Spinal Cord Stimulator

My husband had a Medtronic fitted just before Xmas. He is really pleased with it. He says the pain going down his leg decreases significantly when it is on as he says he is distracted from the pain by the buzzing. He also was unsure when he had the trial but the full implant has been good but you are sore after the op for quite a while. This weekend we had a hiccup with it and it wasn't working for three days and he really really noticed the difference and was back on full pills. In a way I think it was good as he now really appreciates how much it is helping him as when sitting or laying his pain score has gone from 8-9 down to 3-4. Hope this is of some help

Hi Kilee! I'm thrilled for your husband!!!! Do you mind if I ask a couple questions? I'm trying to get a handle on which people will have a successful outcome from these things. The dr's don't really seem to have a clue. Do you live in the US or UK? The US doesn't seem to have the surgical follow up coaching and therapies that seems to raise the bar significantly for success. These units seem to work well with radicular pain, which means it radiates from a nerve, most probably due to impingement. Does your husband have radicular pain? These people seem to do well. Was your husband ever diagnosed with arthritis or fibromyalgia, or as a Highly Sensitive Person? These people can't wait to get it taken out. Thank you! ~kathy

Morning Dan,

I am sooooo pleased that DRG stimulation is working for you. I went down to have my surgery last night but it failed and I'm absolutely devestated. I'm not quite as tall as you being only 6'1". They tried for 5 hours to place the leads but there is just too much damage from 6 previous surgeries.and they couldn't even get through the scar tissue. My leg pain today on both legs is pretty bad and I suspect that the anesthetic hasn't even fully worn off yet. My next option is to have a discscussion next Thursday to see about a referal to the Neurosciences department at the John Radcliffe hospital in Oxford to try to place the leads through via a full blown open surgery. Right now I don't know what to think about that! Very low and depressed. YOU STAY positive and continue to get better. It sounds amazing, you soound amazing and I hear mostly great things about the DRG. You'll be running about like a two year old in no time - lol!!! Out of interest where did you have your surgery and had you had a scs previously? All the very best Graham

Hi Graham.

All I can say is I feel so sorry for you. Any sort of delay automatically knocks your confidence and your belief it will ever get done.

So I had mine done at St James teaching hospital in Leeds and I can't say enough good things about the quality of staff and care I received.

During the implant of the leads for the trial I was on the bed for 2 1/2 hours and that was with no other surgery in that area before. My pain is my left arm.

Also it is my first time with any implant and although it's feeling sore now and I'm still feeling nauseous from the sedation (currently drinking ice cold water with grated fresh ginger) I'm happiest I've felt in ages. Almost to the point I could cry. It for me is the beginning of the end and I can now look forward.

All I would say to you is to keep pushing. Once they get it in you'll only look forward.

All the best fella.

X

Hi Dan,

I am over the moon for you and I fully understand your statement that you could alost cry with joy. I was like that when I had my initial trial of a spinal cord stimulator. Although for me it never really worked as it should and eventually ended up causing me no end of problems, that initial feeling of pleasant tingling over horrendous nerve pain was overwhelming. I think I am done with further surgery. My original spinal and neurological surgeons made such a hash of my lower spine and surrounding area back in 2011/12 that I am frightened another majorly invasive surgery will paralyse me. That said the pain is very difficult to cope with. I am allergic to Gabapentin (which funnily enough I took without issue for 3 years at a dose of 3600mg daily until a massive reaction almost killed me off!) and all of the anti convulsants to boot. I will go along and explore my options further as one way or another I am determined to find a solution to my issues. I'm too young at 49 to be written off and it has already cost me my beloved career as airline cabin crew (thankfully they ill health retired me after 25 years, giving me a small income) and my home. I now live in my mothers converted garage - not quite what I had envisioned for myself at this stage of life!!! Because I can walk (just) I am not entitled to any benefits and so live on my rapidly dwindling savings. Maybe a gun and a bullet is the answer! I jest but sometimes it seems pretty hopeless. Anyhow enough of my whinging. CONGRATULATIONS to YOU! Do as they tell you, rest and enjoy the freedom from pain. I wish you all the best in reducing and hopefully coming off all of your medication. The soreness from the implant will subside fairly quickly but might get a little worse before it gets better. The battery took the longest time for me. It was buried in my left buttock but moved up and rubbed against all of my trousers and underwear. Have they put yours in your tummy or side? Anyway, hopefully you'll be feeling up to a little breakfast in a while. I'm going to have scrambled egg on toast! Have a good day and take care.

All the best Graham

Hi Graham,

I remember reading all that you had been through a while ago and was hoping that things had gotten better for you. I just wanted to tell you how sorry I am that you've had no pain relief despite your best attempts to try. I had all of my surgeries between 2011 and 2012, so I can sympathize . 9 within 14 months I've had to give up m career of teaching as well due to the failed laser surgeries and fusion..I've never heard of DRG stimulation, but at 5'2" it would seem I wouldn't be a very good candidate! Have they no disability health care there in the UK for you? I'm so sorry. Hope something for the better comes along soon for you. Sending a prayer your way. ~kathy

Hi Kathy,

Many thanks for your message. I am so sorry to hear of the problems you have been through. Wow 9 ops is a lot! Mine of the day before yesterday was number 7 and it failed! They tried for four and a half hours to get their high tech equipment into place but because of so much scar tissue and a venous plexus (large group of veins) growing aroud the nerve roots it was simply impossible for them to get to where they needed to. To say I am devestated is something of an understatement. I'm sore, my legs hurt even more from the prodding and poking about and I just don't really know what the way forward is from here. I go back to see them next Thursday and I suspect they will call it a day and write me off! Up until now I have not been eligible for disability payments of any kind as I can walk (albeit in pain) but you know I might try again. I would really like to try to find a little job to occupy me, as I think from a mental health point of view it would do me a power of good. Sitting at home just depresses me and probably psychologically makes my pain worse. I think I'm going back to using a tens machine now I have all the electrics removed from my back. I just need clearance to do so. I wish there was some new medication I could try (allergic to pretty much all of the anti convulsants that might have helped). I know one thing for certain, if I could turn the clock back to 2010/11 I would NEVER have allowed anyone to go within a mile of my back with a knife. I would also like to spend just a few minutes armed with a knitting needle alone with the 'butcher' who caused me so many probs all those years ago - lol!!!! I'd make him yelp and give him a permanent limp!! Hw are you managing now? Are there still options available to you? thank you for your prayer, it means a lot. I pray for all of us in pain for whatever reason. They say it's all part of God's plan, I just haven't figured out what part exactly - lol take care and thanks once again.

Hey Graham,

So sorry what you have been through, I was hoping you were finally get some relief, I had my surgery on the 27th they removed it from the backside and put it in my stomach, some of the pain that I was having from the pain of the battery pushing through, but my stomach hurts like heck, lol I told him to make sure he goes further down because I am losing the weight I have put on. I can't believe in not even one year went from 126 to 170 that's a lot, but I am being positive that maybe this will work better for me. And I will be able to have a little bit of energy so I can walk and get back to walking at least, I hope something will come thru for you don't get down and depressed, they will find something to get that done for you, I know you were so happy that you were going to have some relief, please if you need to talk you have my personal email, stay strong my friend! I'm here for you, no matter what time it is, my phone notifies me.

Cindy ( your friend from the USA)

Graham,

I understand the frustration that you are dealing with, but please don't do that, I thought of so many ways to end myself, but now that I have two grand babies and my daughter I wouldn't think those thoughts anymore, I have been where you are if you feel like it's the end it's not, you have so many people on here that care about you, if I could I would take a trip to kick you in your behind to make you start thinking the next step instead of the other options, I AM HERE TO TALK!!!! So if it gets to that point please don't hesitate to email me, if I have to put international phone calls on my phone I will!!

Please stay strong and please when you get down or need to talk I am here!

Cindy xo

Lol Bless you Cindy! Please don't come and kick my butt - that REALLY hurts right now!!! I would never actually contemplate doing anything silly, for one thing I'm too much of a coward to try to hurt myself and with the kind of recent luck I've had I'd not do it right anyhow. No I won't give in or give up BUT the operations stop and from now on I will seek out conservative measures to reduce the pain. How are you? I know you will be hurting from the repositioning of the battery pack but have they swithched you back on yet? I pray that you start to get some well deserved respite from the pain. Do you think the battery will sit better in your tummy? That is the one small relief from my surgery - at least the battery is gone from my bum (that has a different meaning for you I think?). I might be able to go back to wearing more flattering underwear instead of something even my grandad would not have been seen dead in!!! In order for the waist bands not to rub, they had to come up to just below my armpits - not a pretty sight! I feel more positive tonight. My left foot is giving me the worst pain right now and feels like it is vibrating and I can see the nerves jumping about in my leg. My right leg isn't actually hurting so that's a bonus. Good luck to you, stay strong and focused and let's keep our fingers crossed that your stim will start to do its job properly! Night night Graham x

Graham,

I'm glad that I got a response from you, I can hear your frustrating in your typing, lol see I started laughing about your undies haha I felt like that in pants like I was an old lady and I can put my boobs in the pockets lol but living in sweat pants make you feel so unattractive, ugh pants would rub that battery and pants would come off sweats on, don't give up I'm sure there is a way they can get it done, my dr said it was a failed stimulator and than all of a sudden it's oh let's try this cause I wanted it removed, so tried of gaining weight. It's like I blew up in in 6 months, not happy with the weight I put on because of this crap. Im hoping it will work fingers crossed, I'll keep you in the loop, stay strong my friend I'm here for ya!!

Prayers your way for pain free night of sleep!!

xo cindy