REQUEST FOR HELP - PLEASE READ
The Canterbury CTS clinic is thinking of trying to obtain funding for a large prospective trial of treatment in CTS. We wish to study the effectiveness, safety and economics of repeated steroid injection as a treatment. Several of you have chosen this approach to treatment anyway, despite the lack of hard scientific evidence to support it. As part of a research proposal we need patient input into the design and conduct of the trial. I would therefore like a small panel of patient volunteers who have CTS and who would be able to spare time to assist in the design of a trial by attending a planning meeting or two and reviewing documents from a patient perspective. You would not be participating in the trial itself as patients - simply helping to design it. If anyone is willing to assist please reply to this message. JB
I would be willing to help but have had a number of injections and then opted for surgery so I'm not sure if I would be an appropriate person!
I'll leave you to decide.
If I can be of any assistance, it would be a pleasure to help. Only around till April 2015 then on holiday.
Thankyou very much. I'll add you to the panel. I think we will have something to discuss during January. JB
I would be happy to help. I will be hopefully seeing you soon as my symptoms have worsened and not sure the injections are appropriate anymore. Lyn
Hello Dr Bland,
I will help if I can but due to working 6 days a week will probably only be able to offer very small amount of my time if any at all. I am currently experiencing pain and numbness in my right hand..... ... I have had 2 successful injections in the last couple of years with you. Would there be a chance of fitting me in this week w/c 16th Feb for. another? as causing me pain and numbness every day and night at the moment.
Kind regards
Louise Wynne
We can re-inject for you tomorrow (Wed) if you would like to drop in during the afternoon. At some point however we should also test you again to make sure that the nerve is not deteriorating too much. JB
Hello Dr Bland,
I would be willing to help if I can but due to working will only be able to offer very small amount of my time in person, however more than happy to help with documents via e mail if appropriate. I am currently experiencing severe night time pain in my left hand. I have had several successful injections in both hands over recent years . Would there be a chance of referring me back to Dr Brown at Estuary View (he has done all but one of my injections) hopefully for an injection this week for. another? Not sure if you need to re test as the pain this time seems much worse than before.
Hi Doctor Bland,
I first came to your clinic in May last year and was diagnosed with CTS in both hands. I had my left hand operated on in Herne Bay in June of last year and subsequently came in to see Emma and had a steroid injection in my right hand four days after my surgery. The surgery has proved to be a great success and I no longer suffer with symptoms in my left hand. The steroid injection was pain free and I did notice an improvement in my right hand afterwards, however I am now once again experiencing symptoms once again in my right hand and will be once again attending your clinic tomorrow in Canterbury. If my experience could be of any help then I would be happy to be involved in the trial
Kind Regards
Lisa
Thankyou very much. Just to keep the people who have been kind enough to respond, and some of whom have already read through an early proposal document for the trial, the timescale over which a large trial such as this is proposed, worked up and costed, subitted to funding bodies, regulated, approved and started is extremely prolonged. At the moment we are hoping to submit an "expression of interest" to a funding body in May - who may or may not invite us to submit a full proposal some months later. In the meantime I would encourage all of you to post comments in this thread. One of the criteria by which we are judged is "PPI" - patient/public involvement - and the more say you the patients are seen to have had in choosing the research topic and planning the conduct of the study the better.
At the moment the principal question we are being asked relates to how many people would be willing to partipate in the trial as we are currently intending to structure it. There are three obvious models for a study comparing steroid injection with surgery:
1) Take patients with newly diagnosed CTS and randomly allocate them to either injection or surgery as first line treatment
2) Our current proposal - take patients with newly diagnosed CTS and randomly divide them into two groups. Group 1 would have one injection only and if they relapsed after that would proceed to surgery (If they declined surgery and insisted on another injection they would be considered as having not followed the trial protocol). Group 2 would also have the same initial injection but if they relapsed would have the choice of either another injection or surgery. On subsequent relapses they would have the same choice each time.
3) A variation which has been quite strongly suggested by some people we have consulted. Start not with newly diagnosed CTS patients but with subjects who have already had one injection and relapsed. Randomly allocate these patients to either injection or surgery. Again the injected group would have the option of using further injections on subsequent relapses.
I have my own opinions on these different strategies, all of which I think have both advantages and disadvantages but I will keep quiet about my thoughts for now. I would like to know however which of the three designs you think people would be most inclined to volunteer for. JB
hi Dr Bland i had an email to get back to carpal tunnel and ,my severity results are up from the last time you saw me and am wondering if i can come back and see you also i am willing to assist in the message above look forward to hearing from you!
WHat has happened since August 14 - at that time I think Mr Smith was plannng surgery for the right side?... and thankyou for the offer of assistance we may well take you up on that but we can discuss it when we next see you. JB
Hi Dr bland, I have trialed splints on both hands at night for two weeks. During the trial neither of my hands went to sleep at night.
Having a nap during the afternoon without the splints resulted in waking up with my hands having gone to sleep. I await your comments with interest. N A
Hi
I am happy to help as I believe I am now on injection 8 or 9 and was about to ask to see you again please as the numbness and pain has returned. Please can I book an appointment . Thank you
No problem. I'll arrange an appointment and we can have a chat about the lamentable state of CTS research when you come ;-) JB
Dear Dr Bland,
If I can help at all I would be willing, however due to work commitments I would find it difficult to attend any meetings unless they were scheduled during school holidays! I would however be more than willing to read any documents if they could be emailed as they would make a welcome break from school planning and record keeping!
As a patient who has opted for repeated steroid injections and reaped the benefits I feel it only fair to offer my (somewhat limited) help.