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Spinal cord stimulator implanted .

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1 year 8 months ago #26860 by jo.m
jo.m replied the topic: Spinal cord stimulator implanted .
Hi Guys,
I've been a bit absent of late but last week I had a TRIAL stimulator inserted and go back on Tuesday to have it removed.

Due to my complex pain I had two leads put in two different locations. They placed the first lead in my neck to try and help my constant migraines, my shoulder pain and my CRPS in my Left Arm. Then the second lead was placed in my lower back for the back pain and pain in both my legs.

So far I have found it very difficult to give feedback!!! Did anyone else struggle? Its just that I have spent the last 16 years trying NOT to think of the pain and the last week having to focus on the pain totally!!! Then the giving of numbers and percentages frustrate me. I totally get what they have to do and I am trying to think like the NEVRO tech but processing it can be difficult.

Overall I have found that my back and leg pain has improved very well but my neck, arm and shoulder issues the jury is still out!!!

Apart from anything else I am allergic to tape and so the itching is awful. The bruising for the first 2-3 days was also very brutal. There are also lots of restrictions with your mobility and I feel like the movements that aggravate my upper body pain I am unable to do so I can't get a full indicator for those issues!!

A lot to think about after Tuesday to see if I will have a permanent implant. I also think that once it is removed where I thought it wasn't helping I might realise it was actually doing a fairly good job!!!

Would love to hear anyone else's experience with the trial and then the permanent implant.

Hope you are all doing ok today.

Jo :)

"Just thinkin' about tomorrow
Clears away the cobwebs and the sorrow 'til there's none

When I'm stuck with a day that's grey and lonely
I just stick out my chin and grin and say, oh

The sun will come out tomorrow
So you gotta hang on
'til tomorrow, come what may!"

Annie - The Movie
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1 year 8 months ago #26861 by bluerob
bluerob replied the topic: Spinal cord stimulator implanted .
Hi Jo

I've also had a 2 lead stimulator trial last year which was totally ineffective for me. I had to return each day for what was referred to as "pain mapping" where the technicians used a computer. They basically tried to get the electrical pulses to hit my pain areas.

Because the trial did nothing to help with my pain (I've had 8 x spinal surgeries - fusions etc ) the device was removed and the pain management specialist wanted to trial a 4 lead device.

I discussed this with my neurosurgeon who, thankfully, I have a great relationship with.

Because I have "structure issues" with my spine, he didn't believe that the 4 lead device would help with my pain and told me not to proceed with the 4 lead device and that I simply had to learn to live with the pain, continuing to use opiate medications ( Oxynorm, Oxycontin, Fentenyl patch).

My neurosurgeon also said these devices impede the ability to have MRI and CT scans should you need these in the future.

I've just been told that I need surgery no 9, but, I've refused this. I've recently read a book about using the mind to deal with pain....I know that this may read as "this guy is loony tunes.." but I seriously believe that with positive thinking and have a few hobbies to trick your brain. Again, I know this sounds like its crazy talk, but, this is definitely working for me...and I definitely don't want anymore surgery, nor am I interested in being a guinea pig for "trials of medical devices" so that I don't need opiate medications - I found the pain management specialist was focussed on getting me off opiates and had no concern with my "structural issues" with my spine.

Whatever you choose to do, I really hope that it helps you out.

All the best

Rob.

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1 year 8 months ago #26862 by Peter
Peter replied the topic: Spinal cord stimulator implanted .
Thanks Jo!

I hope that it works well, but I hope more that you make the right decision post trial and that you don't suffer worse pain for that decision.
Keep us posted!

Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)

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1 year 8 months ago #26863 by Peter
Peter replied the topic: Spinal cord stimulator implanted .
Hi Bluerob,

I have been living my life for decades doing exactly what you are talking about. I take minimal drugs, but suffer over 80% of my pain and the disabling effects of that pain, especially in my neck, shoulder and of course head.

I have a trapped nerve root in my C4 joint and my specialist says it is too high up for them to touch. He said the incidence of infection and disability due to further injury, is just not worth the risk. So, I suffer terrible pain from the left side of my neck down through my shoulder to my finger tips and up into my brain. Lots of bad headaches and migraines too.

My thoracic spine is stuffed. Two compression fractures long ago in 1985 or 86 (I can never remember which) now sees scar tissue interfere with the nerves that come to my chest and all its structures including my heart. So when I have done too much or the weather is changing, I get strong angina pain. In the late 1990s I had an angiogram and since then get checked regularly with ECGs, Stress ECGs, ecocardiograms and had a halter monitor 2 years ago as well. All is well with the motor.
And of course that doesn't help much when I am lying on my bed in a cold sweat with an Elephant sitting on my chest, my left side aching and me puffing away short of breath. It takes its tole sometimes, but once I realise the pain has gone on for hours and I'm not dead yet, I then do all I can to shrug it off and just accept it as just my back. That removes the stress, but doesn't stop the pain. Been living like this for a while now. Soon be 20 years.

My lower back of course, the spine is fusing itself, due to damage done when we got T boned when I was just 3 years old. My specialist said that either they fuse the spine and I will definitely suffer long term later, or let it happen naturally and it will be permanent with no bad effects, except that the degeneration will work its way up my spine and I will suffer effects from each joint as it goes.
Best advice I ever listened to. And i have not once regretted it!

When my pain is really bad, and I have just been through a 3 week flare up of my neck pain that never once went under 9 out of 10, I do all I can to distract myself. Plus I do more exercises and physical work. This seems to help me greatly. Now I am back to my normal 7+ out of 10.

There is a huge amount to say about the power of our minds. Notwithstanding that the power of positive thinking can only do X amount, but then we need outside intervention, the fact is, it can help be taking away the stress. And we all know stress just sends our pain through the roof, plus it gives an opening to depression.

So I am all for any type of personal work that will see me live with my pain and not have to take more drugs or have an operation.

Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)

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1 year 8 months ago #26865 by jo.m
jo.m replied the topic: Spinal cord stimulator implanted .
All I know Peter is that I'm not making any hasty decisions and not rushing into anything!

It needs to be for the right reasons and I totally agree with how you handle your pain as mostly I do it the same way. I can't take opoids as I'm highly sensitive and the pain levels constantly up in the high numbers is something that is challenging but depending on my mental state, depends on how well I cope with it.

I agree with you regarding the exercise. It can help you just need the right people guiding you within your limitations and it can have a positive effect.

Chronic Pain is something we need to learn to live with however I also think we should never give up hope that something might ease our pain and it doesn't have to be surgery or opoids just something that works for us individually.

A continuous journey for all of us

Jo xx

"Just thinkin' about tomorrow
Clears away the cobwebs and the sorrow 'til there's none

When I'm stuck with a day that's grey and lonely
I just stick out my chin and grin and say, oh

The sun will come out tomorrow
So you gotta hang on
'til tomorrow, come what may!"

Annie - The Movie
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1 year 8 months ago #26866 by Peter
Peter replied the topic: Spinal cord stimulator implanted .
Absolutely! That is the problem today. There is this attitude that one fix will help most or all sufferers. This is why they now have the problems of opioid addiction. Stupid thing to do in the first place.

We are all different and we will all approach our ongoing self management in the way that suits us best. I am most certainly not championing any one therapy or treatment. Even though I do what I do to help get through each day, I still suffer over 80% of my pain, which means my life, like yours, is always hard work. And that is what we all suffer.

I wish that those with the so-called knowledge and the power in politics, would actually listen to what we are trying to say. Maybe then they will actually do something to assist us, instead of saying you take this drug, or don't take any drugs, or just exercise, or, or, or, etc.

Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)

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