Rob

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  • in reply to: Restrictions following SCS #23151
    Rob
    Participant

    Thankyou Navchic… I siit here full of stitches with the correct device.
    I have a reluctance to post due to the site rules and hope this stays in tact and not interfered with. In answer to Senza and pregnancy the largest implanter of Nevro requires a signature that the patient wil remain on birth control after implantation. The leads you need to discuss with your hospital that implanted as depending where they are will depend on the vulnerability with activity and although this can improve with time it is a lower risk rather than no risk. SCS is an underestimated interference with life and whilst I read on sites most think its a hidden gem it is far from it. Out of warranty parts cost the patient if there are electrical faults (£850 controller..£2500- £2800 for the charger). More deception is that my new scs allows MRI BUT my lead does not creating more confusion and risk given certain circumstances. So scs is a last resort always said by the medics and rarely listened to by the pained . Good luck Navchic and hope the gailn is better than the loss. It can always be removed. No direspect annie but its not a google type subject as it is patient personal and the american sites are misleading. The Eu sites are the most accurate but always check with the implanting/afterrcare hospital and of course the manufacturer.

    in reply to: Restrictions following SCS #23147
    Rob
    Participant

    Hi Navchic

    Unfortunately we are unable to provide names of Consultants or advice on the matters that you are asking but you are welcme to mail me and I will pass you on to the neccessary Consultants and their sites who will answer all your questions. I appreciate the importance of “getting it right” and you definitely need more information than you are already provided with. In the meantime enjoy the benefits and pleased it has solved the main problem

    in reply to: cramp!! #21664
    Rob
    Participant

    Cramp is of course a classic symptom of dehydration. I am on quinnine 300 anyway and that works well for me. Normally prescribed for night cramps but mine is taken in the morning for day cramping. Anyone with poor posture will be more prone to cramping as the muscles are not quite working as they would like to. It can be very painful and cause bruising if it gets out of control. Hope it settles

    in reply to: What do you do to keep cool? #21628
    Rob
    Participant

    Cant really help you with that Di as it depends on the size of the room and what you want from it. They are basically customised to the cubic area. I only have the practicality to fit it in one room as it takes up wall space both in and particularly outside. Single units kick off around £900 for a 3.5kw. 5kw is marginally more expensive. I didnt want the heat option as my central heating is so rarely used even in the winter but it seems that is just part of the system. It is annoying that such a great saving on heat is going to create a cost the other way around. I am assuming the running cost will be similar to any other 3kw appliance. It is easy enough to get quotes when you feel ready.

    in reply to: MRI Scan #21791
    Rob
    Participant

    Well done Val and diagnostics are not always easy but they do help occasionally to get things better for us. Some are worse than others and the worse are those that increase physical stress which sometimes is not appreciated by the staff looking after us. One step back two forward and chin up as its all over now. Im chuffed as buttons only one test next week and then clearing off out of harms way for just over a week. Being abnormal healthwise is a bit like working 24/7 without much respite, being called in when things go wrong and awaiting the next challenge. We are high powered really and should be paid as such. Even Gps get more than the planners apparently. Maybe starting point £200k a year would be reasonable for aiding medical science.

    in reply to: What do you do to keep cool? #21624
    Rob
    Participant

    I have just ordered air con as I live south facing with only south facing ventilation. Out of 4 years living here only last year was not a problem. I have had a huge problem with the heat and not cheap but the only way to resolve the problem is air con. There s no panic as my heating was on less than 20 hours each year and it needs solving. Annoyingly effecient air con also has a heat facility which is not needed but obviously inbuilt pricewise. It is being fitted beginning of August and hasnt been an easy spend decision. Also with the property retaining heat so well the fridge freezer has gone down. My outdoor temp is a shelterd 42c today and currently 11pm 22c. It affects my meds seriously and have applied to have the VAT exempt though it is only 5%. So that is hopefully Rob cool and more stable meds.

    in reply to: What do you do to keep cool? #21621
    Rob
    Participant

    Well it never rains it pours and we are wet in the rain and wet in the heat but we are afterall waterproof. Interesting tihng on the radio today about treating heat stroke. Cover with dry towel and then dampen the towel so the evapouration draws the heat from the body. Guess you need to be a contortionist or happen to be with a friend. It will only be a few more days and we will be complaining about the ice age creeping in. My garden therm was 42C today and kept well away. Guess a huge fire risk developing in the countryside. I thought we generally went along with heat helping pain? My scs is half throttle but Ima dripping well to. We are a set of whimps arent we…never quite get there!

    in reply to: butrans patches in hot weather #21612
    Rob
    Participant

    If they release inn the same way as fentanyl patches they may well release quicker but fentanyl patches actually contain three times as much as they release. That is because the surplus provides the pressure to release the drug for the period they are worn. In practice although with fentanyl it takes 14 hours to get into the system and work at all it takes many days to leave the system. The problem I guess would be more apparent in the first days of release with over dose than it would with running slower. Contact the manufacturer and ask for more detailed info and they will give far more than on th epatient leaflet. I think also the heat gets to us just like everyone else.

    in reply to: Labour calls for radical reform of testing #21489
    Rob
    Participant

    I think it is a dangerously political point and a banned substance on site but the bottom line is we are not cared for as we rightly expected to be and need care. Sad admission is that I need care for me personallyand the bits I get are actually appreciated. In many parts of the world they have nowhere to go to other than charities but we did pay upfront. To be honest we are well off but in some cases victims of insurance avoidance. We should be able to get anything anywhere within an insurance system especially if it is Gov run or honesty should portray in the first instance with a choice as to whether pay in to it or not. Hope that is factual rather than poitical.

    in reply to: CRPS UK Organisation have arranged a “meet up” #21442
    Rob
    Participant

    Think its a great idea and hopefully will get support. Unfortunately it is too far for me to travel also. I hope that it does succeed and generates profile if nothing else. The problem with all pain related disabilities is the ability to get from a to b including treatments as well. Hope that you get enough people to make it worthwhile. Even a few would be good but if there is not a good enough response keep trying. None of us are accepting defeat and cannot afford to.

    in reply to: Back to square one on diagnosis #21814
    Rob
    Participant

    Sorry I missed the part about dla. dla although a benefit around disablement it is more about needs than actual condition. I know a practising GP who also does mountain rescue with hardly any leg movement. He is front man for climbing as his arms and grip are tremendous. Trained through his own long extensive treatment from childhood encouraged by his Consultants. He gets dla and his car is adapted. In two years dla will be pip and that is an unknown situation for all of us. Take life as it comes and two years is along time away. You may not be here or you may be fit as a fiddle. Hard to predict life

    in reply to: Back to square one on diagnosis #21813
    Rob
    Participant

    Kathy I have stood out of this partly because it is becoming more about scs than about diagnosis.On the diagnosis aspect “lower back pain” is a base diagnosis and doesnt even refer to pain in the back but pain caused by the spine. It doesnt exactly do the pain and suffering justice to the patient but it is just a label for a complex situation. Regarding scs fighting for a particular form of treatment can backfire as it can be seen as an obsession and a psychologiical cure rather than a physical aid. This is particularly true of scs. I have never known why it is one of the most anticipated ways forward other than it cannot backfire like surgery. I think that if they know what the problem is and surgery would help but you were against that then scs would be considered. It is more expensive than people realise and it is not a cure it is a compromise. With most it doesnt even reduce medication and indeed can increase it. If I were you I would broaden out and consider other options as well. The confusion in your diagnosis is a big hurdle as after scs you lose many diagnostic proceedures. A better diagnosis will evolve as they years go on and regrettably when the symptoms become more directional Know its hard and stick on in there. Good luck

    in reply to: ESA #21075
    Rob
    Participant

    Sorry it hasnt arrived Paul. If you can manage to open mails do you mind if Jan sends me your mail address and maybe that will make it easier?

    in reply to: PIP assessment Part 1 #20532
    Rob
    Participant

    Also many years ago and not atos but dwp my fare was £16 and they refunded £1.50 so that proves that actually and in fact they are a dream world. We all love to dream but dont accept nightmares the same way

    in reply to: Acceptance of Pain is Hard #21758
    Rob
    Participant

    We have to accept our pain because it is ours and not shared in a physical way but an emotional way. So it is only fractionally shared. When I first posted on here I was desperate not so much with the pain as that is dealt and has to be but I was looking for solutions. I found some and havent stopped looking. I am not better off pain wise but I am better of in a worse condition treatment wise. I have given up with the dream it will go away and just want to keep up with its progress and not feel worse. Thats a challenge in itself but I have brilliant support in the home and in the system that treats me. I am worse off with pain than when first posting but I am so much better supported. So physically worse and likewise emotionally a whole lot better. Its the hormones maybe but will never accept what I dislike..tolerate some but never give in. Its probably a failing but cannot change. I am sure we do help eachother..a bit like a family likes and dislikes but opinions from people that are similar cannot come from anywhere else. So thanks everyone and Jan for making it possible.

Viewing 15 posts - 1 through 15 (of 1,214 total)