cautious, while others say don’t worry at all. I don’t enjoy being left in limbo with such a potentially risky condition.
TLDR: based on symptoms, what imaging should I get? I’m inclined to start with the “Head and Neck CT with and without contrast”, especially since those are scheduled for next week and I am currently experiencing pain in my neck. But of course I don’t want to end up needing more imaging, if I choose wrongly.
Thanks all for reading!
