Local Heart, Global Soul

November 29, 2016

Choosing Function Over Form…

(photograph © Kiwidutch)

(photograph © Kiwidutch)

The foot saga continues (in a good way at least) in that my custom boot is now ready.

Of course it’s a prototype and a “work-in-progress”, and we hope to improve future additions as I discover what works and what doesn’t, but it’s a start and a big step away from my old lumpy grey plastic boot.

This one, ok, whilst only slightly less lumpy, is at least a little more camouflaged in basic black.

This is only the second shoe the company have ever made where the entire front section lifts off so that the foot can go in at ninety degrees, so the only way to know if it helps in reality is to wear it.

Even though it’s custom made for my foot, I will have to get to know how tight to pull the straps and to see if enough space has been left for my foot to swell when I’ve been standing, or sitting with my foot down for longer.

I will have to get used to the pressure of the construction on my skin rather than the airbags that are in the bigger boot. I will have to get comfortable with wearing it for longer periods of time. They suggested starting with just five minutes, practicing balancing and generally getting used to it without overdoing it.

We already see some gaps between the  two sections that are going too need adjusting in a future boot, in the meantime I’m looking forward to leading the way in this experimental shoe design. I care less about the look, by now there have been too many hours of tears and pain to start quibbling about if something is enough of a fashion statement, “functional” will do be perfectly well and I’m happy to help make it more and more functional and fashionable later into the future. That said I have also reached the stage where if I had to choose between something that looked fabulous and something that didn’t, but did the job better, I’d go for function over form every day of the week. At least we are trying something new, looking at alternative ideas and making the best of a nasty situation.

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

April 11, 2015

The Smoothest Of Skin, But If Only Things Would Calm Down…

Filed under: An Accidental Franken-Foot,PHOTOGRAPHY — kiwidutch @ 1:00 am
Tags: , ,
(photograph © Kiwidutch)

(photograph © Kiwidutch)

Yet another update on my foot.  Time has been slipping past but not always very well for me.

The “walking” cast was less of a walking cast and more of a standing one and it was painful right from the start.

It definitely wasn’t too tight, it was just that no matter what I did, I couldn’t manage to be comfortable with it.

One of the problems was the height of the “block”underneath, it made standing and walking hard work on my back due to my legs being such different lengths.

An email to the Plaster department got a reply suggesting that I add a shoe of similar height to my other foot to compensate, but the morphine is making me really dizzy so I decide that back pain is a better option than a tumble off high heels with the possibility of damage to my good foot.

Annoyingly I had as many problems at night as I did during the day with this cast, so started counting down the days until it’s removal almost as soon as it went on. I also ended up taking pain relief as often as I could,  so a trip back across the country to the hospital was an anticipated event. Finially  plaster cast number 12 in this foot saga is removed and I gain a walking boot. Not just any walking boot mind you, a walking boot with technology in the shape of left and right side air-bags inside of them.

The air-bags can be pumped up via a pump button on the side, and deflated by a smaller button next to it. I’m advised that between nine and twelve “pumps” on the inflate button is about right each side, but this advice is for a foot without dystrophy, and I’m already having trouble getting past three or four presses of the inflate button before the pressure gets unbearable.

Again I’m emailing the Pain department in my treating hospital, and getting advice from work doctors as well, advising extended elevation and even more pain relief.  For the moment I’m trying to wear the boot once or twice per day, for at least half an hour. It’s clear that whilst it’s intended that I wear it for three or four hours every day, and use it for support during day to day activities for the next month, that I’m not  going to manage it as planned. A good part of the problem is that the moment my foot is no longer elevated it begins to swell,  something that I was warned was to be expected, and that a time of  “calming down” would be normal.

The original idea was that I would wear the boot for a month and then progress to a rigid, stiff shoe, but time will tell if things are actually going to go to plan yet or not. One good thing to come from the plaster cast is that skin encased and not open to the usual exfoliation process that is normal for skin. As soon as the cast is off my skin starts peeling like crazy, and eventually huge lumps of hard, old skin come off both my leg and all parts of my foot. The process was quick and the “new” skin underneath is baby soft. The only pity is that my right foot still needs the attention of a pumice stone because my new found mega-smoothness is of course only on my left foot.

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

 

March 30, 2015

A Shocking Accessory Is Gained At Himself’s Expense…

Filed under: An Accidental Franken-Foot,LIFE,PHOTOGRAPHY — kiwidutch @ 1:00 am
Tags: , , ,
(photograph © Kiwidutch)

(photograph © Kiwidutch)

Yet another update on the Frankenfoot Saga because I’ve been busy with medical appointments: pain clinics and work Doctors.

Himself and I have been journeying back and forth around the country to the hospital where I had surgery and on this occasion the non-walking cast was coming off.

When we arrived in the paster department we joked with one of the staff that after twelve plaster casts I must have had most of the available colours by now, at which point a plaster cast colour chart was whipped out so that I could choose my next colour.

Before I could choose, Himself loudly exclaimed with disguest that the bright pink one was horribly loud and “who  on earth would want that?“.

Just to wind him up I immediately said “I do!”  even though anyone who knows me will know that I not a “girly girl” and don’t, and wouldn’t ever possess anything pink in my wardrobe.

The staff member helping us burst out laughing at the horrified look on Himself’s face and struggled to compose himself again as I told him “I would like to take your best and brightest pink please!“.

The old green cast was cut off with two long cuts down the sides, rather like cutting a baguette in half horizontally and there was a specific reason for this: it was because I was due to go for x-rays and my foot needed to be supported whilst I went there and back.

Once my foot had been gently semi-cleaned it was re-bandaged and put back into the lower half of the green plaster cast shell, which was in turn wrapped up for the journey to radiology.

Just the outer layer of bandages and the protective green cast were removed for the photos to be taken, and then everything was re-wrapped for the journey back.  I asked if it might be possible to see the images that had just been taken and the friendly staff in radiology wheeled me around into the staff booth to see the screens.

The six titanium screws were clear to see, and although of course during conversations with the surgeon I’d been told about them,  I was surprised because they were quite a lot bigger than I’d imagined.

(photograph © Kiwidutch)

(photograph © Kiwidutch)

It was also nice to have photographs on my camera that I could show family and friends because they too were curious as to how my new hardware had been placed.

Back in the plaster department they bought out a white plastic block and placed it on the bed, explaining that “walking cast” was not quite the right term, rather I was going from a non-weight baring cast to a weight bearing one.

The purpose of the screws is to hold the bones together and the idea is that whilst I’m in plaster the two sets of bones knit together to become one.

It’s this new formation of bone that will eventually take my weight, not the screws: they are only there so that things stay where they should be.

The little white block will allow me to put weight on my heel, but not yet by my toes because the bone-knitting process is not far enough along and  putting weight too far forwards at this stage will break the screws.

The second reason for not allowing weight near my toes is the dystrophy problem, since movement this part of my foot is seriously limited and very painful.

I first get a white plaster layer into which the “block” is anchoured and after that the sickly hot pink that made me laugh, not least because of Himself’s eye-rolling, head shaking and expressions of “wait until everyone at home sees this  one!” .

I can’t say that the drive of several hours home was an easy one or that the whole procedure of touching my foot wasn’t painful, because any touch to the lower section of my foot brought me to tears, but the hospital staff were as gentle as possible and I’m trying desperately to see the “bigger picture” where this is one of those things that just have to be endured in the quest to make things better in the long run.

I will be honest and say that there were tears during the procedure and on the way home, that it was a hard day and I hope this is the very very last of the plaster casts… at least the squeal that Kiwi Daughter let out on seeing my new colour and her laughter at the joke played on Himself helped put a smile back on my face.

Little Mr, who could care less about fashion, clothes colours etc as ten year old boys are apt to do, just looked puzzled and asked “what is Kiwi Daughter laughing about? ”  and when told he replied “I don’t get it” , shrugged and walked away. Another month in this cast… and then hopefully it will be the last I see of plaster of paris in my lifetime.

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

February 2, 2015

The Frankenfoot Diary: Gritted Teeth As The Embroidery Work Is Unpicked…

Filed under: An Accidental Franken-Foot,LIFE,PHOTOGRAPHY — kiwidutch @ 1:00 am
Tags: , , , ,
(photograph © Kiwidutch)

(photograph © Kiwidutch)

One week after I got out of hospital I was back in the passenger seat of the car with my foot propped up on the dashboard as Himself and I made our way back to a hospital in a different part of the Netherlands to get my stitches out.

The weather threatened to be bad so we allowed plenty of time for the journey but in the end the forecasters appeared to have gotten it wrong and the traffic on the motorways was light so we arrived with plenty of time to spare.

We have several appointments today, not  just getting the stitches out but also an check in with the pain specialist and the physiotherapist and we are pleased to find that there too, our appointments are quicker than we expected.

There is still a way to go on the pain front but with instructions to not cut my extended morphine intake for at least six weeks and several telephone appointments in place we head off to the plaster room to face up to the most difficult part of the day.

The staff are very professional and super friendly but there is no getting around the fact that the removal of the stitches was a painful ordeal that  I just had to try and get over and done with as quickly as possible, and once again I realised that it’s hardly easy to look dignified and composed when tears are streaming down your cheeks.

Once again the colour of the area around the wound is raising some concern, so during my next appointment they want to make some extra checks to see how far it has improved. I’m impressed that the staff in the plaster room know the entire procedure of what’s been done in my foot,  rattling off  technical terms and promising that Himself and I will be able to see the x-ray photos next visit so that we can get a final tally of the number of pieces of titanium inserted (around six) and see for ourselves just where they have been placed.

Of course, after the snip and extraction of thread procedure, there is encasement in plaster cast number eleven in a colour that Kiwi Daughter picked out for me when she saw the selection of possible colours in the basket from photographs I took the last occasion.

It’s green this time and this cast will say on for a further four weeks, at which time I can transfer from a non-walking plaster to a walking one for four weeks after that.

I have an uncomfortable trip back, there is nothing wrong with the new plaster, it’s just that I can’t seem to find my favourite part of the dashboard to park it on any more. We just leave the hospital when the bad weather that was promised for the morning closed in on us for the journey home but as luck would have it traffic was also light on the way home and we ran out of the bad weather near the outskirts of Den Haag (The Hague). Win win…. now with the stitches out I’m counting down the weeks until I will be plaster free.

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

(photograph © Kiwidutch)

November 25, 2014

Plugging In The Electrodes And Counting Down The Days…

(photograph © Kiwidutch)

(photograph © Kiwidutch)

The “Frankenfoot Saga” continues. As you will know from my other posts under this heading, I am searching for solutions after the expected recovery of my foot injury didn’t materialise.

The latest development is a different Pain Clinic than the one I had been previously attending and a new attempt at reducing the pain levels.

The new treatment is called “iontoforese” in Dutch (“iontophoresis” in English) and is where the anaesthetic Ketamine is injected into a blue pad which is then placed onto the most painful part of my foot.

Then a separate pad is put further up my leg and the two are connected with an electric current via little electrodes on each pad.  The Ketamine is drawn sub-dermally  from the blue pad to the white one and can be a very effective treatment for pain.

The treatment involves travelling to a hospital outside of the Hague twice a week for the forty minute treatment. The first six sessions in the first cycle of treatment  were beneficial to a point.

I’d describe my pain level as 8 put of 10 in intensity and the treatment reduced it to 4 out of  10, but not consistently throughout the treatment and not enough to significantly reduce the morphine based pain relief I am taking.

Don’t get me wrong, I’m delighted for the relief that the treatment is giving and very grateful for it since every little bit helps, I’m just not convinced that this is the treatment is a long term solution. I’m looking for something that will get me off the pain killers, not just  a slight reduction in them.

I also struggled with the side effects, I was dizzy and very sleepy to the point that after one treatment I came home and slept for nine hours, and still slept a full night’s sleep after that. The extreme sleepiness lasted every day for between two and three weeks, but  I was told that once I was used to the drug these side effects would pretty much disappear, which they did… kind of.

One EXCELLENT  piece of news has arrived in the meantime:  at the end of October, Himself and I travelled for an appointment with one of Europe’s top foot surgeons (who for the purposes of internet privacy we shall call “Dr X”) . We’d been on the waiting list for this appointment since March 2014 so it was a big day where we could get an expert opinion regarding options and a possible ways forward.

This Dr X said during the physical examination of my foot that I had an unusually high degree of pain  and confirmed that there are two pain sources: the dystrophy and the displaced bones. After going through various options said that he would be willing to operate and outlined what could be done. Of course there are risks and a few disadvantages to surgery and we are under no illusions that it will be a cure-all, but the situation at the moment without surgery has become intolerable so it appears that surgery is still the lesser of the possible evils.

The bad news is that this specialist has not only a long waiting list for his first appointment, but also a surgery waiting list of four to six months so we came home expecting to be notified of a surgery date for around  March / May 2015. The excellent news is that one his staff telephoned the next day and asked:  “Would I be available for surgery in January 2015” ?  (Stupid question, I was available yesterday!!!). My  “Yes, Yes, Yes please”  response  went down the phone line at light speed.  It’s fabulous news, just two months to wait!!!

I can only assume that Dr X  saw how much pain I had and when there was an earlier theatre spot available decided that he could let me jump the queue a little. Whatever the reason I am most appreciative that I don’t have to wait another four or six months in this kind of pain.

In the meantime we are working on the iontoforese treatments and counting down the days!!!

 

 

July 1, 2014

A Franken-Foot Update: Part 2…

(photograph © Kiwidutch)

(photograph © Kiwidutch)

Yesterday’s post was getting too long so here’s another chapter in this way too long running story…

The family diary has been full of scribbled notes for new medical appointments…

I visited a new Dr., then saw my company Doctor,  afterwards went back to one of the surgeons who did the first operation on my foot (and who initiated the visit with the specialist team in the other Dutch city).

I got a referral for a specialist foot surgeon,  and subsequently a letter saying that my referral had been received and that I could expect a appointment for first consultation in 6-7 months time.

I enquired with a second specialist foot surgeon and discovered that there too there was a waiting list and first consultation would be possible in January 2015… Hmm this isn’t going as easily as I’d hoped.

I manage to get an appointment with a foot surgeon in a local hospital (not a name recommended by anyone earlier but we figured, worth an opinion at least for further information).

We go back to the surgeon who operated previously (yet) again, this time Himself  manges to take time off work to be there for the appointment as well. The surgeon confirms that additional surgery might well be a good idea but recommends a foot specialist as the damage is so complex. He explains that a whole row of cartridge has gone from between the bones when they moved, it can’t be replaced so these bones probably need to be fused.

My physiotherapist agrees that the knee-high boot option is not ideal for someone my age, and that I need to be aware that a boot would help with pain to some extent but would also transfer pressure and possible problems to my knees, hips and lower back.

(photograph © Kiwidutch)

(photograph © Kiwidutch)

Next appointment is with the local foot specialist. Himself manages to accompany me  too and good thing as it’s all getting very technical and with all the medical terms my Dutch is getting stretched to the limit. Personally I didn’t like the specialists ultra brisk manner.

He insisted that I try and bend my foot and toes in ways they have refused to move for the last three and a half years, when I couldn’t he just started pushing and bending my foot in a rough way that left me in tears and a lot of pain.

He said that because the Dutch were spoiled and wanted to go on holiday before they had their operations, so he had space to operate in July if I chose him to operate.

I tried to tactfully ask if he thought he was the best person to operate on what is agreed to be a very complex case and his reply was “well there are lots that could do it better then I could”. I appreciate the honesty, and he did give me and my husband lots of information on how he saw that things should be done.

In Summary: He would fuse parts of the foot, remove other parts so that the bits sticking out would be lessened and pin the rest.  He advised that full recovery and mobility would not be realistic, I would probably have pain but hopefully less. How much less would be impossible to say. He questioned that I had dystrophia, that physiotherapy won’t bring any real benefit because he thinks it’s more a bone problem.

He says that my heel area doesn’t have any problems. After surgery I could expect 3 months in plaster and in normal cases recovery time would be a year, but since this is a complex case, to expect recovery to take a lot longer. He said that the lack of movement in my toes and ball of the foot probably indicated far more complex problems than first thought, so requested a CT scan for more detail.

Next stop just two days later was an appointment with an orthopaedic specialist, organised by the company doctor because a medical retirement might be needing to be taken into consideration.

Himself and I spent two hours at work with this specialist and liked the informative way a lot of helpful information was given. Although all physical examination of my foot produces pain, he took care to not force movement or any unnecessary pain which was appreciated.

(photograph © Kiwidutch)

(photograph © Kiwidutch)

His summary: Yet again we have a conflict in the opinion of a specialist but this time at least a lot of it made sense: for instance he looked at the movement in my heel area, this movement needs to be within a certain range if bones further down the foot are fused so that the lack of movement produced by the fusion is counterbalanced by the heel movement.

In his opinion the range of heel mobility is too limited to act as counter balance of a possible fusion so any operation would only limit the mobility of my foot and no gains would be made at all. He doesn’t think that rushing into surgery in July is a good idea at all because any fusions etc are irreversible.

In his opinion the idea of the other Dutch hospital to do a plaster cast was a good one but why didn’t they make the cast shorter? The pain could come from two sources and a knee high cast covers both…a shorter calf length one would have eliminated one pain source and given us a better idea of if the tissue is the source of the pain or the bones.

A low shoe of the roll type (because my foot doesn’t bend) would be a good idea, and to continue with physiotherapy for the dystrophy.

He said the difference in vein structure, colour and shape of my foot clearly demonstrate dystrophy and requested that I ask my GP for an MRI scan for best possible detail of what is clearly a lot of damage and a complex injury.  He has worked in the past with the specialist foot surgeon I have a referral for and will contact him to see if there is any possibility of being seen sooner than the expected 6-7 months waiting time at present.

Himself and I felt that what this specialist had to say made sense and so don’t want to rush into the earlier foot surgeon’s surgical option. We will ask the hospital for copies of the CT scan so that each specialist can look at the extra information it gives. In the meantime we hope that I might be able to see the top foot surgeon sooner and get additional advice from one of Europe’s top foot specialists.

Between my physio and the surgeon who did the first operation I have also have referral to a specialist  rehabilitation clinic that can make a temporary boot to give some pain relief  in the meantime. (different people to the “get a hiking boot” guy) There’s a big debate going on between the various medics as to how high this boot should be… But I should be used to that by now: nothing goes simple in this saga does it?

Life continues with large doses of pain relief (oxycodin) and physiotherapy for both my foot and back.  As usual I can stand for a short while, sit for a short while and lay comfortably for a short while as well. I’m trying hard not to go stir crazy.

My newest “contraption” is  a wrap-around brace with Velcro everywhere for my foot (via the physiotherapist) so that I can stand for longer with a bit less pain. It does help, but the downside is that I can’t wear it with shoes and sometimes my foot swells up a bit after I take it off.

Pain remains a serious issue so whatever options we end up taking I hope that pain relief is top priority. The term that all these medical experts keep using to describe my case is: “very complex“, I now know that this translates as “Hmmm ,what a right bloody mess“. The Frankenfoot saga continues.

June 30, 2014

A Franken-Foot Update: Part 1…

(Copyright © Kiwidutch)

(Copyright © Kiwidutch)

It’s time for another “Franken-Foot” update… as regular readers will know, a stair fall left bones displaced, tissue dysfunctional, pain intolerable and me still frustratingly on crutches after three and a half years.

In recent months the pain and morphine based pain relief have meant that I could no longer function at work, so am currently on extended sick leave whilst long term solutions for the problem can be found.

I have been very busy of late with medical appointments: I attended a meeting with a specialist team in another Dutch city, where the dystrophia specialist told me that I didn’t have a dystrophia problem but a bone problem, so really needed to see a good orthopaedic surgeon who specialised in feet. In his opinion the tissue damage would come good once the displaced bones were put back into place.

A physical rehabilitation specialist told me that the pain could be lessened by either supporting the displaced bone internally (surgery and pins) or externally (an orthopaedic boot). In a test to see if this theory would work in my case, I departed this hospital in a knee high plaster cast, as a cheap test version of the kind of support that a boot would provide.

Indeed this idea had merit: in the three weeks I was in plaster I managed to reduce my pain medication by a third and it definitely increased the time I could stand up during the day. The downside was that the cast was huge and trying to sleep a night was horrible.

The duvet would wrap around the cast and either I had all of the covers over me at night or none at all, resulting in an understandable nightly tug-of-war routine for the covers for my poor long suffering husband.   Good, clearly what we need long term is a foot support that could be taken off at night.

After this trial another consultation took place with the specialist team and their recommendation for a permanent solution was that I get a knee high orthopaedic boot to lessen the pain. I am lucky to have excellent health insurance cover so the Euro 1,500,– cost of each pair of boots would be met by my insurance company, but it left me with an uneasy gut feeling: I would be treating the pain but not the cause of it, I would be stuck only being able to wear one pair of shoes, large clumpy knee-high ones that may not fit under something like jeans, would look horrible with a dress or shorts and would probably not be  last word in comfort in temperatures of 30 C.

Bare feet or open shoes leave me in so much pain I can’t walk as far as the front door and none of my before-accident shoes fit any more because I have some stupid lumps of bone sticking out of one foot.

I talked with the rehabilitation specialist and told him my unease, his reply was “well my patients are usually happy with what I give them, if you don’t want these and you can go to a mountaineering shop and get some hiking shoes to give more support instead” . I felt this was rather unprofessional and let him know that if  after exploring every avenue a boot turned out to be my only option that I could happily accept that, but at this stage I want to see if surgery to fix the cause  of the problem is in any way an option. (hiking shoes don’t fit because of the bones sticking out either so Duh… just sour grapes that I wasn’t jumping to look like a geriatric decades before my time?). Well I’m not, so tough.

The plaster cast was removed in a local hospital in The Hague… drama there too because technically they aren’t allowed to remove casts put on by another hospital, they need written permission from my treating physician in the other hospital… red tape galore.

Four days later than planned and hoops jumped though they took the cast off… well tried to. It took six or seven times with the cutter to get it off.  They said it was one of the thickest casts they had ever seen. No wonder it had been giving me grief at night, I started to worry that an orthopaedic boot might have to be as big… ugh.  Kiwi Daughter tried out her latest nail varnish colour on my feet to cheer me up.

Now starts the research into the surgery option… and appointments with a multitude of  specialists.

There’s more information on that so I’ll post how that went tomorrow, The Franken-Foot Saga continues….

 

 

March 31, 2014

Casting An Eye On The Possibility Of A Boot….

Filed under: An Accidental Franken-Foot,LIFE — kiwidutch @ 1:00 am
Tags: , , , ,
(photograph © Kiwidutch)

(photograph © Kiwidutch)

It’s time for yet another update on my “franken-foot” saga.

Last week I travelled across the Netherlands to a hospital to see a team of specialists and hopefully achieve some “joined-up-thinking” between the team members so that we could determine the best way forward.

A short fall down a staircase could never seem to be so complicated, but the steroid medication I take for my asthma have made my bones significantly thinner in density and have been one of the biggest contributing factors to the amount of damage I managed to inflict on my foot.

The other significant factor was bad luck: apparently it can happen that more damage can be done in a short fall than a large one because even on an involuntary reaction level you have no time to try and save yourself or prepare for impact.

Ok, it happened, already with a long record of being accident prone I managed to tick all the boxes at one time: wrong place, wrong time (check), bad luck (check), stupidity (check). Believe me, after three and a half years of being on crutches and in near constant pain I cannot regret that I can not re-wind life by a crucial few minutes more than I do.

In January 2014 after failing to cope with the pain, changes to medication, tying and failing to intensify my physiotherapy regime in order to rectify the reversal of healing over the previous summer, and generally falling to pieces, I went back to the surgeon in The Hague who confirmed that the fact that the bones had not moved back into place was not at all normal.

The new team of specialists were horrified at just how far out of place things were and after some very painful prodding and poking they already determined a completely new idea of what they thought was the root of the problem.

Up until this point we have been trying to alleviate the dystrophy (freezing up of tissue) that takes place as in my case, after many months in plaster. The various specialists in the Hague told me that once the tissue “thawed out” in a figurative sense, they would regain function and pull the bones back into place. Now we see this hasn’t happened and the top half of my foot is still completely stiff and useless. The new hospital specialists take a different view: they believe that the bones are the problem, not the tissue function.

They believe that every time I stand up the displaced bones are taking the full responsibility of taking my weight and therefore no amount of supporting tissue will ever be able to compensate for the strain these bones are under, let alone move them back into their rightful position.

(photograph © Kiwidutch)

(photograph © Kiwidutch)

This stress on the displaced bones was in all likelihood a huge portion of my pain source too. The Rehabilitation specialist looked at the “roll” shoes I had been given and said that in his opinion, despite the addition of orthotics, they gave negligible support, and that since pain relief is my first priority that he thinks he can do something that will help me fairly quickly.

He knows of an excellent maker of custom orthopaedic footwear, apparently what I need is not a shoe, but a boot, something that goes up to my knee, gives support to my foot and entire leg and relieves the displaced bones in my foot of a large part of the responsibility of taking my weight.

This should have the added effect of greatly reducing the pain I’m in, hopefully even enough to reduce the morphine based pain medication I am currently taking. The only problem with all this is that it’s just a theory at present: and the making of a custom made boot will be an experiment costing in the hundreds of Euros.

Fortunately there is a way to test this theory out first using the same idea but a far cheaper material: plaster of paris.

So yes, dear friend this is how I managed to finish my day with the team by visiting another hospital department and gaining a plaster cast (cast number eight in this whole foot saga).

The good news is that we try it for three weeks and if the pain is reduced then we will go ahead with getting a custom boot made. This should help my foot transition from it’s current unstable state to a more stable one, from which we can start to look at long term options.

The bad news is that the long term options will probably involve an orthopaedic surgeon and another operation because these bones are probably not walking back into place by themselves any time soon   ever. Still, one step at a time, plod, plod (I’m getting good at that) and at least we are trying something different and who knows what the future holds. One thing is for sure, any and all progress will be most welcome.

February 10, 2014

The Possibility Of A Referral To A Specialist Team…

Filed under: An Accidental Franken-Foot,LIFE — kiwidutch @ 1:00 am
Tags: , , , ,

I’m interrupting my travel diary to bring you an update on my foot injury and recovery process. A few of my close blog friends will know that unanimous decisions by my Office Doctor, GP, physiotherapist, rehabilitation therapist and a psychologist that I was recommended to take some time off to see family and friends in New Zealand over Christmas and New Year so that’s what I did.

The change of scenery, the warmth and sunshine of a New Zealand summer and a chance to tell loved ones the truth about my health in person that I had been glossing over vaguely (or not telling at all) in emails and letters, proved important for my mental health and has helped me to renew strength to  face the long physical hurdles in the road ahead.

Now that I’m back home I’ve increased my physio appointments so that I can work on both my foot and my back more and last week had several  appointments for the GP (pain medication) and hospital to see one of the surgeons who operated on my foot after the accident.

(photograph © Kiwidutch)

(photograph © Kiwidutch)

Himself and I fully expected to hear that he would say “we fixed the nuts and bolts side of things, the rest will follow… eventually“…. and then the same old story about dystrophy being a hard thing to fix, takes ages and involves a lot of pain, be patient etc…

To our surprise he was really helpful and sympathetic. He agreed that solving my back problem will be complicated if I still don’t have a normal walking gait that is the underlying cause of the problem. Apparently 20-25% of patients who suffer damage like my accident produced don’t have the muscles etc pull everything back into place as it should, and it’s not normal that those bones haven’t gone back into place.

He has a colleague in the city of (another large city in the Netherlands, not named here for internet privacy reasons) who has set up a team of sort of micro-specialists dealing with intensive pain injuries in localised areas (usually caused by accidents) and they specialise in dystrophy too since it’s a side effect of people having been long in plaster casts which is often the case after accidents.

First I went for 4 x-rays and a specialist will check the bones to make sure they are all “whole”, (we know they are not in the right place) but if they aren’t whole or healed properly then operating again might have to be a necessary evil. Of course I don’t want that except as a last resort because another operation means more plaster and more freezing up of tissue that’s out of action. It would be like one step forward and five backwards.

Hopefully that’s not the case though and if the Orthopaedic surgeon is happy with the state of the bones then the next step is a referral request to the (other city hospital) team. If they think I am a suitable candidate then I need to go to this hospital for a day and would be seen during the day by the entire team of half a dozen specialists in dystrophy, feet, bones, tissue , physio, etc and also a psychological evaluation and then together and decide on what can be done. They will go through the all the medical stuff from the very beginning again and try and will together try and sort out the best way to go from here. This “joined-up” method of working between medical specialists isn’t the way things usually work here, so this would be a real breakthrough.

I can expect to hear in about three weeks if I have the referral or not and I’m really hoping that it happens because it’s clear that things as they are now are only ” barely managing” rather than “managing well” situation and I’m getting desperate for improvement.

We were very surprised that if the Doctors know that such a high percentage of patients don’t heal as “expected” why then don’t they make a year and a half two year appointment with all patients to check if everything is really going ok? (could have saved more than a year of grief in my case at least).

Himself and I were at least relieved that the surgeon had some ideas and contacts, it gives me some hope that they might have ideas or methods that can make things go faster, and if they can’t speed up the process maybe they might be able to make it more bearable.

These last weeks have been difficult on an emotional level, I’m crying again at everything and anything, but I’m strongly resisting upping the dose of  the antidepressants because I don’t want to deal with stronger side effects at the moment and hope that if I can get this referral I can get some advice on dealing with the emotional side of things too.

A HUGE THANK YOU to those of you who wrote to me privately…  your kind thoughts and good wishes mean the world to me! Fingers crossed that in a few weeks I will be busy with new hospital appointments and have a new intergrated “game plan” for a better recovery process.

December 6, 2012

The Little Steps of Progress…

Filed under: Kids and Family,LIFE,PHOTOGRAPHY — kiwidutch @ 1:00 am
Tags: , , , ,
(photograph © Kiwidutch)

(photograph © Kiwidutch)

It’s time for a small update on the recovery process of my foot after my fall on stairs two years ago.

I now know that dystrophia is a long slow process, that pain is unfortunately one of the primary symptoms and that there is no fast-track to full recovery.

Whilst it may look like not much has been happening in the last year or so, in fact there has been very steady progress.

I started out with no movement at all from the top of my ankle downwards and not being allowed to stand on it at all, to being able to stand on the the heel and almost centre part of my foot, with only my toes and the area around the ball of my foot still  “stuck”. (the circled area in the photo)

Of course this means that the final part of the natural walking “step” can  still not be made, but I’ve  progressed to walking with one crutch instead of two, at least on flat surfaces.

I’ve included an edited photo to show you how things look at present. The red lines indicate the curve that the inside of the foot should take, clearly bits still stick out a bit too much on the left foot. When the ball of the foot becomes functional again the section just below it will start to support the bones as they should and then the idea is that the protruding bits should start to move back into place.

(photograph © Kiwidutch)

(photograph © Kiwidutch)

The Specialist says that the bad news is that there is no fast route to this happening… and warned me it could take years.  Pain is one of the primary symptoms so physio is a very fine line between working though the pain but not ignoring the fact that pain is also a signal from the body that a limit has been reached and manipulation should stop.

I have a new respect for people with permanent disabilities, the hassle of constant niggling pain is more than annoying, sometimes it’s like a low level headache and sometimes it’s like sharp needles. Needless to say Physio is a tough workout and strong painkillers, rest (elevations) and ice packs are the order of the day afterwards.

A recent assessment puts things at 70% recovery and we are aiming for 90%. Once we reach this, then every percentage point after that will be a bonus. Predictions are also that I might be driving again around March some time, but in the meantime my company pays a taxi  to and from work and since a few weeks I’m also working part-time from home.

Life is literally about putting your best foot forward, it’s about counting our blessings too. One foot might present a lot of limitation at the moment, but there are some people who would give anything just to have legs.  I accept  the reality that I have good days and bad days, that if I push to physically do a lot on one day then I will have to suffer for it for up to three days afterwards: but is that an excuse to “not bother to do much”? No.

We each have an allotted “allocation” of days on this mortal coil, and no-one know how any days they will get. The wisest thing to do is to use these days as wisely as you can, making the best of the lumps and bumps that life gives you and appreciating and understanding that what might be one of life’s valley’s is at least…. not a crevasse.

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