Hi everyone. This is my first post and I want to start by expressing my extreme gratitude to everyone who manages and contributes to this site. I almost can’t believe that something so valuable exists, and I don’t take it for granted.
I was diagnosed with ES in January, with jugular compression on both sides (more severe on the right). I have an appointment with Dr. Costantino this week. I also suffer from hEDS, MCAS, POTS, TOS, and May Thurner Syndrome. The MTS was found earlier this year as well, and I will be having a venogram in late summer to look for other compressions. I have pelvic congestion syndrome, and the blood flow in my right leg is sluggish, at best.
Something that I can’t stop thinking about is that, once cleared, I will definitely need physical therapy following my surgery. I have severe loss of cervical lordosis (straight neck) and flexion instability at C5-7. Due to my hEDS and poor proprioception and interoception, I have a “hanging head” habit and I do not know how to properly activate my neck muscles. Until I began seeing a hEDS-specific physical therapist a few months ago, I also had zero knowledge that I haven’t been using any stabilizing muscles throughout my body and have been “hanging” on my joints in various ways throughout my entire life. Out of abundance of caution, she refuses to prescribe any upper body stabilization exercises until Dr. Costantino clears it, but in the meantime, she has taught me how to find and use my transverse abs to create internal pressure, how to breathe correctly using my diaphragm, and how to stack my ribs into proper alignment. This alone has resulted in a resolution of my TOS symptoms and of my slipping rib syndrome.
All that said, my physical therapist is virtual and there aren’t any who are knowledgeable in hEDS within a 3-hour drive. I’m so worried that attempting virtual PT for my neck following surgery will be a disaster, and am wondering if anyone has experience with this issue?
@hEDSNikki I might be out of place saying this but I would recommend focusing on surgery and recovery first. You may find that the rest falls into place afterwards. I had lost my lordosis curve prior to surgery noted on imaging and on follow up MRI 4 months post op styloidectomy it had already started to correct.
Your cervical lordosis isn’t severe as you’ve suggested. You still have a bit of cervical curve so your rehabbing of that curve shouldn’t be as difficult as it would be if your cervical spine was “ramrod straight” like we’ve seen in some of our members.
The greater horns of your hyoid look a bit long as well as they’re pretty close to your spine. This may or may not be a problem, but is worth noting.
I’m glad you’re working with a PT who’s knowledgeable about hEDS & who is helping you. If you can’t find someone more local to you with similar knowledge, continuing to work w/ your current therapist post op, even though it’s via Zoom, would possibly be better than doing nothing at all.
It appears you have a partial arcuate foramen aka ponticulus posticus on the right side of C1. The image of the left side of C1 is distorted enough I can’t tell if that situation also occurs on the left. Arcuate foramen doesn’t necessarily contribute to symptoms but it can so it’s worth noting.
Hi!
I’m sorry that you have so many conditions going on and you’re having to navigate your way through all these! Really good (and interesting) for you that changing your breathing has helped with TOS, that’s useful to know as we have a few members with both conditions… @Bailey posted this info on another post, I don’t know if there would be anyone in your area:
EDS physio by Bailey in Virginia:
Prism Spine and Joint is a good place to go for help. https://prismspineandjoint.com/ They also know other PTs in the area that can help if you don’t live close enough. @Snapple2020 has posted lots of info and links about EDS, POTS, and other venous compression syndromes, I don’t know how much you know about all those, I can post some links if you’d like but you probably know plenty already…
I hope that Dr Costantino will help you
Thank you everyone for your help and apologies for the delayed response. Your input and advice have been incredibly helpful as I try to plan out the next year of care. Currently I’m waiting for a new CT venogram requested by Dr. Costantino, so everything is on a bit of a hold. I did meet him and I really liked him, but he said the imaging that I had was insufficient.
I’m sorry that you’re waiting for more imaging, but good to get everything checked, I’m glad that you felt comfortable with him… I hope you get the venogram done soon…
Thank you so much. By any chance have you heard how long it usually takes for surgery to be scheduled with Dr. Costantino? Just wondering if I’m looking at another few weeks or months.
@hEDSNikki - Once you get a surgery date, be sure to ask to be put on a cancellation list as doing so has expedited surgery for a number of our members over the years. I hope you get an appointment sooner than you expect.
