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.
Diana Jackson says
June 15, 2015 at 2:01 pmOh bless Rebecca. I’ll be reading, listening and following your journey with you. Dx
Rebecca Bradley says
June 15, 2015 at 7:02 pmThank you Diana.
Alex J. Cavanaugh (@AlexJCavanaugh) says
June 15, 2015 at 2:03 pmHe still hasn’t seen your MRI? Really?
Hope you don’t make yourself too sick.
Rebecca Bradley says
June 15, 2015 at 7:01 pmReally. Lost in translation springs to mind. I’m not looking forward to that weekend, but it has to happen I think.
Margot Kinberg says
June 15, 2015 at 2:12 pmPlease 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.
Rebecca Bradley says
June 15, 2015 at 7:01 pmThanks 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
Jacqui Murray says
June 15, 2015 at 5:56 pmI wish I knew such a doctor. I’ll keep my eyes open over here in the US.
Rebecca Bradley says
June 15, 2015 at 6:59 pmThanks Jacqui. There aren’t many of them.
Annalisa Crawford says
June 16, 2015 at 9:44 amOh 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?
Clare Chase says
June 16, 2015 at 4:00 pmJust to say so sorry for what you’re having to go through and to wish you well.
chrisb-jwordsandimages says
June 16, 2015 at 6:08 pmMy 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
Lesley Mcgilvary says
March 26, 2016 at 12:31 pmHi 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.
Rebecca Bradley says
March 29, 2016 at 8:13 amHi 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.
linda davies says
November 10, 2018 at 9:19 amHi 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.
Mary Jane Cronin says
April 29, 2019 at 2:18 pmI have a dear friend who is fighting the same battle here in the states. She’s considering a
spinal fusion as her condition is deteriorating! She also has craniocervical instability, Atlantoaxial Instability and subaxial instability. Have you ever considered using a pure
100% CBD oil without THC, PESTICIDES, FILLERS OR GMOs? This has a direct impact on the
body systemically which may assist with the connective tissue and ligaments that are impaired with this syndrome. Dr. Robert Lawrence is leading the WORLD in setting the GOLD STANDARD with this herb and it’s reaction in the body to establish HOMEOSTATIS . Just
a thought! SIncerely, Jane Cronin retired RN (NYC) . visit insidehealth.bocannaco.com for more info on this amazing natural ancient herb !