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JeanB

Nerve Stimulator as treatment for Digital Ulcers

14 posts in this topic

Hello, my name is Jean. I am 36 and was diagnoised with CREST when I was 23. I have since lost 2 fingers and I almost lost a third this past winter. After this last brutal winter, my Rhuematologist sent me to an Anesthesiolgist. He told me about the use of nerve stimulators as a treatment for pain and that there has been some success in this improving circulation. I am currently doing the trial. I have wires in my spine that send out pulses that redirect the pain and replaces it with a vibration. I'm looking for other CREST patient who have used or uses nerve stimulators for treatment. The trial is brief, 5 days and it's hard to know if this is or will work in the long run. I'm looking to connect with other patients to see if anyone has any long term results they can share with me. You can contact me here.

 

Thank You!

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Jean,

Welcome to ISN and the Sclero forums! I'm sorry to read that you have had so much trouble with Raynaud's and it is causing you so much pain and so many problems. I'm not familiar with the nerve stimulation treatment that you are doing, but if it helps and is being conducted by a qualified physician, then go for it. I sure hope it helps you.

 

Just in case, there are other successful and a few unsuccessful treatments for Raynaud's. I'm sure you have tried many of them since you've been dealing with this for so long, but just in case, you might check out our Raynaud's treatment page. You might find something new and directly related to the problems you are having. Please let us know how the treatments work. There are a lot of people on this forum suffering as you are with extreme Raynaud's so the sharing of information is imperative.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Thank you for the reply. Nerve stimulation involves placing wires in your spinal cord that sends the nerves signals to redirect pain, though I'm mainly doing this because there is some research that has shown it can also increase circulation. I am doing a trial right now and am trying to decide if I want it placed permenantly. If I have it done I will have the device planted inside me, which is a little scary! But seeing how treatments are few and far between for us I feel I almost have to try this. If anyone has any questions I will try my best to answer them, but since the nerve stimlation for Raynauds is considered off use it's hard to find a lot of information about it in connection with Raynauds.

Thanks Again!

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Hello Jean,

 

I'm sorry you have been having the issues you related to us, but for you to participate in the trial is admirable. I hope that you find it to be of great benefit, even though I also understand it being a might scarey, just the same.

 

Thank you so much for letting us know about this and please keep us posted on how you're doing and your experience/results with the trial :emoticon-hug:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Jean,

 

Welcome to these forums!

 

I'm sorry to hear that you've had such dreadful problems with Raynaud's Phenomenon. I've never heard of the treatment you describe, but I do hope it will improve your symptoms and also your circulation.

 

Janey has given you a good link regarding some of the other treatments available and I've included another link with more general information about Raynaud's and also another Raynaud's link which I hope you'll find interesting.

 

Please do keep posting and let us know how your treatment works and how you get on with the trial.


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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Hello Jean

 

Welcome to the forums and I am so sorry Raynaud's has wreaked such havoc for you. I hope the trial works for you.

 

Take care and keep posting.


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)

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Hi Jean,

 

I have a nerve stimulator for bowel issues but the principal sounds similar. I have very thin wires place into the sacral nerve and then the battery part is placed into my buttock, this can also used for pain as well by some people. I was very nervous about having it done but it was really nothing and after a couple of weeks was fine. The only thing I have to be careful with is not bending or over stretching due to where it is placed.

 

Take care and I hope it helps.

 

Buttons

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Jean,

 

I have CREST, I am wondering if the loss of your fingers is due to the Raynaud's? My Raynauds is very far advanced, I have very, very little blood flow in my toes and I keep getting a sore that never quite breaks through but hurts like a hot poker is being shoved into the center of it... How did you find out about this trial? I am sending healing thoughts that this is the answer for you and works.

 

Thanks for sharing,

Marsha

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I just had this done!!! I did the trial which was a huge success and couldn't wait for the final surgery. However due to being bumped for the first date and then landing in the hospital with a severe reflux issue for a week it was delayed quite a bit. However on April 25th it was permanently implanted and it is wonderful.

 

To give some background for the reason for me having this done... I have systemic sclero which started out with peripheral neuropathy. The neuroapathy started out as tingling, then went to numbness of my hands and feet, and then went to permanent nerve damage that has moved all the way up to my knees. Now it has escalated into horrific pain in my legs. My rheumatologist didn't feel it was from the sclero but rather from the neuropathy or the Polymyositis, which I also have, along with 7 other autoimmune diseases.

 

I have been on pain killers and pain medication for the pain for over 2 years. I wear a pain patch and take the oral meds. However these have really made my reflux issues more difficult in that pain medication don't help the motility issues I have.

I no longer have any motility in my esophagus nor my stomach. My rheumatologist doctor said getting off of these pain meds will help this issue.

 

I have tried neurotin and lyrica and also a tens unit and none of these worked. So I went to a Pain Management doctor and he said he wanted to try the Spinal Stimulator. He said if there is a 50% improvement it is his opinion that it would be worth doing the permanent surgery. Well I did the trial for 5 days and when it was time to take it out I told him I had a 98% success and he couldn't believe it.

 

So I had a neurosurgeon perform my surgery. I met with him for a pre-op appointment and we discussed what was going to happen. He takes a small portion of my spine out to put the stimulator in. He then puts the needles in and actually ties them to my spine so they hopefully won't move. He goes by the trial run on which nerves he is working with. In my case I wanted it to cover down both of my legs all the way to my feet and to get it up as high as he could on my back. My lower spine is degenerating as well as having disc disease. This is a new development (there have been many new developments for me in the last 6 months due to this disease) and the neurosurgeon is of the opinion that this is something that is going to cause a lot of problems in the future so he wanted the stimulator to work for this too. So he tried to get them as high as he could. He then makes a fold in my skin in the lower portion of my back that holds the battery. The operation takes about 1 1/2 hours and I was under for the entire surgery. Some people are awake for portions of it so they can tell the surgeon where to place them but my trial run went so well he knew where they were to go.

 

I have a remote that I now position or point to my side to change to a different setting. I have met with the Boston Scientific guy twice now to change the remote settings. After a couple of weeks I realized that the setting for the back was affecting my rib cage more than my back. I also have had the pain in my legs change to both the front of the legs and now to the thigh area and lower calf of each leg. My pain scale was always a solid 8 so when I did the trial run it was on 24/7 due to it working so well. You see the stimulation that is provided by this is like having a massage inside your body. I have different types of sensations in my remote. One is a pulsating feeling; one is like having rainfall; one is like a massage feeling. It's hard to explain. When I met with the Boston Scientific Rep (this is the company that makes the device I have in my body) he would have a laptop computer where it would bring up a body and he would be able to connect to my device in me and would be able to tell exactly where the needles that the surgeon placed were at. He would then send a sensation to my body and I would be able to feel it. From there he would be able to change what it would feel like and where it would hit. It is just soooooooo amazing.

 

Every night I am awakened at about 1:45am with the horrific pain. This would be about the time that the pain med that I would take at bedtime would wear off. I would be in such pain that I would usually be up from then until about 5am every night. Well now I usually turn the machine off when I go to sleep. So now I am awaken at 1:45am with the pain and I reach for the remote and turn it on and choose a setting and within a few minutes my pain is replaced with this wonderful sensation and I go back to sleep.

 

The recovery for the surgery is 6-8 weeks. With mine the surgeon really tied them to my spine. But still there is no bending; no lifting over 5lbs; no twisting; no arms over your head. I followed this religiously because when I did the trial run these restrictions were the same then. Well you can't shower for 5 days so I thought I would just bend a little over the sink to rinse my hair with a spray hose and I could tell that one of the needles had moved because the sensation had changed on where it was hitting on my legs. So when I did the real surgery I made sure that this didn't happen so I didn't want to wreck the success of the surgery. I had Home Health come for about 3 weeks. My mother-in-law brought me one of these deals where you can pick things up with this device similar to what you see people use when they clean the ditches in that it's a reacher. It is a life-saver. The first few days it seemed like I was dropping everything and you can't pick them up. I guess the surgeon that did mine really really ties the needles to the spine so they shouldn't move.

 

It's amazing too that I can be sitting and I bend my body backward and it moves the needles and it intensifies the sensation. This is handy when I'm somewhere where I may have the sensation running in my body and I need it a little stronger but I don't want to grab my remote so all I have to do is bend backwards a little bit.

 

I hope all of this is making sense. Like I said this is one wonderful device. When I asked the surgeon who this would work for he said anyone who has pain anywhere from the neck down.

 

This truly has been wonderful for me. You can go to you-tube and watch the surgery. Just search "spinal stimulation surgery". If you google it you can also get a lot of information.

 

If you need more information just let me know. You can email me as I am not on the computer much now due to all of the other sclero issues I am having right now.

 

Good luck on your decision. I can't endorse it enough!!!!!

 

Warm hugs,

Peggy

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Hello Peggy

 

How wonderful for you to have such effective relief from your pain. It's amazing how ineffective pain medication can be so people need to be aware that there are alternatives.

 

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)

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Peggy, I'm thrilled that you found relief at last through this device. Thank you for sharing the information about it with us, too!

 

:emoticons-line-dance:


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 Peggy,

 

What a wonderful device!! :emoticons-clap: I'm so pleased that it's given you effective relief from the pain you're suffering.

 

I do hope Jean will feel more confident about her trial after reading your post.


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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