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Wed, Sep 18 12:49pm · Has anybody had an implantable neurostimulator for chronic pain? in Spine Health

All,
If you are in or willing to travel to the Twin Cities area of MN Dr. David Chang does revisions where he will go up and remove the scar tissue from the previous attempts of other Dr.s and place the leads in the correct location.
He was the one I finally went to after 4 failed surgeries by the original Dr. to get it in the correct spot.

Carl

Wed, Sep 18 11:14am · Has anybody had an implantable neurostimulator for chronic pain? in Spine Health

FYI,
I have the DRG and the SCS from St. Jude (Abbott).

Originally I was told my SCS was MRI compatible. Then they changed the leads during one of my revisions and they now say the leads are not MRI compatible (or not approved yet – but that was 4 years ago).

I also have the DRG and they told me that I should not get an MRI since they have no trials showing that having 2 stimulators is safe in an MRI.

The point being that you need to make sure that not only the battery pack, but also BOTH your leads are ALREADY approved for MRI.

I just needed an MRI for my shoulder, but they said they would not recommend it. So I had a CT scan with contrast die which is much less accurate in certain diagnosis.

I no longer get any relief from my stimulators and am considering having them removed.

Carl

Wed, Sep 4 11:59am · Has anybody had an implantable neurostimulator for chronic pain? in Spine Health

Yes, I was on a very high dose of dilaudid for about 6 years till the “Opiod Crisis”. No side effects for me.

Everyone reacts different to different meds. Something pain docs have a hard time realizing even when it is presented to them.

Something the crackdown on opiods just makes harder.

The pain pump can deliver other meds too, not just dilaudid.

Wed, Sep 4 7:58am · Has anybody had an implantable neurostimulator for chronic pain? in Spine Health

Hi @jwhite59
In Oklahoma I originally had the standard leads. After the first failed install and the first failed revision they decided to put in paddle leads which then rotated 45 degrees so did not face my spine. Then a neurosurgeon did a laminectomy but “could not get the leads high enough due to scar tissue”
The fourth revision done here in MN was done perfectly and put into the original target zone, but for 3 years they have not been able to adjust it to be effective.
Not pushing it, but the only effective treatment
Since oral Dilaudid has been the Medtronic pain pump (which only case pumps Dilaudid). Changed my life.
I wish you the best of luck finding your solution.
Carl

Wed, Aug 21 11:14am · Has anybody had an implantable neurostimulator for chronic pain? in Spine Health

Hi Jim,
Just wanted to touch bases. As you know I had the Abbott Stimulator which tested good but upon installation and after 4 revisions gives me no relief.
I then had the DRG test and it was amazing. However, a few months after installation it lost its effectiveness on me also.

I’ve tried every tech in Oklahoma and now MN several times and they cannot get it to be helpful.

I’ve had them off for most of a year with tests when they try to readjust.

I was never told and did not have the initiative to find out that there were other options.

A friend asked if I had tried a Medtronic pain pump. I had to suggest it to my pain clinic and they said “yes, that sounds like a really good fit for you”. Can you believe they install them but never posed it as an option!

I had it tested and installed last January and it has been a literal life changer for me. It took a long time to get it titrated up, but it helps more than either/both stimulators combined and there is room for improvement as time goes on.

Just want to be sure you hear about the options before getting The DRG implanted.

I wish you he best of luck and am glad you found a med that helps.

Carl

Mon, May 27 11:48am · Botox for Migranes in Chronic Pain

HI,
I had severe crippling cluster migraines for almost 7 years. The traditional Dr's tried out every new anti-seizure and migraine drug that came out. The last thing in their bag was the Botox. 25 shots in the head later and it did not help at all. they said when a new drug came out they would let me know.

I finally was referred by a friend to a local Naturopath. He worked thru diet and nutrition. In 6 weeks they were down to 1/2 and in 6 months they were totally gone. I've only had a couple in the last 10 years.

Everyone's issue and body are different. And at the time, insurance would not cover it, but it was worth every penny to be cured.

We called him the Voo Doo Dr. (He thought it was funny) because he used the a method called Applied Kinesiology (muscle testing).

Many people (esp traditional Dr's and me at first) said it was/is quackery – I completely disagree now.
Traditional western medicine ran about $200,000 worth of testing and drugs on me and came up with nothing.

He "cured" me in 6 months.
Our bodies are incredible and able to repair themselves IF we have not already become toxic in areas due to our western lives.
He actually said – my goal is to get your body back to a baseline where your own immune system can heal your body.

I was at the point where I would try ANYTHING, so what did I have to lose – my migraines I guess.

Carl

Mon, May 20 11:26am · CBD oil for pain in Chronic Pain

Thanks Colleen,
I did not realize that either. Good to know.
Carl

Mon, May 20 11:23am · Undiagnosed Autoimmune with back pain, spasms, and stiffness in Autoimmune Diseases

Thanks John, it does not work for me either.
If anyone wants to get there just type in ilads.org into your browser it should pop right up.