SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions.


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Old 01-07-2014, 10:19 AM #11
Hannabananna Hannabananna is offline
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Default do rest

Care for yourself
Get that rep and PM on it
sometimes I let myself fall into the pain and don't take charge to make change.

adding prayers

Johanna
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Old 01-08-2014, 01:01 PM #12
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Originally Posted by PamelaJune View Post
Hey Becky, I hope you are still doing well post implant and that you saw the change over from last year to new year in a relaxing fashion. We went late to our friends house ie left home and got there at 10pm and left there at 12.30pm. Very relaxing and being among lifelong friends who are like family very warming.

Let us know how you are if you get a chance
Pam - I was glad to hear that your lumbar pain had been helped, and then saddened to read that it was back. I hope they can get both of those sorted quickly for you.

I had my staples removed two days ago, and my Medtronic's rep worked on my programming a little bit. We're having a little bit of trouble getting sufficient lower back coverage without the stim just throbbing under my ribs. She got it to an "OK" level before I left, but when I meet with her in a couple of weeks, we need to work on it some more. Also at that time, she is going to turn on the Auto-Stim function, so I won't have to carry my remote everywhere around the house to change my programming when I get up, sit down, lie down, etc. I am very much looking forward to that!

I am also happy to say that I have been able to stop taking the OxyCodone, and am now back down to taking Hydrocodone. That is HUGE for me, and I am very excited!

I'm still having difficulty sleeping at night, but I think that is because of surgery pain - the "pocket" where the battery is implanted is still so very sore, which makes it hard to get comfortable for any length of time.

My thoughts are with you as you continue on your journey, and my prayer will be that pain will be but a memory, and hope your new best friend!

=Becky
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Old 01-08-2014, 09:37 PM #13
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Default Auto stim

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Originally Posted by chrelsey View Post
Pam - I was glad to hear that your lumbar pain had been helped, and then saddened to read that it was back. I hope they can get both of those sorted quickly for you.

I had my staples removed two days ago, and my Medtronic's rep worked on my programming a little bit. We're having a little bit of trouble getting sufficient lower back coverage without the stim just throbbing under my ribs. She got it to an "OK" level before I left, but when I meet with her in a couple of weeks, we need to work on it some more. Also at that time, she is going to turn on the Auto-Stim function, so I won't have to carry my remote everywhere around the house to change my programming when I get up, sit down, lie down, etc. I am very much looking forward to that!

I am also happy to say that I have been able to stop taking the OxyCodone, and am now back down to taking Hydrocodone. That is HUGE for me, and I am very excited!

I'm still having difficulty sleeping at night, but I think that is because of surgery pain - the "pocket" where the battery is implanted is still so very sore, which makes it hard to get comfortable for any length of time.

My thoughts are with you as you continue on your journey, and my prayer will be that pain will be but a memory, and hope your new best friend!

=Becky
Hi Becky! turns out my rep is overseas! but she texted me and told me what to do to change the programme. So we have changed it to power 2/ level 6 this morning. Gosh, mine must be on auto from day one. All I do is charge mine every morning. the remote is on top of my dresser to remind me to take it when I go to have X-rays on the 20th to turn it off. Other than this morning when I turned it up as directed I don't touch it. I would be going nuts having to carry it everywhere with me and having to adjust it each time I sat or stood. What model is yours so I can google it. Mine is Nevro Senza SCS HF. Really hope you get the auto done ASAP.
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Old 01-08-2014, 11:20 PM #14
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So, a bad night last night, the left hip pain is back, thoracic pain high! hand and arm pain excruciating with no way of reducing it and the headache still there. Been using cold packs on my head, back and hip. Succumbed and took Targin 10/5 in the afternoon and suffered a very upset tummy, not sure if related or just stress.

My PM is back this week, as is the Nevro rep so will try and contact them and get this programming sorted, I thought she would have contacted me by now. My PM wants to see me when I see her, the PM is great, any visit with the rep is with him present, unlike other stories I hear where the PM no longer, or rarely involves them-self.

Am resting today, no energy to move, it's also very hot being summer here.

Pam,

Do what you need to do to help you thru this rough time.

More prayers coming your way.


Gerry
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Old 01-11-2014, 12:45 AM #15
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Heart And MORE and MORE

Yup, Pam, prayerz are in no short supply here......

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Old 01-11-2014, 07:51 PM #16
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Frown Turned it off

I've turned the stim off this morning to see if its what is causing the constant headache. The hip pain has returned with a vengeance at night when lying down, I'm not sure about when out and about as I haven't been well enough to be out and about! Oh I wish.
Mid week I felt well enough to try some walking and did 20 minutes but the remainder of the day and those that followed have been driven by this constant headache pain. Panamax does nothing for it, I drink 2 litres of water daily so I know it's not dehydration (it's very hot here, yesterday it was 44c in the shade, today will be 41c).
I've taken my normal meds, 20mg oxy, 10mg Lipitor, 50mg Pristiq, 2mg Progynova and 2 Panamax in the morning each day with Panamax every 6 hours, in the night 25mg Valdoxan, 12.5mg Serequel. All have their own side effects, but I've been on them for over 12 months so don't think it's them causing the headache.
The stim has been off for about an hour and I've developed this pulsing pinching pain on the left side just adjacent to where the hip pain kicks in, nerve pain I imagine. The left hip pain I'm sure is referred pain from L3/4. The left arm/palm tingling pain is there, noticeable today but not yet intolerable, I'm sure by the end of today it will be zinging seeing as the stim is off. Where I had the fusion done L4/5 S1 has been giving sharp on and off pains this week and has settled to a dull throb, just above L2/3 is a stabbing pain. So, it will be interesting to see if its the stim causing he headache? Anyone else experienced this? I worry about the headaches as they said the seizure I had in August 2012 which caused the thoracic fractures was due to acute headache pain.
I see my original neurosurgeon on the 20th, he referred me to the new PM specialist and he was not aware hey were doing the SCS, I wonder what his reaction will be.

Last edited by PamelaJune; 01-11-2014 at 07:53 PM. Reason: Spelling
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Old 01-12-2014, 12:55 AM #17
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For Pam. For You.

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Old 01-15-2014, 08:24 PM #18
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Unhappy Nevro senza

Well, I turned the stim off for 24 hours and yes the headache abated. I turned the stim back on using P1 L6 to begin, moved to P2 L4 and then back up to P2 L6. The headache is still there but not intolerable like it was. As for my back and left arm pain, well with the stim off it was excruciating and dare I say it, acute! With the stim on now, it's still high and these last two days have been very bad.
My rep is back from holiday and I will see her along with my PM. Given the level of my pain I think we will have to move forward with the laminotomy and paddle insertion because I'm not getting much relief. My pain levels are around 7 on avg and I'm not even leaving the house. I can't spend the rest of my life like this!

My husband got home 20 min early from work last night, I greeted him in the driveway and said "thank god you are home" and he replied, you look terrible. I wasn't even well enough to cook so he went back out after sorting the dogs and got pizza which I ate in a daze.

My husband is my lifeline, he works 12 hour shifts and has a 14 hour day incl the drive to and from work, then gets home and has to sort the animals. The 3 dogs are working dogs, although 2 are now retired and are my guardian angels.

I so want my life back, I had hoped so much the one lead would work but it seems not to be. The pain just seems to be in keep on keeping on mode. Not happy!
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Old 01-15-2014, 11:00 PM #19
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Pam,

You are most likely dealing with surgical, as well as your usual pain. I am so very sorry you are having to deal with this.

I myself, had an unsuccessful trial stimulator a few years ago. I deal with spine/PN pain but have been able to keep the pain at least tolerable thru a regular schedule of narcotic (Oxycontin/Percocet) meds. The hardest part was the acceptance of a life with pain; but I do whatever helps me get thru each day.

Will keep you in my prayers.


Gerry
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Old 01-17-2014, 06:02 PM #20
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Hi folks, I've got the stim now on P3 L6, for those wondering, that's program 3 and level 6. From all that I have read, I'm lucky that I have the controls at hand and can program the stim myself. I knocked myself out on Thursday at the reps instructions and again yesterday, all to try and knock this headache out of the park.

To be clear, I took my normal meds in the morning at 4am (we are early risers even on Lyndon's days off) and at 3pm I took my evening meds and a 1mg Xanax. Straight off to sleep, Lyndon woke me at 7 for dinner which I ate in a daze and then straight back to sleep and up at 4am.

So I have taken the 1mg Xanax for two days straight and will not be taking it again any time soon. It's a horrid drug long term, yes it brings relief, yes it soothes your soul, but, it makes you forget what you have done and said while it's in your system and you can miss whole conversations and commitments, then, when you want to stop, it torments you with hideous withdrawal symptoms. I was on it in 2012 after the seizure for about 4 months and had withdrawal symptoms when I stopped and had to go back on and create my own plan of cutting down little by little to cease it.

My hubby is a drug detection officer and all our dogs are drug dogs, 2 now retired and active angels watching over me. Anyhow in many of the seminars hubby attends they now refer to Xanax as worse than heroin. It's that bad! Waking up this morning, the damn headache is still there along with the left arm, left hip and thoracic pain so even with the stim now at its highest the pain is not under control. I know the stim can work because I experienced relief from it in the early days and in the trial. There are days I wonder if in my past life I committed some heinous crime and paying for it in this life.

My best friend is hosting a girls get together tomorrow at 11am, smart casual dress and she has a photographer coming, she is very thoughtful, in our circle of friends many of the men have cancer or heart disease, or our parents suffering from cancer, dementia etc and she wants this day to be a celebration of life. They all accept I will be a wallflower just sitting and doing nothing, it's wonderful to have friends who are like family. My 82 year old mum is driving me there and I will taxi home as hubby working. Will leave home a little early and on the way drive past houses that mum n dad lived in when we were children. A little trip down memory lane may cheer me up.
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