spinal cord stimulator

Hi Bob,

Before you have a SCS implanted you do have a 'trial' where you can then decide if it something you want to use to help you with pain control.

There is a very good Forum called "Neuro Talk" with a sub-forum on SCS's and Pain Pumps which is very informative:

http://neurotalk.psychcentral.com/forum118.html]

Nearer to home there is the Chronic Pain Ireland Forum where a number of members have had SCS's implanted and if you join you can talk to members who have gone through the procedure. For anybody in Ireland it is a good place to talk about any aspect of chronic pain with others who understand what you are going through.

http://www.chronicpain.ie/

Bidd

Oh yeah my stimulator is on 24/7 but everyone is different, some turn it off at night and you can set the remote thingy to do this automatically so you don't have to remember to do it. I find I need mine at night cause I still get alot of pain in my back plus it helps my restless legs so I get some sleep. This stimulator you're getting is top awesome technology that's worth about €30k! Amazing stuff that has saved my life from total hell to having a reasonably normal life. I have to have a 2nd device fitted in the next few months.

gamgsam wrote: »

Hello,

If its a TENS (Transcutaneous Electrical Nerve Stimulator) that you're after, then there's a cheap way of finding out if it'll work for you. The Tens machine exploits the gate control theory of pain which explains why rubbing an injury causes the sensation of pain to be dampened.

If a good (professional) massage can dampen the pain somewhat, there's a chance it'll work - as both are working by the same neural principles.

Link: http://en.wikipedia.org/wiki/Pain#Gate_control
http://faculty.washington.edu/chudler/pain.html

Might seem like childish definitions but they are well explained.

Hope this is of some benefit

A TENS Machine is certainly good to try but I wouldn't waste money buying one unless it actually worked, My GP loaned me one to try and i'm also aware that some Pharmacies also loan them out to try if they know you. For me the TENS machine didn't touch my pain but then the SCS works a treat as it works different and deeper (it's directly connected to your spinal chord) but everyone is different and if you can find one to loan try it. I also saw some in LIDL a few weeks ago and it was only €40

Hey Bob,

Did you have your SCS fitted yet? If so how's it going for you?

S


Quote
i saw doctor o keefe again yesterday and it looks like i will have the scs fitted by the end of september which is good news , i

Bidd wrote: »

Hi Sophie, do you know anything about the Navroe/Nevro? SCS. I've only found info on their website which doesn't explain how it works etc.

Any help appreciated. Thanks.

B

Hi Bidd,
I have a Medtronic SCS but my consultant would like to give me the Nevro one next year or as soon as I'm called. Can you tell me a little bit more about your situation, are you with a pain Consultant, are you on a waiting list for a trial? PM me if you like.
I see you found the Neurotalk website, I find this site excellent but only a few have the Nevro and they are all Irish.

Chat soon

Sophie

Hi Chenile,

It's a shame you didn't post your query a day earlier I too am a DO'K patient and I was in for tests the same time as you and I would have happily pooped in to say hello. I think most of us are on the Cypress Ward, were you?

How is your nevro going for you are you getting any relief? By golly you went through a terrible time and I've never had a single problem with Anaesthesia, I try to get to know the Anaesthesiologist before surgery, I tell them the meds I'm on and that I'm petrified of waking up during surgery and I suggest look I'd rather you give me just a little more than I need rather than waking up. They seemed to understand what I was telling them and they've all replied we will look wafter you. I don't understand why they just didn't put you back under! DO'K Doesn't like patients in discomfort. Did you talk to him about it after and what did he say? Do you know the name of the Anaesthesiologist? PM me his/her name if you prefer, there is one person I'm not very comfortable with.

I have a Medtronic SCS and it was disconnected 3months after I got it in because it stopped working. So I had a lot of tests, I had another disc prolapse around T8-T9 that they didn't know about, they guessed I had a they also didn't know about the extent of the degeneration.

I'm having it connected soon.

As for what you can and can't do. Don't be silly, use your common sense. Don't lift stuff over 5lbs, don't drag stuff, don't lift your children if you have any, I don't. Walk as much as your able to and build it up. My first walk after surgery was 5min and I built it up to 30min before I realised something was wrong and it wasn't walking. When getting into the car sit sideways on the chair with your two legs on the ground, then swing your legs in. That way you won't hurt your pelvis.

Have you family nearby? My Mam calls over every to do little things, she might prepare some vegetables or potatoes for dinner, she sweeps the floor. My husband does 99% of the housework. Would you have anyone to help you like this? Could you afford to pay someone. This too isn't the kind of stuff you should do. I can sort clothes washing but if my husband or my Mam are there ill ask them.

I hope this advice helps, are you due to have those leads fixed or did he do it there and then? What part of the country are you from? I'm in Kildare and there are a few of us Irish on here, all women it seems but you know Irish men, they couldn't be doing with a site to support anyone.

This link is a support link that is great support, everyone either has a SCS or are waiting on a date. We are a great group of supported. No-one judges and its entirely up yo you how much you want to share but you can trust them, I've shared some stuff that's hard to share. Pain destroys everything, your work life, your life with you're children, your marriage but if you're strong you'll be absolutely fine. My husband comes to all my appointments, shares his concerns, reminds me of stuff I've forgotten and you have to remind DO'K about your last appointment because he forgets, so I write stuff down.

Best of luck and let me know how you're getting on, PM me if you like.

Sophie






QUOTE=Chenile;80065042]Hi
I was wondering if anyone has gone through the three months recover after the machine is completely in place. To cut a long story short I got the machine in last year (I'm with Dr O'Keeffe, who I've been with for nearly ten years) and had major complications ( i lost blood pressure for 27 minutes during the stage two op, which lead to me having the final part of op under local (not to be recommended).

So due to all of the above it meant that the leads had migrated and I would have to come in for a readjustment.

As I'm writing this I'm lying in st vincents. I was wondering if there is anyone out there that is recovering from stage two?

I was quite shocked to find out I couldn't twist, bend or stretch for three months and that I couldn't live on my own. But for some reason I cant to the bottom of what I can and can't do and would really appreciate if a fellow nevro survivor could let me know how you are getting on...

Thanks


Chenile[/QUOTE]

Hi Guys,

I have started a group on facebook simply called Spinal Cord Stimulation. You are very welcome to join and share your experiences with people who will benefit and if you know others who are interested in joining please tell them about it. It's about time there are more informative groups in Ireland.

Thanks Guys,
Pauline

su77oneill wrote: »

I started my trial SCS on 8th Nov and it was the biggest shock of my life - the procedure was done under local anaesthetic and sedation. I felt everything that the surgeon did and the pain was horrific. If this had been explained to me pre-op then I would have able to cope much better - forewarned is forearmed!! Having said all that, I was looking forward to the 3 week trial.

The first few days were quite trying - there were a few technical issues with the external SCS controls but they fixed in about 30 mins by the medical device company rep. After that, I was it was full steam ahead. While the SCS was on I could feel no pain, just the tingling/buzz/vibration of the SCS. It is an odd sensation that will take time to get used to. The external SCS controls are a bit bulky but I got used to carrying it around. By the end of the trial, I decided to go ahead with permanent implantation.

I had the implantation done on 28th Nov. I know it's early days but I haven't felt this good for a very long time (I've had constant chronic lower back pain for 7 years). My mobility amid movement have improved so much over the last 3 or so weeks - I can stand up without someone helping me, I can lie down in bed and get comfortable straight away, I can walk at the same pace as everyone else and most importantly I don't have the mentally draining pain anymore.

I feel like a weight has been lifted off me. I can now look to the future and make plans. I can go back to doing the job that I love. I can also go back to swimming and walking.

My options have increased immensely and I am going to enjoy every single pain-free day. This may sound like a corny, saccharin post but all of it is true. I been given a new lease of life

Dear Su
Thank you very much for posting your journey since the trial. Not very happy about the Trial surgery you had to go through but what can be done about that now. I can't understand why a doctor would put a patient through so much pain when there is no need in this day and age with improvements in medical science. I am waiting on approval from Med Ins company for trial to go ahead, so hopeing to hear soon. Even though I know it is different for everyone and there can be terrible complications, I am so delighted for you Su. You have am amazing result and I can feel your happiness you are so upbeat now. Did you attend St Vincents hospital? That's where I am attending!
I have started an SCS group on Facebook if you are interested. It is a closed group so it is safe to share and I'm sure people would love to hear your experience so far. The group is called Spinal Cord Stimulation Ireland. We are only small in number but I am hopeing the group will grow as there is no support group for people in Ireland going through SCS surgery which is by all accounts serious enough surgery.
Best wishes and continued pain free days ahead.
Pauline Power Burke x

Hi everyone,

I am with Dr O'K in Vincents and am due to have the axium stimulator put in about 3 weeks. I have suffered with Post surgical chronic nerve pain in my abdomen and groin for the past 7 years. I'm 32 and in the last 3 years the pain increased so I can no longer work.

I know it varies from person to person but I would like to hear more experiences of going through the procedure. Do they use general anaesthetic or local and sedation?

What is it like recovering afterwards? I've been suffering with depression and anxiety for the last year due to my pain and have found it very difficult to get any help for my mental health with this (I keep getting assessed but have yet to have an actual session with someone I could talk to).

My concern is the impact a long recovery time could have on my mental health and whether I will be able to enjoy some of the summer before heading back into a dark long winter.

hotfeet wrote: »

My partner has a stimulator fitted since feb 2014,,,,,she finds it extremely good for her pain . She is however desperately tired and fatigued in the past few months and has no energy. She is also experiencieng pain in a differant area that never pained before, even before the stimulator. She had suffered from vhronic pain for about 30 years and was on some seriously heavy duty meds, most of which she has ceased using of her own choice. Is this tiredness and fatigue just part of her recovery or as a result of discontinuing some medications,she is 9 or 10 months with the scs implant as of now.Is there cause for concern , she does not want to be seen as complaining given the relief she has had to date.

It sounds to me like your partner is reacting to coming off her meds. 30 years is a long time to be on painkillers and the body is very sensitive to change. Add that to the surgery and insertion of SCS and she's going to take quite a while to feel better. On average, it can take your body 12-18 months to go back to normal after any surgery, but if she's concerned then she needs to go back to her consultant. She won't be classed as a complainer or anything like that. The doctor is there to reassure and advise. I'm glad to hear that she's had relief with the implant.