@Rather_b_hiking - I’m sorry you have a rabbit hole at all let alone one that continues to deepen! My head would be spinning, too! How fantastic that you’ve found a doctor near you who is able to help you in such a complete way. That is a blessing & a gift! As far as what to tackle first - have that discussion w/ the EDS specialist & w/ Dr. Hepworth to see what they think is the proper order for treatment. When there are several problems, tackling them in the right order can help w/ a quicker recovery overall.
I’ll pray for you to get answers that make sense to you & for you to have wisdom to know the best next steps in your treatment.
@Rather_b_hiking I know exactly the rabbit hole and spinning that you’re going through. I’m so sorry you’re experiencing it all too. I will say that it’s wonderful that you’ve found a PCP who specializes in EDS and was able to spend so much time with you. It took me years to find that. A couple of my doctors also suspected chiari because of the same symptoms you’re describing but it didn’t show up on my MRI’s and was ruled out. I wouldn’t go too far down that rabbit hole until you confirm it one way or the other. Based on what I’ve heard about Dr. Hep, it sounds like he’s the best option for you, is knowledgeable about EDS and CSF leaks, and I would venture a guess that he’s also at least somewhat familiar with chiari.
Keep doing your research, read the books a couple of us suggested, work with your new PCP, join an EDS support group (there are many on Facebook), also check out https://www.ehlers-danlos.com/. I would also look into some limbic retraining programs like the Dynamic Neural Retraining System, The Gupta Program and/or Primal Trust (I have experience with all three if you want more info about them). I’ve found that limbic retraining has really helped calm down my symptoms and the fight or flight response our body gets stuck in when we’re dealing with chronic illness (especially when dysautonomia is involved). I recently got back into it and I’m already feeling like I’m managing things a lot better again after I got off track with it. I’m more than happy to support you however I can since it sounds like we’re going through so much of the same stuff, so don’t hesitate to reach out!
If it’s ok to ask, is your appointment with Dr. Hep in May an office visit to discuss your surgical options? Is it in person or virtual? I’m still trying to figure out how often I’d have to go there if I end up seeing him too. I do know you have to see Allison Love in person and obviously go there for the surgeries. I just wasn’t sure if they only do in person visits or if some can be virtual. I’m also wondering how long it took for them to get back to you initially after your referral was sent? I had my first referral sent to his office three weeks ago and another one with my imaging last week. I tried calling yesterday to make sure they got it but they didn’t answer or call me back yet. Did you have this experience? I’m just wondering how much I should keep calling if I don’t hear anything. Thanks in advance for any extra insight you can offer! I’ll be thinking about you and hope to support you however I can.
So sorry that this is all getting very complicated for you…but at least you have a knowledgeable doctor who’s taking all this seriously! Sending you a hug & will pray for the right path to become obvious too
@Melodious21 - I can answer the questions about appts w/ Dr. Hepworth. The initial office visit must be in person. That’s when you meet w/ Allison Love. After that, you’ll be able to meet w/ Dr. Hep via Zoom for any appts prior to your surgery & after your surgery though he will want to do an in-person follow-up about a week post op, thus, if you decide he’s the one to do your surgery, you’ll want to plan for a week in Denver when you go.
melodious - I gave it a bout 3 weeks after my referral was sent over, then i called their office. i left a message a couple of times then someone called me back to set up the initial consult with Allison. And the rest is pretty much everything Isaiah said.
i would definitely call them - you may have to leave a couple of messages. but i would keep at it.
The appt in may with Hep will be virtual but the consult with Allison was in person. I’m assuming we’ll discuss surgery options at that point, Im a bit nervous about it if we are being honest. even though i had a great experience with Allison I’ve got so much trauma that just the thought of an initial meeting with a doctor makes me have an anxiety attack
@Rather_b_hiking thank you for the additional info and the advice! I can so relate to the nervousness and trauma from past doctor visits. It does sound like people generally have better experiences with Dr. Hep so I would like to believe it will be a very different experience than you’ve had before. I will certainly be thinking of you! Hopefully the appointment with Allison Love and reading about other people’s experiences with Dr. Hep on here will alleviate some of those fears. But medical trauma can be hard to get over until you have more consistent compassionate doctors. I will say that has happened more and more for me over the years as I’ve assembled a really good team of doctors and not wasted my time with dismissive ones.
I’m having the same anxiety this week about an appointment I have scheduled in my area. (Sorry to those who may have already read about this in my own recent post) I had a referral sent to one of the only doctors in Oregon on the ES doctors list. They called me late last week to schedule me for an endoscopy for this Thursday but didn’t give me any other information. When I found out that this isn’t used to diagnose ES in any way but to rule out other issues, I grew anxious since they already have my imaging which clearly shows I have vascular ES. Plus I’ve already had three endoscopies in the past with an ENT who completely missed the ES and insisted I do sinus surgery, which ended up flaring me up for month afterwards. I didn’t know about ES at the time but was describing all of the symptoms. The endoscopies were really uncomfortable and traumatic for me, so I’d rather not repeat them. They also scheduled me with a different doctor who isn’t on the ES doctor list and didn’t explain why or what the next steps would be. I called their office back the next day (Friday) to ask why they’re doing an endoscopy since I know it isn’t a test that confirms ES and I’ve already had three done in the past with a different ENT. I offered to have those records sent over. I also asked why I was scheduled with Dr. Paul Flint since I was referred to Dr. Joshua Schindler because of his ES experience. They told me that Dr. Flint trained Dr. Schindler, but I don’t yet know if that means he’s familiar with ES since I’ve never heard of him. They said they’ll probably want to do their own endoscopy since doctors like to preform their own tests but they couldn’t tell me why it needs to be done or what the next steps will be in getting an official ES diagnosis and talking about surgical options. They did say they would have a medical assistant or nurse call me back to go over all of this, so we’ll see what they have to say, assuming they even call me before my appointment this Thursday! I’m at least going to bring a friend with me so I don’t have to go through it alone. Hopefully I can just get into see Allison Love and Dr. Hep soon. It sounds like they’ll be worth the wait and the travel expenses/hassle.