Last Thursday I was in London to see Professor Grahame. A top specialist in the field of Ehlers Danlos Syndrome. I was there because I was at the end of my tether, running out of hope and he was my last chance at getting to the bottom of what is disabling me so much.
You may remember a post back in September where I explained that I have a problem with my neck/head joint and with that I get a lot of extreme neck pain, crippling headaches, debilitating fatigue and a myriad of other issues. It now controls my life. I can’t do a day without pacing myself. I can’t go for a weekend away without being a medical mess afterwards. Professor Grahame really was where I was pinning everything, my whole life was stacked up in his hands. I was so invested in this appointment the day and night before I was a gibbering wreck and couldn’t sleep. Those of you on social media will have seen me up and active, way past my usual activity time.
The appointment came and I rambled (I also cried.) This was so incredibly important. But he listened, he asked questions and he examined me thoroughly. Professor Grahame actually lifted my head up higher with his hands and asked how it felt and it felt ok. Then he let go and my head just dropped like a brick back down into my neck. He asked how that felt. There was pain in my neck that had run up the back of my head as it had dropped.
At the end of it there is now an answer. An answer and action being taken. It would appear that the craniocervical junction is unstable which is what is giving me a lot of my symptoms. My head is too heavy for my neck. It’s known as bobble head. Or to put it in image form, my neck is a cocktail stick and my head a pumpkin and the stick is attempting to hold it.
The Professor is going to give my MRI to one of the top neurosurgeon’s in his field, in America, and ask him to look at it and do the official measurements, to see if it falls within surgical limits. He’s going to write to my GP to update him as he’s responsible for my day-to-day care. He has also said I need to wear an aspen collar to hold my head. This is the aspen collar.
Flattering isn’t it?! I’m now in the midst of a scarf buying spree. Everything I wear will be accompanied by a scarf. Though looking at this again, I’m not sure they’re going to help much.
I did cry again when the Professor said all this, and he was shocked that I’d thought he wasn’t going to help me. It’s been such a battle as the NHS ortho and neurosurgeon’s don’t understand EDS and the impact it has on their respective areas that they don’t look, well, they don’t even listen, and to have it all in Professor Grahame was such a relief.
Now the impact of what this means to me is setting in a little and the joy of being heard is being replaced by a quiet contemplative understanding of just how fragile my body can be and what this current issue really means.
I am still pacing myself though and writing is something I can still do in spurts, so don’t think this is a setback in any way. It’s an answer. I just need to adjust my life…
I’m going to share this short video again.
MarinaSofia says
Finally someone who knows what they are talking about and is willing to do all the things they can to help! It must be such a relief Although, of course, ouch, the collar… But sometimes that not knowing is worse, isn’t it? Good luck with further developments, even though surgery sounds scary, but if it means you can live without such debilitating symptoms, it would be worth it.
Rebecca Bradley says
Thanks Marina. I’d do anything now to get rid of all these symptoms they’re that bad. And yes, its so good to see someone who knows everything and can help. It was an amazing relief on Friday. An emotional day.
Natacha Guyot says
I’m glad that the professor was able to listen to you and help! Good luck with the collar and what might comes next. *hugs*
Rebecca Bradley says
Thank you Natacha. It really was a good appointment.
lindahuber says
Any kind of bad stuff in your life hurts, and sometimes it’s not easy coming to terms with reality. I know that all too well too. The important thing is to find people who take you seriously, and are able to help. Sounds like you’ve got that now, wish you all the very best with whatever new treatment they work out for you. xx
Rebecca Bradley says
Thank you Linda. It does feel good to be under the care of someone who knows so mich. like you say, it will take some adjusting to, but the pain and other symptoms have already prepared me anyway. X
readingwritingandriesling says
I am sure you will feel so much better once your start wearing your new necklace and matching scarf 🙂 But seriously – I am sure it is going to make a difference to your daily life and that is so important.
Rebecca Bradley says
Thats what I’m really hoping, that it does bring some relief. Im sure I’ll get used to wearing it…
readingwritingandriesling says
It will Rebecca it can only be better
Margaret says
So glad you’ve been able to see someone who understands your condition. It’s difficult adjusting to changes in life but hopefully it will help you to live a better life. Good luck for all that comes next.
Rebecca Bradley says
Thanks Margaret. It is wonderful to see a professional who understands 🙂
Terri Nixon says
I’m SO pleased he listened, and, more importantly, heard. You’ve been through so much that I’m only just really finding out about, and I’m full of admiration for your constantly sparky spirit. I’m delighted, and relieved, you’ve now found someone to lead you onward and upward. xx
Rebecca Bradley says
Thanks Terri. Its been a long road and one I try not to show outwardly when I’m out and about. Now its going to be fully visible though! 🙂
Alex J. Cavanaugh says
That’s awesome he listened, understood, and is will to DO something about it. Does this mean surgery in the future? Yeah, I don’t think scarfs will help, but if it helps your pain and neck issues, who cares.
Rebecca Bradley says
Its possible surgery may be an option. It depends on the results from the American neurosurgeon. And no, scarves arent going to hide much are they!
Margot Kinberg says
Rebecca – I’m so glad you got answers. And I’m even more glad that you were heard. Sometimes that’s the major hurdle isn’t it? Getting someone to listen is a big part of feeling hopeful. I hope the collar is helping you feel more comfortable. Thanks for sharing this update and you know what? Scarves are great!
Rebecca Bradley says
Thanks Margot. It is such a great feeling when you are heard after being pushed from pillar to post for so long. It’s probably why I cried so much! And yes, I wasn’t a scarf wearer before, but I’m finding a new love of them 🙂
janelovering says
I’m glad they listened, and I’m glad they can do something to help you. And thank you for making me appreciate my (relatively) healthy body, it’s so easy to take movement and normal living for granted that sometimes a head’s up to what other people have to go through is a very necessary thing. Keep your chin up…oh. I suppose you can’t do much else in that collar…
I truly hope that there is an answer for you, not too far down the line. xx
Rebecca Bradley says
You’re right about keeping my chin up! 🙂 thank you for your kind words Jane. We do take things for granted and I’m now realising that as I come to terms with the life I’ve lost. I’m learning to adjust to a life that’s different. Slowly. X
Annalisa Crawford says
If the collar helps you get by pain-free, flaunt it, don’t hide it!! Seriously though, I’m glad you’ve got answers, and a medical professional who can really help you.
Rebecca Bradley says
Thanks Annalisa. I think it’s going to be difficult to hide it actually. I’m still waiting for it. But it’s quite big. I’m sure I’ll get used to it. I’m now keeping my fingers crossed for some more help.
daniel quentin steele says
I am happy that you at last finally have hope for an answer, even if you don’t yet have an answer. Unfortunately, what you’re going through is not unusual at all. We’ve all been brainwashed by television series and movies about magical medicine men who come up with answers to medical mysteries in 45 minutes, minus commercials. Honest doctors who don’t secretly believe they’re really God will tell you in confidence that medicine is an ART, not a science. A lot of it is guesswork or throwing things up against the wall until something sticks.
A friend’s wife suffered from debilitating headaches for five years that literally reduced her to a bedridden invalid. She and her husband went to a LOT of doctors. There were surgeries and sometimes a little relief, but no real help. They got all kinds of diagnoses. including the inspiring comments of a doctor from an internationally famous clinic that she was a secret drug addict and was responsible for her own problems.
FINALLY, finally, they found a spinal surgeon who diagnosed a disc problem in her neck that caused ALL the problems. A simple test five years earlier would have spared her five years of torment, but her doctors didn’t think it was necessary.
There are no easy answers. The surgery that followed was brutal and left her a real invalid for nearly two years, unable to feed or care for herself.
BUT, more than ten years later, she leads a normal life and there is very little after effect from the surgery. There was a happy ending, but she could easily be one of the legions of victims who give up hope and take the easy way out with a lethal overdose.
I hope yours is one of those stories that has a happy ending.
Kristina Stanley says
Your words made me put my day in perspective. Thank you for sharing your story. I wish you the best.
Rebecca Bradley says
Thank you Kristina. I think we all have our tough days. Everyone of us behind our social media faces. We need to remember that and always be kind to each other. Your kind words are much appreciated x
vicky blake says
I wish you many,many beautiful scarves and above all respite from the pain.
Rebecca Bradley says
Thank you Vicky. I have bought a couple now. I need more though 🙂
FictionFan says
D’you know, I think the collar is actually kinda funky! Wear it with attitude, girl! And I really hope it brings you some relief until a more permanent solution can be found. 🙂
Rebecca Bradley says
Thank you! I’ll certainly stand out won’t I. My other halfs Christmas do is partners as well and I said to him that I couldn’t wear my collar that night and his response was “Of course you can! You won’t enjoy it otherwise.” So it looks like I’m going to have to get used to it 🙂
Jacqui Murray says
What a story. To suffer like that and have doctors deny there’s a big problem. I’ve read doctors only diagnose correctly 25% of the time. When they kept messing up my daughter’s diagnosis (when she was 4yo), I too went to a leader in the field. He sorted it in no time.
I’m so happy this sounds like the right path. I look forward to hearing how it goes.
Rebecca Bradley says
Thanks Jacqui. Its such a shame we have to do this, research ourselves and find the leaders in the field. I hope your daughter is ok and gets the support she needs now and fingers crossed I’m now in the right place.
Alison Gray says
So glad that you have found the help that you need. And although the journey will still be difficult at times, hopefully you won’t be as alone in it as you have been up till now x
Rebecca Bradley says
Thank you Alison. It is difficult but I am hoping that I’m in the right place now.
pamjplumb says
What a moving post – Good luck with everything.
Rebecca Bradley says
Thank you Pam.
emaginette says
At one point I was afraid to read on. If scarves don’t work try stickers, ribbon, or anything festive. I’m just glad the pain can stop for you.
You are so brave, crying or not. I’m proud to know you.
Anna from Shout with Emaginette
Rebecca Bradley says
Thank you Anna. That is one of the loveliest things to hear. Especially right now as I’m learning to live a new way. Thank you.
diannegray says
It’s hard to find people who not only know about certain illnesses, but who are also understanding and offer to help any way they can. Best of luck, Rebecca xxxx
Rebecca Bradley says
Thank you Dianne. It has been a really long journey, but hopefully I’m in the right place now.
welcometomylibrary says
All the best. Hope things start improving from here 🙂
Rebecca Bradley says
Thank you.
Prashant C. Trikannad says
Rebecca, I’m glad you met the specialist and that he’s opening doors for you. I hope everything works out well for you,
Rebecca Bradley says
Thank you Prashant. I’m now putting all my hope on him and the US specialist.
suefortin says
I’m so glad that something positive has come out of your meeting, crying with relief is a perfectly natural reaction. I really hope this helps improve things for you. Take care of yourself. Sue
Rebecca Bradley says
Thanks Sue. It was an emotional day and I’m now hoping I get more answers and then help.
chrisb-jwordsandimages says
It is better to know what’s going on, even though it’s a shock sometimes, but so glad you had somebody to listen and advise. Hope it all goes well for you.
Rebecca Bradley says
Thank you Chris.
marjma2014 says
All the best with your treatment Rebecca. Hope it goes well for you.