Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@joanland

Hi Ray, I take Gabapentin for bladder urgency, which may be different from your situation. W/o it I wouldn't make it to the bathroom in time. It is very expensive, but w/ appeal from my urologist the price drops to about 1/5 after insurance has paid.
I also have implanted a nerve stimulator which increases my bladder control. With both the Gabapentin and the E-stim device life is almost normal. I can certainly enjoy a concert, an opera, or a play
Wishing you the very best. Hope you have a good urologist to work with.
2° in Central Oregon at 10 AM.

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Hello again!
I have Modtronic Pain implant for failed Laminectomy, A nerve stimulater for bladder control?
My nerves a bad @ L-4 and L-5! I'm going ask my Pain Management DR. about that, E-Stim Edevice
Gabapentin does nothing for me.
Do you have to lay flat to see a Urologist? I can"t lay flat due to my failed Laminectomy.
Spine is a mess from S-1 up to L-5.
Thank You so much!!
Must be sooo cold out there!!!!!
I wish we had more help for Small Fiber Neuropathy!

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@joanland

Hi Ray-
It is a warm -1 here at 1 pm and snowing. Three neighbors are out removing snow.
I made a huge error. I take MYRBETRIQ, NOT gabapentin for bladder urgency. I wish I could remove my prior message with the error in it.
Joan

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Hi, Joan!
There's no need to say you're sorry. I may have been confused for a moment, but so many of the therapies, pills, and ointments mentioned by others here on Connect appear to have different and/or multiple purposes: some for pain exclusively, others for numbness exclusively, and still others for both pain and numbness. I get my medications mixed up in talking about them almost every day! It's a toasty +1º here; not snowing, but we've flurries in the forecast. Here's wishing you a fine weekend!
Cheers!
Ray

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@penn

Hello again!
I have Modtronic Pain implant for failed Laminectomy, A nerve stimulater for bladder control?
My nerves a bad @ L-4 and L-5! I'm going ask my Pain Management DR. about that, E-Stim Edevice
Gabapentin does nothing for me.
Do you have to lay flat to see a Urologist? I can"t lay flat due to my failed Laminectomy.
Spine is a mess from S-1 up to L-5.
Thank You so much!!
Must be sooo cold out there!!!!!
I wish we had more help for Small Fiber Neuropathy!

Jump to this post

Yes, it is a Medronic implant for bladder control.
Again, let me state I made a huge mistake in my earlier post. I take MYRBETRIQ for bladder control, not gabapentin.
No, you do not have to lay down to see a urologist. The only time I had to lay down on my back was when they used a specific CT to measure residual bladder contents, and, with an explanation of your failed laminectomy, a urologist can work around that. The CT for residual bladder contents is a new technique; they had previous methods that they can go back to. Best of luck to you!
(At about 2:30 pm it is now past the heat of the day and has dropped to -2 and is snowing hard in central Oregon.)

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I would like to hear more about the Medtronic implant.

We're still holding to a comfy -1º here in Denver. Snow on the way, however, but it doesn't sound like much.

Ray (@ray666)

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@joanland

Yes, it is a Medronic implant for bladder control.
Again, let me state I made a huge mistake in my earlier post. I take MYRBETRIQ for bladder control, not gabapentin.
No, you do not have to lay down to see a urologist. The only time I had to lay down on my back was when they used a specific CT to measure residual bladder contents, and, with an explanation of your failed laminectomy, a urologist can work around that. The CT for residual bladder contents is a new technique; they had previous methods that they can go back to. Best of luck to you!
(At about 2:30 pm it is now past the heat of the day and has dropped to -2 and is snowing hard in central Oregon.)

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Hello joanland,

BURRRRR it's cold out there!!!!!!!!!!!!
Thank You so much! I know of a good Urologist will call this week for sure.
Do you or anyone else nerve damage in the areas that. control bowel problems, passing stool?
Wishing you a good day!!

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@ray666

I would like to hear more about the Medtronic implant.

We're still holding to a comfy -1º here in Denver. Snow on the way, however, but it doesn't sound like much.

Ray (@ray666)

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Hi Ray,
About the implant, you have to find a Good Pain Management Doctor. Research.
I have the implant for many years and it works.
Same day surgery, Explain in lay terms.
A battery in implanted side of stomach area, than a Catheter is implanted from the battery up the spine. You are given a small remote device called a Bolus that you put over the battery that will start the Stimulater , in a short time you will feel relief from the spine pain. Medtronic is a good Company. I hope this helps.
N.W. N.J. only 1 heavy snow fall 12 in. We never get to 1 degree!
Stay Warm

the Stimulater, in a short time you feel relief from spine pain.

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The nerve stimulator makes the difference from being tied to the house and being able to live a relatively normal life. I do need to state that this in conjunction with taking Myrbetriq. The Myrbetriq does about half the job and the nerve stimulator does the rest.
Evidently I have a different model than Penn describes. My control device is implanted in a hip just under the skin and in a spot where you can reach it. Small leads go to the area of the vagus nerve in the spine. I have a small controller that looks like a small cell phone that controls the internal device. And to control that small controller it came with a dedicated separate cell phone that I use to change the settings via signals the separate cell phone sends to the controller which sends them to the implanted device. The recommendation is that a person with an implanted controller carry both the small controller and the dedicated cell phone used to signal the small controller - and to keep them charged at all time. This will mean charging them about every other day, or night.
A few months ago I did have to go to ER and needed an MRI. Fortunately with this system the device can be turned to MRI-mode -- if you have the controllers with you and if they are charged. Most ERs can charge the dedicated cell phone, but they cannot charge the small controller. One does not plan on visits to the ER - so it is wise to keep everything charged and to have them with you.
Is it a pain in the b--- to keep them charged and to have them with you at all times? Yes, it is, but if something is seriously happening, a lot may depend on you having them with you and ready to use.
All in all, I wouldn't be without the implanted device!

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@penn

Hi Ray,
About the implant, you have to find a Good Pain Management Doctor. Research.
I have the implant for many years and it works.
Same day surgery, Explain in lay terms.
A battery in implanted side of stomach area, than a Catheter is implanted from the battery up the spine. You are given a small remote device called a Bolus that you put over the battery that will start the Stimulater , in a short time you will feel relief from the spine pain. Medtronic is a good Company. I hope this helps.
N.W. N.J. only 1 heavy snow fall 12 in. We never get to 1 degree!
Stay Warm

the Stimulater, in a short time you feel relief from spine pain.

Jump to this post

Thanks, @penn. I did some reading up on the device (on Medtronic's website), and it appears the device is primarily for the relief of pain. I'm one of the fortunate ones (exceedingly fortunate!) who doesn't have pain as one of my PN symptoms. This is a seemingly endless quest we're on, all of us, looking for help with our individual symptoms. Thanks again, @penn, and I wish you well on your quest! –Ray (@ray666)

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Hi Ray!!!
Happy you don't have this pain!
Appreciate you letting me know!
HAPPY NEW YEAR!!

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Hello, @penn

I think of myself as very, very, VERY fortunate in not having pain. It was exposure to Connect that opened my eyes to how many of us live 24/7 with excruciating pain and how difficult it can be to lessen that pain. Until reading the many posts on Connect, I had been living in a bubble, believing that poor balance was all there was to peripheral neuropathy. I thank Connect for luring me out of that bubble.

Happy New Year to you, too!
Ray

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