London Update Pt 2

I always face each trip with so much anxiety. The whole week before I’m not myself as its constantly on my mind. Will I be well enough to travel on the day? Will I be ok after all those injections? What if I take a bad turn over there?

All viable questions as they are all situations I’ve faced before. Being sent to urgent care by the consultant on one trip, another when my mother wheeled me down the street in London to St Marys A&E in the middle of the night as I was progressively getting worse.

Im sure we looked a sight.

Never to be quiet I ended up blacking out and going head first out of the wheelchair onto the floor of the waiting area in the hospital. We learnt what the seatbelt in the chair was for that time 😆

Once I’m landed I’m landed and I start to relax , this is my  11th trip now I’m so familiar with all the sights and streets. People salute me in the regular shops and areas I go now.

My first appointment was in Queens Sq Neurology with my neurologist. It was a late appointment starting at 7.30pm. It was after 9.30 by the time I was finished

Queens Square Neurology Hospital


Here I have all my injections . there’s certain nerve blocks I can have done in Ireland and others I can’t. These are what I have done every three months in Queens Square. A total of 40 injections and then I’ll have another 12-18 at home next month.

Yes I am a pin cushion. There was a time I couldn’t stand a blood test 😁I’ve been doing this routine for well over a year now every three months.

I get about 6-8 weeks relief, which is something when you have pain ,even 24 hours relief you will take.

They went better than last time.I was bleeding a lot and very swollen but not so much this time but was in a lot of pain that night and couldn’t sleep.


Swelling from injections. Better than last time though.

The next day I was meeting with my neurovascular consultant. He is an amazing man and doctor. If you know my story you’ll know my heart rate has been going out of control again despite the medications I am on. Just taking a few steps I’m left breathless with chest pains and I’m so exhausted from having tachycardia all the time.

This is a resting heart rate while on 3 medications for my heart. It was competing in the Olympics without me 😂

Its a pity because I started extra meds in January for my heart and they had been working. But the effect wore off.

An urgent referal has gone into cardiologist here as I need constant monitoring with the new med  mixed with the ones I’m already on.

But my heart could have raved itself all the way to Ibiza by the time an urgent appointment comes through here 😂🎉

I have to go through their holter monitor tests in London again as they are a bit different than here . you are on a 24hr diary with specifics laid out. They should really do that system here it gives much more information.

He has also referred me to their geneticist as he wants to test for all the genes to do with eds and to definitely check for vascular eds.

His main reason for doing this now is because all along he just treated me with that caution of someone with veds as I have a lot of vascular fragility.

It will be piece of mind if anything and he was thinking we definitely need to know in regards of going for any surgery if needed.

The Heterozygous nature of EDS


When he over looked my upright MRI which diagnosed chiari and atlantoaxial instability there’s an obvious kink at the odontoid peg kinking and compressing onto my brain stem as you can see below if you can read MRIs.

The normal angle should be above 150° and the spine and neck should be straight. It goes even lower to 131° on extension.

He said they will never get my heart under control with that kink where it is as this controls heart rate.

He is sending it a surgeon he knows in the UK which is pointless as the only surgeons who can deal with this are in the US.

This is an example of a retroflexed odontoid with the odontoid peg highlighted. The is should be straight. Just to show you what we will be looking at.

I have been in touch with a US surgeon and im arranging a consult.

Because of the kink in my brain stem it could be pulling on my spinal cord lower down so I’ve to have another upright MRI of my thoracic and lumbar spine.The last one was so so tough I was sick for so long after, I am dreading another one again

Yet again another thing not available in Ireland thsts costing thousands.

What a normal odontoid peg without basilar invagination and aai looks like on mri. Completely straight no kinks. I wish this was mine 😣

That is a normal mri above , just to illustrate the difference between my abnormalities and a normal scan.

It was all a bit overwhelming but I already knew but hearing brain stem compression , basilar invagination these type of things from the doctor makes it feel more urgent.

My scan the Kink at my odontoid peg compressing brain stem.

So I’ve mris, genetic testing, heart tests, neurosurgeon consults with american surgeon and maybe welsh all coming up and more injections its non stop.

I’ve just been in my hole since I came back. Sometimes I find it hard to process the information as im not emotionally attached to my condition but I get worried about it.

I find it hard to talk to anyone about what this is like without getting a “here here you’ll be fine” reaction that can be the worst to hear some days so i just turn off and stay alone for awhile.

 I know I never share all these details usually but I never wanted the Facebook page to turn into a blog detailing every medical detail.

I always just wanted to express my gratitude and raise awareness there.

This way people who want to read my updates can here and I can post links.

I’ll be posting other stuff too and hopefully some feel good and not all filled with chronical illness stuff.

I think I still have a personality left in there somewhere 😉

But for those of you who support my journey I will keep you all posted on the progress









6 thoughts on “London Update Pt 2

  1. A lot to take in and only you know how best you cope with it, if that means hiding in your nest for a while until you can deal, then bother with the rest of them and do that!! I know I can never understand all that you go through as we have different issues but I am always here to just listen if you ever need to rant and blow off steam! 💕 Loves and a lil bit better health! ❤️❤️ Lette (Fainting Goat)


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