Kamlesh

Neurostimulator

22 posts in this topic

Dear Friends,

I am coming back after few months. I hope everyone is fine.

Recently, I have having issues with Neuropathy pain in my lower body and hands. I have gone through several medications and found little relief and considering Neurostimulator by Medtronic (probes are inserted in spinal cord and electrical pulses stimulates spinal cord).

I will sincerely appreciate anyone who has gone through the procedure or any feedback.

 


Kind regards,

 

Kamlesh

 

 

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Hello Kamlesh

 

Welcome back! The only thing I could find was a thread by Peggy in which she talks about a procedure in which needles were put into her spine for neuropathy, is this what you're referring to? Here is the topic in which Peggy talks about the final results of the procedure.

 

I hope this helps and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

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(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

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Hi Kamlesh,

 

It's lovely to hear from you again, although I'm really sorry to hear that you're suffering Neuropathy pain in your lower body and hands.

 

Thankfully, I've not had that problem, so can't advise you from my own experience but I've included a couple of links to Neurological Involvement and an interesting article on Neuropathy which does mention the treatment about which you were enquiring.

 

I do hope some of our other members will be along to give you some first hand advice.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Kamlesh, I am so sorry to hear that you are having more issues to deal with. I was hoping all the walking and sight seeing would help you to feel so much better. Keep us informed on what you decide to do.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Kamlesh

 

I have a Medtronic neurostimulator for bowel issues, as you say it is placed in the lower back with a battery placed under the skin in my buttock. I had this done because of nerve damage and the information they gave me at the time did say that they are also used for pain. When they do switch it on there are lots of different settings which can be used. It helps me but I don't know how good it is for pain, I suppose it's a bit like a permanent tens machine. If you do decide to have one fitted you will not be able to have MRI scans in the future which is something else to consider.

 

Buttons

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First of all, Buttons! Is it the neurostimulator in your bowel area that makes your eyes that wide? :lol: I'm probably not that funny, but it did give me the giggles.

 

Kam, the link about Peggy will be encouraging to you. She and I are very close on another site, and she has really had relief by her procedure. I hope if you go that route, it will work for you as well. Hang in there buddy.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Peggy,

I am scheduled to go through the trial and if everything works out OK, final procedure next.

Can you please share your experience after the final procedure? What you can do or cannot do. How successful it is to relieve pain. If necessary, please send me private message. I am trying to find how effective are these devices for pain from autoimmune disease. I have spoken to Medtronic who manufactures these devices and they could not find any information.

I have also left a private message for you.

 

Hi Buttons,

How is your experience after surgery?

It is good know about MRI scan as I go through MRI scan on yearly basis for my lung issues and my pain doctor did not mention it.

 

Sweet,

It will good to talk to Buttons about her experiences after surgery. I have sent her private message. I will greatly appreciate, if she can help me.

 

All,

Sincerely appreciate your kind word. Neurostimulators are used for all types pains, but primary usage is people with spinal cord damage. I am not successful in finding out how useful are these for Neuropathy pain from autoimmune disease.

 

Sheryl,

Yes, I continue to go for walks/hikes primarily because my doctor advised it will help in reducing neuropathy pain. In addition, being in nature is super healing medication itself at least for me.

 

Thank you everyone!


Kind regards,

 

Kamlesh

 

 

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Kamlesh, the surgery was not too bad. I just felt a little uncomfortable when sitting down but it soon eased. I had all stitches removed after 2 weeks - no showers or baths during this time which I found the worst part! I was not allowed to lift anything heavy for about 4 weeks and was told not too overstretch or bend right over (not that I could do that properly anyway).

 

After everything was healed the only thing I have been told is that I should still not overstretch in case it displaces the wires. When going through the airport I have a special card to carry so that I do not need to go through the big scanners and the other is of course no MRI scans. For me that became hard when I needed scans for my neck but instead had to have a CT mylogram which meant a 1 day stay in hospital.

 

Most of the time I don't notice it and at my last check up was told my battery could last for another 28 months.

 

Buttons

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Hi Kamlesh,

 

It was so good to talk to you! This has been such an answer for me. Like I told you, the pain scale for me on my legs, lower spine and hips is an 8-10. At least with this device I am able to cover it up with the sensations. I can't imagine what it would be for me if I didn't have this other than I would be in a fetal position in bed in such pain. Even with this I am still laid up a lot of the days with the pain. I now have pain all over from Polymyositis, the sclero and fibro. I so hope this is a success for you. I will also send you a personal message to you with my emails. Good Luck!!!!!

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Kamlesh, have you had your trial of the neurostimulator, yet? I am thinking of you, and hope that all goes well.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Shelley,

 

I had the Neurostimulator implanted on December 8, and it will be taken out next Tuesday. Yesterday, the person from the device company came to change settings.

Unfortunately, it does not seem to provide relief for me. My brain still gets the same pain along with signal generated by prongs as a vibrating feeling in my brain.

 

Looks like I need to find some other way to find relief or just learn to live with the pain.


Kind regards,

 

Kamlesh

 

 

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Hi Kamlesh,

 

I'm so sorry to hear that the Neurostimulator wasn't successful and that you haven't had any relief from the pain you're suffering.

 

I'm thinking of you and hoping that perhaps your doctor might be able to suggest something else to help you cope with the pain.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Kamlesh,

 

Sorry to hear that this hasn't worked out for you.

 

Buttons

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