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Seeking opinions Re: implanted devices

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dancer Quote  Post ReplyReply Direct Link To This Post Topic: Seeking opinions Re: implanted devices
    Posted: Nov/10/2015 at 11:48am
FYI, I have searched the forum Re: "Nevro" but I only found examples of press releases.
 
About 3 months ago my pain specialist suggested "Nevro", which is like a "spinal chord stimulator" (made by Boston Scientifics).  Unlike the SCS, Nevro operates at a much higher frequency, so the electrical stimulation can't be felt by the human body.  I've just passed the mandatory "psych evaluation" and I'm on the doc's schedule for a Nevro "trial procedure".  If it works he will re-insert the wires and implant the Nevro power unit.     
 
The input I'm looking for is where (or where not) to have the doc put the power unit and what is it like to live with an implanted device in one's body. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rocken Roni Quote  Post ReplyReply Direct Link To This Post Posted: Nov/10/2015 at 12:42pm
Dancer,

 We have had people here that had devices installed in their body to fight pain. I'm sure you will find good information from people here who know about a spinal chord simulators. It may not be the same thing but may act the same way in the body once installed.
Roni


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1st injured Feb, 1997. Was told it was "Soft Tissue" and sent back to work - no X-rays
Late 1997 attended 1st Rehab Program to strengthen back. Mid 98 PCP took me off work. Tried going back to work over the next couple years, mostly off work due to pain.
June 2000, met with OS for first time. Did MRI , damage was L5-S1 totally blown out. Surgery done Jan, 2001.
Another Rehab program late 2001, attempted to go back to work early 2002. Slipped on water, fell flat on back screw fusion broke.
Went to 3rd Rehab program summer 2002.
Oct 2003 - 2nd Surgery, due to broken screw, had to operate from the front.
No improvement. Attended 4th Rehab program in 2004, at time It was decided NO work.
March 2006, had 3rd Surgery, this time fusion and instrumentation from Si to L3.
June 2008 Surgeon finally admitted I had Failed Back Surgery.
August 2009 WCB Finally put me on Long Term Disability
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Nov/10/2015 at 1:18pm
From the post I did about the Nevro System and heard, the power unit is quite small (about the size of a stopwatch), and is implanted in the lower back/buttock area.  I can't recall any members having this particular unit implanted-----I do know that we've had members who have had the older, larger units implanted and complained that the battery pack was annoying if placed around the waistline area.  It's my understanding that this is small enough so that it may not be apparent at all through clothing, but your surgeon and Boston Scientific rep are the best persons to ask about this.

While I don't have this type of implanted device, I do have a back full of rods and screws throughout my entire lumbar spine and don't really give them much of a thought----probably because they are so far under the surface of the skin.

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My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Merlin Quote  Post ReplyReply Direct Link To This Post Posted: Nov/10/2015 at 7:16pm
Hi Dancer -
 
I can't help you with implanted devices but I would like to welcome you to your website
 
I am sorry you have pain - and I wish you all the best with your device when it is implanted and the wires are all hooked up etc - and we are like a family here
 
We support each other the best way we can - and you will not be alone - it can be very isolating when we have any chronic disease - so this is who we are and what we do - we care.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote pete81241 Quote  Post ReplyReply Direct Link To This Post Posted: Nov/11/2015 at 12:04am
hi dancer...
i have an scs and the battery pack is the size of a small cell phone. its in my upper right butt and i never get pain from the battery. i dont even know its there.
i'm not big on electronic stimulation whatever the frequency. i've never talked to a person who got lasting relief. i know youre looking for a solution but 28 years of sciatica is so long your pain has to be permanent. i'm experienced with sciatica and have had it for 45 years. like you i have tried everything...even the pain pump which did nothing.
   all my surgeries, stimulator and pump and steroid injections were useless. that doesnt mean we give up. it means we need to concentrate on exercise, stretching, positive thinking, acupuncture or whatever it is that helps a bit. as time goes by i've gotten more used to it. somehow using a lot of aerobic exercise i've been able to ignore it...maybe its the bodies own endorphines...
   i have a bunch of tricks i've learned over the years that may or may not help....heres a few of them
   switch chairs a lot
   use swimming socks to kill pain in feet
   try compression socks
   find an exercise that doesnt hurt too much
   get a comfortable reclining wheelchair for resting periods
   spend time helping others with pain or whatever
   try sitting on edge of chair so you arent pressing on sciatic nerve
   try all kinds of positions for sitting...upright works for me

   no one thing will work but a combination of things you discover for yourself might help...pal pete

parkinsons disease.men1 genetic disorder. endocrine tumors in pituitary gland and pancreas. carpel tunnel syndrome. spinal stenosis.sleep apnea.vast knowledge of crutches and wheelchairs.borderline diabetic.gerd. both hips replaced. spinal stimulator. 7 spine surgeries/fusions. pain pump trial.Thrombocytopenia. no spleen.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jeff Quote  Post ReplyReply Direct Link To This Post Posted: Nov/13/2015 at 4:35am
I am with Pete on the SCS.  I did a lot of research and lead my doctors against it, due to the high risk I present due to the immuno suppressive medication I take for arthritis. I read that initially 40-80% of people who get this for all reasons put together, 5 years later that success drops to 10 to 40% for "moderate pain relief".  This is in a real MD pain specialist book that I own.

Also, I was told that if I didn't like the SCS, I would have to pay $20,000 for surgery to have it removed, because insurance doesn't pay.  You might want to ask about that provision in your insurance contract with someone who knows your policy well.  Finally, the new higher frequency stuff is somewhat experimental in the US, as I understand it, but it has been used in Europe for a fair amount of time.  I don't have success rates for the higher frequency devices, but I can't imagine it is a lot better.
Ankylosing spondylitis & osteoporosis -> compression fractures -> facet & ligamentum flavum hypertrophy-> stenosis -> spinal cord & nerve root compression -> cervical myelopathy & radiculopathy -> bruise & deformation of my spinal cord -> incomplete spinal cord injury -> postlaminectomy syndrome of cervical region. Cervical laminectomy & fusion decompressed my cord but I now have severe chronic pain. Pain meds = Oxycontin, Percocet, Lyrica, Soma, Cymbalta, Voltaren Gel, & Ketamine pain cream. 11 surgeries including 5 orthopedic & 1 neurosurgery.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote pete81241 Quote  Post ReplyReply Direct Link To This Post Posted: Nov/13/2015 at 8:59am
another thing to check is if you can get an mri with the implant in you....i have one thats five years old and it prevents me from getting mri...more recent designs allow mris....oh, i get zero relief from it....you might as well get trial however just to see if youre a lucky one....pal pete
parkinsons disease.men1 genetic disorder. endocrine tumors in pituitary gland and pancreas. carpel tunnel syndrome. spinal stenosis.sleep apnea.vast knowledge of crutches and wheelchairs.borderline diabetic.gerd. both hips replaced. spinal stimulator. 7 spine surgeries/fusions. pain pump trial.Thrombocytopenia. no spleen.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dancer Quote  Post ReplyReply Direct Link To This Post Posted: Feb/29/2016 at 7:26pm
Many thanks to all who responded to my question.  I won't have to decide where to have the battery implanted because the Nevro Spinal Cord Stimulator trial did not reduce the pain.  I didn't notice any improvement at all.   I should have heeded the advice from Pete; after 29 years of constant pain, it is unlikely that anything is going to work.   
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Mar/01/2016 at 9:25am
Have you considered a trial with the pain pump? That does appear to have pretty good results ---- better than the SCS.

Also----medical MJ? Another option if you haven't tried it. I'm sorry the SCS trial didn't work for you:(

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Quaver Quote  Post ReplyReply Direct Link To This Post Posted: Mar/01/2016 at 10:38am
Hi Dancer,

I know your SCS trial was unsuccessful, but a friend of mine has very recently been on an SCS trial here in the uk and it was very successful. She's had it implanted. It's a new unit. She didn't have much success with the previous one. Anyway they've removed the old SCS and she's at home with the new unit. She's still getting good pain relief. I wonder if the unit that you tried was the new or old version?

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Severe chronic pain in lower back. Lumbar Spinal Stenosis, Scoliosis, DDD. Hypermobility in ankles caused most problems. Bilateral trochanteric bursitis Osteoarthritis in spine, wrists and hands. Golfer's Elbow. L4-L5 L5-S1 spinal fusion plus cage support and titanium spacers April 2008. Nov 2010, accident in shower caused compression fracture of L2. Missed by A&E. Functional lumbar spine stenosis from herniated disc at L3/L4 July 2015 XLIF discectomy plus XL-TDR very successful! Miraculous improvement in mobility! Hashimoto's syndrome, Depression, High Blood pressure, Fibromyalgia, Raynaud's Syndrome.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jeff Quote  Post ReplyReply Direct Link To This Post Posted: Mar/02/2016 at 3:10am
I read about a high frequency version of the SCS being used in Europe but in the US it is considered "investigational" and no insurance will pay for it.

I have read but don't have the stats at the moment but will try to look them up about the efficacy of the intrathecal pain pumps being higher than SCS.  Do you have any problems with morphine?  Because that is what the pump would deliver, direct to your spinal cord.

See this link for some info:  http://www.mayfieldclinic.com/PE-PUMP.htm

Ankylosing spondylitis & osteoporosis -> compression fractures -> facet & ligamentum flavum hypertrophy-> stenosis -> spinal cord & nerve root compression -> cervical myelopathy & radiculopathy -> bruise & deformation of my spinal cord -> incomplete spinal cord injury -> postlaminectomy syndrome of cervical region. Cervical laminectomy & fusion decompressed my cord but I now have severe chronic pain. Pain meds = Oxycontin, Percocet, Lyrica, Soma, Cymbalta, Voltaren Gel, & Ketamine pain cream. 11 surgeries including 5 orthopedic & 1 neurosurgery.

Please donate to help Chronicpainsite.com continue to help others.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dancer Quote  Post ReplyReply Direct Link To This Post Posted: Apr/12/2016 at 12:33pm
Again, many thanks to all who have replied to my queries and concerns.  According to my pain specialist, the high frequency Nevro SCS is the most advanced unit that is available in the US of A.  I have asked him about a pain pump that would deliver morphine to the general area of the spine from which the pain emanates.  He has declined to perform such a procedure because of the ongoing complications associated with a pain pump (such as infection), but mainly because repeated procedures have not been able to reveal a very specific point of origin.  Apparently, I am the most vexing case he has ever encountered.  He says there are only two viable options that remain.  The first is called "Prialt Intrathecal" wherein an implanted pump delivers sea slug venom to the cerebral spinal fluid at the general L5/S1 level.  For some patients, the sea slug venom causes a psychotic episode (and they are not exactly sure about the duration of such an episode).  I'm not confident that I can handle such an experience.  The second option is a referral to the Stanford Pain clinic.  The cost of the Stanford Pain clinic evaluation (just an evaluation, not treatment) is $5000 and my insurance won't cover it.  I would be inclined to pay it except that after 29 years, 3 major surgeries and 37 spinal procedures, I just don't think they have anything to offer that I haven't tried.       
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Apr/12/2016 at 4:46pm
I may have asked you this before, but have you used, or are you using MMJ? We've been having a lot of discussions on the site about this and have a couple of threads going now.

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dancer Quote  Post ReplyReply Direct Link To This Post Posted: Apr/12/2016 at 7:27pm
I have used MMJ at times, especially if I can get a strain that has a high "CBD" content.  It does help but I always have mixed feelings about using it.  What I mean is that I never get any kind of a feel good buzz from opiates... my tolerance is simply to high.  But that isn't true of MMJ.  I get some pain relief but it just doesn't feel right to get a bit of a euphoric buzz from it. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Apr/12/2016 at 8:45pm
Have you used it sub lingually as a tincture? Only pain relief and/or insomnia relief without any euphoria from what I've heard. Dose dependent, of course.

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bailey Quote  Post ReplyReply Direct Link To This Post Posted: Apr/13/2016 at 4:35am
Quick note- using cannabis orally or sublingual lay can still cause side effects.
DDD C3-C6 with multiple osteophytes causing both moderate foraminal and canal stenosis and flattening and impinging on the spinal cord
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Spicey Quote  Post ReplyReply Direct Link To This Post Posted: Apr/14/2016 at 6:47pm
Hi there,

I'm sorry I'm late coming into this discussion. I have been meaning to write an update on my situation but haven't had time to do it as yet!

I had a Medtronic spinal cord stimulator fitted about 6 years ago. Sadly for me, it just didn't work. It helped a bit with period pain (which was awful due to endometriosis) but for my back and leg pain, at best it did nothing and at worst it made the pain worse. My pain was so horrendous that I was regularly having seizures but that's another story.

A few months ago I was offered a trial of a Nevro high frequency unit. I agreed, but went into it with no expectations. I was pleasantly surprised. Even during the 7 days of trial I noticed a marked difference in pain levels and my sleeping got better. I had the new device implanted on 16th February this year and I simply cannot believe the difference it has already made to my life. It hasn't just helped the pain in my legs; it has also improved the function of them. For years now I haven't been able to walk more than 30 metres and that was with crutches. Sometimes I could manage around the house by holding onto furniture but I often needed crutches indoors too. Some days I was almost bed-bound.  This past 3 or 4 weeks I have been able to walk half a mile a day with no crutches. I haven't had a single seizure, and I'm sleeping better. My back isn't being hit very well yet, so the area around my fusion still hurts a lot, but I was given 2 new programmes in clinic yesterday which we hope will have an effect on my lower back as well.

The Nevro rep told me that there are only around 7000 units in the world currently implanted, and only about 1000 in the UK. So I am extremely lucky that I was offered it. It is still very new but the results for me have been amazing.  After 4 failed surgeries (3 spinal and 1 for my gynae issues) I can't believe that I have finally got a good result.  If you are offered this system on trial then it's definitely worth a shot.

Good luck and I hope you find improvement soon.

Spicey
42 yrs old, chronic pain for 21 years.
Decompression/stabilisation surgery with Dynesys Apr'04, revision with PLIF fusion Oct'08, SCS installed Apr'10. Injured neck in a stair fall in July '09.
Failed Back Surgery Sydrome & Fibromyalgia diagnosed 2011.
2014 diagnosed with Adenomyosis and Endometriosis. Surgery to thermalize the endometriosis in May '15
Also suffer from non-epileptic seizures brought on by pain.
Nevro high frequency SCS unit fitted in Feb 2016
Also suffer from anxiety & depression.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Apr/15/2016 at 6:12pm
Thank you Spicey-----

I hope anyone looking at an implanted device sees your story because I can attest to the hell you've been through for years. I'm so glad this new device is working so well. Thank you for sharing. Hugs

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Spicey Quote  Post ReplyReply Direct Link To This Post Posted: Apr/22/2016 at 7:51am
Originally posted by Stevie Stevie wrote:

Thank you Spicey-----

I hope anyone looking at an implanted device sees your story because I can attest to the hell you've been through for years. I'm so glad this new device is working so well. Thank you for sharing. Hugs


Thank you Stevie. You guys know better than anybody the hell I've been through and I literally don't know how I would have coped if it hadn't been for you guys and this forum Heart I will never forget that Heart
42 yrs old, chronic pain for 21 years.
Decompression/stabilisation surgery with Dynesys Apr'04, revision with PLIF fusion Oct'08, SCS installed Apr'10. Injured neck in a stair fall in July '09.
Failed Back Surgery Sydrome & Fibromyalgia diagnosed 2011.
2014 diagnosed with Adenomyosis and Endometriosis. Surgery to thermalize the endometriosis in May '15
Also suffer from non-epileptic seizures brought on by pain.
Nevro high frequency SCS unit fitted in Feb 2016
Also suffer from anxiety & depression.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Edie Quote  Post ReplyReply Direct Link To This Post Posted: Apr/23/2016 at 12:51am
Yes, we know Spicey. Luckily, finally there seems to be a light at the end of the tunnel, as they say. You are a very strong person, and someday, you will be able to get back to enjoy the things you enjoy most...Hugs!...Edie
Chronic pain throughout the spine caused by osteoarthritis (DDD). Started at neck, spread to thoracic, and lately to lumbar area. Most of my spine is affected by bulges, disc height loss and dehydration, bone spurs, annular tears, foraminal stenosis, probable nerve impingement, and degeneration at end plates and facets.

The disease extends from Cervical C2-3 to C7-T1. Thoracic T4 to T10.
Lumbar T12-L1 to L5-S1.
It is all non operable.

Other conditions
TKR R Knee.
Torn ACL, MCL L knee,
Pain on legs and calves
Deep vein thrombosis
Migraine headaches
Painful spots all over scalp
COPD
Hypertension
Chronic Hyperventilation. Caused by anxiety or stress
Chronic depression and insomnia
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Quaver Quote  Post ReplyReply Direct Link To This Post Posted: Apr/23/2016 at 10:24am
I have come slightly later to Spicey's story but can also attest to the hell that she's been through. If anyone deserves light at the end of the tunnel it's her! 
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Severe chronic pain in lower back. Lumbar Spinal Stenosis, Scoliosis, DDD. Hypermobility in ankles caused most problems. Bilateral trochanteric bursitis Osteoarthritis in spine, wrists and hands. Golfer's Elbow. L4-L5 L5-S1 spinal fusion plus cage support and titanium spacers April 2008. Nov 2010, accident in shower caused compression fracture of L2. Missed by A&E. Functional lumbar spine stenosis from herniated disc at L3/L4 July 2015 XLIF discectomy plus XL-TDR very successful! Miraculous improvement in mobility! Hashimoto's syndrome, Depression, High Blood pressure, Fibromyalgia, Raynaud's Syndrome.
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