Some of you will know from following me on social media (Twitter and Facebook) that I went to an Ehlers Danlos Syndrome conference in London at the weekend. It was organised by the Ehlers Danlos Syndrome UK charity and was about craniocervical instability. Some top Dr’s from the United States came over to talk to us and included in those Dr’s was a top neurosurgeon who specialises in craniocervical instability in EDS patients.
It was an interesting talk, but – I knew everything they had to say because I’d googled it all to death anyway and I’d watched Dr Henderson (neurosurgeon) speak on the subject on YouTube video’s at other conferences that were recorded.
What I and many other people there wanted, was some one on one time with these people – not a medical appointment, but at least the chance to be heard or to ask a question. My question was about whether my MRI images had even made it over to the states yet. They were supposed to have been sent in November last year.
I managed to grab Dr H for a brief 1 minute between talks and ask him and I don’t think it has got to him, so while I’ve been patiently waiting, thin air has been wafting about. And while I’ve been patiently waiting, I feel I’ve been deteriorating.
So, my plan is this. I’m going to have my summer holiday then focus my efforts on finding a US Neurosurgeon to look at me and assess me and see what is happening. Before I go away I’m going to take my collar off for an entire weekend and I’m going to record all my symptoms as they will flare up massively without my collar to help support my head. I know I will be really ill. I’ll be in a lot of pain, probably vomiting, passing out and I’m wondering if any other neurological symptoms will show themselves as I allow my head to move around at its own will on my neck.
I’m also going to keep a diary now. From now through to feeling well… In the form of a written diary, in a notebook, on here and also a video diary which I will put up on my YouTube page under a specific link. It won’t always be pleasant, but it may be helpful to others who will be going through this. I’ve a long hard journey/battle ahead of me, but I have little quality of life, so I need to fight and resolve this part of my EDS trouble if I can.
I hope you won’t mind the occasional diary entries here.
Oh bless Rebecca. I’ll be reading, listening and following your journey with you. Dx
Thank you Diana.
He still hasn’t seen your MRI? Really?
Hope you don’t make yourself too sick.
Really. Lost in translation springs to mind. I’m not looking forward to that weekend, but it has to happen I think.
Please take care of yourself, Rebecca. And I wish you well finding the answers you deserve. I really wish that doctor had gotten your MRI results! I don’t blame you one bit for wanting to pursue this and find out what’s going on, but I hope it won’t take too much of a physical toll on you.
Thanks Margot. I think the battle is on between the finding out taking its toll and the disorder itself. One I have some control over though x
I wish I knew such a doctor. I’ll keep my eyes open over here in the US.
Thanks Jacqui. There aren’t many of them.
Oh dear, I’m so sorry you’ve been waiting for nothing! You obviously need to do what you need to do, regarding removing your collar, but take care. Maybe a couple of days would be enough to record the symptoms accurately?
Just to say so sorry for what you’re having to go through and to wish you well.
My thoughts are with you brave Rebecca. Good luck and hope the doctors will deal with you in a good way and that MRI and any other results don’t go astray any more. So frustrating and when you’re dealing with pain like that, you just don’t need it. Stay as well as you can. x
Hi Rebecca I am sure I also have EDS and CCI but am even more behind on my journey than you. I need a collar please can you advise where I can get one am in desperate situation. I live in Scotland.
Hi Lesley. After being advised to get a collar by my consultant I ordered a Aspen Vista collar from Amazon. You can get them direct from a medical company, but you need a referral from a dr or physio. It’s not an easy journey. I’m sorry you’re travelling it. I am seeing a consultant in the States next month now. So fingers crossed I get answers. Hoping you get some support here.
Hi I feel I have the same but doc’s here not listening I am in west Sussex, live alone and really struggling. I am on a basic state pension and don’t have funds to travel to the USA or for treatment but i wish you all the best.
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