Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Neurostimulator

Neuropathy pain

  • Please log in to reply
21 replies to this topic

#1 Kamlesh

Kamlesh

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 17 November 2011 - 03:04 PM

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


#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 18 November 2011 - 02:17 PM

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
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 18 November 2011 - 03:20 PM

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
ISN Chat Host
International Scleroderma Network (ISN)


#4 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 18 November 2011 - 11:44 PM

Awe Kamlesh - So sorry you are having to deal with this. I hope you find relief soon!

#5 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 19 November 2011 - 04:14 AM

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)

#6 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 19 November 2011 - 04:45 AM

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

#7 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 19 November 2011 - 03:11 PM

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)

#8 Kamlesh

Kamlesh

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 21 November 2011 - 02:07 PM

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


#9 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 23 November 2011 - 07:52 AM

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

#10 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 25 November 2011 - 07:04 PM

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!!!!!

#11 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 06 December 2011 - 08:39 PM

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.

#12 Kamlesh

Kamlesh

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 10 December 2011 - 10:14 PM

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


#13 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 11 December 2011 - 01:32 AM

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
ISN Chat Host
International Scleroderma Network (ISN)


#14 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 11 December 2011 - 02:29 PM

Hello Kamlesh

You must be so disappointed this hasn't worked, I know I would be. I am sorry.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#15 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 12 December 2011 - 02:50 PM

Kamlesh,

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

Buttons

#16 Kamlesh

Kamlesh

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 13 December 2011 - 11:13 PM

I have mixed feelings about the failure. It was causing severe vibrations and was not masking pain. On Tuesday, 12/13/2011, Neurostimulator is taken out.

What is causing my pain? My doctors checked all medications, any medications like statin are removed; there is not muscular degeneration.
It is back to two remaining options:
  • Keeping on trying medications (opened a new thread). I will try one in couple of days
  • Try to live with the pain. I am not sure I am ready to retire yet, but might be forced to do it.

Thank you everyone!
Kind regards,

Kamlesh


#17 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 14 December 2011 - 09:39 PM

Kamlesh,
Just wondering, how long have you been off the statin? I was having terrible leg pain and took myself off it and it took 2-3 weeks for me to really feel the difference.

miocean
ISN Artist

#18 Kamlesh

Kamlesh

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 20 December 2011 - 11:42 PM

Hi Miocean,
I am off statins as well as Cochicine which my doctor prescribed to help with Scleroderma, for over 4 months now.

All,
Thank you for your love and kind words.
Despite being on maximum dosage of one of the medications for Neuropathy, my pain level continues to rise.
I have started an anti-seizure medication last week.

Sheryl,
I love to be in nature and as soon as I feel good, I rush out for a hike.
My doctors also suggested that building leg muscles will have good benefits for Neuropathy pain.

Thank you all and lots of love and hugs.
Kind regards,

Kamlesh


#19 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 21 December 2011 - 05:18 PM

Hi Kamlesh,

I am also on anti-seizure medication for pain. I had to very gradually increase the dosage, to make sure I tolerated it okay, and also to find the level(s) where it worked. Anyway, so far, it has worked very good for me, in combination with many other things like physical therapy and epidurals, plus pacing myself very carefully, etc.

I am impressed with your love of nature. I share that interest, although you are far more enthusiastic about it!

Like many of us, I believe strongly in things that we often take for granted before illness, such as the absolute importance of things like nature, serenity, beautiful music, using our creativity, and becoming very immersed in anything we love. It sure doesn't solve or cure anything, but it makes our time and lives more meaningful and happier and thus we are better able to hold up emotionally to the demands of illness that require extraordinary grace and determination for each of us to navigate each day.

Sometimes, its like the old (sick) golf joke about hit the ball and drag Harry, except for us, it is, hit the ball and drag scleroderma!

So, two thumbs up for your love of nature and I hope the new med helps you enjoy the outdoors a little bit more.
: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.

#20 Kamlesh

Kamlesh

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 03 January 2012 - 11:27 PM

Hi Shelley and all other friends,
I started one of the anti-seizure medications early December and I am already on maximum recommended dose by my Pain Management doctor. I have increased the dose every week. I have few days when my pain level stays in the range of 4-5, but still majority of days I'm in extreme pain.
I am not sure, if I have any other choice other than trying 7-8 anti-seizure medications one at a time for 6-8 weeks.

It is long and difficult road ahead.

I am not feeling good with the option for implanting drug delivery pain to deliver drugs directly to spinal cord after failure of Neurostimulator trial.
Kind regards,

Kamlesh






Also tagged with one or more of these keywords: Neuropathy pain