Spinal Cord Stimulator – Part 3

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  • #33978
    Anonymous
    Inactive

    Rob, sorry to hear that things are not to well for you at present, I wish and hope you do fair better in the future and that all goes well for you.
    Do you find that the long term drug usage is damaging (painkillers),as they be certainly are causing problems, mainly in the long term side effects. I realise now what long term dependancy has done to me and find I am now having to cope with more than one area of pain.
    I have learnt over the years and tried many different ways to control pain and find that slowing
    everything down using Tai Chi helps to focus the mind away from the pain, but more than one centre of pain is proving to be difficult.
    The S/c/stim is now proving to be less effective and the pain levels are increasing to higher levels than I believed possible, I am still determined to beat this and reduce the drug intake.
    It would be great if they could just fit a chip that shuts down the pain receptors going to the brain, and inturn stimulate the nerves going to the body
    Take care for now
    Chris.

    #33979
    Rob
    Participant

    Hi Chris things aint that bad
    I am sick of the meds as the ones that work send me out of it and the ones that dont may as well not take. The scs is about the only way I see forward and I have fought long and hard for the trial. If it works then thats great and if it doesnt I have had the opportunity and know that all has been done. Today I know that I am well on the way to the trial and that is good news. If all fails then I know the restrictions that I face and will make a life within that…if it suceeds then the same…I just need to project my own future whatever that is. Its not a queston of facing what could be… I want what IS after 3 long hard years as I remain realistic. How do you house yourself not knowing what facilities you need? I need answers to make my life as abnormally comfy as possible. They will come by the end of the year and that is peace of mind…either way

    #33980
    Di
    Participant

    I think we all need answers more than anything else. A diagnosis; being told that everything possible has been tried; whatever it is we can adjust and make plans. It’s teh not knowing and not being able to adapt that is the biggest problem.
    I wish you the very best of luck.

    #33981
    Anonymous
    Inactive

    Rob
    I am glad to hear that you are being realistic with it all, I did mention before that even if the stim gives me the minutest of relief it has achieved something and it does take the edge off.
    The trial is worth the wait and it is surprising how
    quick the time goes so try not to think about it
    to much.When you do try it out, do adjust it to
    gain max comfort and make note of the readings
    as this will be of benefit to you later, if you go for the full implant.
    It should give you the relief you need and make things better, providing it is precise in its location
    it will help tremendously.
    As with the drugs try to keep them to a minimum
    and use pain patches more than the oral ones, as they tend to cause intestinal problems later on.
    It all takes time to adjust as with all things new
    and I wish it all works out for you.
    Take care for now
    Chris

    #33982
    Rob
    Participant

    I am actually returning to Belgium the first week of May…partly to see old friends but also to run through with Van Buyten the exact electrode location that he had in mind had he been doing it. I am reluctant to dictate to the Liverpool team but it is important to me to hit the spot that effects the motor nerve if they possibly can. Van Buyten had ideas on that so I want to know what they are. Dr Sharma at Walton and Dr Van Buyten know each other anyway so hopefully I can discreetly nudge things into may favour. Dead right Di ! the diagnosis is the important bit and even if we dont like it we have something to work along with. I suppose an element of aprehension remains with the whole idea but I keep thinking along the lines that if I dont try I will never know. I am looking forward to knowing the result…whatever that may be. Hopeful as well of course !

    #33983
    Liz
    Participant

    Hi All

    Nicki-hope that you are feeling a little better-I have been following your other posts and have been thinking of you. I guess it will be slow, but hopefully steady once the improvement starts.

    Rob-any more news on your progress towards the trial?

    I have the green light for a trial SCS-rechargeable one-if the trial is positive. Now it is a wait to see if the funding will be agreed-any ideas or experiences that anyone has? I am particularly keen to know how long this might have taken? Apparently things should happen fairly quickly once this is Ok-if it is!!

    As far as the rechargeable one goes-how long do people manage between recharging-and how long does it take to recharge-roughly?

    Hope that all is well with those who follow these discussions, and thanks in anticipation for any words of wisdom.
    Liz x

    #33984
    nicky
    Participant

    Hi Liz,
    Glad to hear you have been given the green light for the scs thats fantastic news im so happy for you.
    It depends on your health authority as to how long it will take to get the funding approved. i know in the past they have managed to get it through in 2-3 weeks but this time im still waiting to hear from them. There is such a long waiting list these days. It seems that more and more people are having them put in.
    From what i hear the rechargable model needs recharging 2-3 times a week but the leads are long so you can get up and move around whilst charging.
    I hope you dont have to wait too long. Good luck with it all and let me know when you hear from them.
    Take care love Nicky

    #33985
    Rob
    Participant

    Hi Liz
    Havi mailed you but only just read this post. The medtronic stim if the leads are placed correctly should last 4/6 weeks from full charge and the charge time per quarter loss is around 45 mins. They have as belt that charges from the mains and you can then wear the belt which charges the stimulator free of being plugged into the mains. Lead placement and useage obviously influence things but they are the target figures. Good luck and will keep you informed and hope that Nicky soon gets sorted out too

    #33986
    Rob
    Participant

    Providing the trial is ok my stim is due to go ahead. Conditionally I have to do a Pain Management Course coupled with some physio to try and get the foot flat. They say this is so that I get the best out of the equipment. I do go along with what was said but am a little miffed that 26 hours a week for 4 weeks will entail “living ” in Liverpool with all that unused time! Never mind the 11 weeks in Antwerp taught me a lot along the way and Im sure that Liverpool has “something” to offer. Ha ha anyone out there know what to do in Walton ? Famous as a prison I believe!!

    #33987
    nicky
    Participant

    Hi Rob,
    I went to the pain

    #33988
    nicky
    Participant

    Hi Rob,
    I went to have a look at the pain management programme at the walton centre in Liverpool but ended up attending input at St Thomas hospital in London as it was nearer. You probably wont have time to see much of Liverpool as the pain management programme is very exhausting and a long day.
    With all that you have been through another few weeks will soon pass and if it helps you get the best out of the stimulator it has got to be worth a try.
    I am progressing slowly i spoke to Mr Lam today and he is not too concerned about the weakness and pins and needles as it is due to the positioning of where that screw was pressing on a nerve and he has said it can take months to settle back down. He has suggested that i start physio to build up the muscles in my thighs and thankfully i am now able to go up and down the stairs once a day which is progress. I am thinking of you and hope you dont have to wait too much longer for that stimulator
    Take care of yourself lots of love Nicky

    #33989
    Rob
    Participant

    Just as an update I am currently having a pint of blood drawn off weekly to solve the haemoglobin problem and it definitely wont interfere with the stim operation. Pain Management Courses are now a condition prior to implantation apparently and that starts end July or beginning August for 4 weeks. It remains on target for completion this year.

    #33990
    Ali
    Participant

    Hi Rob,

    Hope things work out for you pal and you get your opperation this time, I have not read much about this stimulator does is work like a tens machine?

    Kind regards,

    Ali.

    #33991
    Liz
    Participant

    Hi Rob

    Glad to hear that things are not to be delayed for the Hb problems-is it an unpleasant procedure, or just a weekly hassle?

    The pain management program and SCS-is this a new guideline, as no one has mentioned it to me, infact all is quiet from my consultants, as the funding issues are in progress. I guess I should try to find out if they have a time scale yet-who knows!!!!

    Keep us up to date with the progress.

    Any news from Nicky?

    Take care
    Liz x

    #33992
    Rob
    Participant

    Hi Ali…a lot more complicated but I suppose the overall idea has similarities.
    Hi Liz I didnt know whether it was or not to be a compulsory thing but it is the way that Walton now work. I informally met a Medtronic Rep in Ireland and she said that it was to be the recommended format from them as well. The haemoglobin is a drag as currently I have a pint drawn by syringe each week as my veins wont “flow” and that is in Blackpool. Walton is in Liverpool of course and I still have regular visits to Christie in Manchester. My new partner is in Ireland and that is making life more than challenging at the moment. Thank God for Ryan air and the services they provide for disability. It has also made me realise that with the right incentives the pain does become greater but less intrusive on the mind. Hope that the funding comes through for you quickly and progress is soon made. The Pain Management Programme does look interesting from the literature they have provided.

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