I just got my neurostimulator - any tips

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kittycreation
Regular Member


Date Joined Jul 2011
Total Posts : 36
   Posted 9/12/2011 9:29 AM (GMT -6)   
I just had my operation on Friday for my neurostimulator - I was awake for the first half and then asleep for the rest. They turned it on the afternoon of my surgery but I was still pretty out of it and found the sensation kind of uncomfortable. I am wondering how long it will be til I get used to it and find it hepful. Both incisions are really sore and I am exhausted right now.
 
I guess I can't lift anything over 5 lbs for two weeks but am wondering if anyone has any tips to help with recovery and to get it to work the best that it can. I know some people have problems with these machines but this and end of the rope feeling to me - I am determined to make this help. So any constructive suggestions would be really appreciated.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16788
   Posted 9/12/2011 12:11 PM (GMT -6)   
Good morning Kittycreation. I hope that you start feeling better soon and find the SCS unit to be a big help with your pain. How did you do when you did the trial as far as having less pain? They say if the pain is reduced by 50% at the time of the trial then it was a success. When do you go back to see the dr?

We do have other members here at the forum that have the SCS units and I am betting they will see your post and will pop on to say hello.

Please keep us posted on how you are coming along.
Moderator Chronic Pain Forum

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/12/2011 2:15 PM (GMT -6)   
Hi Kitty,

Sorry that you're feeling so sore and tired. I think it's probably pretty normal. If your pain from the surgery is really troubling you, it might be worth asking your PM doctor - or even your GP - about extra pain meds to see you through the next few days.

As far as the sensation being uncomfortable - I think it's a good idea to contact your tech/rep and tell them you need an appointment. There's no point having it on if it's making you uncomfortable, and this just suggests that you need them to sit down for a little while with you and do some programming. It might even be worth asking if the SCS can be turned off altogether for a week or so - sometimes having it on so soon after surgery can actually contribute to post-op pain.

All the best, and hope you're feeling better very soon

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

kittycreation
Regular Member


Date Joined Jul 2011
Total Posts : 36
   Posted 9/14/2011 1:38 PM (GMT -6)   
Thank you - where I live they don't do trials - I was awake for the first part of the surgery and they turned on the stimulator then. I told them I could feel it and that it felt weird - it doesn't hurt or anything like that; it is just a very strange feeling to always be "buzzing". It only buzzes though when I turn on the remote. I am meeting with a programmer on Friday although I don't really understand what that means - the different ways of programming.
I pray and wait for God to do His thing in His time...til then I am waiting with chronic pain...

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/15/2011 2:56 AM (GMT -6)   
Kitty, I can't believe that they don't do trials! That to my mind is absolutely terrifying - probably also negligent as far as the doctor's behaviour and practice goes.

The SCS only works for a proportion of people who trial it - that's why there is a trial period before a permanent unit is considered. Sometimes the stimulation can't be got into the right area, sometimes it's more painful rather than less...gosh, sorry, but I can't believe you even agreed to go ahead without a trial :(

As far as meeting with the programmer goes - this means sitting down with the technician, who will test out a number of different combinations - ways of turning the individual bits of your lead on and off. This will change the type of stimulation pattern you feel, and where you feel it. The aim is to get something that covers your entire painful area and produce a sensation that you find pleasant. This can take quite a long time - sometimes repeat sessions. You'll probably find that as the lead heals into place that your stimulation patterns will change over time and you'll need your programs altered slightly.

Also - I missed this when I posted to you before... you said that you're not allowed to lift anything over 5lb for 2 weeks? Your activity needs to be limited for 2-3 months! No lifting, no bending, twisting or stretching!

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

kittycreation
Regular Member


Date Joined Jul 2011
Total Posts : 36
   Posted 9/15/2011 7:35 AM (GMT -6)   
Thank you Laura...I am blessed that my doctor is a world recognized neuro-surgeon. I absolutely understand your concern about a trial and I discussed that at length with him. He felt very confident given my case and the large number of cases he has done he felt more than comfortable not doing a trial. He works with parkinsons and has even developed a robot to work in remote areas so people can have doctors work on them. To have had him choose me as a candidate is a blessing.

On Friday I am having my first session with the programmer and I hope we'll find something that feels a bit more pleasant. Any tips for asking her to do things or what can be programmed? The leads are to deal with my full right thigh area and entire left leg from hip to foot. Right now I feel a little bit like a buzzing bee...lol

My comment on the 5lb was strictly based on the boston scientific manual. You are right. I have told to be careful and practice good back health for a long time. This will be a bit of a challenge as I am a single mom with a child who is just becoming old enough to take on heavier chores. I'm not quite sure how much time to take off work - I don't make a lot of money however I want my body to heal properly or I won't be working at all.
I pray and wait for God to do His thing in His time...til then I am waiting with chronic pain...

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/15/2011 10:05 AM (GMT -6)   
I still worry a bit about you not having done a trial beforehand, but I'm glad to know you've spent a lot of time discussing it with him.

As far as programming goes, be patient, because it is going to take a while to get right. I'm not sure how the intricacies of the BS are as far as programming goes, but the ANS operates based on individual 'stim sets' made up into one 'program'. This means that within a given program I can change the level of stimulation separately for each area - e.g. foot, knee, thigh. Just go slowly, and don't be surprised if it takes a few sessions to get things sorted out.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio
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