Has anybody had an implantable neurostimulator for chronic pain?

Posted by zjandre @zjandre, Apr 13, 2016

Has anybody had an implantable neurostimulator for chronic pain?

Liked by bekie, grandmaR

@alysebrunella

Hi @zjandre, and welcome to Connect. I’m tagging @ladyjane85 and @mntnlaural as both members were recently discussing neurostimulators. I would also encourage you to check out the thread Chronic pain – Let’s Talk as I feel like you may find additional members to connect with in this group (https://connect.mayoclinic.org/discussion/are-there-any-discussions-for-chronic-pain/)

Are you considering an implanted neurostimulator or did you recently have one implanted?

Jump to this post

Great point medic7054!

I totally forgot to mention the leads.
Yes, at every appointment and just before your surgery be sure you confirm with the rep and the Doctor that you want to be sure all your leads are MRI Compatable and approved (that is if your unit is supposed to be MRI compatable).

After one of my surgeries I found out that one of the leads they decided would work best was not yet approved as MRI Compatable and even though they said it would be approved soon, the imaging places would not do my MRI.

Another item that was never discussed or explained well to me before my surgeries.

REPLY
@medic7054

@zjandre

I had one and then two stimulators placed to calm down my pain. They worked fine except every time I sat down I had to adjust the controls. I had to repeat this process when lying down, turning over in bed, and bending over. It just got too much for me, and eventually had both removed.

Jump to this post

Jim,
Have they not talked to you about recovery times and limitations? You should call your Doctor and get those instructions.

It varies a little bit Dr. to Dr. but basically you will be limited to lifting a max of 5-10 Lbs. that will last for between 8-12 weeks depending on the Dr.
They also limited me to no curling of the spine (like bending by curling your back) or twisting side to side in order to ensure the leads do not shift before they “heal” into place.

That being said, I stuck to those restrictions very militantly and I still had 2 different leads move on me (bad luck?).
That is when they sent me to a neurosurgeon who performed a laminectomy and secured them at the entry point not at the base of the spine.

Not that it will happen to you or that I have any statistical knowledge of the occurrence, but if for some reason the leads do migrate I would request to go to a neurosurgeon like described above – don’t just let the original Dr. redo it like I did 3 times ):

Again, I went thru a lot of surgeries, but I would do it all over again for the relief I finally got when the units were placed and secured correctly with the Burst Technology.

REPLY
@alysebrunella

Hi @zjandre, and welcome to Connect. I’m tagging @ladyjane85 and @mntnlaural as both members were recently discussing neurostimulators. I would also encourage you to check out the thread Chronic pain – Let’s Talk as I feel like you may find additional members to connect with in this group (https://connect.mayoclinic.org/discussion/are-there-any-discussions-for-chronic-pain/)

Are you considering an implanted neurostimulator or did you recently have one implanted?

Jump to this post

Jim,
The battery is located inside the control unit, so there is just one implant and the leads.

I had them at 2 different levels near the beltline.
The original one was right under the belt and I liked it there. The current one is just above and it bothers me because my belt actually digs in a bit below the unit.

They actually form a pocket below your skin to slide the controller in. For each of mine they cut a horizontal opening and that was the top of the pocket. I did not know enough to specify exactly where I wanted it and so when I said under the beltline like the other one was – i guess he just got it close. (not an earth shattering issue, but something I look back on and wish I had been clearer on where to place it).

My other one is on the left side of my back just about at the last rib. it can be annoying when I lie on something hard or against a metal chair or such. They said they could place it further away but that would require extension leads which provides another possible area for issues. So I decided not to add the extension leads.

Again, at the time I just wanted relief. Now that I have it, I wish I have been educated more about the possibilities.

Ultimately, the final decision will be by the surgeon during the operation – he’s the boss, but your rep should be there to ensure that what is done is in YOUR best interest.

Wishing you the best!
Carl

REPLY
@alysebrunella

Hi @zjandre, and welcome to Connect. I’m tagging @ladyjane85 and @mntnlaural as both members were recently discussing neurostimulators. I would also encourage you to check out the thread Chronic pain – Let’s Talk as I feel like you may find additional members to connect with in this group (https://connect.mayoclinic.org/discussion/are-there-any-discussions-for-chronic-pain/)

Are you considering an implanted neurostimulator or did you recently have one implanted?

Jump to this post

@cbrackle

Thanks, Carl. The rep has mentioned the placement issue. As I said, I’m thin, so having enough padding reduces the options. I think that I’ll ask about placing it as far left as they can, as I never sleep on my left side.

That long with no bending, lifting, twisting? My poor yards and pasture. I hope I’ll be able to ride my mower, at least.

Jim

REPLY
@alysebrunella

Hi @zjandre, and welcome to Connect. I’m tagging @ladyjane85 and @mntnlaural as both members were recently discussing neurostimulators. I would also encourage you to check out the thread Chronic pain – Let’s Talk as I feel like you may find additional members to connect with in this group (https://connect.mayoclinic.org/discussion/are-there-any-discussions-for-chronic-pain/)

Are you considering an implanted neurostimulator or did you recently have one implanted?

Jump to this post

Did I mention that the implant was moved forward to June 19, from July 19! That gives me only one week to do all the work that I thought I had another month to do. I’m afraid it won’t all get done.

Now that it’s only a week away, I’m starting to feel anxious about it. I struggle with anxiety disorder along with depression, so I’m wishing I could see the therapist more than just once this week.

Jim

REPLY

Wow Jim! That is quite a jump forward. That’s exciting! I hope everything goes well and you don’t get too anxious before.
I will be praying for you, your surgeon, his support staff, and the rep or local tech who will be observing and advising during the procedure.
Keep us informed on your progress and feel free to post or contact me personally if you want to talk about anything.
Carl

REPLY

I think what I wrote yesterday didn’t get public. Good news and bad news. The spinal cord stimulator implant that was scheduled for July 19 was moved forward to June 19. That’s the good news. The bad news is that all the jobs I had 5 weeks to complete are now crunched to one week! I’m really looking forward to having some relief from the pain in my feet.

Jim

REPLY

The implant surgery went well. 3 days after, the surgery pain is mostly gone. I’ll write more later.

REPLY
@jimhd

The implant surgery went well. 3 days after, the surgery pain is mostly gone. I’ll write more later.

Jump to this post

I had the controller activated this morning. It may take a few days before it’s working its magic. Now it’s my wife’s turn to get surgery. She needs a trigger finger release, which will be her 7th.

Jim

REPLY
@jimhd

The implant surgery went well. 3 days after, the surgery pain is mostly gone. I’ll write more later.

Jump to this post

Jim,
That’s exciting news for you!
I hope your wife’s surgery goes well also.
Sounds like she kinda knows what to expect.
Will be praying for both of you as you heal up.
Carl

REPLY
@alysebrunella

Hi @zjandre, and welcome to Connect. I’m tagging @ladyjane85 and @mntnlaural as both members were recently discussing neurostimulators. I would also encourage you to check out the thread Chronic pain – Let’s Talk as I feel like you may find additional members to connect with in this group (https://connect.mayoclinic.org/discussion/are-there-any-discussions-for-chronic-pain/)

Are you considering an implanted neurostimulator or did you recently have one implanted?

Jump to this post

Have angina and was informed from more than one cardiologist not to have this implant. With angina you need to be able to feel if this is a heart attack or heart pains. If you need it removed it’s not easy.

REPLY
@alysebrunella

Hi @zjandre, and welcome to Connect. I’m tagging @ladyjane85 and @mntnlaural as both members were recently discussing neurostimulators. I would also encourage you to check out the thread Chronic pain – Let’s Talk as I feel like you may find additional members to connect with in this group (https://connect.mayoclinic.org/discussion/are-there-any-discussions-for-chronic-pain/)

Are you considering an implanted neurostimulator or did you recently have one implanted?

Jump to this post

I have PRINZMETAL ANGINA and have the Stimulator however the Mayo Dr. said I had a very severe case and could not have bypass. I’ve had it 2 years and its been a blessing for me in helping with the pain

REPLY

Day 2 with the stimulator controller turned on. My feet hurt pretty much the same as before. I hope it gets better than this. The surgery sites hurt much less, but by the end of the day, I’m quite sore, and can’t lie on my back. The battery pack is quite prominent because I don’t have any body fat above the belt line where it’s implanted, so it could cause discomfort for a while. The incision for the wires is swollen a little, but I’ve probably been doing more than I should. Weeding, watering lawns and gardens, cleaned my bathroom, including polishing the tile floor on my knees. Don’t tell my doctor.

At the same time as all of this, I had a sleep study, and yesterday ordered a BIPAP machine, that will replace the CPAP I’ve been using for 15+ years, plus I changed from a full face mask to nasal pillows. The pillows are a lot more comfortable.

Talking with the therapist yesterday, I noted that my depression level is better than it’s been the past few weeks. I guess the stress and anxiety of having the implant has made me more depressed. I don’t know if I’ve mentioned my mental health issues in this group. I’m being treated for major depression, PTSD, anxiety disorder, and suicidal ideation. When chronic pain entered the picture 5 years ago, it exacerbated the mental illness. My last therapist moved to a new job 2 years ago, and I couldn’t get back into therapy for 18 months. I told my new counselor that he probably saved my life because I was having more thoughts of suicide the last 2 or 3 months before he came.

Past time for bed. I always look at the mail after cleaning up the supper dishes, so I tend to write at a late hour. I need to take my morphine and Clonazepam, rub Lidocaine cream on my feet, hook up to the CPAP, and sleep. Life is more complicated than it was 20 years ago, but God is still taking care of me, in spite of my inadequacies.

Jim

REPLY
@jimhd

Day 2 with the stimulator controller turned on. My feet hurt pretty much the same as before. I hope it gets better than this. The surgery sites hurt much less, but by the end of the day, I’m quite sore, and can’t lie on my back. The battery pack is quite prominent because I don’t have any body fat above the belt line where it’s implanted, so it could cause discomfort for a while. The incision for the wires is swollen a little, but I’ve probably been doing more than I should. Weeding, watering lawns and gardens, cleaned my bathroom, including polishing the tile floor on my knees. Don’t tell my doctor.

At the same time as all of this, I had a sleep study, and yesterday ordered a BIPAP machine, that will replace the CPAP I’ve been using for 15+ years, plus I changed from a full face mask to nasal pillows. The pillows are a lot more comfortable.

Talking with the therapist yesterday, I noted that my depression level is better than it’s been the past few weeks. I guess the stress and anxiety of having the implant has made me more depressed. I don’t know if I’ve mentioned my mental health issues in this group. I’m being treated for major depression, PTSD, anxiety disorder, and suicidal ideation. When chronic pain entered the picture 5 years ago, it exacerbated the mental illness. My last therapist moved to a new job 2 years ago, and I couldn’t get back into therapy for 18 months. I told my new counselor that he probably saved my life because I was having more thoughts of suicide the last 2 or 3 months before he came.

Past time for bed. I always look at the mail after cleaning up the supper dishes, so I tend to write at a late hour. I need to take my morphine and Clonazepam, rub Lidocaine cream on my feet, hook up to the CPAP, and sleep. Life is more complicated than it was 20 years ago, but God is still taking care of me, in spite of my inadequacies.

Jim

Jump to this post

Jim,
From my past experience (7 implant surgeries in the last 3 years) I felt the most pain in recovery around days 4-7. Hang in there it will improve pretty quickly after that.

Also, YES! you are overdoing it. Your body needs all the rest it can get in order to heal.
Especially avoid any of the activities that require bending or twisting your torso. I was told that could pull one of the leads out of position and so not get optimum performance or coverage.
Of course, now I figured out that most of that was just a way for the Dr.s to blame any complications or less than perfect outcomes on something other than their surgical ability.
But I still think it is logical advise to follow.

I hope your recovery goes well and they can adjust it to get the best outcome for you.

Carl

REPLY
@jimhd

Day 2 with the stimulator controller turned on. My feet hurt pretty much the same as before. I hope it gets better than this. The surgery sites hurt much less, but by the end of the day, I’m quite sore, and can’t lie on my back. The battery pack is quite prominent because I don’t have any body fat above the belt line where it’s implanted, so it could cause discomfort for a while. The incision for the wires is swollen a little, but I’ve probably been doing more than I should. Weeding, watering lawns and gardens, cleaned my bathroom, including polishing the tile floor on my knees. Don’t tell my doctor.

At the same time as all of this, I had a sleep study, and yesterday ordered a BIPAP machine, that will replace the CPAP I’ve been using for 15+ years, plus I changed from a full face mask to nasal pillows. The pillows are a lot more comfortable.

Talking with the therapist yesterday, I noted that my depression level is better than it’s been the past few weeks. I guess the stress and anxiety of having the implant has made me more depressed. I don’t know if I’ve mentioned my mental health issues in this group. I’m being treated for major depression, PTSD, anxiety disorder, and suicidal ideation. When chronic pain entered the picture 5 years ago, it exacerbated the mental illness. My last therapist moved to a new job 2 years ago, and I couldn’t get back into therapy for 18 months. I told my new counselor that he probably saved my life because I was having more thoughts of suicide the last 2 or 3 months before he came.

Past time for bed. I always look at the mail after cleaning up the supper dishes, so I tend to write at a late hour. I need to take my morphine and Clonazepam, rub Lidocaine cream on my feet, hook up to the CPAP, and sleep. Life is more complicated than it was 20 years ago, but God is still taking care of me, in spite of my inadequacies.

Jim

Jump to this post

Carl,

Can I get the leads checked to see if they’ve moved?

Jim

REPLY
Please login or register to post a reply.