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Crohn's Disease Forum » Treatment » Anyone done Spinal Cord Stimulation (SCS) Therapy?


06-15-2009, 07:43 PM   #1
froggie3kb
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Anyone done Spinal Cord Stimulation (SCS) Therapy?

Well long story short i'm 24 years old, diagnosed with Crohn's when I was 18. Always thought I was one of the "lucky" ones because I didnt deal with the hospitlizations like alot of us with Crohn's deal with, etc. I just had pain constantly but it was bearable and just ate once a day for dinner, and just toughed it out... Well fast forward to last year I was hospitlized about 3-4 times from the pain, then they decided to go in for surgery doing a bowl resection to remove the "bad". Well 5 days later I had a leak where they did the resection almost taking me away for good... After an emergency surgery I wake up with an Illeostomy bag on my side, and my stomache left wide open from the incision because they couldnt close me back up due to the infection. Talk about nasty, I made sure to get plenty of pictures to look back on these days because it was crazy. Well fast forward now I have had the Illeostomy bag removed (Thank god) but i'm still really not in any better shape than I was before all of this mess... Now we fast forward again to now.

I just recently started seeing a Paint Mgmt Dr. and he wanted to proceed with doing a Celiac Plexus Block, so we did that last week and nothing...


Now today he mentioned wanting to proceed with trying Spinal Cord Stimulation, and how he thinks it should hopefully work wonders for me since every medicine under the moon hasnt helped. In the little bit of research i've done I havent found to much on using SCS for Crohn's which is a little discouraging so I was hoping maybe someone on here has heard of it being used and has some info or anything along those lines...

Thanks again everyone for any kind of help, this is my 1st post here but i've been reading for a while just finally taking the plunge.
06-16-2009, 01:43 PM   #2
kromom1
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Wow, Froggie, you have sure been through a lot! I'm sorry, I've never heard of spinal cord stimulation for the treatment of Crohn's, I just wanted to welcome you to the forum. Hopefully someone else has heard of this treatment and will see your post and respond.
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Diagnoses: Crohn's 8/07; steroid-induced diabetes 11/07; Remicade-induced Lupus 02/09, shingles 7/10, and hypothyroidism.
Medications: Entyvio, Methotrexate, prednisone, Protonix, Synthroid, fish oil, calcium, multivitamin, glimepiride. Failed Pentasa, Entocort, Humira, Imuran, 6-MP, Remicade, Tysabri, and LDN.
06-16-2009, 08:12 PM   #3
froggie3kb
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kromom1 said:
Wow, Froggie, you have sure been through a lot! I'm sorry, I've never heard of spinal cord stimulation for the treatment of Crohn's, I just wanted to welcome you to the forum. Hopefully someone else has heard of this treatment and will see your post and respond.

Thank you for the warm welcoming kromom1, I really appreciate it... I thought I had been through alot but getting on here and reading people stories for hours and hours lets me know it could be worse. Yeah i'm really hoping I can get lucky and someone on here has some info, because I have yet to find anything worth anything...
06-16-2009, 08:15 PM   #4
My Butt Hurts
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Sorry froggie, I haven't heard of it either, but welcome!
06-16-2009, 08:26 PM   #5
froggie3kb
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My Butt Hurts said:
Sorry froggie, I haven't heard of it either, but welcome!

Haha, thanks for the welcoming...
06-16-2009, 08:45 PM   #6
D Bergy
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Is this stimulation accomplished using a TENS unit? Or is it some other type of stimulation?

A TENS unit uses low frequencies to alleviate pain, although I do not think it always works.

Welcome to the forum.

Dan
06-17-2009, 11:31 AM   #7
kello82
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hi froggie and welcome!
me either, i havent heard of SCS. i just googled it real quick though to see and it looks pretty interesting. how do they get the little wires to your spinal cord?
do you have to have another surgery to do that? are they permanent?
06-17-2009, 07:21 PM   #8
froggie3kb
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D Bergy said:
Is this stimulation accomplished using a TENS unit? Or is it some other type of stimulation?

A TENS unit uses low frequencies to alleviate pain, although I do not think it always works.

Welcome to the forum.

Dan

It's not like the TENS unit, this way has the machine embedded under extra skin on your backside and then the lines are ran to different spots in your spine that supposively cause enough electrical current to stop the pain signals... I'm still lost on it, still got to watch the rest of the cd they gave me and paperwork.

Thanks for the welcoming...




kello82 said:
hi froggie and welcome!
me either, i havent heard of SCS. i just googled it real quick though to see and it looks pretty interesting. how do they get the little wires to your spinal cord?
do you have to have another surgery to do that? are they permanent?
Hey Kello, thanks for the welcoming I appreciate it. I kinda feel like I know you from reading silently and keeping up with your progress over the past few months with what you've been through.

To my understandings he places the wires in the little empty areas in the spine with a needle, he showed me in detail how he would do it but it was still a little confusing haha.

At first they do a temporary setup with the wires run into your spine but sticking out of your back and ran to the little machine that you keep taped or any other way on you for a week to see how things go. Then if you decide you want to go full tilt with it they implant the little mechanism in you and run all the wires in you so nothing is visible. It could still be removed if needed later on down the road.

I probably made it sound more confusing than what it should be, so I apologize in advance...
06-17-2009, 09:10 PM   #9
farm
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Your not the only one. My pain mgmt doc wants to do a diskography (sp?) where he will insert needels into my epidural areas of 6 of my disks to try and find where the pain is originating, then plant wires into the worst disks and hook it to a machine.
As you said it's temp. at first with the machine exposed, then if I decide it's working he can implant the small machine.

I haven't went this route yet and really don't want to.
Some history on me is that I suffer from Crohns, Migraines, and Degenerative Disk Disease. So I've had chronic pain for a really long time and as my Pain mgmt. doctor told me, "Son you have the highest tolerance to pain I've ever seen, but you also have the highest tolerance to pain meds I've ever seen."
Back in Dec. I had a right hemi-colectomy and open appedectomy. After giving me 10mg of morphine and 6mg of dilauted(sp?) I was still cussing and in pain but they refused to give me anything else.
I've had it all for pain. From Darvocet to Demeral injections. Currently I have Tylox and Vicodin (both of which are like taking one asprin.)

Instead of going with the spinal taps and all I have started taking Cymbalta. Commonly used for depression, it is also used for nerve pain/damage. It does work, some for pain but mostly helps with my back pain. It does nothing for migraines or the crohns pain.
For migraines I take Imitrex injections and some Tylox.
For crohns pain.....I don't know. Sometimes a couple Tylox will help, sometimes not. I usually go for heat or cold on the worst area
The doc hopes that being on Cymbalta will eventually help with overall pain and I do too. Something has to help and for some reason I have an odd tolerance to narcotics.

So if you do go for this Spinal Cord Stim. please let us know about it as I am still debating it.
06-22-2009, 05:00 PM   #10
froggie3kb
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farm said:
Your not the only one. My pain mgmt doc wants to do a diskography (sp?) where he will insert needels into my epidural areas of 6 of my disks to try and find where the pain is originating, then plant wires into the worst disks and hook it to a machine.
As you said it's temp. at first with the machine exposed, then if I decide it's working he can implant the small machine.

I haven't went this route yet and really don't want to.
Some history on me is that I suffer from Crohns, Migraines, and Degenerative Disk Disease. So I've had chronic pain for a really long time and as my Pain mgmt. doctor told me, "Son you have the highest tolerance to pain I've ever seen, but you also have the highest tolerance to pain meds I've ever seen."
Back in Dec. I had a right hemi-colectomy and open appedectomy. After giving me 10mg of morphine and 6mg of dilauted(sp?) I was still cussing and in pain but they refused to give me anything else.
I've had it all for pain. From Darvocet to Demeral injections. Currently I have Tylox and Vicodin (both of which are like taking one asprin.)

Instead of going with the spinal taps and all I have started taking Cymbalta. Commonly used for depression, it is also used for nerve pain/damage. It does work, some for pain but mostly helps with my back pain. It does nothing for migraines or the crohns pain.
For migraines I take Imitrex injections and some Tylox.
For crohns pain.....I don't know. Sometimes a couple Tylox will help, sometimes not. I usually go for heat or cold on the worst area
The doc hopes that being on Cymbalta will eventually help with overall pain and I do too. Something has to help and for some reason I have an odd tolerance to narcotics.

So if you do go for this Spinal Cord Stim. please let us know about it as I am still debating it.

Funny you mention the tolerance to narcotics, I too have a very high tolerance to pain meds... I've had everything under the moon for pain during my many hospitalizations here lately and nothing was helpful for more than a minute or 2 even when they started pumping me with dilaudid(sp?) and claimed it was the strongest stuff they had and I should be out of it but I dont even blink twice you'd think I was getting a piece of candy in my IV.

Now that I just started seeing a Pain mgmt dr hes starting to see what I told him from the get go with the tolerance. He started out with a lil bit of morphine and, it was like eatin candy then he bumped up the dose and swapped to liquid morphine and still like eating candy. Now he has bumped it up yet again (even though I told him the morphine pump did no good in the hospital) but we didnt know the dosage so he wants to try again and gave me marinol to hopefully help and try to make me "want" to eat. The marinol is a new thing to me, but like I told him i'm open to anything at this time...

I'm a little scared when it comes to something this drastic, it kinda makes me second guess myself if i'm really going through enough to try this SCS. I know I shouldnt second guess myself but deciding whether or not to really go through with something is no fun haha...

I'll definitely keep everyone updated, thanks for your information I really appreciate it...
07-19-2009, 08:46 PM   #11
shmooda
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Hi Froggie...... My husband has severe neuropathy and last year they implanted a spinal stimulator. His pain level has dropped about 75%! He had severe pain from his waist to his feet. With the stim he only has pain in his feet. If they could target the intestinal area I would do it in a heart beat! He has 5 different levels of "vibration" to choose from. He said it feels like champagne bubbles in his body. He is a new man. The surgery took 2 hours and you can see the box under the skin in his lower left back. It really is a miracle treatment!
06-15-2017, 07:06 AM   #12
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Join Date: Jun 2017
Location: Wantagh, New York
Not sure anyone even uses this forum anymore but I thought it important to post the following.

I've probably had Crohn's for a few years but it was just diagnosed *officially* on Monday. I've been taking Uceris 9mg and Lialda x 4 and as of Tuesday, I'm scheduled for my first Entyvio infusion on Jue 27th.

I also have severe problems L3. L4, L% and most importantly, the Coccyx.
I cannot sit for more than ten minutes without the pain beginning to get out of hand. In fact, even lying down can be uncomfortable. I was on a gurney waiting 2.5 hours for a recent Colonoscope & Endoscopy and was in so much pain, they had to give me a shot of Fentanyl before proceeding.

Yesterday, I had a spinal cord stimulator procedure. This is a trial of brand new technology from Nevro. No paresthesia.

I've been on Nucynta 75x6 for pain for two years. Nucynta is a Class 2 narcotic but for me, is far better than the other typical opiods. Anyway, for two hours each dose, the Crohn's symptoms disappear, or are at the very least, substantially less. Not perfect. It's just masking all the Crohn's crap.

The stim was placed at 2pm yesterday. It is 8am the next day and my Crohn's has been totally gone for 18 hours so far. I'll report back later. Fingers crossed!
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