Spinal Cord Stimulator

I told my pain management Dr that the Nevro SCS was junk. His reply was " I've never been a fan of Nevro. "

Then why the hell did you promote it like the best thing in medicine since penicillin two years ago?

That tells you the medical device company is in his pocket.

Then he tells me to smoke weed for the pain! Thats a DEA violation! You cant prescribe opiods for a patient that tests positive for street drugs!

I assume he was trying to get me dumped from his clinic. I guess he forgot I was a Police Officer for 32 years.

Anyway, buyer beware. The Nevro unit does nothing for back pain.

All it did was make my wallet lighter .

Hey Ken,

I’m in a similar situation with meds. I had a Boston scientific unit implanted over a year ago. I have a very unique spinal cord rotation though. So exact placement of the paddle was virtually impossible. I was in excruciating pain when I woke up. It felt like a cattle prod between my shoulder blades and jellyfish across my back. That pain lasted for 9 months until I asked them to remove it. 

Some of the pain improved. I do have nerve damage from it now though. 

There is something you can try that is legal and may help. CBD oil really can help. It did help me. I got the kind that has no Thc so there’s nothing to make you feel funky and nothing to pop on drug screens. I can send you an invite for the company I used. It is the highest potency, best quality and best price that I found. 

I really can understand both of your situations.  CBD may not help y’all but it won’t hurt you to try it either. I wish you both the absolute best and I’m so sorry that your dr chose his wallet over patient care. 

Annab,

Thank you, but I've tried the CBD thing. I really didn't notice any pain reduction.

I've lost all hope on my back issues. Yesterday, I went for a second opinion for surgery. This Dr was supposed to be more aggressive than the pain clinic Dr.

He said to the contrary he is very conservative. He stated I would have to be opened up from my navel to my chest to fuse all of the bad discs and correct the scoliosis.

So, I'll just do my knee replacement and wait on my back issues. Mobility is kind of important to me as well.

I just wonder if I'll get pain meds for the knee replacement. I can see my pain Dr accuse me of Dr shopping.

Maybe bug the crap out of the Nevro reps too.

Still, dont believe the BS on the SCS implants. I asked the nurse about patients that have recieved the SCS implants, success rate. She replied "they get the implant, but they still want their meds" Well it doesn't take a genious to figure out you have an addict or the SCS implant doesnt work!

I really don't know what to do concerning my back. I've read of clinics in Germany that are using artificial discs with great results.

My wife is half German, so it could be a medical vacation. It would take a bite out of my retirement, but what quality of retirement do I have currently? If they would take me, I would definately go.

Good luck and blessings with your back pain. Im happy you found something that works for your pain.

Hey Ken,

I can't say that I noticed a reduction in pain but when I stopped it I did notice a pain increase. So it had been helping but on a level that I didn't "feel" actively. 

My back issues can't be fixed either. The rotation is from T1-the beginning of the lumbar section. I have fusion worthy issues in both cervical and lumbar as well. Because of the rotation in my spinal cord I have nerve pain through me entire back, arms going numb and pain, migrains, numbness and pain in my legs down to my feet. So I understand. 

When I asked if the rotation could be fixed he said it would take a thoracic surgeon and a neuro surgeon and the nerves are already so damaged that it probably wouldn't help much if at all. 

I'm only 35 and I was also recently diagnosed with CRPS in my back. So I totally understand why you would want/need to look for a fix somewhere else. I am so sorry that you are suffering. 

I hope you are able to talk with the clinic or even with some of the patients who have had the surgery there. I wish you the absolute best. Take it easy on yourself and rest as you need to. Take things one day at a time and enjoy the small successes like 5 mins of less pain if you can. I am here to support from this side and I'm certain that there are many others who would join around and support you as well. 

About this opioid "crisis"...I have a sincere belief that yjese "powers that be" have no idea what's going to happen.. Anyone who believes there is an "opioid problem"  now is going to see what it's really like very soon.  When people that really need pain relief (or the everyday scammer

'

Hit reply inadvertently, but  basically what I believe will happen,is those that rely on meds will end up having to do whatever is necessary. 

   

debby,

It's definately nice to rant about the SCS implants. My Dr just doesn't want to hear it. The only concern in the pain clinics of 2018 is compliance with the new DEA regulation of no more than 90 mg of morphine per day.

Did any Docs stand up and state it's absurd to make a blanket decision on care of chronic pain? I doubt it. Live my life for a week and see how you feel.

So, a six five 250 pound male with chronic pain is treated the same as someone half his size. I dont have the expertise to calculate the correct dose, but it sounds like using the same amount of ingredients for two dozen cookies as for one dozen.

I had almost the exact experience with my Nevro implant. The trial was great, except they kept it in for almost three weeks untill I could get another appointment. Also the Dr used ketamine for the anesthetic. That caused me to go completly beserk. My wife almost had to call EMS and the PD on me. Later my Dr told my wife it can cause a PCP type reaction in some people .What a freaking moron! I'm not a lab rat. Should have expected this. He is well known for his belief that the government is implanting devices in some citizen's brains to control their behavior. ( Im sure a google search will locate who he is)

Back to the topic... I guess I am fortunate to complete my career before my back made me retire. Actually, a fall from a Police helicopter was the end. That resulted in a permanently torn rotator cuff, and two complete removal of both meniscus tendons and a few of my disc herniations. All the PD was concerned with was I cracked their helmet.

I made it back to work for a couple of years, but I remember thinking on every call " how is this going to go down". It's time to go when that's in your head.

I'm with you. Out with the old, and let's go with SOMETHING different. The morphine pump sounds like my only choice. I'm sure they can tweak the dosage amount, and not worrying about a DUI for driving on pain meds is pretty important. Lucky I live in the boonies. Dont think another Officer would give me a break. They would be getting high fives from the rest of the agency.

Of course I'm not on much stuff anymore. But watching netflix and amazon everyday, and not being productive just bugs the crap out of me.

I was OK on the just two additional 20 mg of oxycodone for breakthrough pain, but that puts me over the limit. Their limit.

I just dont know how this spiraled out of control. If doctors aren't trained to recognize an addict from an accident victim they need to find other employment. How mwny CT scans and MRI's do they need to tell the difference?

When they start getting a load of methadone overdoses and new herion addicts it will be the same. I can hear it now, Addicts will start with "Well it all started when my dentist gave me three Vicodins for a root canal, and then I was hooked."

I dont know how Docs were educated, but I could a recognize a meth head in about a minute.

Oh well, life is full of bumps in the road . Except this one feels like a mountain. It's not too much when you have seen senseless tradgedy on a daily basis.

Blessings to all that have offered, and thank you for tolerating my SCS rant.

Just keep the DEA enforcing the cookers, borders and street pushers, and stay the hell out of my healthcare.

Dont they think they have enough on their plate? I've been hearing about this war on drugs since the 1970's and where are we now?

Put our $ on prosecution of violent offenders and leave us alone.

Every word written by you rings true for me as well, my meds don't work at all anymore, at least not to the point of taking care of any pain.  The morphine pump (intrathecal) is something I like the sound of,  The reading I've done says 2~5 mgs. of morphine per dose. WOW! Would be nice if that would work, IF the docs & insurance would do it. Other meds can be used as well instead of morphine....  I've been on one drug (pain) or another for many years & admit I'm sick of them.  And all of the other problems associated with them.  I rarely turn the SCS on anymore, and sometimes I'll turn it on, JUST TO SEE! if maybe it will work that time....

 I am just not ready to quit life...already survived a lot including the '60's. I would just like to be able to take a walk with my dogs again! Too much to ask I guess.  Humor is my best coping mechanism.   

 I have said it before too, that if the powers that be think they have a problem with opioids now, keep up what they are doing by taking legit patients' meds and then they WILL have a real problem. btw, I was glad to read your post....I know just what it is to sit & watch Netflix, etc...day in & day out.  Not a quality of life in case no one gets that!  I mean the drs. of course. I don't see a point in another re~program, it just is not working.    Best to you & everyone, maybe we will find some relief.  

 

I understand completely! I’m fighting to stay in the workforce. The intrathecal pump is wonderful because it bypasses the brain and gets to the heart of the pain in the spinal cord. I certainly recommend it. It’s already changed my life and I’m only 2 months in. 

There are many others who have tried everything else like us and have gotten the pump implanted. They have a lot more experience with it and can probably answer more questions that you may have but I am here if that’s of any use. Best of luck. 

I know it’s hard finding peace and joy when your in so much pain. Hopefully there’s at least a little joy in your lives and a smile and hug thrown in too. 

I’m sending hugs and smiles to you all. 🤗

Thanks again! I just replied to a post from you talking to someone else! oops! Anyway It's so good to hear this, thank you!  Just a matter now of seeing if the Dr. is interested in this and of course insurance will cover this. Really appreciate your post and so glad you have found some relief, great news!  I did ask a question in other post about the dosage amounts.  I read that doses can be 2~5 mgs.  I know each person  is different but wondered if it is true that the amounts are smaller due to the delivery system, going directly to "affected area"!  

 Anyway, thanks again for the post! Great to see someone is getting relief!!

Hey Debby,

Your very welcome. While I am young (35) I have lived with pretty extreme pain for my entire life. I just disregarded it as long as I could and then I started looking for answers around 18. I got some but it seemed that there has been a never ending revelation ever since. 

What you read is correct about dosing. It starts off very low because the concentration that goes into the spinal cord is very high. So it takes very little to make a very large impact. They will do increases a little at a time until its where it needs to be and your dr is satisfied. 

I am still working closely with my Dr to get things right but there has already been a huge change. 

Hopefully this helps to answer your question. 

Annab1983,

After my knees are replaced, Im definately going to request the pain pump.

I did get in contact with the Nevro rep and she is going to work with me weekly till I get some relief ( NO CONFIDENCE). At least I can explore all possibilties.

The pain management Dr has disappeared. No appointments, or contact, just a hide and seek game.

Ill try my primary care Dr, but that is a long shot. It seems once you are in a pain clinic , you are in it forever.

So, my future looks bleak at best.

Im happy that you have found some relief. My pain relief only comes out of a bottle. That has also been reduced by 70%. If I lose it, fine. Its nothing anyway. I get more relief from the heating pad.

Oh Ken, that breaks my heart. I guess Austin Texas has the only pain management dr who gives a hoot and isn’t in it for the money. 

I’m in a rough patch right now because I’m trying to get off of one of my meds but it’s more potent than what’s in my pump. So I went down but we didn’t increase the dose enough in my pump to compensate. So my shoulder blade and upper back in the area has felt like I’m being scorched since Saturday. It’s really really bad. 

Ever since they put meds in the pump after surgery I’ve been nearly pain free in that area. I just can’t let  myself get discouraged. 

Hang in there. How long have you been seeing this dr you have now?

Annab,

I've been at this practice for two years now. As for the doctor, I must have had at least four doctors and one P.A. "examine" me. I use examine loosely because Ive never been physically touched by any of the four. Except with a needle.

I feel for you because you are so young to have this pain. I managed to last twenty eight years in L.E. in San Antonio before I was injured.

I was dumped out of a helicopter in 2011 while spotting for wildfires. It was not the complete reason for my back problems, but it certainly exasperated my condition.

I did return to work for two years, but all the injuries caught up with me. I was medically retired in 2015. Along with my lumbar spine I have a permanently torn rotator cuff, and I need both knees replaced. The torn bicep and tricep I injured did heal well.

But yes, my spine Docs are jerks. Intill this opiod crisis, I would get a new script for either muscle spasms, sleep , or fibromyalgia.

After my total of twelve different meds, the " head pain specialist" called me in for a special appointment. The Doc accused me of being a pill seeker and said I was out of the practice. After the Doc saw my mri's and CT scans ( of everything) he changed his attitude. I didnt go to the clinic seeking pills, only pain relief. He did cut my pain meds considerably.

From six 20 mg oxcodones daily to three. I quit the oxycodone that night. No withdrawals or any of crap.

Then they stuck this trial Nevro SCS in my back that didnt seem to do squat. The Doc insisted that my attitude was great, and my pain levels were down, and the SCS Implant was the greatest thing since penicillin.

After three weeks with the trial SCS in, I just remember I would do anything to get it out.

It felt like I was stuck in a bad engagement, Ive already gone this far, so I guess Ill finish it.

That was one of my major mistakes. The Nevro rep after the permanent implant was never the same person, so it was like starting over every time. The last programming was January of 2018. This rep stated I had the SCS turned off for six months! So why didnt the rep I met with in late November of 2017 say that?

Also, getting a rep to reprogram the Nevro, is like getting an appointment to see a politician. It may make you feel good venting the ineffectiveness of the Nevro SCS, but Nevro has your money. They could care less.

I do have another appointment next week for more reprogramming from Nevro, put after twenty five times so far, a person loses confidense.

Im sold on the morphine pump. I'll wait till the end of August. If they dont get it right, then have it switched out from the SCS to the pump.

Sorry for such a long post. I'm so happy you have found some relief for your back pain. Hopefully, as young as you are, something new will come along. We are in the dark ages in orthopedic treatment compared to Europe.

Respectfully, and Blessings,

Ken

Annab,

I read your post onthe Otho surgeon too late!

Oh well, I dont want to start over again anyway. Im sure it would be injections and all the hoops I've jumped through this past year.

Dr. Simon seems completly competent. The Doc can do five knee replacements four days a week, all before lunchtime, he must be pretty good. He is also in the best surgeons in San Antonio magazine this past year. They probably pay the magazine for that, but it's somthing.

As for working all the time it was kind of expected of me. If I was at home before 10pm I was goofing off. She (THE SPOUSE) expected a certain income, and any less would not do! I had a part time job directing traffic for a school, and when school was out in June, she was lived! I was lucky and found another part time job working security at a Church. At least I didn't have to worry about being run over! It paid more and gave me more billable hours, so that was a win - win situation. No Sutherland Springs incident, but I like to believe the reason was the Church was protected by two well trained and well armed Officers.

Those days are over, and surprisingly, I don't miss it a bit. It's not easy being an A#!hole seven days a week! I still have testimony in Court cases pending. It's just a defense tactic to see if I move or die first. I'm not moving, that's for sure.

Blessings again on your health,

Ken