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Spinal cord stimulator implanted .

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1 year 5 months ago #26880 by jo.m
jo.m replied the topic: Spinal cord stimulator implanted .
Well its a few days after having the Spinal Stimulator Trial removed and I'm still processing my options.

It certainly had a significant difference with my lower back and leg pain but the one in my neck wasn't so good. Since I've had it removed I've had physio and acupuncture which both leave me feeling bruised and tired after, but do give some relief. I feel I need to weigh up my options before proceeding with another procedure. I want to chat with the Dr to ask about my neck as his registrar did mention other options when he removed the leads.

Who knows what the new year will bring but I know if I can just reduce my pain a little without increased medications that is my preference.

I hope you are all not suffering too much 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 5 months ago #26881 by bluerob
bluerob replied the topic: Spinal cord stimulator implanted .
Jo

I really hope that whatever decision you make is the right one for you.

Peter, I've re-read your post about 10 times and I feel very, very sorry for you.You've certainly had a bad time.

Since my drama started in Dec 2009 (that was my 1st lumber surgery...I had cervical surgery in 2005 with the infamous Dr Suresh Nair..., he actually fixed my problem for a few years until I had a "redo."). As mentioned previously, I've had 8 x spinal surgeries plus the trial of the stimulator. I've had 10 x surgeries if I include the cervical...which is slowly getting worse again (painful to lift my arms above shoulder height).

My point being is that over the last 6 years, I've bought nearly every book that's available on "spinal health." My conclusion (recently ratified by a neurosurgeon based in the US that I met) is that enough isn't known to "cure you of you're problem and I thoroughly suggest you continue to use your mind..." That comment was made by a neurosurgeon who I met who I was seated beside on a plane trip recently and noticed a book I was reading about healing your spine.

Yep, sounds crazy, but, it can work...well, for me. I totally understand that everyone is different and we all have different problems, but, in essence, the same...spinal damage.

I'm supposed to have another fusion and refused admittion. I explained myself to my neurosurgeon who thankfully is broad minded...I've taken up Mandala art...colouring in at the sge of 49...Or I have my stereo blasting or I plug my guitars in and go crazy. I sweat like a pig with the pain, but, it soon reduces...then comes back...then I lay down and meditate. Then I go for a small walk...its murder sometimes, but, I push on...I've fallen over and had to crawl to a fence post to lift myself up.

I do still take opiates, but, somedays I avoid them. I do get the withdrawal symptoms, but, I ride that out along with the pain. Distracting my mind helps me. Like how I stopped smoking weed, instantly. It helped me with sleep, but, because of current laws, I'm not looking to add "criminal" to my records. I just stopped (after being a smoker for 30 years...with no withdrawals...weird, huh?).

Mate of mine spent a few years at private school, playing rugby and rowing then spent the school holidays working on the family farm.

He's had slipped/ruptured discs and was told "don't let them cut you" by someone and he didn't. He has pain after he pushes too far, but, he was the one who advocates that I learn about "using your mind to distract the pain." Encouraged me to learn all that I could...so, I have tried. He still drives a tractor and harvester around and musters sheep on a 4 wheel bike and a horse with cattle.

After speaking at length with the neurosurgeon on the plane (who was a US citizen visiting Australia and me emailing copies of my recent medical images, the comment made was "Yes, I can see why you're neurosurgeon is stating that you need further surgery), that person said to me "Rob, if you're able to continue to use opiates sparingly, eat healthy foods, exercise some and use your mind like you've described...keep going. We don't know enough about the spine to give a 100% diagnosis like you can with a broken finger." I've heard that elsewhere, but, can't remember who told me.

So, today is a bad day...I'm typing this message in pain, but, trying hard to not to think about it...hard to do, when you're typing about it....

I hope that all who read this post try somewhat...I know its bloody hard...but, try hard enough and you might find some relief....I don't have a big support group around me. I pay for cleaners and I pay for alot, but, being without a family to support helps me do that. I feel like I've won something after I get home from my local beach.

I really hope that your weekend is better than yesterday....

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1 year 2 months ago #27289 by Naf
Naf replied the topic: Spinal cord stimulator implanted .
Hi Im looking to chat with people that have had a dorsal root ganglion stimulator implant.

Thanks
Nathan

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1 year 3 weeks ago #27517 by Johnno
Johnno replied the topic: Spinal cord stimulator implanted .
Hi Naf,
If you scroll back in this post you should get some educated reports jo.m has had a lot of procedures so her or look up some the soothsayers on site .

Cheers mate
Johnno

as long as I wake up alive I'm happy
Because it could be worse

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1 year 3 weeks ago #27518 by Johnno
Johnno replied the topic: Spinal cord stimulator implanted .
Hi Bluerob ,

Mate I know how you feel the bad days are the worse because you try to be strong but on the inside your crying out for help, the words flow as effortlessly as the tears you can put your feelings on the table and no one can see you cry all you want is the pain to just bugger off and give at least one good day in our dreams maybe but to wake up is a good enough reason to say it's great .
Johnno

as long as I wake up alive I'm happy
Because it could be worse

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9 months 2 weeks ago #27859 by Tim
Tim replied the topic: Spinal cord stimulator implanted .
G'day everyone. I wish I found this forum 3 months ago. I had a trial implant of the Nevro Stimulator in March which was extremely successful..for the first 4 days. My pain then started to return and, sure enough, remained for the rest of the trial. When the wire was removed the doctor commented that the wire had moved - had pulled out - quite a bit. However, given the initial success, and the Doctor and technician's muted confidence that they could deal with the pain because the electrodes would be fixed in place, I booked in to have the permanent implant, only to find that the Dr was going on holidays 5 weeks later so I'd have to wait 8 weeks for permanent surgery. I waited, enduring the pain as best I could.
Then again, I had immediate, almost total, pain relief for the first 10 days after surgery, only for pain to return again. When I went for the 2 week post-op .check-up the technician detected that the leads had moved! They send me off for an x-ray.
Anyway, I got a follow-up booking 2 weeks later and was informed that I'd need to see a neurosurgeon to pull the lead out, then cut me open to put what looked like a big screw into my spine to hold it in place. I thought they couldn't move!! The surgeon said this was the first time in his 320 implant history. Apparently the pain specialist surgeon can't do that kind of surgery (even though he put the thing in) and he referred me to a neurosurgeon to put the wire back in. He promised to send a referral off the next day and told me to ring the neurosurgeon on the following Monday for a time. When I rang on Monday the neurosurgeon had no referral. I rang the pain clinic back and got an answering machine saying the office was closed for 2 weeks, but would be monitored on Thursday mornings. So I rang the next Thursday morning to find that the surgeon was off on holidays for 2 weeks (again), and that I'd have to wait until he gets back for him to send the referral. When he finally sent the referral the neurosurgeon was on holidays, and so I'm still waiting another 2 weeks (this was 3 weeks ago) to see the neurosurgeon.
Anyway, has anyone else heard of the leads moving after a permanent implant? And can anyone else suggest why the pain specialist can put the stimulator in but can't cut it out again and put the plastic screw in the spine?
Having developed tolerance to Enbdone, Tramel (which was the only meds that gave any relief), I'm not trying to titrate up on Palexia; currently 150mg BD. Any comments on Palexia dosage that it effective?

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