Spinal Cord Stimulator, SCS

Viewing 15 posts - 1 through 15 (of 21 total)
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  • #34054
    tony
    Participant

    HELLO HAS ANYONE HAD THE OPERTION FOR A SPINAL STIMULATOR PLEASE

    #34055
    Amanda
    Participant

    Hi Tony,

    Great question. Im on the final throes of embarking on this road in an attempt to get some pain relief. im meeting a doctor in Belgium in September to discuss this therapy. I will let you know how this goes.
    Are you on the same track?

    Amanda

    #34056
    Di
    Participant

    May I ask how you manage to get to see a specialist in another country? Is this just a private appointment?

    #34057
    Amanda
    Participant

    Di,

    In answer to your question I have been to France seven times now to consult and be treated for my condition which has no other expertise in Ireland or the World.

    In essence my Pain Specialist knew of this doctor in Belgium and rated him as the leading man to do spinal retrograde stimulation; I emailed him and requested an appointment, and she sollowed it up with him and he telephoned me with an appointment. He works in a public hospital, so the charge to me for his services will be ~40 euros….much cheaper than a private consultation in Ireland which runs normally at 180 euros!

    Each time Ive been in France the costs have been at the same rate and there has never been an issue over time at my consultations – some have been with 7 doctors at the same time and have lasted for over two hours, for which I paid 50 euros.

    The crux of going abroad is that there is no expertise here for my condition so I have no alternative but to travel…it is rather daunting to go into hospital in a strange country, but to be honest I have done it so many times that now it is not a fearful experience for me at all.

    Take care

    Amanda

    #34058
    Di
    Participant

    Many thanks Amanda. I asked because I know of one specialist in France who is the only one so far who has done research into my problem. I suspect that the cost of getting there from the North of England may be too much butit’s great to know it can be done. If anything comes of my research I will get in touch.

    #34059
    Mary Clark
    Participant

    Hello I dont have a spinal stimulator but I have exctly the same nerve stimulator implanted in my upper arm for nerve pain due to finger amputation and Reflex Sympathetic Dystrophy I have had good results with it.
    Mary N.E.Lincs

    #34060
    JB
    Participant

    in america, the leading experts in this field is the MEDTRONIC CORP. I BELIEVE THEIR WEBSITE IS http://WWW.MEDTRONIC.CORP OR JUST ; INTO SEARCH FOR MEDTRONIC CORP. THEIR US NUMBER IS 800-442-1142. AS A GROUP LEADER OF THE AMERCAN CHRONIC PAIN ASSOC. i DID ALOT OF RESEARCH ON THIS: THE IMPLANT IS EITHER A PERMANENTLY IMPLANTABLE INFUSION PUMP IN WHICH A PORTABLE COMPUTER DOLES OUT MORPHINE OR THE STIMULATOR. rESEARCH SHOWS IT TO BE EFFECTIVE AND OBVIOUSLY FAR LESS INVASIVE THAN FUSION OR TRADITIONAL LAMINECTOMY. bUT….IT IS EXPENSIVE ( 30,000 US ) , MUST HAVE ANNUAL FOLLOW UP, CONSTANTLY CHECKED FOR INFECTION AT THE SITE OF THE CATHETER, AND PATIENTS MUST BE PRETESTED TO DETERMINE EFFICACY . tHE SITE FOR ENTRY IS DETERMINED UNDER FLUOROSCOPY , NOT JUST HIT OR MISS, TO TRY AND CLEARLY LOCATE LOCATE THE OFFENDING GANGLIONIC PATHWAYS. sOOOO, HOPE THIS HELPS!

    PS– HAVE U HAD AN EPIDURAL BLOCK UNDER FLUOROSCOPY ? HAVE U CONSIDERED RADIOFREQUENCY RHIZOTOMY–BOTH R OUTPATIENT SURGHICAL PROCEDURES BUT FAR LESS INVASIVE AND COSTLT THAN THE PUMP. THERE IS ALSO A PROCEDURE CALLED IONTOPHORESIS OR PHONOPHORESIS WHICH IS DONE HERE IN THE STATES IN PT-IT IS NOT INVASIVE AND MAY BE DONE IN ENGLAND OR ON THE CONTINENT. iF U HAVE EXHAUSTED ALL CONSERVATIVE MODALITIES ( MY PHLOSOPHY ) AND THE OPIATES DO NOT HELP ALONG WITH PAIN MANAGEMENT THEN….ALL THE HEALING POWERS AND PRAYERS i POSSESS ; WITH U!

    A FELLOW PAINIAC

    #34061
    Amanda
    Participant

    All:

    Here is the Update from my recent trip to Belgium.

    I travelled to Belgium in September, for a consultation with Dr Jean-Pierre Van Buyten, to discuss the possibility of Retrograde Spinal Stimulation being effective for relieving my pain. I flew to Brussels and travelled by car for an hour with a friend to the small town of Sint-Niklaas – home of the original Saint Nicholas aka Santa Claus

    Following a busy time involving another round of funding issues, research into this technique etc, and also apprehension about meeting a whole new team of doctors…..big advantage was that he spoke fluent English!!! As did all the hospital staff as well.
    I arrived at the AZ Maria Middleares Hospital – about three years old; and all the staff I met were fluent in English and helpful in guiding me to the Pain Clinic where Dr Van Buyten has his office.
    My consultation began with the usual medical history and symptom analysis; he felt that I had given every other modality a chance and was surprised at the level of treatment I had received in France; Ketamine is not used routinely in Belgium; then Dr Van Buyten explained all about the Neuromodulation process.
    He thought I was a suitable candidate to try it out, via a Trial for a period of at least a month.
    The equipment used would be Medtronic Synergie + using the Retrograde approach.
    The Trial involves 4 days as an Inpatient during which time I would be given prophylactic antibiotics via IV, and have the Trial Stimulation leads implanted into S2 – S2. Infection control is paramount in this time as the Stimulator is worn externally on a belt, so stringent dressing changing and hygiene standards are essential to avoid any possibility of infection. During my stay in the hospital I would be able to have adjustments to the frequency and power levels of stimulation.
    I would ve able to make minor adjustments after this stage myself depending on my usage of the Stimulator. Every day for the Monthly Trial it is essential to have a nurse change the dressings to avoid infection.
    Depending on how the Trial is going for me, will determine whether I go ahead with final Implantation of the Stimulator. This cannot be determined until at least 3 weeks after commencing the Trial period.

    If I see adequate benefits and decide to have the Stimulator implanted, I would be back in hospital for a further 4 days, have antibiotics via IV and the implantation would be done under General Anaesthetic. The same protocol regarding hygiene will follow and the sutures will be removed after 10 days.
    Normally patients return after 6 weeks, 3 months and 6 months and then annually.
    I would be able to have adjustments made in Ireland rather than travel to Belgium in between standard check up visits.

    I had plenty of time to ask lots of questions that I had listed out clearly these included the type of equipment planned, antibiotic therapy and costs of the procedure and equipment and of course the risks and previous patient percentages of improvement with Stimulation and Pelvic Pain. Dr Van Buyten has treated about 10 patients all of whom have undergone the TG approach to Pudendal Decompression Surgery; all of whom are reporting improvements since having the Stimulator implanted. He stressed that he was not going to give me a percentage of this improvement as he feels that 10% gain in activity to someone as opposed to 50% to others is very relative to the individual patient. He believes that you cannot put a price on improvement to a patient who is living with Chronic Pain for a number of years. He of course offers no guarantees, but felt confident that I should gain in some areas of my symptoms and especially in the allodynia and urinary frequency problems.

    The cost of the procedure and hospital stay is approx 1800 euros for 4 days in Patient care. The Stimulator in total will be approx 11,000 euros. He has recommended a large Stimulator for me to have as he thinks I will need the battery power of this unit rather than a smaller unit with a shorter life for the battery. The Synergie with large usage will be expected to last 3-4 years. I asked the question that as technology is getting smaller all the time, could the same be expected for Stimulator units, and the reply was that Yes they are getting smaller all the time and if there was a smaller one that was suitable and available for me, I would be implanted with the smaller one; the leads for all Medtronic equipment are connected using universal connectors so the leads would not have to be replaced even with a new model so Stimulator.

    Before I can be approved to have the Stimulator there are a few criteria that need to be followed:
    Psychological Evaluation – This I have had done since coming home from Belgium and have clearance in this area.
    DEXA Bone Scan – This I have had done and have the bone density

    #34062
    fifi
    Participant

    Hi everyone
    does anyone know if this is any anyway similar to Tamars, technology assisted micro mobilisation and reflex stimulation. There has been quite a lot about this in the local press recently and a new private clinic opened in Edinburgh offering this as a treatment for chronic spinal pain, has anyone heard of it or have any experience of it as effective pain relief? Thinking of giving it a go, will try anything once!
    Thanks
    Fiona

    #34063
    Amanda
    Participant

    Hi FiFi,

    You could look up the Tamats website for more detailed information about this therapy. The address is http://www.tamars.co.uk

    The Stimulator that we have been discussing here on this thread is an implanted permanent one into the sacral roots of the spine.

    Maybe the Tamars will be of interest to you and others. Good luck if you try it out.

    Amanda

    #34064
    fifi
    Participant

    thanks for that Amanda, is the Tamars treatment something you personally have tried?? It is quite expensive, well 70 quid for an hours assessment and treatment, when you are facing the prospect of not getting back to work although I do so try to be accepting of my pain, the last thing I want to do is waste more money on useless treatment. It is not available on the NHS at least not where I stay. You get to the point where you are so desperate for some relief you would give anything a go. it would just be nice to hear of anyone with personal experience of it, whether it worked for them or not. Thanks
    Fiona

    #34065
    Amanda
    Participant

    Hi FiFi

    No I havent tried out this therapy…its probably not available in Ireland…Ha Ha!!! I dont think it would be effective for me as my problems are neurological and not spinal related.
    Why dont you telephone the company and ask where it is being used, and contact the hospital/clinic and ask for a reference list before you go forking out money.
    Nothing like this is ever covered by the NHS or in Ireland the HSE….where they invest our tax payers money is a mystery?

    let us know if you get any more information as it may help someone else…and help you to decide if you are going to try it out yourself.

    Best wishes

    Amanda

    #34066
    Mike
    Participant

    Hi Tony
    I have been battling with my local PCT for a spinal cord stimulator. I did have consultant after consultant stating that I may benefit from one. Any way to cut a very long story short I recently had a trial stimulator which was very succesful. I am now waiting for the full implant. I do have some info that was published in the Lancet by Prof Tesfaye and also some other info from the British pain Society I f you or anyone else would like this info I can email these to you. Spinal Cord Stimulation is not a cure or indeed suitable to everyone but I think if a consultant is willing to give us the chance to try one we sholuld.
    All the best
    Mike

    #34067
    Amanda
    Participant

    Mike,

    Im delighted for you that your Trial Stimulation was a success and that you are considering implantation. Can I ask of the location of your trial leads, and what type of unit are you proposing to have implanted?

    Best regards,

    Amanda

    #34068
    Mike
    Participant

    Hi Amanda and all
    I had the trial spinal cord stimulator to treat peripheral neuropathy. I had 4 electrodes implanted for the trial they were implanted in T11/T12 region and gave me fantatsic pain releif. From what I have found out about the spinal cord stimulators from various buts of information they are more effective for peripheral pain and less effective for trunk pain. If that makes any sense. I am waiting now for the full implant and to be honest I can’t wait. As I have said before if anyone would like some information on these stimulators please let me know. (I’m not of commission) But we should all explore this treatment if it is deemed appropriate.

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