Dystonic feet!

As I briefly mentioned in my last post I was due to see the orthotics department, which actually turned out to be an occupational therapist, in regards to my deformed feet.

Just to aliterate to those of you who may not have read my earlier post, over time Dystonia has gradually 20140128-232807.jpgmolded my feet into this typical Dystonic state, and have now become fixed in this position.

On a few occasions they have turned in further. This is not only painful but has added to my worry that my feet may eventually become too fixed, that I will not be able to regain back enough movement in my ankles to enable me to stand.

Therefore, as other courses of treatment have been postponed until I’ve reached the 12 month mark of my DBS surgery; and corrective surgery on my feet is not an option until my spasms are more under control, I’ve been keen to investigate the other, more conventional methods of treatment I.e. splints  (or something similar) to use as a precautionary measure.

An appointment was arranged for me late last week to meet up with my new physio at my local hospital to discuss my options, or so I thought.

In all honesty I wasn’t expecting much out of the appointment. I’d expected it to be all of 5 minutes for them to tell me they wouldn’t consider doing anything for just an precautionary measure, and that surgery was my best option and until then I would have to persevere with it. But in fact, both my Physio and one of the departments occupation therapist were ready and raring to go, to fix me up with a pair of open cast like splints I could take away with me the same day!
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They took about 30-40mins to make all in all and throughout the entire progress I didn’t spasm once nor  felt the urgency to relieve the cramps by rubbing. This may not sound particularly impressive to most but for me this is a massive achievement! Movement of my legs can often trigger a spasm, so the fact my legs were being moved and held in different position without it setting a spasm off, really pleased me!

I’ve had them a week now and wear them as often as I can. I have to say they are doing there job and are holding my foot back effectively. I’m so relieved that something is finally being done about them now.However I cant help but feel frustrated at the fact that if something like this had been put into place sooner, MAYBE the deformity could been prevented! After all a prevention is suppose to be better than a cure!

General Update!

Hi all I hope you are all keeping well and have had a good festive period and a great start to the New Year.

I know I haven’t been around in a while but I have just felt the need to take a break from everything.

In the recent months I have been determined to move my focus onto something other than Dystonia.  For a while now it has seemed more and more of my life revolves around this condition to the point where its dominance becomes overwhelming. Its here I find disregarding what I can of Dystonia a better coping mechanism so don’t think I’ve been ignoring you guys!

Since my last blog a few things have happened. From a medical point of view the progress has been slow but steady!

I’ve began that all important but nerve racking move over to the adult team now I’ve become 18. It’s been a move I have been dreading for a while if I’m honest but it’s one I’m going to grab with both hands and embrace.

I think it’s because it took such a long time to find a medical team that were willing to help me. That listened to what I had to say and understood my difficulties and frustration. I’m now at a place where I finally feel happy, confident and settled with my care and how it’s all moving forward, that the prospect of having to start all over again with a new team is daunting.  But I suppose, as the saying goes, a change is good and hopefully it will lead to bigger and better things.

I’m also making progress with DBS. Just before Christmas I took another trip out to Bristol hospital to have a further programming session. It was my 3rd tweaking session since the surgery and it couldn’t have come quicker as no improvements were seen from the previous setting.

It was arranged for me to see my neurologist during this appointment too. Not only was I due a follow up with him anyway, I was also wanted to discuss other methods of treatment I could try whilst in the process of trailing different DBS setting.

As I mentioned before my feet have now become fixed due to the severity and frequency of my spasm, and on a few occasions they have turned in even more whilst in a spasm.

My biggest concern is that they are going to get progressively worse as time goes on. Corrective surgery seems to be my only choice now to regain back enough function in my feet to enable me to stand. However I worry if preventative measures are not put into place even surgery may not be an option, so I thought I’d enquire about Botox as I have heard it’s an effective way to treat this type of problem!

After a brief discussion my consultant preferred we wait until at least 12 months post op before trying additional treatments alongside DBS, as he would like to see exactly what relief I was to gain from DBS alone which was understandable. However he did say it’s something we could look into in the near future.

Since then I’ve been in talks with my new adult Physio Carol, to ask if there’s any type of splint or something similar I could try in the mean time.  She’s managed to arrange an appointment for me with Orthotics to talk about possible options at the end of this month which I’m looking forward to. In general she is also in the process of organising a block set of hydrotherapy sessions to help me with my movement which I’m20140129-162749.jpg also excited about!

I have also, in the last few months re-joined the gym and now attend an hour’s session twice a week. I not only joined to improve my general fitness levels and to tone up but because it’s something I thoroughly enjoy. It’s given me another focus and has had a brilliant effect on my mood and energy level. It’s also been a great way of meeting new people!
I’m so lucky to have an amazing personal trainer who is so understanding and easy going. She’s been willing to adapt particular exercises to suit my needs and has worked me hard and kept me motivated. I love the fact she never rules any activities out because of my predicament (obviously in reason) which for me is important as it gives me a great sense of normality.

I’ve had a great start to 2014 and I hope better things are to come. I am determined to achieve everything I have wished for and to make this year my year! I want to look back this time next year and say 2014 was the year I put Dystonia in its place and show it exactly what I’m made of!

 

Further DBS programming

Hi Guys,
As some of you may know last week I went back to Frenchay Hospital to have further programming, which I was really excited about. Since leaving the hospital I have been gradually increasing the voltage of my DBS and have seen small but reassuring signs DBS is having a positive effect.
I’ve noticed I am consistently going longer in between each spasm and both the my physio and I have also seen improvements in my movements too all of which I was eager to report back to Karen.Thank you cake for all the staff at Frenchay x (3)

We arrived in good time so we took this opportunity to go and say a final farewell and Big Thanks to the amazing staff on the Barbara Russell Children’s Unit. We dropped off a cake for them along with some cards before heading over to the portable cabin for my appointment where I was met by Karen.
After a quick catch up and a wound check the programming commenced.

Similarly to last time I suffered with one of the common side effect of facial twitching and peculiar facial sensations, especially when the voltage was being turned up. Because of this it took a bit of time to find a setting that was right for me, one that left me with some benefits but no side effects.
Eventually it was agreed that a more direct channel would be targeted (meaning a specific area of my brain) and higher voltage would be set, which I would then gradually increases just like last time until my next appointment.

I think that’s the thing I find so comforting about DBS, there’s so many options!
There’s no right or wrong setting it’s all down to the individual. There also seems to be no limitation either which reassures me further that DBS is going to be the nearest thing I get to a cure.

Much love to you all and as always thanks for reading
X x x

The start To A New Beginning…

First off I would like to thank you all for you support and well wishes. I’m now just over 3 weeks post my DBS operation and eventhough I’m still very tired and my scars are tender I’m healing nicely and I’m recovering well, adapting to my new life as a bionic women.

The butterflies in my stomach started to fly manic on the way down to the hospital, the realisation of what was going to happen really started to set in. Even more so when Neil Baura, one of the neurosurgeons assisting professor Gill during my operation, came to introduce himself and talk me through the plan of attack.
He explain I would be having a series of scans following the day of admission under GA. This was to find the best route into which they could safely access the particular area of the brain they needed to target. He then went on to discuss the operation itself. He explained the procedure in a step by step manner including the complications and percentage of the risks, before handing me the pen to sign on that all important dotted line of the consent form.

The day of surgery soon arrived and as expected I was a bundle of nerves. I think it was the unknown that I feared the most. But after an anxious chat with my mum accompanied with a few tears I was ready more than ever to do this, to take that first step however scared I was to regain back my life and independence.

After 6 hours in theatre I was brought to recovery where I w20140129-161233.jpgas met by my mum and dad who had been told my operation went well. (If I’m honest I don’t remember a lot about this as I was dosed up with painkillers and anti-sickness meds that made me hallucinate.)
I was monitored closely and when I came round fully I was extremely sore and a little dizzy which I had expected and like every anaesthetic i have i felt rather icky too but overall the experience was nowhere near as bad as I had anticipated.

3 days post op my stimulator was turned on and continued to be adjusted up until the day of my discharge. It was such a weird experience. I had a few facial twitches and my speech was also effected. It either became slurred or was taken away completely all of which were completely normal and went once the electrical current was reduced.
Initially I didn’t see or feel a significant difference in my spasms which i was a little disappointed with even though I was told it could take a sometime. However I did notice that my spasms were slightly less tight and the periods between each spasm was longer which I suppose is a start.

A few days after that my stitches were removed from my head and behind my ear. It was then I was able to have a good look at my scars. I had been itching to get a glimpse of them and even though they were sore, I have to say I was amazed how neat and inconspicuous they looked.
Even the scar on my chest was also very neat I find myself staring at it sometimes admiring Professor Gill’s tidy work!
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I had envision much more gorier incisions. I had seen loads of different images of DBS on the internet i didn’t know what to expect if I’m honest. I was just so relived my hair was still in tacked and i still felt and looked normal. The only problem I had was my hair had become rather mattered and took my mum ages to detangle which was very uncomfortable.

Near the end of my stay future plans were discussed. As you know I will be moving into the adult services soon and i wanted the transaction to be smooth. There are arrangements in the pipe line for me to be transferred to a Dr Pall at the Queen Elizabeth hospital in Birmingham as it is nearer to where I live. Although I have heard great reports about Dr Pall himself and his team the whole move unnerves me. I have built up such a great rapport with the Frenchay staff and medics; I trust them, feel comfortable and very secure with them and in a way want to continue my journey with them. I can’t thank them enough for their help and support.
I worry that Birmingham won’t get me and won’t understand why I worry and my concerns. I suppose again it’s down to past experiences but I got to tell myself change is good, and this move will be good and hopefully will be my turning point and everything from here on out will all be all uphill!

Right now it’s all about recovering from the operation. I’m taking it easy and listening to my body. I become really tired all of a sudden and my energy levels just plummet, leaving me feeling lethargic which is why it has taken me so long to write this post.
I’m continuing to increase the voltage of my stimulator and documenting any sort improvements I get. I’ve got another tweaking session soon with Karen too, so hopefully more improvement will be seen I’m so excited to see what is to come from DBS!

Much love to you all

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New antics of Dystonia

Recently my Dystonia has been doing some weird and wonderful things (well maybe not so wonderful)

Around the end of last week while putting my hair up I noticed the left side of my face particularly my cheek and lips went numb momentarily. Initially this was really scary but I reassured myself everything was fine and I may have just pinched a nerve. However recently I’ve experienced a similar thing again but this time my tongue became numb. It feels abit like when the analgesia from dental work is wearing off.

I wondered whether or not this may have been down to Dystonia. A sign that it may be spreading as I currently only suffer with Dystonia in my lower limbs. I think from what I’ve heard from other Dystonia sufferers this is unlikely and I’m just being a little paranoid, but for my own piece of mind it is something I would like to discuss with my neurologist at my upcoming intake.

Also tonight, the spasm and cramps in my feet have also differed. My toes began to curl under, then spread out into peculiar positions and shake. All of which was really uncomfortable and out of the ordinary. It’s defiantly not something that happens regularly put it that way. I have also been having an irritating twitch in my buttocks which again is different but expected I suppose as it is in my effective area.

The thought of my Dystonia spreading, which I know is a possibility, is frightening. I’m just about coping with the challenges Dystonia is throwing at me now let alone anymore of its tests.
Thank god my DBS surgery is soon! Hopefully these ‘weird and wonderful’ aspects of my Dystonia that are occurring more and more the longer time goes by will no longer cause me so much aggravation, and will give me a chance to tell Dystonia to bog off!

Appeal Update- Psychic Supper Evening

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On Friday, as some of you may know a psychic Supper evening was held at a local club in aid of my appeal, where a whopping £443.74 was raised!
Thank you to all the mediums involved for giving up their free time to attend this event, and a special thanks to Marlene Burgess and Michelle Smout who helped organise this.
As always I like to thank everyone who came for their support and best wishes, It was lovely to meet you all
lots of love Shannan x x x x

Erasing the past…

People say memories last a life time, the good and the bad there with you for life and both seem to me cause pain.

I find when I’m facing the difficulties of Dystonia this overwhelming, whirlwind of Negative emotions unleash themselves.

I envy the life I had before Dystonia and when I think of it the “If only’s” arise which is inevitable.
I finding it hard to let go of what’s happened and the journey I’ve encountered up to this point. I just can’t help but think things would be so different if medics wouldn’t have had such a blinkered view on things and would have explored more avenues.

I can’t help but feel immense anger towards them, even now after 5 years.
I’m angry at their laid back attitude during consultations where I would be pleading for help. And how they would pass me off with a disconcerning shrug of a shoulder and a shake of the head, sending me home wondering what to do and where to go next.
I’m frustrated at their incompetence and stupidity to recognise the treatments they provided were only deteriorating of my condition rather than improving it.
I’m annoyed at how they didn’t think of the affects inconsiderate comments would have on a fragile little girl at the time, which left me feeling like I was making something out of nothing and was a just seeking attention. But I wasn’t I was just IN PAIN!

I want them to recognise their wrong doings, admit to their mistakes and apologise for the way they have treated me. I have been left with a debilitating condition that I will suffer with for life that in my eyes could have been prevented if my predicament would have been dealt with appropriately.

For me now it’s trying to find a way of dealing with what’s happened so to speak.
It’s not something I will ever forget. It’s played too big of a part of my life for it to be easily forgotten and it still seems so raw.
It’s important for me to lay this to rest as I don’t want this to impact on future treatment.
It’s had a huge impact on my trust issues and confidence. It’s made me paranoid, I seem to question or look into things a lot more than I use to and I can often take things the wrong way. All of which it just not healthy.
I don’t want to be an angry person for the rest of my life. I want to move on but how?
I just can’t seem to find that delete button to erase the past and to eradicate the bad memories and thoughts that keep raising their ugly heads.