My MRI Scan - What Rot! Cont.

The story of my attempt to gain access to my MRI and CT scans continues.

I do at least know have copies of both and that is where it is stalled.

I have put a redacted MRI image on the side bar of my blog site, but if you are reading this you have probably already seen it.

So here is part two of the story.

But first a quick summary of events so far (for a more detailed account see previous post - My MRI Scan - What Rot!). As is my legal right I requested copies of the MRI and CT scans that I had taken when I was in hospital after my last Stroke (see posts - Hospital - Admission, Hospital - Inpatient and Hospital Discharge) only to be told that it was impossible as I had AppleMac computers.

The answer to the question I posed at the end of my first post on this subject is - A Long Time.

In early April 2016 NH the RIS Co-ordinator at the hospital informed me that she was looking into the matter with the intention of getting the scans to me as soon as possible. 

On the 29^th of  April I received an email from her in which she confirmed the results of her investigations were that there was no software that would allow Mac users to view the scans as they could in hospital. She did however assure me that she could provide a disc with JPEG images on but as it would have to be unencrypted I would have to go to the Radiology Department to pick it up personally. She also said that if this was acceptable to me she would go ahead and would let me know when the disc was ready.

On the 3^rd of May I replied that I was happy that NH had found way round the issue and asked if it would be possible to email the images to me.

I waited.

On the 27^th of May I decided that the waiting had gone on long enough so sent another email to NH which I copied into SK (Patient Administrator), in which I asked if she had an answer to my question about emailing the images to me. Within moments I received n automatic response from NH telling me that she was not checking her emails “on a regular basis”. Twenty minutes later I received a reply from SK In which she claimed to have sent me two emails during May, one on the 11^th and the other on the 12^th. SK confirmed that she had agreed with NH that she would produce an unencrypted disc and if I was happy she would post it out recorded delivery. I sent a reply thanking her and giving my permission.

I expected an another disc to be winging its way to me by in the very near future.

On the 10^th of June I got tired of waiting.

It had been more than six months since my first contact with the hospital and I have to say that I was frustrated and perhaps a little angry.

I asked for the telephone number of the Cheif Executive Officer. Within moments I found myself talking the to a lady called RT who was actually the PA to the Chairman but was covering for the Chief Executive’s PA while she was on holiday. I told her my story and she promised to look into it and get back to me. A few minutes later she was back on the phone when she told me that she was asking the head of IT, a gentleman by the name of MS, to look into the issue and almost immediately I received a copy of an email that she had sent. Hot on the heel of this one an automatic reply landed in my inbox which indicated that MS was out of the office. As there were contact details for MS I dialled the number. The phone was answered by a member of his team who listened while I went through my story again. The young man who told his name was PT agreed that the software for scans was not compatible with AppleMacs but that it should be easy to find a way round the problem. He left me with the promise that he would get back to me.

Again I prepared to wait but this time is was only that afternoon when I got a phone call from PT telling me that he had Flash Drive containing JPEG images of both my CT and MRI scan and asked me what I wanted him to do with it.

The Partner hand Step-daughter where on holiday in Corfu and I was fairly sure that work would be quiet on the Monday so I asked if it was possible for me to pick it up in person. He agreed that it should be possible but he would leave it for SK to make the arraignments. Not long after that call ended SK was on the line confirming that she could leave the Flash Drive with reception for me to collect. She did tell me that as it contain private information I would have to provide a form of identity.

On the Monday I made sure that I had my laptop with me and after making a few deliveries I made my way to the Hospital. When I gave the receptionist my name and told that I was expecting a packet to be waiting for me she dug out a white DL envelope which she handed to me after I had shown her my Driving Licence. Taking my laptop and the packet to a table in a small cafe area near by I got myself a coffee and them ripped open the envelope and emptied the black Flash Drive into my hand. Inserting it in to one of the two USB slots of my laptop I was not surprised to see a window open asking for a code to be entered, even though SK had told me that it would be unencrypted. Taking the letter I received with the first PC disc I entered the code that was printed at the bottom of the page. To my irritation it had no effect. I phoned PT from IT who confirmed that he had used the same code as had been used on the first CD. When I read the him the code as it appeared on the letter he told me it was a digit short. When I inserted the now complete code the Flash Drive sprang open to reveal two folders: one labeled CT Scan which contained 345 images and the other called MRI Scan with 623 images.

When I called SK to thank her she told me that she was pleased to finally completed my request even if it was a long way outside the 40 days that the government tells organisations have to do so. She also told me that the only reason it had been resolved so rapidly was because I had gone to the CEO!

HOW SAD IS THAT?

So now I had the images that I wanted.

All I needed now was someone to interpret them for me!

The story continues ………

You can't get New Deficiencies!

All the medical advice is that the deficiencies you are left with after your Stroke are the only ones you will have.

While I of course bow to their greater knowledge as Medical Professional, I am not sure that I believe them, or should I say that it does not feel like that when you have had a Stroke.

I have talked at some length to other Survivors about this and there is some agreement that the advice is, if not wrong, at least miss leading.

I am sure that the medics will be able to state huge volumes of evidence that would support their assertion but I would tell them that is not how it feels.

When days, weeks or even months after your Stroke you come across new things that you cannot do it sure as hell feels like you have a new deficiency!

Of course, I fully understand how this difference of understanding comes about. When you have survived a Stroke regardless of the number or range of deficiencies you have been left with the thing that you do is to rest. This period of reduced activity can often be an extended one. It is only as you begin to feel better does one a little more.

I know that I was very lucky to have the small number and limited range of deficiencies that I was left with I am also typical of a large number of Stroke Survivors. I cannot and nor would I ever dream of  making statements about what it is like to deal with more severe deficiencies.

I also know that the brain begins the task of rerouting almost immediately just as I also know that it can take a very long time. It is only as a Survivor regains a measure of physical strength together with emotional and physiological stability that he or she begins to attempt to do more of the things they were capable of before their Stroke.

So to take my case as an example: in the weeks after I came out of hospital I did very little physically. It is true that I did repaint the kitchen (see previous post Painting the Kitchen) but I was able to take my time, which I certainly did. Whenever I felt tired I rested. The other difference was that it did not involve very much of what I call “high end fine motor skills”. It is also probably true that when doing the kitchen I grew tired before I needed to use those particular elements of my muscle control. Whereas when I was in the Alps attempting to Ski and Ten-pen Bowl the activities themselves demanded that I use them. In both instances it was the inability to push to the outer edge of the natural arc on the right that caused the problem. This meant that when skiing I was able to move my right leg as it swung round the hip but when it came to pressure on the outer edge of that swing as is necessary when trying to turn or come to a stop it proved totally ineffective, with the result that I could not turn or stop: both of which are vitally important when skiing. The same thing happened when Ten-pin Bowling. I knew that my usual choice of Ball was heavier than I could manage so I was more than prepared to use a less heavy one. I could go through the same motions that I had always done, with the same movement toward the toward the line, with the same back lift of the ball, the same bend and movement of the right leg behind the left to clear the right hip out of the way and a reasonable swing and follow through. So, prior to letting the Ball go everything seemed fine, or at least not too bad. Then I let the ball go! The result of which was not at all what I wanted, expected or even hoped for. The first ball barely reached halfway before dropping into the lefthand Gutter. The second made it a little farther but still rolled disconsolately past the still standing Pins. No matter how hard I tried most Balls ended with the same result. I tried everything I could think of: changing my angle of approach to the line; a faster approach; a faster, heavier swing. Generally the only result was that the ball got a yard or two more before heading inexorably for the Gutter. Every so often I did manage to get the Ball all the to the waiting Pins and on one memorable occasion even registered a Spare. I had no idea how and I am sure it was more by luck than judgement. Whatever the combination of factors that enabled it to be achieved I certainly was unable to duplicate them except on rare occasions.

I am convinced that the story I have detailed here is not a new one and I am just as sure that I am not the only Stroke Survivor to have had similar experiences and felt the same range of emotions. I express that level of surity because I have been told so by other Stroke Survivors. One story in particular springs to mind, which is not easy what with my memory. A Stroke Survivor that I know who is a little older than me and had his Stroke after my last one found that he had lost the ability to carryout one of his most beloved hobbies. He was a Calligrapher. A few weeks after his Stroke he felt ready to return to something that had given him uncounted hours of pleasure in the past. I can only imagine the distress he felt when he found the ability to maintain the high level of fine control in his arm and hand to produce the work he had been used to had deserted him. Speaking to him in the months since he has yet to regain his previous abilities.

My plea to medical professional of all types is could you please stop peddling the story that the deficiencies you are left with after your Stroke are the only ones you have. As I have already said I am very well aware that you are technically correct but believe me when I say that coming across a deficiency that you did not know you had feels emotionally and psychotically like a new one!

That being the case to all intense and purposes they ARE new ones.

Having accepted that very simple logic I have one further request but this one is aimed at both health professionals as well as the numerous support groups.

TELL US ABOUT THE PHENOMENON and do so right at the beginning!

Holiday in the Alps

We were on the way to the French Alps where the step-daughter and her boyfriend were doing a ski season. This is the trip that we should have been making six weeks earlier had the last of my Strokes not got in the way. We were taking it as the earliest opportunity after my six week flying ban was up.

Despite the poor start (see previous posts Consultant’s Outpatient Appointment and It felt like I’d had another Stroke) we made it to Manchester Airport for the flight to Chambéry. When originally planning the trip it had seemed like fun to fly to an airport that we had not been to recently and to transfer from there to the slopes using a bus rather than hiring a car or getting a taxi. The fun and games began immediately as the coach we were expecting did not arrive, but we eventually made it on to another and headed for the snow. Chugging through the french countryside I was able to snatch elements of  the 6 Nations Rugby match between England and France on the mobile phone. England had a chance of claiming the championship but fell 6 points short in winning 55 − 35, giving the title to Ireland.

We had to change busies for the run up the hill, finally being dropped in the underground car park below our apartment block after dark, Dragging our selfs and our luggage up stairs we found a fairly bog standard single bedroom ski apartment. In fact it was really just a corridor ending in a lounge / kitchenette with a small bedroom and even smaller bathroom off it and obviously not designed to spend much time in. After visiting the nearest supermarket for a few odds and ends we settled down to await a visitation from the step-daughter and her boyfriend.

On this day of travelling I took my first Blood Pressure measurement at 08:00 (145/92) prior to heading to the airport. The second reading was not until just after landing at 18:00 (local time) (183/97) with a third when we got up the hill and after a little food and vino at 22:00 (131/74) and a finale one just prior to doing to bed at 23:00 (126/71).

The first full day up the mountain, Sunday 22^nd March, dawned bright and crisp, just as you would hope. My 08:00 reading was 139/86. The Step-daughter and boyfriend were working so the partner and I wondered down to the ski hire shop to equip ourselves after which I took my BP (13:00 - 158/92). We spent the rest of day getting to know our little resort and the main one a short cable car ride down the valley, both of which were purpose built. With dusk having fallen I took my BP again (18:00 − 163/100) and then we made our way to the hotel where the kids worked arriving just in time for them to come off duty and for us all to go to dinner. My BP prior to bed at 22:00 was 158/87.

The Monday was not a great a day weather wise so we spent the time waiting for the kids to come off duty getting to know pottering around the resort. As is often the case in French purpose built ski resorts there is not much to do for the non-skier. My partner and I are vastly different skiers. She has skied since childhood, I have not. She has done everything including Black runs and Off-Piste, I have not. I am happy tootling around Green runs with perhaps a dash of Blue with plenty of coffee and Brandy stops, she is not. Sitting in the cramped apartment my partner told me that she was having real doubts about skiing, so much so that she was thinking of handing back her skis. A couple hours of talking and tears later she decided that for the sake of the kids she would give it a go. We met the people in question for lunch and they came to ours for dinner and stayed the night. I only took three BP readings 09:00 (151/91), 18:00 (168/97) and 22:00 (139/82).

The next day, Tuesday 24^th, the holiday really began to go wrong. The partner and I took to our skis. Things did not go well. I really struggled. I have never been the most competent with planks of wood strapped to my feet and it usually takes me a little while to get the snow legs working but I generally find a way of getting by and always enjoy myself: this felt different and I called it a day early. It appeared that while I could move my skis into the correct position I was unable to put any real pressure down through my right leg with that result that turning was next to impossible and the only way to stop, even in the Snowplough, was to fall over. My BP readings for the day were as follows 08:00 - 150/84, 14:00 - 158/95. 18:00 - 168/104 and 22:00 - 153/81.

Wednesday 25^th was when the wheels really fell of the holiday. In the evening it was decided to have a family game of Ten-pin Bowling. With previous experience suggesting that I have a couple of "Strikes" and a few "Spares" each game so I was not prepared for ball to barley reach halfway before flopping tiredly into the gutter, mostly on the left. In each of the two games I struggled to reach 50 points. My co-competitors seemed either oblivious to or did not appreciate the physical difficulty I was in and certainly not the psychological turmoil I was suffering.


Over the remaining days of the holiday I did try skiing again, without much improvement. The only place I seemed able to have any control was on the flattest and shortest of nursery slopes, the one with a Carpet Lift and usually used by real beginners and toddlers. This was no fun, even for me. My BP followed a similar pattern all week.


The tiredness got worse as the days passed and culminated in me being unable to finish the meal that we were all having on the Thursday evening which was the last that the kids were able to spend with us as they were working late on the friday. The partner was less than impressed when I made my excesses and headed for the apartment, even though it was only 21:00. She did accompany me on the dark icy journey back to the flat but her mood matched the temperatures outside. She was very angry that I had “ruined” the meal with the step-daughter and her boyfriend and after telling me off again as I prepared for bed she left me alone and returned to continue the meal.