Spinal Cord Stimulator – Part 3

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  • #33963
    Anonymous
    Inactive

    Re Spinal Cord Stimulator – please would you post all new messages here. Many thanks,

    Jan at PainSupport

    #33964
    Rob
    Participant

    My stimulator implant is held up as I have a high haemaglobin level. It has been high for 12 months and was thought to be med related. As a result I have been referred to a haematologist for investigation. This is because they are reluctant to do surgery without knowing the exact cause. ot really a pain issue but anyone been there ? I am still hoping that it will be completed this year

    #33965
    nicky
    Participant

    Oh Rob,
    Im so sorry to hear your news i know you had your heart set on getting the stimulator done asap. At least they have found out now before you start having surgery you dont want any complications. I really hope they sort you out soon.
    I had a positive discogramme done on Monday so i will need to have another fusion done in the near future. Mr Lam wanted me to have the replacement stim done before the fusion but that dosent look like that will be possible as there is a 6 month wait. My stimulator clinic havent actually implanted a rechargable one yet but thy have offered me the option of going for it if they can get the funding. but the medtronic one have things about it that have put me off. Apparantly if you let the battery run down on more than 2 occassions then it cuts out and wont work at all. I think i am going to have the synergy done again as im hoping that if the fusion helps who knows i may not need it anymore.
    Any way i hope things get sorted out for you. goodluck.

    #33966
    Rob
    Participant

    Thanks Nicky
    I know that you have had a few kicks in the teeth as well. The stim battery would have to lose charge completely which is hard to do as the charge times are well spaced. I have been considering the synergy purely for size reasons as its half the size and it is a factor for comfort as well. Im not sure that it can hit as many spots and it all needs sorting later. I am hoping to have a chat with Van Buyten again before they start here and get the full details of what he intended. Its more a blow as the cause is none too clear and the haemotocrit is way high and increasing as well which is confusing the reason. Im not really into bloods to be honest so I will have to live in fear for little while . I know that I could be prone to acute leuk due to my cancer treatment but think its gone too long now to worry too much about. Think positive time and plough on regardless Thank for your support and hope that the fusion helps things along the way.

    #33967
    nicky
    Participant

    Rob,
    your support and your knowledge has also been greatly appreciated. You probably know more than me but from what i can gather the rechargable stim dosent appear to be that different in size to the synergy. I was told that best one at the moment is an american company but my electrodes are not compatable.
    Rob im really keeping my fingers crossed for you that this turns out to be somethng minor you have also had more than your fair share of problems.

    #33968
    Rob
    Participant

    Hi Nicky
    I thought that the synergy was approx 2.5 inches square…is that correct? The restore is about 3″ by 2.5″ but supplies more potential
    electrodesThey are similar depths. Good news in this morning as the haematology problem can be sorted on a temporary basis to allow the operation to continue so no hold up there. They are hoping to give me a quick appointment within the next two weeks to investigate further so no worries at the moment.

    #33969
    Liz
    Participant

    Hiya

    So glad that things are progressing again Rob and that it looks like the problem is “manageable” it would have been awful if it had held things up for too long. Any ideas on timescale yet?

    This 18week from referral to treatment, is that for EVERYTHING, or just certain things? Does it mean if you need investigations, they can keep you hanging longer? Just curious as my 18wk time limit is rapidly passing- with very little happening and I was wondering if there is a real definition, or has the NHS a good cop out clause…

    Nicky- sorry to hear that all has not been well with you- you must be reallt cheesed off. Have you a definite date, I am sure that I have read that it is April time. You said that they won’t replace the stim at the same time, does this need doing too- am curious as to the life span of them? Why can they not do the two together?

    Here’s to a good summer and maybe we will all have something to be pleased about….
    Take Care
    Liz x

    #33970
    nicky
    Participant

    Hi Rob
    I am so relieved for you that this problem with your blood is not going to put the stimulator on hold. Ive just looked at medtronics website and they are showing a rechargable stimulator a restore ultra (have you seen that one) which appears to be smaller than the 1st rechargable model and im sure the technician at my clinic said that it is the same size as the synergy though i could be wrong.
    Hi Liz
    Unfortunately on the day i found out that i needed another fusion on the way home i went to turn the stimulator up only to find the battery sign flashing showing that the battery was 95-100% used up. Life would be so much easier if they could do both ops at the same time but unfortunately the stimulator is done on the nhs as my private health care wont cover the cost of the implant but luckily for me they have agreed to cover the fusion privately. I just wish the nhs could get me in quickly as im really going to need the stimulator after a fusion.

    #33971
    tony
    Participant

    with regards to the spinal stimulator for the neck area for info only Bupa will not now stand the cost due to poor evidence that spinal stimulators work ? interesting to say the least !

    #33972
    Rob
    Participant

    Hi Tony
    I did try to contact you some while ago as I know you were awaiting implant almost two years ago werent you? So did it happen ?. Spinal stimulators only work where the patient is suitable and that is far from everyone. The dioagnostics required are long winded to say the least and it may well be that BUPA have found this expensive and time wasting. They have worked effectively for many years in suitable circumstances and some results are exceptional….that isnt always the case of course and as inj all med proceedures there are failures as well as successes. The cost is high and that is the most likely explanantion and the NHS are not exactly throwing them in here there and everywhere either for the same reason.

    #33973
    Liz
    Participant

    Hi All

    Was wondering how everyones trials and tribulations are progressing.

    Rob-any nearer solving your recent hassles and any nearer the op?

    Nicky-how are you? I think that you should have had your surgery and I was wondering how you are and if you are gradually on the mend.

    I am still waiting to hear from the neurosurgeon- slow NHS progress……but maybe things will progress once I have my follow up appointment at the end of April.

    Hope you are both OK.
    Kind regards
    Liz x

    #33974
    nicky
    Participant

    Hi Liz
    I wish i was on the road to recovery. unfortunately i am now having my fusion on 21st April due to my private medical insurance not covering The London Bridge hospital where i was booked in. There was a £900 short fall per day so now i am having it done still privately but at Guys Nuffield which they have agreed to.
    I am also still awaiting a date from the NHs for a replacement stimulator.
    Im sorry to hear that you are still caught up in the system. I hope Rob is doing better than we are.
    Thank you for your continuing support.

    #33975
    Liz
    Participant

    Hi Nicky

    Sorry to hear that you have been delayed….it must be very wearing- at least you can still get it done privately. I really hoped, for you, that you were over the worst-will have to sent more cyber thoughts for the 21st…

    Keep in touch and fingers crossed for you.
    Liz x

    #33976
    Rob
    Participant

    Good luck on the 21st Nicky an hope that the first hurdle goes well. I am running to schedule with the Physchological appointment on the 12th May at Walton and the haemoglobin is on the way on the 28th April though now not considered to stand in the way too much as almost certainly drug treatment related. Looks as good as I can expect for now anyway and a few weeks at this stage seem irrelevant when I look back over the long haul.

    #33977
    Rob
    Participant

    Been to my onchology today and assured that the haemo isnt a problem and just need the surgeon to accept that so all is definitely well. Im not sure what to do with this thread as I know that stimulators are fitted fo a minority group?. I can either spill as I go or come back next year on it with the results good or bad.As it stands it is physchological tests followed by physilogical tests and then go go if all ok. After that if the trial works then full implantation. Why as I write this am I still half thinking stem cell therapy should be legalised ??? Oh well perhaps the physch will explain

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