Friday 1 December 2017

Health updates - Winter 2017

Howdy folks!

So few health updates...
(See previous here).

Head, Shoulders, Knees and Splints

As mentioned in the summer, I've started seeing a physio at last -one who knows a bit about EDS and willing to keep me on. Through her I was also put in touch with an occupational therapist, who was able to fit me with suitable to finger splints as well as a few other hand/ arm supports. The ring splints are truly amazing! I have so much more movement in my fingers, and they dislocate a lot a less. From typing, to even coughing into my hand, my fingers were honestly just crumbling and in a state of dislocation 24/7. So these have helped a lot. These tiny bits of plastic really do so much work. An exoskeleton of sorts. Next I need to inquire about something for my knee.

I also had a visit to the house to see what could be fitted. I turned down most things -I have issues getting in and out of bed but don't feel I require anything yet, I don't feel I need bars at the toilet as I have the bath one side and cabinet the other side so use them to sit down... The one thing I accepted was this beauty of a perching stool. The slopped design of the seat means that I can get far enough to the sideboard to chop vegetables, do the dishes, etc, but I'm also leaning on the seat comfortably. Perfect on days when I can't stand for long.

If I need things in the future, as I naturally will, I can contact them again. It's amazing to finally be connected with these services. It should have been years ago, but with no suitable physio it just wasn't possible to gain access to these things. There should be a way around that -patients shouldn't be out of the reach of equipment simply because they can't be helped medically. I don't even mind buying my own stuff, which I have (wheelchair, which was the item she asked if I had. Rollator, neck collar, canes, bandages, and so on), but with certain things like the ring splints you really need guidance and fittings.

My physical therapist has been brilliant with working with me. Very patient. I still have major hang-ups from the disasters of childhood -In that I get more than frustrated when I can't do something, and blame myself immensely. It comes from the attitude of my former physios, who blamed my condition and issues on me not trying hard enough... I know now as an adult that A) All the physio in the world does NOT change the size or shape of your hip socket, and that B) The physio I was doing was not suitable for someone who dislocates (which they didn't realise was happening at the time, obviously). She makes sure I know that it's ok to be in pain, it's ok to physically not be able to do something -that it isn't my fault, it's simply the way my body is from this condition.

For the first few weeks I definitely built myself up, using the simple slow movements she prescribed to me. Honestly, these are still difficult to do, but they are doable for the most part. If something isn't doable at all, she tries something else -she believes me that I'm trying, she realises some things just are not possible for my body. The difference between this understanding and the physio of my childhood, is night and day. We haven't really gotten around to my shoulders, the issue I first presented with, as my legs are such a major problem that she wanted to tackle.

Unfortunately while the exercises on my left side are slowly increasing, the movements becoming easier, the right side (the worst hip side) is drastically decreasing the last while. There is not a lot we can do for the hip as I need surgery, and then of course physio after surgery. I think we are fighting a losing battle but I am going to continue to do what we can. My C spine issues are unfortunately also getting in the way.

Head Over Heart

As some of you may remember, especially if you follow me on Facebook, I had a cardiology appointment in Dublin in September to finally suss out a full diagnoses for POTS. The consultant did basic heart rate exams and took medical history, all the usual. Based on them he believes either POTS or Inappropriate Sinus Tachycardia -both similar conditions, although POTS is more common. I was informed years ago through neurology that, "we're nearly certain you have POTS or some form of dysautonomia", and that I should treat it as such -up the salt, water, stockings, etc. And also see a cardiologist with knowledge in this area. Dysautonomia is pretty complex, so I'm not going to go into loads of details (again), but you can see here to read all about POTS. It's not exactly a heart issue, and not exactly a brain issue -it's how these two interact with each other. Therefore, sometimes you may need to see a cardiologist, sometimes a neurologist, and sometimes both.

The most symptomatic issue for me is dizziness from low BP, as I can collapse and injure myself. Heat makes this so much worse, and the summer was HORRIBLE. I had a couple of very bad bangs to head during fainting spells. So, years later, I'm taking the plunge for the full diagnoses. All this "oh we're pretty positive you have POTS" is all well and good, but it won't serve me well if I ever need to be admitted to hospital for a bang to head... Something I avoid. Quite stupidly, I realise.

As it's no longer summer, I get dizzy and fall waaay less, so that's a huge plus. But I would like to have something in place by next summer. Of course the cardiologist is yet again another private consultant -there's no point going to one who has never heard of these conditions. A tilt table test is generally needed for diagnoses -I've only ever had a "poor man TTT" performed by GP's and various specialists. But first, he wanted an echocardiogram (especially as I haven't had one since finishing chemotherapy) and a 24-hour holter monitor. To save money from the medical funds, I went publicly for these and had them in October. Unfortunately the results went to some random cardiologist in another hospital, who I've never had dealings with haha, so it was hard to track them down! Luckily my actual consultant's secretary was able to help with this, and she thinks they are going to be posted to them soon. So when that happens, I can finally book my second appointment with the cardiologist.

Had my #echocardiogram yesterday and then had this wee guy fitted for 24 hours -holter monitor to read heart rate. He's so tiny! I really don't know what I was expecting, haha. I feel like I should have asked for more instruction... How many times do I feed him? 😜 pretty unintrusive. Back to cardiologist once we have results. Not expecting to find much, he is pretty sure the issue is either POTS or inappropriate sinus tachycardia, but worth ticking other issues off the list. Next up - Occupational therapist house visit Monday and geneticist on Tuesday. Keep up to date on the blog at and 💗 #Tamagotchi #technology #cardiology #dysautonomia #POTS #heart #ehlersdanlossyndrome #spoonie #spoonieproblems #spoonieblogger #chronicillness #disabilityblogger #holtermonitor #cripplebabyblog
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London Tales

Finally made it to my first appointment in London to Dr. Hakim. The travelling was very hard -as you may know, I use a neck support to travel but it didn't help much. Car for an hour, plane, hour and half bus. My poor head was in an absolute spin, pain, trying not to vomit. Not to mention UK airports seem to be APPALLING when dealing with rollators. Seriously, they seem to think they are a fashion statement or something, rather than a disability aid. I may write another post on that in the future.

Luckily we had a rest that night in the hotel and had the appointment the next day. I had wrote out a very detailed description of my medical history, current issues and medications. This helped the appointment run a lot more smoothly -after all, he has a lot to catch up on. He noted of course that my story was all to familiar. His main concern is the C spine issues, and the fact that I have been having vestibular problems (which I ended up in hospital for during the end of summer... Neuro wanted to rule out mini strokes which they did. They think I may have Meniere's disease as it was in notes from few years ago, but felt that I also needed an upright MRI in London to see if instability issues in the neck are causing these symptoms).

I've had tinnitus for years and it doesn't bother me much, except when the tone changes suddenly and drastically. Waves and static noises are the worst. My main annoyance is the ear fullness, which can be painful. During full attacks I lose a lot of my hearing and have full on vertigo, not just my usual low BP. A recent hearing test shows a decrease in my hearing, but luckily I'm still just in the normal range. I'm on a waiting list for an ENT (which might be two years), although we both know -Dr. Hakim and myself- that these symptoms can also be from instability issues and other related EDS things. Who knows, could even be both at play.

With that in mind he thinks I should go for an upright MRI, so we are getting a date set up for the new year. He also wants me to see his physio team afterwards, so they can give my current physio some advice. He can't understand the hesitancy for Irish surgeons to touch the hip and is hoping that I might get funding to have the surgeries done in the UK instead. It's absolutely ridiculous, I'm using the chair more and more, and that is really mostly down to the hip collapsing constantly.

I have one last waiting list for the orthopaedics, Beaumont hospital. On it just over a year. If I get an appointment with them and they try to pull the EDS card, he said he is happy for them to contact him, the actual expert, for reassurance that outcomes out-way any risks. Only issue is, their ego may get in the way of course.

...On that note, I am still waiting for my rheumatology appointment in St. Vincents. The one I was put on through Cappagh over a year ago, as I needed emergency, in-house rehabilitation... Maybe one day, haha!

...Two years on the list now for pain consultant in Beaumont. Although I'm not pushed, I don't hear great things about pain clinics, at all.

So London was successful. Lovely man, very knowledgeable. Couple new meds to try, more on them later. I have a GP visit soon so should get them then.

Right now I'm looking forward to Christmas and not worrying about the upright MRI until the new year. I'm silently hopeful that it won't show huge issues and I won't need surgery of any form... Massive love to those in the community who do not have such a luxury, as they are currently planning their surgeries abroad. And some, planning surgeries for their children... Please, please, please sign the petition for them. We may never be able to have the surgeries performed in Ireland, that may be a stretch, but we still deserve basic health care in our own country.

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