WOW @BuckeyePrincess! I’m so excited for the recovery progress your daughter has experienced so far!! That’s phenomenal! So great that you were all able to go on a family outing & she was able to enjoy it! Have a few down days after a more active day in early recovery makes a lot of sense. I remember going through that myself after my surgeries & that was before my IJV compression was diagnosed. She’s got a tougher recovery than I had initially. God is good & has heard & is answering our prayers for your daughter. 
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Hi again! I do not know if I should even post an update as it may discourage all of you and others who are hoping for better days ahead… 
My daughter had her 3 month post op with Hepworth last week… she has been on a decline since I last posted with symptoms of ongoing high heart rate and lower O2 levels since changing beta blocker, decline in neurological symptoms, significant tremors at night preventing her from restful sleep, shaky hands in which fine motor skills are nonexistent, ears are closed more than open esp. when she is very fatigued which is almost all the time. Hepworth said she is leaking from what he interprets from all those symptoms. We couldn’t have been more shocked as she had two blood patches for leaks in the first 6 months of 2025 but not successful long term. Since then she has had leak symptoms but could not find a doctor to diagnose and treat. Then we found Dr. Hepworth and researched and found that IJV compression can bring on leaks. But now since surgery her symptoms have changed and that was not forefront in our minds anymore. He ordered a MRI cisternogram and unfortunately need to travel back to CO for Health Images to do as no local facility has the right machine to do that and then it will be done right! He will fix the leak and if not refer us to a known specialist who does that. Do any of you know who that might be?
The US we had done prior to the 3 month visit showed open jugulars but compressed mildly at the omo-hyoid muscle. He recommended light finger massage and using a cream to help open that area. We were relieved for that report!! 
Any one have thoughts to share about how effective that is or tips on what worked for you?
How are you doing @Snapple2020 ? Thinking your way often and will be curious how you make out at your 3 month post op!
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I’m so sorry that she has this setback, I had hoped she was on the mend, as obviously you were, it’s so horrible for all of you… It’s good though that Dr Hepworth is still helping and trying to work out the issues for her, I hope the new testing shows what is happening and she’s able to get treatment… Hugs and prayers for your daughter and you 
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@BuckeyePrincess - I’m very sorry you & your daughter will need to travel to CO again. I was also hoping her healing journey was continuing to move in a positive direction. I haven’t heard of massaging the omohyoid to get it to stop causing IJV compression though here are links to a couple of research articles where IJV compression via omohyoid is discussed:
Dr. Hepworth refers his patients with spinal CSF leaks to Dr. Callen at U Colorado Anshutz. If the leak is cerebral, I’m not sure to whom he refers patients.
I hope & will pray that the MRI cisternogram is able to show precisely what is going on so it can be repaired. Also, if the omohyoid caused IJV compression persists, I hope Dr. Hepworth will suggest another treatment option.
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Thank you @Isaiah_40_31 and @Jules for you kindness prayers and thoughts! Dr. Hepworth is able to repair cranial leaks from what his scribe told me and if not refers out to a trusted specialist if needed.
And I wonder if postural problems could be causing the omo-hyoid IJV compression and also possible there could be muscle gaurding as well. Dr. Hepworth said it this way that the muscle and vein have a too close relationship at that point so that is the reason for the light finger massage and cream to help undo that.
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Dr. Hepworth’s suggestion for treating the omohyoid/IJV relationship sounds reasonable. I hope it helps significantly. Posture could definitely be a contributing factor to the omohyoids close proximity to your daughter’s IJV. Perhaps once the cause of her current symptoms is relieved, she can work w/ a PT on her overall posture.
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Hello BUCKEYE!
I am doing ok in general, I just keep pushing thru. I have some left rotator cuff issues flair after surgery re: assessory nerve. Its better. My headaches for the most part have gone away. I think my hearing is better on my right side however the pulsate tinnitus is the same. 
I go for my post-op on the 30th and also Dr. H will see my daughter who in some ways far worse than me. She has blood pooling and has for quite awhile w the POTS and she and I have been getting a full vascular workup. We saw MIPS in Denver (telehealth) and they ordered a specialized scan of ab/pelvis and full leg US. She most likely (and I) have May-Thurner and possibly Nutcrackers. While in Denver, we will get metal allergy testing and get her an upright MRI. She does have some rotational issues in neck and possible CSF leak. She has significant compression down around the lower neck too on one side and about 90% compression at C1 on other w hypoplastic vein. The carotid likely is involved too.
I am attaching an article by Dr. Cha at University of Minnesota. I know she does the TOS/scalene shaving, etc. This may be whom Dr. H mentioned?
I spoke to another hEDS person w 4 kids w various issues like us (heds moms). I think Dr. H has operated on 3 and 2 other family members. She has issues with CSF leaks too. She said you should be able to get that Cisternogram where you are. Its just a scan with special sequencing. You just need to call the imaging place and 1. make sure it is a 3T MRI 2. Ask if they can add the sequencing for a cisternogram. She did not recommend doing the creme. She said its just a bandaid and will delay the inevitable. I hope that is helpful! ON a side note, Ive heard it takes awhile to get into Dr. Cha but have heard excellent reports of her. I would like to see her myself but I have found a TOS center in Sacramento with a good doctor.
Dr Haa Neck.pdf (2.0 MB)
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Thank you @Snapple2020 for your update! Wow, sounds like you have big days planned for while you are in Denver! I am so glad with you that you can get your daughter in at the same time and I hope you can get some good answers as well. You have been doing a lot of research from what I read between the lines. 
I would love to know who you are seeing that would order US of ab/pelvis and full leg! I did not know of a place in the States that would do that, only knew of the doctor in Leipzig Germany who does US of ab/pelvis and sometimes the area behind the knees plus jugulars. I am so glad your headaches have mostly gone away. Our daughter’s have decreased significantly too but now dealing with those intense headaches associated with leaks.
As for the cisternogram, Dr. H says it MUST be with a 1.5TGE machine and a CSF flow protocol, well… we have been down this path before with local imaging facilities and have learned to just follow the doctor’s orders and go where the facility is used to working with his protocol to get the best for the money. Also she is needing another scan and the cost is half the price in Denver than at home anyway so we can get more there too for way less… I know travel costs but in the end we want to be sure the right imaging is done. Dr. Hepworth wants to follow up in 6 weeks so it will keep us busy getting imaging, and labs done in that time frame. Since Gullian-Barre seems to have been what she dealt with 3 years ago when she was paralyzed and the local doctors never treated and refused to listen to an out of state doctor’s orders, he is ordering an antibody lab as that may be also what is contributing to her continual weakness in legs and body. We sure hope for some good answers in the next weeks!!! And if not Dr. Hepworth does not give up easily and we are so very grateful to have him on our team!
Thanks for attaching the article about Dr. Cha because yes, Dr. H did mention I could research that doctor.
When you have time after your appointments I would love to hear a report on what all you learned! You will be in my thoughts and prayers! 
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I hope that you get answers too @BuckeyePrincess ; the Gullian Barre sounds like a possibility for her nerve issues…
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@BuckeyePrincess - Your poor daughter has so much going on still. I’ll be praying for clear diagnoses & solutions for her present health challenges & wisdom, patience, & peace for you.
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Another question… it has been a week since we had the appointment with Dr. Hepworth and the care summary is not available yet. Next Tuesday we see the PCP and I really wanted the care summary to take for him to order the labs and just to let him know what is happening. Do I send a portal message or just let it go? Also our PCP needs to order prescriptions as well with Dr. Hepworth’s advice and we were not able to yet set up a 6 week follow up as Kristen has not contacted me. I emailed her on Monday this week and have not heard from her yet. Does the care summary need to be signed off first before she can do that? I am not allowed to send her more than one email so should we just keep waiting?? I thought once surgery was passed then we work with the office for all follow ups but no the secretary told Anthony we need to work thru Kristen… I was disappointed to say the least! Any advice would be appreciated! Thanks!
@Snapple2020 after I read your post I decided to keep checking with local facilities and after searching and calling and covered all possibilities I found out for sure that no, this MRI cannot be done locally. Either the price was 4-5x more or the MRI was not the 1.5 TGE. One radiologist with Cleveland clinic told me you better do what your doctor says. I was thankful for everyones honesty! So thanks for nudging me to keep digging.
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@BuckeyePrincess - Communication with Dr. Hepworth’s office has long been frustratingly slow. I would email info@denversinuscare.com & explain the situation about your need for the care summary by next Tues & ask if it could be expedited. As far as appts go, you may well have to wait for Kristen to call you back. I don’t think the care summary needs to be signed before she can schedule you, but I’m not 100% certain about that.
Unless his policy has changed, I think Dr. Hepworth can schedule your next appt. at the end of a telehealth call. At least he used to be able to do that. It’s worth asking him at any rate. I never leave his office after an in person appt w/o making a follow-up appt, even if I don’t think I’ll need it because I refuse to deal w/ waiting for call backs/follow-up emails.
Unfortunately, you may not be able to get a follow-up appt in the time frame Dr. Hepworth suggested because I think he doesn’t look at his schedule to see how full it is when he suggests when the next appt should be. @Snapple2020 has had experience in this arena.
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I finally just called the office and I had such a kind willing secretary… she helped me out and sent me the needed info for the PCP, emailed Kristen for our follow-up, and contacted Health Images for the imaging we need. Wow, that phone call was worth my time! So now we can move forward a bit more… Thanks for your warning @Isaiah_40_31 about scheduling time frame. My daughter is increasingly worsening in her leaking symptoms and just not sure how much time can elapse until we have the telehealth but God knows all about it and we just need to trust His timing.
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Happy for you things seem to be coming together!
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I’m glad that you were able to get through on the phone to a helpful person, thinking of you & your daughter and hope she gets some answers soon
I’m sad for your daughter’s situation & for you as her mom since you’re suffering, too, @BuckeyePrincess. I’ll continue to pray for God to provide wisdom, knowledge & ASAP forward progress toward your daughter’s recovery.
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Hi Buckeye,
Sorry so long and responding. Im not sure how much help I can be anyways. Ive had my frustrating lengthy times like you.When it comes to getting call backs from Kristen, thats another thing. I sometimes will email her I will like to schedule and to please call, then wait. She seems to work on things earlier in the week. I usually will try and get a live person on the phone like you did. Ive had issues getting the consult or OV reports too and have to prod them. Im used to getting them posted within 24 hours not weeks. I just was on the phone myself with Health Images scheduling my post-op US. Im generally doing well myself however still have annoying pulsing tinnitus on my right side. Same left shoulder issues that come and go. I suspect rotator cuff tear issues but my sports doc says rotator cuff impingement. I wonder by releasing the left side of adhesions and decompressing the IJV, that I have TOS kicking up now longer in the vascular system. Who knows…
Anyways, My daughter and I go into Denver next week for post-op and an in-person with Dr. H for my daughter. I look forward to him going over her scans with him as NP suggested possible CFS leaks. We did get an eval on her neck stability and she does has some rotational issues at C2-3 and like and signs of TOS compression at the supraclavicular and scapular issues.Per MIPS, we are getting metal allergy testing as well and my daughter an upright MRI. My daughter likely has May-Thurner and possibly Nutcrackers…we still are in process of eval. She had full US of her legs that indicate likely vascular compression above.
I am so sorry to hear about the worsening of your daughter. It is concerning. Please keep me/us updated as I am following. I try to get most of my imaging in Denver and what I can locally. Ive had issues with out of state orders being followed by local imaging facilities and ended up having to fly out and have them done per docs orders. Thats why I fly in a few days earlier to get them before appt.
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@Snapple2020 I hope your post-op is helpful next week, and please let us know how your daughter gets on… I’m sorry about your ongoing shoulder issues, it’s never ending for you
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haha…story of my life…i will let you know how it goes. Sorry Ive been not on much. Ive been meaning to get on more. It seems my legs have issues sitting very long so I can sit for long periods.
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