Janet Posted March 31, 2011 Share Posted March 31, 2011 (edited) Pain Management Programme For those of you who are not aware I have suffered with extreme nerve pain constantly since my SAH/Craniotomy. Despite being referred back to my Neurosurgeon at least 3 times it was only on my last visit to him about the 3 year mark that he admitted that the pain is most likely being caused by a trapped nerve and that the clip he has fitted is not compatible with MRI so there is no way of telling if this is the case so he basically told me to learn to live with it. Not being aware that the Walton Centre has one of the best Pain Management Clinics in the world I was not offered a referral by my Neurosurgeon, it was quite by accident that I found out about the courses run by the Pain Management Centre. So the beginning of last year I got my G.P to send a referral but it was addressed wrongly and sent to my Nuero team who would not forward it to the right department. Back to the G.P in July giving them the right mailing direction it took til Xmas before they contacted my G.P and sent information through for me look at. I finally heard off them last week and had an Assessment day today. I have been accepted onto a five day programme which is 1 day a week for 5 weeks and should take place July/August. The assessment involved lots of form filling with repetitive questions I then got assessed by the Team a Consultant in Pain, Occupational Therapist, Physiotherapist and Nueropsychologist. Apparently my case is very unusual as they normally treat most people for back/neck pain and connected problems. I was completely honest about not really needing physiotherapy as I am quite fit and mobile but stressed the fact that psychologically I need to learn better coping techniques and relaxation methods as well as learning to manage my pain and the anxiety it can still cause. I will update everyone once I have completed the course and let you know if it improves the quality of my life. Oops forgot the important bit the goals of the programme:- to increase activity levels using pacing methods to learn more about the nature of pain and its effects to reduce my dependence on other people.....Morris might be glad of this one to reduce my dependence on medication.......please to reduce the distress caused by pain Edited March 31, 2011 by Janet Quote Link to comment Share on other sites More sharing options...
Skippy Posted March 31, 2011 Share Posted March 31, 2011 Hi Jan That's brilliant news -hope it all works for you cos I know you've been in constant pain. See you soon Quote Link to comment Share on other sites More sharing options...
maggie Posted March 31, 2011 Share Posted March 31, 2011 Janet excellent news,really long over due but at long last your moving forward. I can feel your relief from here! Sometimes we have to fight for our rights and you have done just that and by getting heard and noticed you will have paved the way for others who like you have had sever pain to cope with for far too long! Quote Link to comment Share on other sites More sharing options...
Gill C Posted March 31, 2011 Share Posted March 31, 2011 Janet fingers crossed it works for you. I attend headway with someone who suffers constant pain & he has attended a pain clinic which I think he found useful. Anything that improve your quality of life has to be worthwhile?? Quote Link to comment Share on other sites More sharing options...
Karen Posted March 31, 2011 Share Posted March 31, 2011 Good luck Janet and I'm so glad that you're finally getting the help that you need .... xx Quote Link to comment Share on other sites More sharing options...
karen78 Posted March 31, 2011 Share Posted March 31, 2011 xxx Hope it works or at-least helps xx Quote Link to comment Share on other sites More sharing options...
jess Posted March 31, 2011 Share Posted March 31, 2011 Janet really hope it works for you. Jess.xxx Quote Link to comment Share on other sites More sharing options...
FionaH Posted March 31, 2011 Share Posted March 31, 2011 Fingers crossed for you, constant pain is so draining (I suffer from it relating to my joints not SAH) and it sounds like it's been a difficult journey to get this far for you x Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted April 1, 2011 Share Posted April 1, 2011 Hi Janet, I look forward to hearing what you think of it. This has been suggested to me too but at the moment I am totally sick of one appointment after another (both for myself and now for my son). However if you find it really helpful I might change my mind and give it a go! Good luck Michelle x Quote Link to comment Share on other sites More sharing options...
RB-R Posted April 1, 2011 Share Posted April 1, 2011 I really hope it works for you Janet as living with pain everyday for three years is no joke!! Glad you never gave up Take care and keep us updated Rhiann x Quote Link to comment Share on other sites More sharing options...
bogbrush Posted April 1, 2011 Share Posted April 1, 2011 Hi Janet, I hope it all works out for you and you can get some relief from the pain xx Quote Link to comment Share on other sites More sharing options...
Louise Posted April 1, 2011 Share Posted April 1, 2011 Hi Janet Thats great news light at the end of the tunnel honey.... Quote Link to comment Share on other sites More sharing options...
Tina Posted April 1, 2011 Share Posted April 1, 2011 Hi Janet really hope it helps you...take care love Tina xx Quote Link to comment Share on other sites More sharing options...
JayKay Posted April 1, 2011 Share Posted April 1, 2011 Oh Janet, that must be awful, living with pain like that I'm so sorry you have this side-effect from your surgery. I really hope the pain clinic works for you. Take care! Quote Link to comment Share on other sites More sharing options...
Vivien Posted April 3, 2011 Share Posted April 3, 2011 Hi Janet, sorry to hear that you are in so much pain after all this time. I have constant pain which is a result of my having dystonia, not related to my SAH, I was diagnosed with dystonia about 15 years ago ( I can't remember exactly ) I attended a pain management course a few years ago and found it really helpful, I still have the pain, but I have learned to live with it, not fight against it.There were people there with all sorts of problems, one guy had had a stroke, another had been in a motor accident, and a few with bad backs Did you know that you can get accupuncture on the NHS? I found that helpful as well,( not sure how having needles stuck in you helps with pain but it does!) I also had counselling. I think we each have to find our own way of living with it, and as with an SAH it does become easier with time. Hope this helps. Vivien x Quote Link to comment Share on other sites More sharing options...
Janet Posted August 6, 2011 Author Share Posted August 6, 2011 Hi all not been around much lately life has been busy and new working hours are not really suiting me have a feeling me and my job may be parting company soon. I have now completed 2 days of my pain management programme (pmp) very hard going lots of information to take on board and loads of homework because its only one full day a week for 5 weeks. The pmp exercises are easy to do but they make us spend an hour in the gym. We have talks from a Psychologist every week and a different specialist pops in each week. We had a Pain Consultant in last week who prescribed reducing pain relief when possible for better effect when the pain is worse. The sessions I find most useful are similar to meditation but we are not being taught how to ignore the pain but how to acknowledge it properly and move on from it by completing various breathing exercises and performing a full body scan that last about 40 minutes so far have managed to stay awake......as snoring not allowed Will post a bit more when the course finishes and if anyone would like a copy of the pmp exercises would be happy to photocopy it and pass it on......when I find it left at the hospital last week Quote Link to comment Share on other sites More sharing options...
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