Removal of Spinal Cord Stimulator
Posted , 23 users are following.
In March of this year, after 3 back surgeries, countless physical therapy sessions and many back injections, I opted to try a stimulator. The trial was with leads from Abbott formally St Jude. After 1 week and a total reprogramming, I had a major reduction in my pain. I was so excited. So we went for permancy.
My nightmare began, implanted was the infamous paddle not the leads as in the trial. Did not know could have insisted on the leads. Many surgeon’s and pain management prefer the paddle, as they say it has many more variables for programming, maximizing coversgeya d pain mgmt. NOT SO IN MY CASE.
I had. Programmer not really wanting to spend the time to get it right, few and far sessions that I finally complained to surgeon and the Company. Got a new programmer. He tried hard to find the right program and setting, but to no avail. So for 8 mos. to the day, I made the decision to have it removed.
It was not an easy decision. It never worked from the getgo. So on 11/2 of this year I had it totally remivedy. My surgeon said I did everything asked if me by her and the tech but nothing worked, As she was preparing to meet me in the OR, she was in total agreement with my decision. She knew of my problems with the original tech, his lack of compassion, concern and a rush to program me and leave.
It is out and now dealing with surgical pain again. I have no regrets with my decision. I will pursue, with a new PM doctor different injections that were not tried before. So if anyone is thinking like me, I say go for it.
For those whom it works, I say to you Thank God and I couldn’t be happier for you.
My journey with the Stimulator is complete and a new journey to find pain management begins. I am done with surgeries. No more. I think 5 is more than sufficient.
Good luck to all who are still on their Stimulator journey.
Dee
5 likes, 95 replies
Annab1983 DJ1976
Posted
Hey all,
I've posted several comments on this thread but I just wanted to ask everyone to please keep me in your thoughts over the next few weeks. I'm having surgery again tomorrow to have a pain pump implanted. I found out yesterday that a likely source of a lot of my pain is the T-2 where I have spinal cord impingement. Because I have such a complicated condition they won't do surgery on it because it may or may not help. Because of the twist in my spinal cord I will always have pain but they don't know how much it would be helped by decompressing the disc. So they opt for palliative care instead of a fusion.
Hopefully this helps and can get me back to being able to enjoy life again.
Thanks everyone for the support!
I'll let yall know how things go.
suzzie53205 Annab1983
Posted
allaroundanne Annab1983
Posted
I think that is an excellent option. This is a really simple procedure an is usually a pretty easy recovery. You have to take your post op instructions to heart about keeping that area around the drug pump dry and don't take anything but sponge baths until they say so. If it gets infected it can go right up the catheter into your spinal cord, so really be a compulsive nut about it all! But otherwise this is really minor surgery, it should go well and you should get pain relief right away with your surgical injection. I think you will be pleased!
Lynn ( thinking of you )
linda1718 Annab1983
Posted
Linda x
Annab1983 allaroundanne
Posted
My neuro surgeon tried several times to thread the catheter into my spinal cord and nearly gave up. I was on the table for 3 hours and 45 minutes. He ended up having to do a laminectomy because he could not access the area he needed to any other way. He told us that he was super frustrated and ready to close and accept failure. The only reason he didn’t is because he knows this is my last hope for any kind of quality of life.
So he got it all done, I spent a night in agony in the hospital and the next morning they offered me 1mg of dilaudid or my lesser oral meds and I could go home. So I took the lesser meds from them and before I was ushered out, I took one of the 4mg dinaudid pills my pain dr had given for post op pain. I was more comfortable once I got home than I ever got in the hospital. The bed made every part of my back hurt so much worse. I was at a 10 for 16 hours and once home I got to an 8.
One problem that has not subsided is a headache. It’s an extreme pressure that gets so bad I can’t move any part of my body. Can’t turn my head, talk, reach for anything or stand up. That has been a bit better today thankfully but I’m still in a lot of pain. My hips are on fire.
I’m hoping that this will start to ease eventually. They placed the catheter tip at T-6. I can’t wait until they start the meds. Hoping that swelling will be down enough for my appointment on the 30th....
still rough but hangin onto hope.
linda1718 Annab1983
Posted
Linda x
sheila22125 Annab1983
Posted
There is a support page on Facebook I just recently found "Failed Spinal Cord Stimulator"
Annab1983
Posted
I had noticed that I kept hitting my pump when I’d raise my arm or change my shirt. It turned out that the CSF hadmade its way around the pump tubing and my pump was floating in my stomach. It did flip and I was able to flip it back without much discomfort because there was so much fluid.
On the other side of it all now I can say that when I woke up, I felt a huge difference. No more headache! My back didn’t feel like I had a gallon of fluid putting pressure on the nerves causing the pain in my hips and legs.
So much better!!! The medication in the pump is providing comfort and relief to my upper back where I have CRPS. So at least for now there’s no more fire burning in my back. It does creep in at times, which really sucks but I’m reducing my oral pain meds and the pain is still well controlled.
I’ve been able to get in the yard and do weed eating again!! I’ve been kayaking and a lot more present in everyday life. I have hope that I’ll be able to get off the majority of my oral pain meds. I hadn’t dared to even dream of that before.
So things are looking up! I wish you all the very best! Sending you all a hug and wish for a peaceful, restful nights sleep. Take care.
I’ll still post as things change. Hopefully all for the better now though.
suzzie53205 DJ1976
Posted
Thank you for your story. It’s nice to know I’m not alone. And you would think that they would realize that the 2 different implant methods make a big difference! I had the same experience because of the way it was implanted during the trial and the permanent! I had posted earlier on this site that I had turned my stimulator off. After turning it off a week ago, I finally talked to Nevro on their customer service number they gave me after I posted on their FaceBook page. I’m still amazed at how terrible their customer support is and the lack of training and knowledge their staff has. The guy I talked to gave me another number to call. I did get a call back from that number after I left a message. The woman I talked to was very nice and told me my options. I can shut it off and have the rep put it in “stock mode” which puts the whole device in a holding pattern without losing any of its function should I decide to turn it back on at a later date. There was a couple of other options including removal that you chose or leaving it in and turning it on every other month and charging it and turning it back off. She told me if I removed it, it became their property again due to the information in it. I’m going to opt for stock mode right now. I honestly do not think I can handle another surgery. Good luck to you and I hope after you recover from the surgery to remove it, you are able to find some relief. I was wondering if they removed the battery and the paddle and wires? I have found a really good therapist that I sought out because I was so depressed from the pain and the change in my lifestyle I got lucky as she also deals with pain management through guided imagery and other options. She has suggested cannibus tinctures that are predominately CBD. My pain Dr said those are a good option as well. I do live in a state where marijuana is legal, but have had it suggested to me by way of conversation by my eye dr and general md. CBD does not have any THC which makes you high, but after researching, I’ve also been told by a couple of dispensaries I’ve talked to that the chronic pain and nerve damage that I have needs THC with the CBD to properly address the pain. I’m still deciding if I want to try this option. I currently take hydrocodone, but I’m still in pain and open to other options for pain management. My pain Dr prescribed the hydrocodone, and his office sells a DoTerra oil that recommend to try as they are not licensed to dispense CBD. The DoTerra did not help. It was Copaiba oil, but for me, I had no relief. I was retired from work on disability because I couldn’t sit or stand for more than 30 minutes at a time, And I have a 3 disc fusion. I’ve had every drug imaginable by pain Dr which none worked. And some were so mind altering, I couldn’t function. I completely understand where you’re coming from. Chronic pain changes your life. It is hard for anyone to understand unless they’ve experienced it. I hope that you find some relief. Please keep us posted on your next step.
DJ1976 suzzie53205
Posted
I agree with pretty much all you said. I am currently taking CBD oil minus the THC. On my third bottle. 250mg, 500mg now 3,000 mg bottle. Each dropper full is 300mg per dose. Taking it 3x a day. Still no major relief. So need to up the dose or try something else in that vein. I cannot take any pain medication the codones or codeine. So those opiods are out. Tramadol is an answer to some level. When the pain mgmt. Dr., who changed offices pretty much wrote me offafter 2 yrs. of working with me. Shocker. Her parting words were, look into a pain pump as they carry a whole variety of classification of drugs. I replied firmly, “hell no, no more surgeries, no more foreign objects in my body.” These neuro stims were supposed to work. Baloney. Sold a bill of goods. Have lost all faith in Drs. With their pie in the sky platitudes. They don’t seem to realize the lack of committment by these companies that make these products. The techs who program the stimulators don’t seem to like complicated patients and mine most certainly did not like my pushng for understanding and re programming. After 2 mos if installation, he informed me there was nothing more he could do. So much for telling the patients these stims. have a myriad of finite adjustments. HA! Didn’t happen my case. The Company, first St. Judes then Abbott don’t give a tinker’s damn about those of us who are not getting the pain relief. Most of us don’t expect miracles only sbout 50% of relief would have been acceptable. Lost faith in these companies, who get paid by either patient or insurance and could care less about OUR outcome. So today, I had my first accupuncture treatment. Hoping it will help. Gues we have to become our own Drs.
I wish allaroundanne, Lynn was still practicing pain mgmt Dr. She has more knowledge and advice for us here. She was very helpful to me. I hope you get the pain relief you need..
sheila22125 suzzie53205
Posted
There is a support page on Facebook I just recently found "Failed Spinal Cord Stimulator"
Annab1983 suzzie53205
Posted
I can’t believe that they didn’t offer to reprogram it for you. I met with my Boston scientific rep more than 8 times after surgery before I/we decided that it was just not a viable option for me. Because of the twist in my spinal cord, it was virtually impossible to get proper placement of the paddle and that was the cause of my pin. My drs thought of at least acted like it was completely impossible for the paddle to be causing my pain but once I got out of surgery, I could feel the difference. I do have permanent nerve damage now because of it though.
I wish you the very best. I hope you can get some relief. I know all too well how much it sucks when “our last hope” doesn’t work. I’ll keep you all in my prayers and send all the “good vibes” I can your way. Sending much love!
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suzzie53205 Annab1983
Posted
sheila22125 DJ1976
Posted
There is a support page on Facebook I just recently found "Failed Spinal Cord Stimulator"
DJ1976
Posted
I want to thank everyone for your support in my journey. I will keep you posted after my Consultation with this Dr. Next week..
Annab1983 DJ1976
Posted
I’m so happy to hear that there is at least some hope for relief for you. I know that hope is all some of us have. I pray that they can offer you something that can and will be able to change your life. I wish you the best and am looking forward to hearing back from you.