sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Does anyone have an implanted Spinal Cord Stimulator for pain?
My doctors are recommending this and I have gotten to the point where I am considering it. Scary as that sounds.
Some of you remember that I fractured 9 vertebrae this past spring. I had kyphoplasty procedures to fix 4 vertebrae. The other broken ones are in an in-between state beginning to heal.
Recent MRI's revealed degenerative disks, spinal stenosis, and facet joint arthropathy. These other problems are occurring and gradually getting worse due to the damage and spine changes done by the 9 compression fractures.
Basically I've tried everything for the pain. I've had the kyphoplasty's, I've tried nerve blocks, I've tried physical therapy, I'm taking pain medicine and anti-inflammatories.
The nerve block actually helped but only in a very small area. I was so excited because I thought that we finally found the answer. My doctor said that he would have to do several procedures (radioablation) to cover my whole pain area and he can't do that many. He said that my response to that procedure verified my need and eligibility of the spinal cord stimulator. (Though I did not know that he was considering this for me.)
I'm trying physical therapy but it makes me hurt worse. Yesterday my doctor told me to stop doing the exercises. I'm kinda torn about what to do. Another doctor ordered the PT, my physiologist is the one prescribing my pain meds so I don't want to upset her by stopping the PT without her orders and consent. I know increased pain is counteractive though.
I really wanted to do PT because I've felt like a prisoner in my own home because of this horrible pain. I hurt so bad I can hardly stand to brush my teeth. I wanted this to help me. I rarely leave my house except to go to doctor appt's right now. Pain even wakes me up in my sleep.
So my doctor gave me some dvd's to watch about the spinal cord stimulation. I watched them tonight just crying. I think is this relief that they talk about too good to be true? I'm scared to get my hopes up but feel like it may be something that may help me.
I hate the idea of surgery again. (I woke up during my last surgeries and that was not fun.) Fears of surgery and recovery is what deter's me the most. But I guess the electrodes are only placed in the epidural space and then the stimulator is placed in the hip area with a 4-5in incision. So no nerves or bones are permanently manipulated this time.
I want to be able to live life again. And not be severely limited by pain.
This is also seriously impacting my Lyme recovery and treatment. I need to get better.
[ 08-12-2012, 01:26 PM: Message edited by: sammy ]
Posts: 5237 | From here | Registered: Nov 2007
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
OK . This is not a joke,, JERRY LEWIS,,the real one He had horrible pain issues etc...
I heard him on a talk show about getting this done and it saving his life, cause what at the end of his rope... Maybe Google and see if it comes up..
Sorry you're having such a rough time..Really had high hopes with your surgery.
Will insurance go for it??
Are there any major downside issues to it??
To bad we can't exchange rooms for a bit, at least we'd get a different view for a while Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
My neighbors both have back issues, very serious. They had the implanted one. They had a trial one first. Is that an option for you?
I see the horrible pain they live with, I see it in their eyes and how they walk. I can hear it thru your post and I am so sorry you are going thru this and Lyme.
I will be praying for you, for your pain and wisdom. Sorry I am not more help. Gentle hugs.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Maybe you have already seen this. If not, here is what appears to be a balanced view of the procedure:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sammy,
I just want to say that I wish you did not have to deal with all this. I hope it all gets much better very soon, somehow. Take care.
DO ask your LLMD about this, though, as Dr.B states in his guidelines "no electrical stim." in the PT section.
That may be because it could irritate spirochetes, though not sure. And what you are talking about likely has a different method of the stimulation than those units used in physical therapy treatments.
2. . . . DO NOT use ice or electrical stim unless specifically ordered by our office . . . .
----------------
Now, that is not to discourage this as it may be fabulous. It's just that your LLMD should be able to guide you as to how to BEST manage that if it affects lyme at all. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Wonder if you've tried the herb, Corydalis for pain relief? If you want links, let me know.
[Maybe a safe way to get marijuana beside breathing it?]
Same with FELDENKRAIS for a PT / massage / body ergonomic "re-education" approach? It is very gentle and individually tailored - and can be very good. Want links?
Infrared light wand as with SOTA LIGHTWORKS?
The medical mushroom LION's MANE is said to help heal nerve fibers.
I hold thoughts that your body can heal and feel good again. Still, for now, nurture yourself. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keeb.. I think his info on electrical stimulation is referring to those pads that PT's use, not the implanted stims. I THINK that's very different because the one sammy is talking about interferes with the pain signals in the spinal cord. It's not on the MUSCLES.
My brother has one of those and I do believe it helps. He's able to do handyman type work in his retirement...including remodeling jobs!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Before you decide on something as invasive as that surgery, you could try LED light therapy or pulsed electromagnetic therapy.
http://altered-states.net/barry/newsletter495/index.htm Quote: Pulsed Electro Magnetic Fields influence cell behavior by inducing electrical changes around and within the cell. Improved blood supply increases the oxygen pressure, activating and regenerating cells. Improved calcium transport increases absorption of calcium in bones and improves the quality of cartilage in joints, decreasing pain dramatically. Acute and even chronic pain -also caused by osteoporosis- may disappear completely.
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you friends.
The doctor is seeking insurance approval for the trial and the implant. I was told that it would take 2-3months for approval and everything to be arranged for the trial
I'm relieved to know that some of you actually have friends and family that have been helped with this. It is encouraging to hear real life experiences.
While I'm waiting for the trial, the doctor is also going to seek approval for a different kind of brace that will provide counterbalance for the kyphosis so that may also provide a little pain relief. I hope that insurance will cover it, he said that they may not.
And I will try the LED light therapy. Thank you for reminding me.
I am already taking Forteo for osteoporosis so my bones should be getting stronger. Osteoporosis caused the original compression fractures but my doctors are not sure what caused the sudden severe osteoporosis at my age. I am seeing an endocrinologist that specializes in bone health and am currently waiting to see one of the top specialists in the country for evaluation.
As of now they suspect that the Ehler's Danlos Syndrome, a genetic collagen disorder has lead to the bone weakness. I also have a low PTH, which is rare so they are looking into possible causes of that.
My spine doctor says that the facet joint arthropathy was directly caused by the compression fractures. He said that the joints have developed severe degenerative arthritis and hypermobility. That it is continuing to progress and is much worse because of my Ehler's Danlos Syndrome.
All that to say I'm not struggling with simple osteoporosis. To put this into perspective, I just turned 30 a couple weeks ago. Before I got Lyme I was healthy and athletic. My life has been drastically changed.
I follow-up with my LLMD every 4wks and my spine doctor has consulted with him too. He is always involved in any major health decision. I trust his opinion.
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Keebler, can you tell me a good source for Corydalis? I have never tried this before.
The physical therapist that I am seeing is supposed to be the best in the area for Ehler's Danlos Syndrome. My physiatrist (for back) and geneticist (for EDS) both referred me to her last month. So I believe that I am seeing someone that is experienced and should be treating me well. Maybe I can talk with them to see if my treatments can be adjusted.
Thank you all for caring and listening and helping me here. You are true friends Posts: 5237 | From here | Registered: Nov 2007
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posted
Sammy - sorry I missed your post until now. I have limited internet access these days.
I have a spinal cord stimulator implanted - it's been almost two years now.
If your doctor thinks a stimulator will help you, then you should try it. It sounds like you don't have a lot of other options, really.
I've been very happy with my stimulator. The worst part was waiting for insurance approval for the trial, and then waiting for approval again for the permanent implant.
Sometimes the stimulator is the only thing making it possible for me to function at all.
Feel free to ask me anything - I'm having a rough day and can't really think what you might need to know.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- sammy,
Corydalis, one source is HerbSom by Hepapro.com (Zhang).
Topic: Looking for long term pain management -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, sammy, I am so sorry that you even have to consider this. But it does sound as if it would help you a lot. I have some other suggestions, too. I'll call or email you about them soon.
I swear, you are a saint many times over by now. ANd the same goes for many of us here! But your burden is quite extraordinary. I am always saying to my husband, "I just want to be normal! I just want to be a person!"
I don't know about the stimulator, but you so desperately need pain relief, that's for sure.
Any progress on finding out the source of the extreme osteoporosis? I guess you haven't been able to see the specialist yet---or have to wait for your follow-up after tests.
xoxoxo
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