Spinal cord stimulator – questions

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This topic contains 35 replies, has 7 voices, and was last updated by  PaulT_99 1 day, 11 hours ago.

Viewing 15 posts - 16 through 30 (of 36 total)
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  • #45942

    Sarah
    Participant

    Nevro HF10 switched on yesterday after a week of agony. Sure the pain was not that bad before trial. One wound is still weeping, otherwise nicely healed. Unit is very obvious when laying flat or sitting. Told some more swelling to reduce and time! Some pain relief starting to wash in. Now have many settings to work through. Godsend is my 2 inch memory foam mattress topper, without which I would be stood up..

    #45948

    PaulT_99
    Participant

    Im 2 weeks now post implant and still sleeping on my front.
    All stitches were taken out yesterday and thats made things a bit better. As the skin on my back is not pulling so much when i move.

    While sitting in the car yesterday going to see the nurse i actually could not feel the implant. while sitting right back in the seat. So it does seem a good position for it.
    Unfortunately for me, the wire anchoring point mid spine is still really hurting. 🙁

    #45965

    Sarah
    Participant

    2 weeks on from implant. Had my worst night in 3 weeks. How quickly you can get used to sleeping a few hours after years of painful insomnia. The bruising over and around the implant has made it to the surface. Now almost any position is painful. My whole hip is very bruised and tender. The setting is changed every 3 days. Enjoying a little less foot pain with changes from cold to tight. Many more settings to try.

    #45968

    PaulT_99
    Participant

    Hi Sarah,

    Im now at 3 weeks post implant, and things are really improving.
    The implant lump has really calmed down and i can actually sleep on that side for maybe an hr at a time.

    Worst bit for me is still the middle of my back. I have a lump that sticks out maybe 5mm. Meaning what ever i sit on, if i lean back the lump is pressed.
    I think this is where the wires enter the spinal cavity.
    The pain nurse has told me not to worry about it and it will go down.
    Back at St. Thomas on the 20th for the first checkup review.

    #45972

    wendyjay
    Participant

    Sarah, It will get better I promise! I rubbed coconut oil on my scars a few times a day. You didn’t mention they were bothering you but it does help the scar tissue heal quicker so there is less of that pulling feeling and minimizes the look of the scar itself. Can you get some lidocaine patches or gel from your Dr? Or something similar from your local pharmacy? My dr. prescribes it for all patients for the first few months post implant specifically for the discomfort you are describing. I used the patches. Without them I would not have gotten any rest at all. I find cbd salve works just as well (my insurance no longer covers the lidocaine). I still use it all the time for sore days. I unfortunately had a bad fall about 6 months after my implant and moved the unit right to the surface of my skin which causes a lot of discomfort. The salve helps with that so much. But give your Dr. a call about the Lidocaine. Its basically like a numbing agent. I hope you get some rest! If you don’t have any luck, I will gladly share the info for the CBD salve I use.

    #45973

    Sarah
    Participant

    The wound on the shoulder from the trial wire exit is still not fully healed. The other two are not a problem. I have no pain meds as a result of years of massive side effects with no pain relief. The only one that sort of helped was Venlafaxine, apart from the headache,nausea and constant sweating they reduced electric shocks through to my toes.
    Morphine gives me a headache. I rely on paracetamol and with fingers crossed the Nevro HF10 to give me some sort of quality of life. I have lidocaine patches which have also been tried for the foot pain. A lidocaine infusion did nothing! Shall try patch over implant site. Thanks for that Wendy.

    #45988

    LJ
    Participant

    Hello, I have recently joined the forum and read your post tonight about having an SCS. I’ve looked it up and wondered how you are getting on now with it and did you have it fitted at st.thomas hospital?

    #45989

    PaulT_99
    Participant

    Hi LJ.

    I had mine done just over 3 weeks ago @ Guys & St. Thomas.
    The Pain Clinic is based at St. Thomas, but the pain clinic use the Theatres at Nuffield House Guy’s hospital about 4 miles away.

    I explained in an earlier post that the whole process takes about 9 months to a year.
    You have to go through a lot of evaluations and a 2 week residential course, prior to approval and the operation.
    The Operations take place over 2 weeks. Week 1 you have a trial implant, and if OK, in week 2 you have the full implant.
    It is NO walk in the park as i have found out. Extremely draining and tiring. But now in my 3rd week of recovery and the outlook is really good.
    My pain in the morning at waking is 1/10, where as it used to be 8 to 9/10.

    I have had the “Nevro HF10 Nural simulator”. This is a “High frequency” unit, and seems to be the preferred type now. As you the patient cannot feel it working.
    There is a Remote Control for the unit, and a Contactless Charger. As you need to charge yourself every day. For me this seems to take 25mins approx.

    Most answers should be in this thread, but if you have anything specific feel free to ask away.

    Paul.

    #45990

    Sarah
    Participant

    Hi LJ
    Mine was done at Addenbrookes. Waited for 2 and half years. Told 6 month wait at beginning. No pain relief works for me,tried the lot! The multidisciplinary appointment was Jan this year. Then nothing until 9 weeks notice of surgery date. Implant was one week after trial. Just over 2 weeks now, swelling and discomfort reducing by the day. Still have problems with trial wire exit wound not closed. Working through settings to reduce pain which is down by about a 3rd.

    #45997

    PaulT_99
    Participant

    Woke up this morning, and the implant/battery unit was a bit more sore than usual when sitting up.

    A quick feel around and realised the damn thing has moved around 90 degrees !.
    I must have turned over in the night and caused this somehow.
    Spoke with the hospital and they say it can just be pushed back into position again, but im just too squeemish to do this… Urghhhh.

    #45999

    Sarah
    Participant

    Hi Paul
    It does seem you are very much on your own after the implant. You have to chase and leave messages with Nevro rep or pain clinic. The aftercare advice has been rather sparse and difficult to access. Do not is the standard reply. My unit needs more settings to try as my feet are going numb, with less pain but not very comfortable. As the swelling over the implant reduces it is very close to the skin surface. Still sensitive to touch and pressure. If mine turned as yours has, I think a call to 111 in order. I have to keep on getting a District Nurse out to change the dressing that is still weeping. Shame everyone is so busy?

    #46002

    PaulT_99
    Participant

    Hi Sarah,

    To be fair to Guys & St Thomas, i have a direct Tel no. for the pain nurses and their email address. And this morning they got back to me within 20mins.

    Apparently the unit can move around as its within fatty tissue. She said i can try to move it myself by manipulation. Or just leave it to tues when i have my 1st review meeting. And they will do it.
    I think i slept on my left last night for a short while, that would have put pressure on it and possibly caused it to spin around.
    Oh fun….

    #46007

    PaulT_99
    Participant

    Hi Sarah,

    How are you getting along with Recovery ?. Is the unit working more effectively yet for you ?.

    My SCS is still the wrong way around. Its now vertical and right in my belt line.
    I cannot sit upright straight at all, since it puts pressure on the left side and the unit sticks out. Really painfull.
    So im sitting leaning to the right, or on my front again.
    St. Thomas could not see me this week as they are so busy and some staff are off. So i have to stay like this until my appt on Tues.
    I have tried to move the unit again myself, but i just cannot do it.

    #46011

    Sarah
    Participant

    Currently in Addenbrookes, via A&E yesterday. The wire exit wound still not closed. Kept telling people for 3 weeks. Then they finally become worried. On iv anti biotics. Wound been opened swabbed and stitched this time! Should go home tomorrow. Implant had moved up but straight from trying to sit in chair. Then digging in when I walked. I pushed it back down a bit.
    Nevro rep was the decider to finally deal with all this. Still not a lot of pain relief but sleep so much better. Next appt for me also moved on a week to 28th. Hope for more settings to try. Thoughts are with you as implant moving an inch was painful enough.

    #46012

    PaulT_99
    Participant

    Hi Sarah,

    re Not much pain relief.
    Do you know if only 1 or 2 segments of the wire have been activated ?.

    Since at St Thomas, they enable the whole length of the wire, that way it covers as many nerve trunks as possible.

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