annie mary

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  • in reply to: Spinal cord stimulator – questions #45898
    annie mary
    Participant

    I have been put forward to attend a multidisciplinary meeting about the possibility of a spinal cord stimulator and whether or not one would be suitable for my pain. I have started to jot down some questions to ask but i would be grateful if anyone who has been through this process could suggest things to ask based on what you asked and/or what you wish you had asked…(I hope that makes some kind of sense!) Thanks

    in reply to: Spinal cord stimulator – questions #45896
    annie mary
    Participant

    Firstly I want to apologise for not replying sooner when you have taken the time to respond to my question (Paul,Wendy,navchic)….Unfortunately I have been unwell with other health problems and then a family member has also been unwell. Thank you anyhow for your practical and honest feedback which is exactly what I was looking for. A few things have stood out to me…..
    1) it seems strange and somewhat cruel if you are being told to reduce or stop all your pain meds prior to surgery and then cope with your original pain as well as the pain from the surgery without seemingly any analgesia?….and furthermore to continue in this manner until the unit is switched on….after 2 or more weeks?…or did I read that wrong?…
    2) It seems that the info I had been reading regarding no movements must have related to surgery a good while ago because that info said the restrictions were in place for somewhere between 3 and 6 months!.
    Thanks again

    in reply to: lidocaine plasters #25645
    annie mary
    Participant

    You need to speak with your pain consultant who has the knowledge – I have taken high doses of oxycodone along with three lidocaine plasters per day (12 hours on and 12 off) for several years now. I definitely get a great deal of benefit from the plasters and notice pretty soon if I don’t put them on

    in reply to: motor cortex stimulation #32235
    annie mary
    Participant

    * Are there any things that you cannot now do or go near?
    * Is there anything else that you think I should know?

    It always helps to hear from people who have been through something similar I think, rather than Drs who you always wonder might just see you as an interesting case or piece of research!..lol.
    I dont know how common it is in the US, but I think it is pretty unusual over here as its the first I have ever heard of it. So I really appreciate any light you can shed from a patients perspective.
    Thanks 🙂

    in reply to: motor cortex stimulation #32234
    annie mary
    Participant

    I would appreciate your experience regarding;
    * what was the surgery and recovery period like?
    * how much of your hair did they shave off?
    * where is your battery sited (I have heard it goes under the collar bone?) and what does it look and feel like?
    * What is your pain control like now?
    * Can you feel anything? ( I have been told you dont feel anything, not like a scs where you feel a tingling)
    * Do you mind me asking why they made a decision to offer you this as opposed to a scs?
    * Were there any side effects e.g fitting? (continued)

    in reply to: motor cortex stimulation #32233
    annie mary
    Participant

    Hi Andy
    It is more the personal and everyday questions that I have, rather than the high tech ones, so anything that you can offer would be gratefully appreciated.
    My diagnosis is vague, cos they dont really know…but at the moment is along the lines of post viral neuralgia and/or crps. Affects the upper left quadrant, i.e left side of jaw, chest and ribs – front and back – (continued)

    in reply to: motor cortex stimulation #32230
    annie mary
    Participant

    Hi Steph – I had to google it myself after I read it in the Drs letter..lol….from what I can make out, it is similar to a spinal cord stimulator, but they insert it into your head instead, by removing part of your skull and putting a metal plate inside. I know, it sounds a bit gruesome doesnt it!!
    I may not be suitable, have to see what the consultant who my pain doc is referring me to says, but I havn’t heard anyone else mention it, so wondered if anyone had any experience with or opinions regarding it?

    in reply to: Ketamine #28801
    annie mary
    Participant

    Hi Eunan

    I had an appointment with my pain consultant last week and as a result I am starting a trial of oral ketamine next week – I was just wondering how you are getting on with your prescription and also if anyone else has started ketamine and got any experiences they could share?
    Many thanks

    in reply to: Breathing problems on long term oxycodone #29147
    annie mary
    Participant

    Oh that is so infuriating…I thought it only happened to me! Take care – hope you have an ok-ish weekend 🙂

    in reply to: Breathing problems on long term oxycodone #29144
    annie mary
    Participant

    Hi Di
    Ive been on both short and long term oxycodone for about 4 years now. I defiantely notice that I get quite bad swelling in both of my legs, but slightly worse in the left..whenever I have had a really bad time with the pain and taken quite a few breakthrough doses. Ive also had episodes where I have been short of breath when walking a distance that I am normally ok with and also, the odd few times where I have suddenly just felt like I can’t get my breathe, which as you say is pretty scary.
    I’ve read about the fact that long term opiods can increase the chance of developing heart failure….i also think, that your body can only ‘filter’, for want of a better word, so much of the medication at a time and thus when the level is increased… the kidneys can struggle and the fluid balance in your body gets out of ‘kilter’, hence the swollen lower legs and breathlessness. I suppose, given this thinking, if you are dehydrated and/or the kideys are having to filter lots of other things at the same time or a different drug e.tc e.t.c…..then they just can’t work as effectively and hence you get the same symptoms.
    Anyway, I am really interested in hearing about the new drug test your gp mentioned and what he comes up with today.
    p.s I am presuming that they have done blood tests to check your kidney function??

    in reply to: Complex Regional Pain Syndrome #28866
    annie mary
    Participant

    Hi Pamela
    Your consultant sound like a rare and fantastic find! lol…
    I would really appreciate if you could have a look and see if you can find his website – might give me some ,if nothing else, to take to my appointment – would you prefer me to email you?
    Thank you :_)

    in reply to: driving, dvla and medication #34383
    annie mary
    Participant

    Thanks Steph – I will
    I’m pleased you have managed to work out a system that works for you too 🙂

    in reply to: driving, dvla and medication #34381
    annie mary
    Participant

    part three – last one!! lol

    Outcome for me is that I am continuing to drive….on the days and times that I feel capable. My Gp is ‘happy’ that he has covered himself and will continue to assess my capability, as will my consultant.
    The whole process has probably made me an even more careful driver, which can only be good.
    I really appreciate the independance I have currently got….and also what it must be like for others who do not have this and/or have to find other ways of getting out/around

    I am hoping, I suppose, that in writing this, it gives some clarity to help any others who might be in the situation that I found myself in

    in reply to: driving, dvla and medication #34380
    annie mary
    Participant

    part 2

    My arguement and I suppose defence, throughout this was that the effect of any medication needs to be viewed from the perspective of its effect on an individual, rather than carte blanche, otherwise there are millions of people currently driving or operating machinery who should be restricted because of the possibility of, lets say drowsiness. I have a friend who is completely zonked by 1 paracetamol!

    I know this message sounds like I am angry, and I am, but not at safeguards which are essential to keep people safe…………..I think, on reflection, it was more about the way in which my GP handled it. Think was highlighted by a conversation i had with one of my Consultants who clarified the procedure for safeguarding the public, driving, medication, its effect on the individual and his assessment of me in terms of my capability…….within a few minutes of me raisng it with him – it just felt like such a contrast.

    This is a topic that raises strong emotions for many people, including myself, because of reliance upon driving for daily activities. There is a need to always however consider both the safety of the patient themselves and those around them and this must be foremost..

    continued

    in reply to: driving, dvla and medication #34379
    annie mary
    Participant

    I just wanted to let you know what happened about my driving ‘issue’……
    Well after the horrible GP appointment and 2 weeks of really feeling worried and upset, while he ‘checked things out’…..I went back to see him (he had competely forgotten and wanted to know why I wanted to see him, which didn’t help for a start!!)….anyway, I could tell from the words he used that he had been in touch with his medical defence union, which is fair enough……….gave another ‘lecture’ about the strong type and dose of medication I am on, again, fair enough…………..and then just said at the end of the day, it was down to how i felt in terms of my capability and that basically he had ‘done his bit’ by ‘warning me’ and this then being documented on my notes.
    I think he did make a comment that if I was driving a mini bus full of kids he would have been straight onto the dvla, infering that if he or any doctor had any concerns about someone’s capability or judgment to make a decision about driving and he/she felt that the patient posed a risk, then the doctor would contact the DVLA, again, which is fair enough.
    continued

Viewing 15 posts - 1 through 15 (of 21 total)