My Head’s About to Fall Off…Literally. Hello Surgery!

Hey friends and family…

Pardon the short post, but my arm is not better and I can’t type much; instead, I chose to do a video to explain my latest medical drama to you all. It was rather complicated to explain this over the phone to Mama, so I chose to make a video complete with images and explanations in hopes this will be a better tool to help you understand what I am going through. I will be having major neck surgery for cervical instability, a C1-C2 fusion. I also have 2 herniated discs, C5/6 and C6/7, and will be waiting until after this first surgery to decide how to proceed with those. I know many of you will have questions – hopefully this will answer most of them. I hope you all are well and hanging in there. I know the POTSies are loving the break from the summer heat – I sure am!

Lots of love and hugs!


  1. Darla Allen

    So excited you got to see The Dude!My October 8 appointment I had since April for Cincinnati Children's was rescheduled for February 18, you know, since I'm not doing anything anyway. I still did not have coverage to see Cincy anyway, and ND of course denies everything out of state, anyway. Medical Geneticist available here, they say. Not so much, I say. I'm so excited for you to get your head screwed on straight!Relax, Release Release, RelaxRenew, Heal Heal, RenewRestore to Divine PerfectionI love you back unconditionally!!!Go Dani Go!xoxoD3:33


  2. Bridget

    Danielle:Great video. I have EDS III like you. I had a c5-c6 fusion nine years ago after a chiropractor ruptured the disc. The neurosurgeon said he'd never before seen a disc broken into three large pieces before, a surprise he discovered during my surgery. Meantime, I too have problems when I turn over in bed; either c2 or c3 goes out. That's why I have a rolled up towel near my pillow to remind my sleeping body not to lay on my left side, which doesn't always do the trick.All I can say is please be careful until your surgery in February. No more extreme neck turning! I'm glad you've found the doctor who can help you with your neck since we both know it's our weakest spot. By the way, whomever gave you those tickets to the EDS conference was nothing short of a cervical angel!


  3. Jen

    I actually had my c1-2 fused the day after you posted this. What amazed me was that you have such a terrible instability and the doc couldn't get you in sooner. I see Henderson and as soon as he saw my films he said we're doing surgery and my instability doesn't seem to be anwhere near as bad as yours but I only had a 5 week wait for surgery. Just something for you to consider but I understand going to a new doctor takes time too. I just feel so bad you have to wait till Feburary. Also I had c5/6 fused 3 times because it wouldn't heal till I got Henderson to do it the 3rd time. All were anterior approaches. So I was expecting something similar going into my c1/2 sugery and discovered getting anterior operations vs. posterior operations feels comparable to going to get a flu shot, that is how easy they were for me in comparison. I don't want to scare you, I did get through all this but if you do have to go in for later operations lower down in your neck they will be be a breeze compared to the one you have to start out with.Also big big tip. The higher the fusion the harder it is to tolerate pills. I was unable to move until given pills then my entire body was jerking up to choke out the pills which is unimaginable pain. They gave me so many oral pills and I only got maybe 50% down. I know its gross but if you make them crush all your oral pills and put them in something it will save you so much pain when your're in the hospital. Oblong pills I found were significantly harder as well so even after I got home I crushed those or drank them with hot tea so they would dissolve instantly with the hot liquid if they did get stuck. Feel free to email me,, if you have any questions since I literally just had this done and good luck to you.


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