Turners tours…….

Firstly I must apologise for not updating my blog sooner, since being back home we’ve been on tour…..of local hospitals *sighs*.

So……how am I feeling post fusion wise??? Well in terms of the surgery recovery I am doing very well, I think. I seem to have healed beautifully, the scar is very tidy and my undercut is starting to grow out to a more disheveled/shabby kind of look. I am in the process of weaning myself out of the brace and really just listening to my body during this process. The fact I can now carry the weight of my own head is simply amazing, I will never take that for granted. I’d say I manage about an hour before the real spasms kick in of which I either put the brace back on for a rest or lay flat and alternate heat and ice. Today I actually had my first physiotherapy appointment since surgery, it was nice to see my physiotherapist again, she is lovely. We are taking things very slowly and starting off with some light isometric exercises which strengthen the neck muscles, I will also be doing some extremely light core strength exercises. My body has become very deconditioned over the last few years and my muscle tone and control is poor but with EDS its always a case of starting right from the beginning and working our way up at a slow pace so for the next month it will be light isometric exercises and some stomach in/bottom squeezes lay flat. And on top of that some light daily massage (sadly the NHS don’t provide a masseuse) to loosen up the trigger points as my neck and shoulders are very tight since fusion partly due to the magnitude of the surgery and partly because of the limited movement I have now.

In ten days I will be having my post op three month x-ray to ensure nothing has worked loose and to see if the bone has started to grow. I’m quite nervous for this actually as the aim is for my own bone to grow over time for the surgery to be a success.

So many people have been asking what improvements I have noticed since surgery, this can be quite a tricky question to answer one being as it’s still relatively early days and also I have multiple chronic conditions that all feed into each other and give off an array of symptoms and fluctuate in nature daily. So far the very fact I can hold my head up independently again without a brace or holding it myself with my hands is AMAZING. I have noticed an improvement with my vertigo, tinnitus, neck pain and bladder issues which is very positive. I’d say the biggest blow so far is that the debilitating headaches I’ve had for 2.5 years daily still remain as well as talking aggravating the headaches further and for anyone that knows me personally knows how much I LOVE to talk!!! This has been one of the hardest elements for me, being muted 80% of the day just to try and keep my headaches at a medium/low level. I also struggle with sounds around me it’s like sensory overload (very bizarre). Myself and Nick are off to London in the New year to see a leading professor who specialises in headache disorders particularly in EDS so I am very much looking forward to meeting this expert. Headaches and EDS are very complex as there can be so many different causes from migraine, blood vessel problems all the way through to high/low brain pressure and anything in-between. I shall keep you all updated how that appointment goes. Before I banged my head 2.5 years ago and this cascade of symptoms came about I had never suffered from headaches in my life and they are so very hard to articulate as they are not like your average headache, or hangover headache (I wish) the pain moves all around my head and face, changing in intensity going from severe pulsating pain to knife like pain to pressure. Very odd. Very unpleasant. Very debilitating. This is the symptom that has stopped me in my tracks the past few years.

Now…..the rest of my body!! I have completed a diagram labelling a body of the various organs/joints affected for a clinician and thought I would share it on my blog. Labelling the body doesn’t really give insight into what it’s like living with each and every symptom but I thought it was useful none the less. *Get your magnifying glass out or use our zoom*

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Since being back my parents and I have toured the hospitals catching up with all my consultants. My parents…. literally the best humans on earth.

Turner’s Tour-

Tour 1

Myself and Nick went to see the pain team. We spoke with a nice lady and discussed my conditions and the impact they have on my life. As well as controlling my pain one of my big issues is coming to terms with my conditions and how my life isn’t what I expected. There are many aspects of this for me personally that I struggle with and I’ve decided I’m going to open up more in my next blog post about this topic I’ve quietly struggled with the last few years.

Tour 2-

I have seen my GP a few times to catch up with her post surgery and to discuss my worsening POTS symptoms as I’m not due to see my cardiologist until next year. It’s quite common for POTs to go crazy after major surgery and inactivity so I’m not surprised. My heart rate is spiking quite high but at present it’s coming back down on its own within a reasonable time frame of which I am thankful as there have been times when it’s landed me in A&E when it refuses to go below 150. My other issues are the inability to stand for longer than 10 minutes without intense blood pooling in my legs and low blood pressure. I am soon to start a medication to increase my blood pressure and widen the blood vessels, this tablet doesn’t come without side effects and possible complications so I will need to check in with my GP regularly for my blood pressure to be taken as it can cause hypertension and effect my heart rate. I also had some bloods taken and my 3 monthly b12 jab. I’m so fortunate to have a lovely practice with lovely doctors, nurses and staff.

Tour 3– Ear, nose and throat appointment. We discussed the surgery I require for a severely deviated septum which I’ve had for a long time however it has got progressively worse to the point my right nostril is now out of order. Given I will need to be intubated and require a bit of extension of my neck we agreed to catch up again in January to book a date for surgery hopefully middle of next year as I need a break but it maybe sooner.

Tour 4- The dietician came to my house, so I call this half a tour. She was extremely pleased with the weight I have gained but understands how it can fluctuate with my gastro symptoms. Although my diet only consists of around 10 foods she was happy I’m getting what I need to sustain myself and recommend i take some vitamins also. We have a plan of nutritional drinks that are easier to digest for when my weight dips. I have put back on the stone I lost after surgery which is fantastic news.

Tour 5– I saw my gastro as I am struggling immensely as always with my stomach/bowel. My gastro system has plagued me for around 10 years and I suffer so much because of it. Firstly we addressed how my food has been sticking since surgery and he was a little
Concerned if it was nerve related. He booked me in for a barium swallow. I have also had intractable heartburn/reflux/chest/back pain the last 6 weeks which isn’t responding to potent acid reducing drugs. My gastro wanted to do an endoscopy however I am unable to tolerate them without being put totally to sleep which he felt so soon after surgery wasn’t advisable but we are going to discuss this further as the symptoms are debilitating. Way back I had a study called a sitzmark study which involved swallowing various pills over a few days, each pill contained different shapes and then being x-rayed to see where the shapes were. The majority of the shapes are meant to have left the body however with me 90% remained, I’ll never forget when he turned the screen round to show mum and I and my little intestine and colon was just swimming with little triangles, circles and rectangles, I didn’t know if it was the shape game perfection from the 80’s I was looking at!!!! This shows a condition called colonic inertia, basically the nerves and muscles in my bowel don’t fire off like they should it’s a step up from good old constipation and the worst thing for it is high fibre foods as they cause unbearable cramping, broccoli is the devil!! We discussed how I seem to fluctuate between dumping syndrome (classic name) whereby I eat and within 30 minutes I am sweating, pass out and find myself on the thrown (too much information?) and within an hour or so have low blood sugar like I haven’t eaten in days or extremely slow stomach transit whereby my food sits in my stomach for hours and hours causing indigestion/ nausea and bloating, couple that with my snail like colon and it’s HELL. The nerves in my stomach just misfire and the muscles are uncoordinated so I often pass out with the level of cramping and pain. I am being sent for a gastric emptying study in the new year to chow on a radioactive egg and jam butty to see the speed food is leaving my stomach.

Tour 6- Barium swallow day. I went and swallowed some chalky paint which tasted of refreshers and stood on some kind of contraption whilst x-rays were taken to assess my swallow. Sadly due to fusion I couldn’t complete the final part to look for reflux and hernias as it involves getting my head into some rather funky positions I couldn’t do. The final part of the test with me being gluten free involved me eating a mince pie top I brought with me coated in barium (how to kill a good mince pie right there) !! I chewed it to death to get it down, more than I would normally as I wasn’t allowed water to send it on it’s way and didn’t want to choke.

Tour 7- caught up with my lovely physio who has put me on a very light post fusion programme.

We have speech and language, pain clinic x2 and x-rays before Turners tours finally finishes 28th December for the year before resuming in January which is booking up fast, magical mystery tour has nothing on us.

 
In other news-

During all of the appointments and symptoms I have tried to get back to making the odd item. It’s very important for me to achieve something with my day for my pride, my mind and my self worth. Although now everything has to be adapted and done in stages (gone are the days of spending 10 hours behind a sewing machine) everything, due to pain has to be undertaken in 20 minute stints. I’m still trying to learn this pacing business. However I am super proud of the few little things I’ve made and achieved, it really is the little things at the moment that keep you going.

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I thought I would finish off with a quote that I read daily at present through the trials of recovery and EDS.  I think its ideal for anyone who might be feeling overwhelmed right now, for whatever reason.

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A Real Life bobble head

We got off the train at Euston station, severe vertigo rendering it impossible to walk. I could not see straight nor gage where the floor was. This was to be the start of many more attacks of vertigo, little did I know what the cause was going to be. My partner, Nick, virtually carried me across the station to a coffee shop where we remained until the spinning settled down enough for us to navigate our way to Medserina for my upright MRI scan. It was August 19th 2016.

Despite the multitude of symptoms I’d had over the years, headaches were never one of them. In May 2015 I began to develop the most excruciating pain to date. I had pains in my head 24/7, they ranged from pressure, occipital headaches/neuralgia, pulsating temples, frontal head aches, pulling back of my skull, teeth and facial pain. At times I lost my speech, my mouth would droop and my face go numb. These were headaches like NO other and the fact they were unremitting, I knew something serious was at play. Debilitating neck pain accompanied the headaches along with clicking, crunching and spasms. I became very aware of the weight of my head. Suddenly I felt like I was carrying a bowling ball on a tooth pick and my shoulders became equally as painful. It was terribly debilitating.
The next 15 months were spent in and out of A&E, neurologist appointments and testing. It was a long, complicated and traumatic 15 months, the worst time of my life. I will revisit this time again in my blog but at present its still too raw.

The oh so familair diagnosis merry-go round commenced, starting with a suspected stroke, due to weakness on my right side and facial droop then followed bleed on the brain week. As time went by and more scans were not showing the cause (as they were supine) the avenues of migraine, occipital neuralgia and hemiplegic migraine ensued. I had injections into my skull without anaesthetic due to allergy, all to no avail.

I was losing hope. I had no idea what was causing such pain but I knew living my life like this was not an option. I couldn’t carry on. As time went by the headaches increased in intensity, shoulder pain worsened and the ability to carry my head was becoming impossible. When upright I’d physically hold my head up with my hands at times. As strong willed as I am, at this point I felt I could not go on another minute. I was still employed but unable to attend work due to the severity of the symptoms.  I spent 3 months mainly bed ridden, feeling very isolated and alone. I was losing every aspect of my life, everything I worked for, everything I enjoyed, everything that made me, me was fading away and I didn’t know why.  My world became very small.

Over time I developed weakness down my right side, I was dropping items, severe vertigo, dizziness, vision problems, increase in nausea, my hearing changed, tinnitus, I started to forget words and have problems communicating at times.  I began choking on liquids and solids and found it increasingly hard to swallow. The list of symptoms increased as the months went by.  I had never felt as frightened as I did at this time.

It was a chance conversation with my Shoulder surgeon that put me on the right path. I’d had right shoulder pain for years and was told by many physios it was just a strain. An MRI scan revealed I had 2 shoulder tears (EDS for you) and I was referred to a surgeon. As well as my shoulder the surgeon was very interested in EDS, asking me about my various symptoms. I told him about the current symptoms and the impact they were having on my life. He immediately said it sounded like neck instability as the way I was describing my symptoms was almost identical to that of rheumatoid arthritis patients he had come across with instability in the neck. 

Once home I took to google, I came across articles on Craniocervical instability and the similarities were far too canny. I found a support group on Social media (they have proven invaluable) it became apparent from other sufferers and medical information that the only way to find Instability in EDS patients, due to the mechanics of why we have it is through an upright Motion MRI of which there was only one in the country.  My GP made the referral.

We arrived at Medserina and were taken into the waiting area. The vertigo was so extreme I had no idea how I would sit in a scanner for the next hour, but I hadn’t come all this way for nothing.  I sat and sipped on water trying to focus on one place in the room as it span around me. Nick completed the paper work for me and I signed.

Nick walked me to the scanner and stayed in the room with me. I was strapped into the scanner with a cage placed over my head. First of all, scans were taken in neutral followed by flexion, once I was flexed a bar was placed to support my head and to limit movement to enable a good clarity of picture, the cage was again placed and the radiographers left the room to take the images.  I then had to extend my neck and it was held in position.  It was very painful but I tried to remain focused to get the job done. Then came rotation both left and right. On rotation right I lost the ability to swallow, this frightened the life out of me.  I could not speak as I could not swallow, a groaning came from me and the radiographers ran in and released the bar. I had no idea at the time why that had happened. The scan lasted just over an hour.

We sat in the waiting area afterwards as I felt too unwell to get back to the station. Myself and Nick got chatting to a lady who felt equally as rough after her scan and it turned out she also had EDS and not only that she lived less than 10 miles from me, small world.  We exchanged numbers.  We left the facility after 30 minutes with my images on disk and was told the report would arrive within the week. The journey home was horrific. My head and neck agony after the scan, vertigo still lingering and now nausea.  It felt like the longest train journey of my life.

A few days later I received a copy of my report, it was clear from the imaging I had craniocervical instability. I did not understand everything in the report so I arranged a telephone consultation with Professor Smith, consultant radiologist.  Professor Smith explained that I had a range of motion in flexion and extension greater than 95 degrees and that instability was demonstrated in flexion and on rotation. He went onto say I would need a fusion surgery however this is not yet undertaken in the UK on EDS patients. I could not believe what I was hearing, it was 2016 not 1916!! The professor gave me a few names of world class surgeons, all based in America and said that UK/Irish patients were having to go for surgery over there.

Panic set in, how could I make it to the states? How could I fund such surgery? I read numerous stories of patients in the UK and Ireland having to fundraise to get over to America. One amazing girl had to sail as she was not fit to fly. I felt I was in a living nightmare.  I needed to get the advice of top neurosurgeons as soon as possible.  In the support group there were talks of another surgeon based in Barcelona who had recently undertaken a surgery on a fellow EDS’er.  More and more UK patients were heading over to consult with him, I felt at that time this was a viable option and we made arrangements to have a consultation over in Barcelona for November.  We also scheduled a Skype consultation with one of the worlds leading neurosurgeons in America for December.

It was only when we made the long and difficult journey to Barcelona to meet with both Dr Gilete and Dr Oliver (Europe’s leading skull based surgeon) did we realise just how severe my instability was and the risks involved…………….