[SFNgirl]

Hi, I've been on the peripheral neuropathy forum before but new to this one. I developed non length dependent small fiber neuropathy about one year ago, and have body wide pain, in varying locations, 24 hours a day. Before this, I was completely healthy. I am 43, and a mother of 2 great kids (10 and 8), and my wonderful husband is a stay at home dad. I'm currently on a medical leave because the pain is just too much for me to be able to travel and attend meetings as I should. I have a few neurologists, so far after tons of testing it has been deemed idiopathic, though my Hopkins neurologist believes it is likely due to an autoimmune issue. In addition to the pain from the sensory neuropathy, I have autonomic neuropathy, causing blood pressure, sweating and digestive issues. I have lost about 20 pounds, and also now have flashing lights in my eyes and ringing in my ears.

I saw a pain management specialist for the first time about a month ago, and he recommended the Medtronic stimulator. I'm wondering if anyone on here has small fiber neuropathy and has a scs? My doctor said typically its not used for SFN, but he thinks given that my legs and feet seem to be my more consistent and more intense pain, that this a reasonable thing to try.

I am now on day 3 of a one week trial and am cautiously hopeful. At first, I was dismayed, and surprised at the intense feeling of the tingling vibration, and couldn't imagine the idea of feeling it all the time. But I am getting used to it now and find that I prefer having it on to not. I can still feel the pain through the tingling, but does seem more muted, and it seems particularly useful in my feet for standing and walking. There are times, however, like last night, where my pain shoots to a 8/9 and this just can't compete.

Do others still feel the pain through the tingling? Do you keep it at a pretty high intensity? When you turn it off, does the pain seem even worse? For it to work, I really need it at a pretty high level and wonder whether I'll really be able to get used to it and actually be able to work like this. Does it take a while to get used to it? Do you sleep with it on? How difficult is the implant surgery?

Sorry for so many questions, but this is such a strange process, I sometimes am sure I am in a strange dream. I'd also kill for a warm shower

Thank you so much in advance for any thoughts and responses!

[pooh_ac]

Originally Posted by SFNgirl

Hi, I've been on the peripheral neuropathy forum before but new to this one. I developed non length dependent small fiber neuropathy about one year ago, and have body wide pain, in varying locations, 24 hours a day. Before this, I was completely healthy. I am 43, and a mother of 2 great kids (10 and 8), and my wonderful husband is a stay at home dad. I'm currently on a medical leave because the pain is just too much for me to be able to travel and attend meetings as I should. I have a few neurologists, so far after tons of testing it has been deemed idiopathic, though my Hopkins neurologist believes it is likely due to an autoimmune issue. In addition to the pain from the sensory neuropathy, I have autonomic neuropathy, causing blood pressure, sweating and digestive issues. I have lost about 20 pounds, and also now have flashing lights in my eyes and ringing in my ears.

I saw a pain management specialist for the first time about a month ago, and he recommended the Medtronic stimulator. I'm wondering if anyone on here has small fiber neuropathy and has a scs? My doctor said typically its not used for SFN, but he thinks given that my legs and feet seem to be my more consistent and more intense pain, that this a reasonable thing to try.

I am now on day 3 of a one week trial and am cautiously hopeful. At first, I was dismayed, and surprised at the intense feeling of the tingling vibration, and couldn't imagine the idea of feeling it all the time. But I am getting used to it now and find that I prefer having it on to not. I can still feel the pain through the tingling, but does seem more muted, and it seems particularly useful in my feet for standing and walking. There are times, however, like last night, where my pain shoots to a 8/9 and this just can't compete.

Do others still feel the pain through the tingling? Do you keep it at a pretty high intensity? When you turn it off, does the pain seem even worse? For it to work, I really need it at a pretty high level and wonder whether I'll really be able to get used to it and actually be able to work like this. Does it take a while to get used to it? Do you sleep with it on? How difficult is the implant surgery?

Sorry for so many questions, but this is such a strange process, I sometimes am sure I am in a strange dream. I'd also kill for a warm shower

Thank you so much in advance for any thoughts and responses!

Hello I am Pooh, a nutty nurse from nowhere. I am currently on my 3rd Medtronic unit. 1. The intensity, the wavelength can be adjusted. It is easier to do with the permanent unit and its "remote. In general some pain signals do get through depending on how "high I have the unit turned. I remember begging my doctor to leave the trial in and "waiting very impatiently for the approval of my permanent unit. When I got my initial unit I had gone from working as a pretty active nursing job to a more sedentary home care nurse ( more driving less up/down steady movement etc) I have since then (after my unit being placed) to a surgery nurse, a floor and ER nurse I do not turn my unit off. The biggest thing with the implant surgery is the fact you must be VERY careful. Need to remember BLAST, no bending, lifting, stretching and twisting. You must let your leads heal in place. One of our members has chronicled his entire journey you can read it here: http://neurotalk.psychcentral.com/thread117854.html
As far as the shower My make due with each unit has been to set a stool of some sort in your shower, have somebody wrap a shower curtain around you. The have someone use a flexible shower hose/wand wash you hair makes many things feel much better! Be sure to keep your incisions dry because many docs have zero tolerance for patients who do not follow instructions to keep incisions dry. Do not be surprised if you have fairly significant pain from your insertion sites at first but after a few days to a week you will notice your feeling better every day.
Feel free to ask questions we have a very kind and caring group!
z

[Hannabananna]

I am so sorry to read of your journey to chronic pain.
Please ask every question you can think of.....I have been here about 2 years and still learn so much from others discussions...so let those questions rip.

I have a Metronic adaptive stim for deep lumbar pain/nerve injury. I wanted to comment on feeling it.

Yes I still do feel pain thru the tingle although it is less intense. At first I kept it on low at work and very high at home...the problem for me ...when it is on hi ...my brain thinks I am wobbely...like I might fall or like I can't step over something even small.
It helped enough with the pain for me to get back into exercise again ...by getting stronger I could now leave it on constantly at a low setting...this works so much better for me...I forget it is on. I do set it higher sometimes at night if my pain levels go up.

The surgery is not easy...I had a hard recovery...took 10 days off and needed 3 weeks. Not an easy decision and so very personal.

I do know you will get plenty of feedback here.
Johanna

[SFNgirl]

Thank you Pooh and Johanna, I really appreciate the feedback. It is such a strange new world, chronic pain, I can't really accept that I live in it. But every day I realize that that's what this is, and I have to do my best to beat it.

I have my appt Tuesday to remove the trial leads, and will discuss the permanent one. I am leaning toward doing it. I definitely find that I want this on all the time. For some reason, my right leg needs to be at a higher level than the left, and I am thinking that's probably because the wires shifted, though could be my nerves are reacting differently between the two legs. I am a little disappointment by the settings in general. I really only use 2, as all of the others are really just variations of the same. Do you have more distinct differences between the multiple settings? And, as you said you have deep lumbar pain, does this help you in the lower back? Mine does not even touch my back, so I am hoping that is something we will be able to target.

I am very happy to have found this site. I have been reading through a lot of the back posts, and finding a lot of helpful info. I think I may target January for the surgery, though I find myself not wanting to give this up for a month and a half. But also quite scared of the surgery and what sounds like quite painful recovery process. I have very little experience with surgery.

For now, I will keep reading your posts and will be back with more questions, I am sure. Until then, thank you and good luck to everyone.

[Hannabananna]

I so wish I had been able to find this place pre SCS
....I will write more later...I have a low pain day going on and want to get the bird cages cleaned.

I make myself type chronic pain so it sinks into my psyche.

It is a disease. The first time I read that in print...I had to close the PC...took me a whole day to integrate that into my mind.

HB

[Rrae]

It's great to have ya!

Yes indeed you've found a great place for support. We're here for you as you go thru the steps of the process.
It does take awhile to get used to! Mine covers about 65-70% of my RSD pain in legs and back. I still need meds for the breakthru pain.
I have the Medtronic stim and really like it.

You are getting your leads removed today. The hardest part about this step is that your pain will come back, sometimes with a vengeance. Hopefully you are getting ample pain medication to help you thru this.

Will anxiously be awaiting an update and if you've decided to do the implant.

Caring,
Rae

[SFNgirl]

Hi all, thanks for the responses. So, the doctor threw me for a bit of a loop today. He was not totally satisfied with my description of how well the stimulator controlled my pain. I told him that I could still feel the pain through the tingling, especially in the backside of my legs but that it still seemed better than without it. I also said it helped my feet considerably, but at the end of the day I have a few nights where I went to an 8 or so on pain scale, and then the stimulator couldn't compete.

So he said now he wants to consider a pain pump. He wants to do a series of spinal injections over the next several days to see how I feel with opiates delivered directly to my spine. If we find a dose that works, then he'd go the pain pump route. I guess we will see and then decide between a neurostimulator and a pain pump.

Did any of you consider a pain pump when deciding on a stimulator? Does anyone on here have a pain pump? Now I'm really confused, didn't anticipate this today. And I'm bummed, because he said he thinks my sensory nerves are too damaged to feel the stimulation the way they should, I guess was hoping my nerves were not so damaged and maybe still hoped it would be temporary. He also suggested this condition could progress. And the pain pump has the benefit of addressing both lower and upper body should I need it. I've had some hand pain and some face pain, but much less frequently or consistently.

That's today's update, I'll be doing injections the rest of the week. Thanks again for your thoughts.

[vbeck]

SFNgirl, I am still in recovery, lucky you found this site before your surgery. I did not. My bad. See if your doc can get you a hospital bed with a remote to help get in and out of bed. Also if you dont have one make sure you have a recliner. I did not have either.

Every move for two weeks was so very painfull. My unit needs some tweeking but, for the most part it does help with the pain that I have been dealing with sense Jan, 1999.

Good Luck too you. vbeck

[SFNgirl]

Thanks vbeck. I'm sorry you are in such pain but glad to hear it is helping a bit. Does your comment about the hospital bed mean you had to stay in the hospital for a while? I thought it would be outpatient surgery. I don't have a recliner, but have been considering one and your note has made me put it to the top of the list. I'll keep reading through posts, and i hope you keep us updated on your recovery and experience with the pump. Good luck and feel well soon!

[Rrae]

Originally Posted by SFNgirl

Did any of you consider a pain pump when deciding on a stimulator? Does anyone on here have a pain pump?

Here are some past testimonies on pain pumps. . . .


Pain Pump member references:

Here is the testimony of Bobinjeffmo's pain pump:
http://neurotalk.psychcentral.com/post701979-14.html

Here are some post references, both good and bad, to hopefully give you a realistic array of experiences:

http://neurotalk.psychcentral.com/thread144925.html

http://neurotalk.psychcentral.com/post778075-7.html

Another thing you can do is use the "Search" feature near the top of the page in the bar that runs across the screen (3rd option from right). Type in 'pain pump' and it will bring up prior posts and discussions on these.