Monday, March 21, 2011

I Need Your Opinion: Neurostimulator Implantation

Hi, everyone! It has been a few months since my last post. There has been a lot going on; there was a death in the family, a new relationship, lots of doctors appointments and lots of flank pain. In addition, there has been a lot in the news, and everything in my life's been overwhelming and has been causing lots of anxiety. Needless to say, I am hoping to again post more regularly now that things are a tiny bit more calm, and I have a giant list of things to post and hundreds and hundreds (literally) of emails to respond to (thank you for being such dedicated and wonderful readers!). Bear with me as I get caught up!

One of the things that has taken over my life, as you know from previous posts, is this horrendous flank pain I deal with. It is unrelenting, as an EDSer and friend who has horrific flank pain commented to me recently, and can really bring a person down to the bottom. There have been days I am curled up in bed in crocodile tears, clutching at my sheets, screaming and writhing in pain. I have all sorts of pain in my body, but nothing that comes close to this. Refer to the photo below for location. I have described it as:

"...terribly hot, writhing pain that never goes away, and is only slightly muted by the combo of pain meds, anti-spasmodic meds and a heating pad. The docs have no idea what is causing it and have just labeled it "nerve pain"."


The location of my flank pain, right side back

The location of my flank pain, right side

The location of my flank pain, right side front

Currently, Dr. Pain Relief, the new pain management physician I am seeing has me on a regimen of pain meds, fibromyalgia meds, muscle relaxers and Lidoderm patches. I am taking Oxycontin 15mg 2xday, Norco for breakthrough pain 10/325 up to 4xday, Savella (a newer fibromyalgia med) 50mg 2xday, Flexeril 10mg 2xday, and using Lidoderm patches daily for my back/flank pain. The new combo has me feeling a lot better with the pain in most of my body. I am not having as much pain in my hips which is fantastic, and I don't notice most of the "normal" pains in the forefront. If something subluxes, the pain is bad, but seems more manageable. However; the pain med combo is doing nothing to touch the flank pain. Nothing at all. The Lidoderm patches placed directly over the pain make it ever so slightly less annoying. Not a lot though.


Lidoderm patches on flank pain

This has left us searching blindly, as with most EDS symptoms, but now we're left without a lot of options. We've tried everything: TENS units (which I already own), higher doses of pain meds, injections, nerve blocks, etc. None of them help, or only help slightly for a few hours (like the nerve blocks, and I can't be injected with those every few hours!). My doctor thinks I should try a neurostimulator, also referred to as Spinal Cord Stimulators (SCS). At this point, I feel like trying anything, but I am terrified of having something implanted in me.

How a neurostimulator works:



An example of how it helped a patient:


I have read a ton of information and watched a bunch of videos on neurostimulation. SCS will not relieve pain, but hopefully minimize it to "take the edge off" or allow me to lower the amount of pain medicine I take. The doctor has told me it is very unlikely it will take the pain away, but if it works, it will make a significant difference in my daily flank pain. There is a required minimum of 50% pain relief for the insurance to cover the costs, though at this point I would gladly take a 10% improvement. (This surgery runs over $30,000 without insurance!) There are risks, as with any surgery, like death, paralysis, infection, etc. There are also contraindications; for example, I will never be able to have an MRI or MRA again. I will definitely document my process either way. One good thing about this, if I decide to move ahead, I get a trial run. The leads are implanted while the battery pack/generator remains on the outside for about a week to determine if this will help. If it does, they proceed; if not, I won't have the surgery.

For my readers who are familiar with SCS: 

  • Can you please provide me with your opinion/story of neurostimulation?
  • Have you or someone you know had the surgery? (I am hoping to find people with EDS or fibromyalgia, etc., to find how it helped/didn't help them.)
  • Did you receive relief? How much?
  • What was your recovery time?
  • Was the surgery worth it?
  • Would you recommend SCS?

Thanks so much for all of your time! I am very scared and having a hard time making a decision. I want relief more than anything. I have also watched lots of videos on YouTube that have shown patients who have had wonderful relief and who have had terrible experiences. I am very lost. Any help you are able to provide would be greatly appreciated!

I hope you are all well and enjoying a low-pain week! My love goes out to all of you!

xo
dani

14 comments:

Anonymous said...

Hi Dani
I have EDS (hypermobility),Fibromyalgia,Small Fiber Neuropathy,arthritis,osteporosis and take pain meds as well but much less than you. The pain stimulator was offerred to me, way back when and the problem that I saw with it for me and maybe you too, is that it seems to work down your legs. Your pain on your side of your ab is not going to get touched by the stimulator? I also have that same pain and have complained about it for years, to no avail. Nothing has helped me, so, I'll be watching closely to see how you do. The blog does help others!!! Thanks for taking the time to do it. Good luck

Anonymous said...

Hi there. Someone left a comment for you in our newsletter: http://edsalert.wordpress.com/2011/03/22/blog-i-need-your-opinion-neurostimulator-implantation/#comments

Lady of the Ozarks said...

I don't have any experience with the neurostimulator implantation. I do know though, that a lot of this month's "Pain Pathways" magazine dealt with it. You might want to see if you can get a hold of the magazine. Their website is painpathways.org. The issue I'm talking about has a blond doctor on front. I hope that helps.

kelly said...

I am a pain physician in Canada where we don't have the same access to SCS - mostly because the universal health care system doesn't cover them unless strongly indicated.

In my practice, there are really only two true indications: 1) failed back surgery syndrome, 2) complex regional pain syndrome. The trouble is that the stimulator paddles can only cover 2 or maybe 3 dermatomal levels so you won't get good coverage of your entire flank - which is more like 4 or 5 levels. Also, if TENS doesn't really work, then SCS is unlikely to work because it is really the same idea.

Many people are often shocked to hear that Canadians don't have ready access to this type of technology but I find that these devices are far too often offered to people who won't benefit from them - as long as they have the right insurance plan.

Fibromyalgia will NOT respond to SCS.

It sounds like your doctors are doing the right medication trials. Perhaps intravenous lidocaine infusions would be a consideration?

Carlisle ebrahimi said...

Hello there I was looking at mrdecation side effects and ran into you not sure how much of this is self inflected of any at all but I have strong belief that if there is no real evedance of anything, such ad phibromiolga or any other of such pain I would say maybe stop all drugs together let your body cleans out and tough it out, and I do undertake it's easyer said then done, always I had one surgery and believe me it was hard to do I just didn't want to get my bossy use to the meds,and all medications make me buypolar if that means anything to you,taking them then the lack of takeing them all makes me bypolar dosage up dosage down, the one thing my dr said I truly believe is once you take the pain away temporary buy meds it actually create pain weather same Omar or elsewear and if pain is back any way why take it at all?!!! Not to say a person who needs it should because pain dose take your blood Presure high, so can't go too long but if your legs and such work try yoga meditation and power of your mind you might be taken buy surprised f what you and your thoughts are strong enough to do, aswrll as an organic diet all the crap and hormone and antibiotic in the food dosnt even allow you to heal with outside meds clean all out start over again just my opinion we are Stroner then the eye meets , we can go through allot more then pain and mood swings and be fine our hart alone pumps 20 thousand halons of blood a day one shouldn't underestaimet the human boddy so wish you all the best and hope you over come all this aggravation and fined peace live health ;) laughing is the best med and whatever I'd giving you anxiety shouldn't what meant to be will be nothing to fr but fear in itself good luck

Nathan AUS said...

i am not sure how i came across your webpage and im not sure when this was posted but i thought id share my experience.

I have complex regional pain syndrome, im 21 and have had for about 8-9 years now, started when i broke my right ankle (had surgery) never recovered, the crps spread up my leg to my knee then spread to my left leg up to my knee. oh an i also have bi-polar (adds to the fun ;)

have had just about every pain management procedure done under the sun, from nerve blocks to ketamine infusions. I myself am a registered nurse and being on my feet all day and needing high doses of opiates wasnt working (they made me drowzy, not a good thing whilst your a scrub nurse or when working in emergency).

I had the spinal cord stimulator put in may 2011, i live in australia and am lucky to have great health insurance (procedure costs $25000).

I have had a lot of surgical procedures even an ankle fusion and the SCS surgery was horrible. i had the trial done then they asked me if i wanted the permanant system, this was a difficult decision to make as i was under a massive amount of pain killers but i decided to take the gamble an say yes.

I had the permanent system put in (again extremely painful). I am told there are over 9 million combinations when it comes to the programming of the device. I was in hospital for a bit over a week then took it very easy the first month, unfortunately one of the wires had moved so i had to go back and have a much bigger wire implemented (meaning everything had to be opened again).

i recovered from the second surgery and it took about 2-3 months before we found a program that worked for me.

the acute recovery time is 3 months (you are unable to bend, twist, reach up high or low and cannot lift anything heavier then 5kg-8pounds)
The full recovery is about 6 months.

I now have back pain but that is only because my core muscles have become weak from not doing much exercise.

the procedure itself was a long and still painful process but i am getting relief. some days ill even have no pain at all, other days ill have the normal pain i used to have. but my pain killers have been reduced by at least 50 maybe even 70%.

it is a big procedure and if you do go ahead with it be prepared knowing that it may not work for you. I am not familiar with your condition but as im sure youve read the system is not suitable for everyone.

I am back at work, studying full time, and now have a social life, i can go partying with my mates, i can now stand up for longer then 15 minutes, its changed me as a person.

i hope i have been able to give you some insight into the procedure. Yes the pre requisite for the permanent system is 50% pain relief (even if its only 20% how are they going to know?). At the end of the day if your covered by health insurance and have tried everything else then what else do you have to lose except that burning question of - should i have had it done?

Nathan

Nathan AUS said...

i could not disagree more with Carlisle ebrahimi comment.

Firstly you clearly have no idea what acute chronic pain is. secondly you have no idea how pain medication works. third you have no clue to what the difference between bi-polar an withdrawls are.

I actually find it offensive for someone to say 'just tough it out'. She is toughing it out, everyday when she gets out of bed she is toughing it out! every time she decides to blog or share she is toughing it out! every time she goes to a doctors appointment she is toughing it out!

you believe there is no evidence of these conditions or pain itself? have you ever read a medical book, a magazine, a brochure? a 12 year old has a better understanding that there are medical conditions that cause pain.

yes i do believe the mind is a powerful tool and thats what has kept her going, thats what has allowed her to share her life.

Anonymous said...

Hello:

This post is also in response to Carlisle ebrahimi.

In 2001, my two sons were diagnosed with EDS by Dr. Wenstrupt at Cincinnati Children's Hospital Medical Center (CCHMC). While it was determined that their genetic disorder was inherited from me, I have not been treated for my long list of symptoms or taken medication for my chronic pain as I should have.

Around 2007, Dr. Brad Tinkle began treating my sons at the EDS Clinic at CCHMC. While having access to the "best" I did not inquire about seeking specialized treatment in Dr. Tinkle's adult clinic until only two days ago when I contacted his genetic assistant by e-mail.

Why did it take me so long?

I thought about receiving treatment nearly each morning when I felt shooting pain the instant my feet touched the floor; I thought about it during the day as I modified simple tasks that many healthy people take for granted; I thought about it each time I had to dry my sons' tears when they felt different and inadequate in comparison to other boys their age; I thought about it when I encouraged one of my sons to stand tall when he was bullied and alienated by others due to his EDS disability; and I thought about it the morning I stood-up from my kitchen table and spontaneously miscarried my baby on the kitchen floor due to my high-risk pregnancy status from EDS. I can assure you that this list goes on and on and on.

Do I regret not seeking management for my pain?

Absolutely!! I suppose I had no energy left at end of the day to worry about myself.

Yet, had I made the time to seek an appropriate management plan for the pain which is now unbearable, I would have been in a much better position to take care of my family and me. MAYBE EVEN LAUGH MORE!

Pain from EDS is far greater than physical pain. It can tear at your heart and goes straight to your soul.

Dani, I send you my best. I am pleased to have found your blog today. You are very brave.

Take care.

Cathy said...

I have a neurostim implanted for chronic lower back pain. I had it implanted, then one of the nodes moved so I had a second surgery. A few months later I learned my surgeon had placed it in the wrong place so I had to have a third surgery. My recovery was not nearly as extensive as Nathan has described. Within 3 weeks I was down to an occasional ache. You do have weight lifting restrictions, and should not bend, reach, twist etc.
We realized it was in the wrong place because all of my stimulation was in the exact place you are having your flank pain. My pain is at the L4-L5-S1 area. Once they moved the nodes down one vertebre I was getting the lower coverage I needed. Guess I am sharing this to say that the stimulator CAN cover your area of pain.
The trial is practically painless. I found the insertion of the nodes to be less painful than epidural steroid injections. So if your insurance will pay for it I would give the trial a shot.
I wish you the best of luck as you continue your journey.

Anonymous said...

HI MY NAME IS LUCY I HAVE HAD THE TRIAL RUN FOR THE STIMULATION AND ALL I FELT WAS ELECTRICITY DOWN MY LEG I TRIED TO CONTROL IT BUT IT JUST WOULD NOT WORK WENT TO THE DOCTORS THEY TOOK IT OUT VERY-PAINFUL NOW THE QUESTION IS I REALLY DON'T KNOW WHAT TO DO SHOULD I GET THE FERMENT ONE PUT IN OR NOT IM VERY AFRAID TO GO THROUGH WITH THIS PLEASE HELP

CRPS News said...

SCS has good results with treating chronic pain. It is reversible and allows for a trial period, so some patients may find it to be a better initial option than surgery.
transcutaneous electrical nerve stimulation

Brian said...

Hello:

I came across your page and thought I would lend my experience with you. I had Neurostimulator implantation in 2009, after a two-week trial. my problems are multiple failed surgical attempts at fusion of L-5-S1 I have BAK cages and pedicle and screw fusion there. I have residual chronic nerve and muscle pain that took over my life as you described. I chose Stim. Implantation under the knowledge that at best, it might relieve 30-40% of my pain. I was ready for even 5-10%!!!! I have been pleased that I did it. it provides a gentle vibration feeling that interferes with your pain receptors in the brain... It kind of fools your brain to concentrate on the vibration, rather than the pain signals. I believe that after some adjustments from the rep from St. Jude... I have about 30% pain relief and in combination with smaller amounts of nerve pain drugs and even smaller amounts of narcotic pain meds.. I can live a relatively normal life, all things considered. I am still unable to work a conventional job and am disabled... but at least I am not in the bed all day as I used to be. Make certain that if you get the procedure done, that you get the most up to date , re-chargeable stimulator that lasts for 10 years though. don't opt for the one with a non-rechargeable model... it might fail earlier than advertised and force you to have revision surgery.. not a pleasant experience. Good luck to you.

Susan said...

Out of curiosity, have they looked into refered pain? http://www.ualberta.ca/~loewen/Medicine/GIM%20Residents%20Core%20Reading/ACUTE%20&%20CHRONIC%20ABDO%20PAIN/Diff%20Diagnosis%20Abdo%20Pain.htm Also, the major thing that comes to mind is Shingles, did you ever have it that this could be post herpathic pain?

Thank you for all of the information, my pain doctor just mentioned a nerve stimulator for my SI pain. You have a good deal information for evaluating nerve stimulators with EDS.

Anonymous said...

Hi I have ehlers danlos and was doing some research on POTS when I came across an article which mentioned the nutcracker phenomenon, I looked it up and found this article
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2878259/
Under the section clinical features it mentions flank pain like yours and I remembered your post about flank pain. Could be worth investigating for you. Hope it helps.
Dominique