Monday 19 February 2018

Health update - Upright MRI 2018

Hi everyone, thanks for stopping by! Here goes with all the boring health updates. Starting firstly with the obvious, the important London stuff including upright MRI.

At the start of the month myself and Bicky set off for London for the upright MRI and to meet with an experienced physiotherapist there. We booked three nights in the hotel, knowing that travel is very difficult, tiring and painful. And from what I had heard the upright MRI is no picnic (plenty of rest needed afterwards -not travel). Flexing the neck triggers the symptoms we are there to investigate in the first place.

I spasmed, jerked and gagged during the long and slow scans. But all in all I did pretty well and was quite proud of myself. It wasn’t pleasant, to say the least, but the staff were lovely and understanding. Afterwards I vomited, the gag reflex was just too much, but that was after the fact so I’m not counting that, haha.


The next morning I met with the physio, and what an experience! I don’t think I’ve ever had such a comprehensive and educational appointment. I learned so many interesting things about how my body works. The lovely physio didn’t have my MRI results, which the consultant had hoped she would by then. But by simply feeling my spine and areas of my body, she was able to tell me a lot about what was happening under my skin.


Feeling along my spine as I moved my head to the sides, backwards and forwards, she was able to tell me that only part of my cervical spine was assisting in this movement -unlike with the average person, who moves parts of both their C spine and their thoracic spine. My T spine is locked and will not move on its own, causing pain to the overworked C spine. She pointed out that our bodies are quite amazing, in that if they can’t do something in the normal way, they will endeavor to find a way – even if that way is injuring us -“Your body will find a way to make that movement if it can”. So interesting. 
Image by Freepik
This explains one of my longest running symptoms and major causes of pain. As a child I called it “spine freeze” but this is NOT a medical term, merely a childish way of trying to explain to doctors what was happening to my body. On lying down my spine would seize entirely, although more so focused at neck and mid back areas. I could barely move, and any tiny movement felt like my spine was about to snap. It was like one, long unflexing pole. It was both terrifying and agonising in equal amounts when I was a child. I still experience this phenomenon but only a few times a month.  Sometimes I feel what I call twitches when standing/ sitting, but I can unlock these. Unlike when I’m lying down and I just have to wait it out. While still scary, the lesser frequency has helped, as does age -I suppose I got somewhat used to it.

It’s a very strange feeling to end such a lifetime mystery, at the age of nearly 33. I really thought I would never know what the issue was. X-rays didn’t show an obvious problem when I was a kid, and doctors were stumped.

When I think of growing up I just remember my dad screaming (through my screams of pain) that I must have an issue with my connective tissue, as it’s something that doesn’t show on x-rays. He knew before any of us.

This spine lock can be manipulated, but with everything else she didn’t have time (see below for knees and hips). She thinks my physio here should be able to do it, but I really doubt so. If she could have done, she would have. She is writing a whole report advising her of this step and all the other information.


Nope she didn’t fix my hip dysplasia. Haha, imagine -I would be packing her in my bag and bringing her back to Ireland. But she did note that not only was the hip in the wrong place (as it’s meant to be on me), but it was also tilted the wrong way. This seems like a common enough occurrence with EDS patients from what I’ve heard. Using only her magical hands, she was able to slowly move this back into place. I have never, as in N-E-V-E-R had anything done like this. And I don’t mean those absolute quacks who state they can manipulate the spine/ body. She is an actual, qualified physiotherapist. And she was really able to do it. While it felt a bit weird, it wasn’t very painful. Furthermore, she felt this was a normal thing for a physio to do and she couldn’t understand why no one had done it for me up until now. Haha! No. It’s really not a normal thing, where I live anyway. There’s no way my Irish physio (who I adore by the way!) could do that, for the simple fact if she could have helped she would have. 


Moving down to the knees she noted the knee caps were higher than they were supposed to be. Em, yuck. My “bad knee” (the right side) even more so. She said I must find it impossible to do stairs with them positioned there. I assume, again, that this is a normal EDS thing. Our body parts hate staying in the right place. Again, she noted – “the body will endeavour to find a way to move”. It’s really fascinating.

I always felt, with an illness like this, that my body was against me. Betraying me in every way possible. But in actual fact it is trying far harder to move than I give it credit for. Makes me look at my body in a totally different way. My body is badass. It’s doing things it shouldn’t be able to do. It’s just doing them in its own way but making the situation worse as a result. Heck, that’s me all over!

The manipulation felt quite grosse but wasn’t too painful. However, over the next few days the knees (again, more so the “bad one”) swelled and became really unstable, so I had to rest for a few days. I assume this is normal. The knee did not like being told where to go, har.

Upright MRI

Eventually after a few days, the consultant emailed me over some information bout the upright MRI report.

I have an issue called Chiari malformation (which yes, is as difficult to pronounce as it looks, I say it differently each time). This is basically when part of the cerebellum (the cerebellar tonsils, to be exact) hang down into the opening at the base of the skull. Mine measure 10mm, although I’m not sure if size is really important. Luckily it is not at the point of needing surgery, so we are absolutely over the moon with relief. (note -while surgery may relieve symptoms, it is of course risky and may not relieve symptoms fully. It’s really only advised if complications become life threatening, so it wasn’t something I would ever consider unless at that stage).

My instability issues are also not at a life-threatening level of needing surgery, so overall a very positive outcome.

While this all might all sound disgusting and kinda like bad news, it honestly is the best case outcome. The results were never going to come back saying there was nothing happening underneath. Myself and Bicky were well aware of this and prepared. Chiari is spoken about a lot in The EDS community, as many patients suffer with this comorbidity. While I obviously would rather have no signs of Chiari at all, and I don’t know what way this might progress in the future (because A. I don’t actually know a whole lot about it, if it can progress and B. I have yet to speak on the phone with my very busy consultant), we are truly overjoyed.

Following this joy, I had the very human and sincere moment of sheer guilt knowing that many Irish patients are not so lucky. The amount of Irish EDS sufferers saving and fundraising for very expensive surgery abroad absolutely breaks my heart, and was always going to effect how I celebrated my positive news. So I’m doing so more with a whimper than with a bang, and I hope those who know me will understand this. Things cannot continue like they are for Ehlers-Danlos patients in Ireland, they just simply can’t.

And Now...

Since then I’ve decreased most exercising other than those done in the pool (other than the prescribed, slight movements), on the advice of the London physio -and indeed, as insisted by all physiotherapists who have ever met me. I have a good bit more energy for normal, day-to-day activities.

A hang-up of mine that I can’t seem to get rid of… I feel if I’m not in absolute agony from the exercise, then I am a failure. I know how ridiculous that sounds, I know I shouldn’t feel that way. I honestly just can’t seem to stop it and need to work harder at that process. Conditioning of childhood, a result of inexperienced physiotherapists. Sometimes the psychological issues are just as pronounced and hard to cure as the physical ones.

I’m waiting for my next appointment for the physio here, and hopefully by then will have a report for her from the London physio. I would honestly be surprised if she could unlock my spine in the way suggested, but we’ll see. The London physio suggested going back to her every 3-6 months, so hopefully that is on the agenda. At the very least to make sure all my joints are in the right place. I didn’t realise I was so bad at knowing! Partial dislocations are an everyday part of my life. I thought I knew my body, in that respect.

The asthma nurse switched me to a preventive inhaler, after my peek flow was only 130. Apparently for my age/ height it should be around 450, but she would be happy if it was around 350. Yikes. I had no idea it was that bad, normal health things really get put on the backburner when you have so many issues at once. She said I will probably feel more energy on a daily basis, and three weeks later I honestly think I do! It’s crazy. Of course I still have more fatigue than a healthy person, but for me, I can notice the difference. She explained that I would have recognised the asthma issues more if I had been as mobile as the average person, and would have had more asthma attacks. As it stands I’ve only really had one bad one (at Christmas past). And kind of luckily, as it made me seek out help.

Recent medication changes for stomach, vestibular issues and allergies have also helped immensely. While I still have symptoms and issues, I can be around music and not want to cry, I have less stomach acid and less random mouth sores/ swellings. So all brilliant.

But I’m having problems controlling the gag reflex when I have to move my neck, particularly during travel, and it’s not pleasant. I might look at some anti-nausea medications to help this. I can deal with small meals, and feeling sick after food -all the issues I have with the hiatal. hernia and general GERD.  But not just feeling sick and gagging randomly for no reason (as comes with the neck issues). It’s a sudden kind of throwing up, so quite uncontrollable. Embarrassing too, if nothing else!

I’m still trying to obtain heart test results from Louth hospital for the last few months, and my cardiologist’s secretary has also been on their case. To date they have sent results of an old ECG (years ago, my pre-chemo one) and some notes of my holter monitor a few months ago -not the actual report or raw data. They seem to have an attitude problem and aren’t playing ball. They get annoyed when I try contact, and I gather the are the same to the secretary. At this stage I will have to simply apply for my records under the freedom of information act. Which is ridiculous, but it’s been months. I’m going to contact my cardiologist next week and request we just do the tilt table test to test for the suspected POTS/ dysautonomia, rather than wait for the previous results. He has concerns that I have other heart issues at play and is worried about putting my heart under strain. But I really feel the tachycardia is only the result of some form of dysautonomia, so I might just ask can I sign a waiver (if he needs it) and go for it.

I have no idea what the future holds but I’m feeling positive. I’ll deal with the pain in the best way I always have, and I’m confident with the help of London that we can monitor the rest of the icky stuff.

Since London we had a nice night away in Donegal, a Christmas gift from my sister and brother in law. We’re looking forward to having babas now (fingers and ovaries crossed)…

2018, lets be having ya! Ya fat cunt x

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