Hey there,
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.
Well I forgot to update but I ended up having a spinal fluid leak that made a big ball in my back. I went back into surgery on June 18 and the dr cut a muscle and made a patch and glued it over again to try and ensure it stayed closed this time.
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.
Hi ! I’m new here, i am a Nevro implant patient as well awaiting removal on 09/05/18.. My journey has been long..5 back surgery’s 7 including nevro process. Trial was completely different than permanent device. My experience with reps was good at first but the lack of response to implant brought snippiness, lack of communication , and well some colorful statements from my rep to my PM Dr. That are inappropriate at best. And then silence , no calls no communication from nevro in months. I’ve had the implant with wires for 15 mnths and been reprogrammed several times. No success. The odd thing is since the implant i can’t raise or lower my head , raise my arms even to wash my hair , if i do it’s like some stretching my spine beyond the max. Then major spasms! I’ve had swelling of the legs , all kinds of weird things. All the rep said was i don’t know !! Never seen that before . So .... it’s coming out and i have to say i really can’t wait. Not for me. THey are very quick to implant and if all goes well “awesome” if not , well That is a whole different ball game. I asked a lot of questions prior to implant , i thought i was prepared , i was not close to being prepared at all. I was not clearly informed of a lot of things that were to come and nevro needs to do a better job training reps for negative reapomses to the implant. Tie dropped like a hot brick. Sounds absurd ... but very true. Would love to hear if anyone has same or similar experiences as i was told this is he most bizarre thing they have ever seen. Thank for letting me vent ... best wishes to all on this journey with pain....
My surgeon said he can remove the battery, but not the wires as they’ve become attached to my spine by now. Has your Dr told you this? Are they removing everything? I have turned mine off again. I’m just done. And now I need an MRI of my head for another issue. The Dr who ordered that will only to a CT scan because of the implant. But I’ve talked to 2 people at Nevro who have said it’s fine to get the MRI. And I messaged my rep about it, but never heard from her. Their customer service really isn’t good.
I have to say it’s so nice to talk to someone about this, so no i wasn’t told that.. yet, my only option with he implant was a ct mylogram, which really wouldn’t be accurate . There are certain parameters to have mri that have to be followed and the question is would that be as accurate or clear as possible. I hear you!! I’m done as well, i have a lot of hardware and an old bone stimulator battery and leads and ect. It seems like a domino effect you fix one thing but it causes another !!. I refuse to take narcotics so this has been challenging at best , hence the purpose of the nevro.. bad idea
I am a Very, Very Happy person.
I have never heard of this , unhappy concept before…
I have had seven back surgeries, had a pain stim put in. I have had two batteries replaced.
My pain has Never gone away!
It has Never touched where my pain is.
After six (6) years, it’s coming out,!!!
My thoracic area where the leads are, hurts almost as bad as my lumbar.
Coming out… signed,
one very happy person.
I I am having mine taken out, it is not working and has never taken my pain away, or relieved it.
I’m I’m having mine taken out, because with it being in there and it not working,
my my doctor has wanted to do several MRI because of health issues I’m having, I need an MRI.
so why not have it removed?
wow wow! I have never heard that you could have an MRI with this implant in. I have always hurt if you have an MRI are are any much Danger. With all that Hardware inside there’s no way a person can have an MRI. so I was told by three doctors.
sorry, i was talk texting..
always heard)
My story is similar, trial worked good enough so decided to do the permanent without the paddles but ended going with them. From the get go it felt like I was ran into from the backside with a truck. Amplification always varied based on position and I noticed a serious drain in energy. I blamed all that on all the other problems but now 3 1/2 years later I still feel the implant into the spine, still sore at times. When pain gets bad and hypersensitivity kicks in it gets real bad and my energy level is still in the tank. Searching for a doctor now to remove this thing. The ones that install have a gimic set up to see you than when you are done with the pain meds and the problems occur you are out of contract. You are just dollar signs to them, need a doctor who cares and they are rare to find these days.
New Doctor has ordered a myelogram.
My husband has the same problem…he wants it removed but the pain management that put it in with the Orthopedic surgeon just ignores him, what should I do. He is in constant pain!
My husband has the same problem…he wants it removed but the pain management that put it in with the Orthopedic surgeon just ignores him, what should I do. He is in constant pain!
Hi, I had mine for 18 mnths and it was hell! never wprked and caused additional problems. My Neuro surgeon removed it and said whats the point leaving it in if its not working!! Its that simple! Its your choice to keep it in. Insist that it be removed. Its tour choice alone! Its your body. I am so glad I chose to remove mine and move on. you know your body the best listen to it! And if they do not listen find another surgeon who will!
Thanks for info, but also we on social security, will it be covered for removal?
Hi Dj,
I’m glad I found this forum so someone can answer my question. I had back surgery and all forms of other treatment that is available but unfortunately nothing worked. Last December I had the Nevro trial for 1 week and it helped about 30 to 40 % improvement. March 17 this year I got my implant. It’s been more than a month now but the rep from Nevro assigned to me has not been able to find a correct setting that would alleviate my pain. I was even better off before the implant. Even if I turn off the device it’s not the same as when I didn’t have the device. I’m starting to get worried that this device will not work for me. I’m thinking of waiting for a few more months and if still if it does not work, I might have it removed.
Is the doctor who implanted yours also the one who removed it? My doctor is s pain specialist .
I have Medicare and supplemental insurance who paid for the procedure. Do you know if they will also pay for the removal?
Thanks and hoping to hear from you or someone soon.
Ramon