I went for my six monthly appointment with Professor Nurmikko today 7th June at the Walton Centre. He has invited me to take part in a research project called Trans cranial magnetic stimulation (TMS)...... TMS is a painless way to 'switch on' very small parts of the brain by a magnetic pulse. It all gets a bit technical but I have been given a three page document telling me all about it. One of the problems is that I will have to travel to Walton for 2 days a week for 3 weeks. I will talk to my GP (Dr Mulla) about it and try to arrive at a decision. I have already had a brain scan in advance of the treatment. The scan said my brain was normal. (My wife Anne said they must have had someone else,s)
Have decided to go ahead ... start on Wednesday 30th June 10am
9th July 2010
Had two sessions now. First session mapping my brain ..... see pics. Second session was the actual TMS yesterday.... actually totally relieved pain in left leg. Unfortunately by the time I got to the next session the pain had returned.
However, I think that I am getting ahead of myself. It is now the 17th July and perhaps it would be easier to just write about the sessions rather than do a diary. I already do a daily pain diary which I complete each night before going to bed. Dr. Paul Sacco does the sessions and he makes really good coffee. Apart from being a good coffee maker Dr. Sacco is a neurophysiologist.
OK then back to:
Mapping my Brain:
The first session was really to find out which part of my brain needed stimulating by the electric magnets and that is basically what the orange dots are about on the pictures of my brain. For this I sat in a 'dentist' chair' had glasses put so infrared can let Dr Sacco know if I move my head. The magnets were put on my head and when they were switch on I heard a clicking noise but felt nothing. This happened on several occasions with breaks of 30 seconds or so in between.. In identifying the places needing to be stimulated first of all Dr Sacco showed me all the different areas of my brain that operated the several parts of my body (it was absolutely fascinating). Then he attempted to stimulate those parts with the magnets. First of all he made my right hand twitch and then my left. He then tried to do the same with my feet. No success with my right foot but fascinatingly when he tried to stimulate my left foot (again with the magnets) my right hand twitched again. The Dr. was excited about this and said that he had identified a problem which may been causing my pain but certainly the area which he would concentrate stimulus (or is it stimuli :) ) on.
However, I have moved on too fast and should first have mentioned the:
Sensory Tests:
I should have mentioned that firstly I had sensory tests which all diabetics will be used to. Touching little brushes and pins on my skin with me saying how many times touched. Then I had tests to see if I could feel hot and cold. This was interesting as in the main I did identify the different heats but at different strengths. I did not though feel the cold on my right leg.
All in all so far it has been absolutely fascinating (I nearly said fabulous but that would be stretching it)
TMS itself
I've done all that rabbiting but have not really mentioned the T.M.S itself. Well first of all the reason I have had this is as a result of the pain that was left after the removal of Fistulas from my spinal cord. I have been on many tablets which did reduce the level of pain quite a lot but Professor Nurmiko thought I would be a good candidate for the trial.
The T.M.S. had me wearing some special glasses as already mentioned then the magnets were placed on my head and the stimulation started directed at the points identified from the previous procedures. Dr Sacco did it in short bursts (I was in the dentist chair which is one of the most comfortable chairs I have sat in. I would have gone to sleep except I was finding the whole process fascinating.) for about 20 minutes pausing to ask what I felt.
I did feel my right calf and shin area go cold and at the first session was actually free from pain (this lasted a day)
in my left leg ....amazing.
One side effect has been that after the first session I felt extremely tired.
I do have difficulty completing the pain diary.... not really sure how to recognise the relativity of pain (if you can understand that )
watch this space
21st July 2010
Had a session today ... felt warm and cold sensations in right leg and pain seems to be less in left leg. I should have said that the T.M.S. is just the same as the mapping (at least to the patient). The magnets on head and it is done is short bursts felling nothing on head apart from hearing clicking noises. I took my camera today and had some pics taken. The guy holding the magnets is Dr Paul Sacco. You can see my brain on the computer screen in the left side....this was done under MRI several months ago.
31st July 2010
I am to go again on Friday 13th August for a repeat T.M.S. and sensory test.
There is a very handy car park which charges £2 unfortunately my blue badge isn't accepted there.
29th September 2010
I had a break from TMS (3 weeks) and in that time the pain came back. (no flashes) . I did though have a holiday which involved some driving but more importantly I was out of my own bed (electric) which always causes back problems which leads to sleep problems and lack of sleep means more pain in legs.
However last week I did have some TMS which again has helped my left leg and to some extent my right leg.
I believe BBC2 are interested in the procedure for their Horizon programme.
Next time I go to see Dr. Sacco I am having my brain mapped again to see if he can help with my right side.
Saturday 1st October 2010
Last Wednesday I went to Walton and Dr Sacco did a further brain mapping session. This proved to be really interesting. Apparently my brain is working in an unexpected way (rather like the incredible hulks:) ). It seems that the part of my brain that is activated when I am supposed to be thinking about doing something is actually doing it, or something like that.
However, that evening things went a bit awry. My right leg started to receive quite sharp pain flashes and at times felt as though they were against an open fire.Then I had static pain. Worst of all I went into a deep depression. Anyway I went to bed and in the morning all was restored to normal.
I reported the situation to Dr Sacco and he seemed quite concerned as did Professor Nurmico. The Prof contacted France who said that the pain would prob. be only temporary. It was so no need for any concern. I thought it good that it had produced a reaction as that would mean they had something to work on.
20th November 2010
I'm still going for T.M.S. and have to say it has been of real benefit to me. The bad reaction described last time is not happening. I am now in far less pain than when I started. No more flashes of pain either. But I do have to go for boosters.
Having said that I do get very painful flashes of pain in my feet at night which are quite a recent event. They are at a pain level of 8 out of 10 and wake me up.
One day it won't be available on the N.H.S. and so I suppose that the pain will return!
The B.B.C. thought that I was too old for their programme would you believe. Once more the B.B.C. is being ageist.
Anyway I look forward to more developments........ watch this space.
19th January 2011
A month ago I went for T.M.S and my pain had really increased. Prof. Nurmiko was there and he said that he would refer me to Mr Piggott for an M.R.I.
Two weeks later the pain became unbearable and my GP Dr Mulla put me on pain patches.
Had an interesting session today. I was on pain patches and the T.M.S. reduced the pain in my left leg to nil pain in right leg from 3-5.
I also was filmed and interviewed having my treatment for a DVD being made for a presentation at the Liverpool Town Hall when the Pain Foundation is to be given Freedom of the City award for all that it has down for the relief of pain. Which is of course well deserved. I have received so much help and don't know how I would manage without them.
My mobility ar present is not good at all. I can hardly walk and lose my balance so easily, I really hope the MRI will happen soon then we can move on to finding what the present problem is.
Had a fall on 21st Jan.
23.01.11
A Letter to those without Chronic Pain
In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.
Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely
coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.
Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous
Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.
Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous
commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
Author - Anonymous.
25th January 2011
The Pain Patches seem to be doing their job but I hope that Mr Piggot the surgeon soon arranges for the MRI as the uncertainty is wearing me down.
11th February2011
Talking about pain I had a really bad fall today and my ribs are still hurting like mad!!!! 25th January 2011
The Pain Patches seem to be doing their job but I hope that Mr Piggot the surgeon soon arranges for the MRI as the uncertainty is wearing me down.
11th February2011
24th May 2011
Unfortunately the fall mentioned above led to more ill health..... I got water in lungs and was sent to A & E by doc.... there I was diagnosed with heart failure and spent a fortnight in hospital.
Then I went on Warfarin.
At the end of last month the pain became so intense that I took an overdose... unfortunately I didn't take enough and ended in a Psychiatric unit which was absolute hell. I am complaining to the chief exec and a copy of letter will be put on my blog.
Revd D Wesley Fairhurst
‘Fairyland’
Merseyside
PR9 9UR
Tel: 01704 226392
E-mail:revwfairhurst@live.co.uk
25th May 2011
Mr. Alan Yates
Trust Headquarters and Chief Executive's Office
Mersey Care NHS Trust
8 Princes Parade
Princes Dock
St Nicholas Place
Liverpool
L3 1DL
Mersey Care NHS Trust
8 Princes Parade
Princes Dock
St Nicholas Place
Liverpool
L3 1DL
I am writing to make a formal complaint against the set up of the Hesketh Centre and the members of staff who were responsible for my treatment. I regret that I feel it necessary to make this complaint as the circumstances that led to my stay at the Centre were self inflicted. However complain I must.
On 30th May 2011 I took an overdose of Temazepam and Diazepam from a ‘stash’ that I had collected over many years. Whilst I was in the superb observation unit at Southport Hospital a man from the Psychiatric Department came to see me and said would I like to stay in a ‘nice two bedded ward in the Hesketh Centre where doctors etc would come to see me.’ I said I would as long as I was not on the main ward. I always understood this to be voluntary.
At this stage I should mention that I am in continual pain all the time and am severely disabled. This of course was known before I left Southport Hospital. There are no facilities for the disabled and so I had great difficulty getting around. I was shown one toilet which had a drop down handle and that was all. I went to it and it was full of excrement. Later on in the week that toilet was closed. The other toilets were not clean to say the least. I have photos of them on my camera but don’t know how to retrieve them.
Yes the lack of facilities for the disabled at the Hesketh Centre is wicked and I will be taking this up elsewhere. I normally travel around on a scooter but didn’t have it there.
When I arrived at the ward in the Hesketh Centre I was very quickly bundled out onto the main ward as they could not deal with my disability on that ward. I was sat and left in the dining room on a very uncomfortable chair for my condition. After some time a so called nurse called Des came to speak to me. I explained to him that I felt that I had been brought there under false pretences and as I was there voluntarily I was going home. He became very angry and said that there was no way I would be going home until I told them where my ‘stash’ was and let them have it’. I said he couldn’t stop me. He said he would use the mental health act against me. We then had a row during which I said ‘that I was being kept there against my will and would sue for false imprisonment’. He laughed at that and said that I would be sectioned.
Later on three nurses came to talk to me in my awful bedroom again about the stash. We had a massive row, well they did with me I was just insistent that I was being held illegally. At one time someone mentioned ECT as a threat but this held no fear for me as I have already benefitted from such treatment. In the end they just walked out of the room. Des really got bad tempered causing me some fear.
I had a nice tea and then saw a doctor who asked the same old questions (I have been treated for clinical depression for years but this in fact was reactive depression). In fact it wasn’t depression at all it was as a result of intense chronic pain.
I asked for my mobile phone to be charged and a nurse I think called Bradley (he was helpful) took it away. Later I was told that I could not have it back (seemed like some kind of punishment). However I went to the office later and asked someone who hadn’t met me before and asked for the phone to be returned and it was. (what was going on there). Whilst I didn’t have a phone I used the public phone provided to ring a clergy friend to tell him of my false imprisonment. I was on the phone to him in Wales for some time but could not complete the call because the phone was in a corridor (where everyone could here) and I had to stand up, there being no seating facilities.
Later that day I was sitting in a room on my own and was crying, I was really upset. A nurse very kindly came to talk to me and she was helping. Then she noticed that I had some chewing gum on my hand (picked up from the unhygienic conditions of the place) and said that she would go for a wet wipe. She never came back. Of course I could deal with the chewing gum myself. But she never came back. Later I found out that she had gone home. That was an example of the lack of care in the place.
There were many examples of this, another one was when one day I overslept and missed breakfast. This is the conversation I had with a nurse:
ME :‘Am I too late for breakfast?’
Nurse: ‘Its 8.45’
Me:’Is that a no?’
Nurse: ‘It is quarter to nine’
Me: ‘Is that a no?’
Nurse:’The Trolleys gone’
Me: ‘I am a diabetic ‘(which of course she should have known)
Nurse:’I’ll get you some cereal’
Her attitude to me was one of treating me like rubbish.
All in all it was like living in purgatory staying at the Hesketh Centre. I hope you are able to deal with this complaint with some sympathy to the staff as I know some patients can be extremely difficult to deal with as I once Chaplain of Cheadle Royal Psychiatric Hospital. Just on that matter I asked to go to church on the Sunday and was told that I couldn’t even though I know other patients were going. They also said that there was no Chaplain available …that of course was nonsense!
Yours Faithfully
Revd D. Wesley Fairhurst.
P.S. I started to listen to your Podcast on your website but it was irrelevant to me as you started talking about money. Looking at the Website you can see why there is a problem with Merseycare it hard ever mentions patients.
Just to update. Since I came out of hospital for the heart failure I have kept falling asleep. I had my MRI on 7th June ...didn't show anything different in my spine. I saw Professor Nurmicco and asked if pain killers could be reduced. We decided to have an experiment...pain killers reduced made no difference to pain and also made me more alert.
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