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Posted 4/5/2017 9:33 PM (GMT 0)
Hello my name is Melissa, this is my first time posting on this forum, I normally post on the Lupus board. I am having extreme pain in my c-spine and neck, I have been getting injections with my pain doctor for a few years. Now the pain has elevated and I have asked to consider a nerve/pain stimulator. I do have many concerns. I have tried to research and there just is not a clear answer on if it's a good idea or not.

This is such a big decision I would greatly appreciate any hearing from others who have had this procedure and what your experience was so I can weigh the pros and cons.

Thank you;
Melissa

Post Edited (Melissa D.) : 4/5/2017 3:36:32 PM (GMT-6)

Posted 4/5/2017 11:52 PM (GMT 0)
Hi Melissa & welcome to the forum. Is the SCS for your neck? The reason I am asking is I did see your post in the Lupus forum & it said it was for neck & back pain, so I am a little confused. Did you have some type of injury to your neck?

A majority of the people that has come through this forum had them implanted for lower back pain & the units did not work for one reason or another.

Some members said the surgery was not as easy as the dr stated. Many of these folks had back surgery so they were not new to surgery.

Several years ago we had one member that had the SCS implanted for neck problems. She could not find a dr in her state that would implant one for neck problems. Every dr she consulted with said it was too dangerous implanting them in the cervical spine. She finally found a dr in Nevada that did the implant. She came back after her surgery & said the SCS unit surgery was a failure. She was completely devastated & we never heard from her again. She said prior to the implant she was desperate enough she was willing to try it anyway. Has the situation changed since this situation happened, I cannot answer that question.

You have many things to think about & personally if this were me I would not do anything unless I was completely comfortable with my decision. I would not let my dr ever try to push something on me either.

A couple of things I can tell you for sure. If you have a problem with a unit, your PM dr cannot & will not be able to help you with it. You will be instructed to contact the rep. The rep has to do everything concerning the unit. Your rep can meet with you at the drs office. Over time the units need to be tweaked & the patient often finds their insurance does not want to cover this expense or they will drag their feet on authorizing & paying. The reps will not work on the units unless the insurance says the will pay. These tweaks are not cheap, its several thousand dollars. There are a lot things that should be taken into consideration such as the leads migrating, not all of them working, leads breaking & even infection. A friend of mine had one put in a few years ago after back surgery. He said his helped a little at first & then nothing. The dr suggested trying another one & he said no to that. It is ultimately your decision Melissa, however, you need to be aware of everything & not go into something blindly. Do your homework so that you can make an informed decision.

Also, if you decide to have one implanted you will have to do a trial to see if it works or not. They use to require a psych evaluation, however, I am not sure if that is still required or not.

You can type in SCS units in the search box above & pull up older threads on the units. We do ask that you not post on those old threads as most likely the member is no longer active here at Healing Well.

Again, do your homework & keep researching for units being used for cervical issues. Take care.
Posted 4/6/2017 12:47 AM (GMT 0)
I have the MRI safe Medtronic implant in my lower back. I have had since 2014. It does help but it stresses me to have a foreign object inside me. Anytime I have pain where the battery pack is I think it is something going on with it. You have to charge it weekly depending on your settings it could be every few days. That is also not much fun. You have to make sure you have a good signal and then stay still for 3 hours or so. When I have an mri I have to set all settings to 0 and then turn it to mri safe. Sounds simple but I have several programs and it stresses me out to think I will lose what I am use to. I have write it all down. I probably wouldn't do it again.

I have never had any extra charges for meeting with reps. They always meet me at the dr's office and make the adjustments. No paperwork involved. Only problem there is they have laid off all the good ones so now they are all new.

During the trail you have it for about 5 days and it can't get wet. Guess what that means? No bath. Ha that still stands out in my head. I did find a way though. Ziplock bags!!! They don't tell you that upfront. I have to have one in the am and pm so don't tell me I can't have one for 5 days. OMG.


Seriously, I would not consider it on my neck and I have bad neck pain as well. I don't think I would do it over. It still worries me that I have it in my body.
Posted 4/7/2017 1:56 AM (GMT 0)
Susie & Bigecase, Thank you for the information, I truly appreciate it. The SCS would be for my neck and mid back, additional leads would actually go up into my skull to address the pain and numbness I have on the right side of my head, face and arm. I have not had any type of injury, no car wreck or anything, this is essentially arthritis and structural break down from steroid use over the last few years to try and control inflammation of my Lupus. This is a BIG decision and I am truly weighing all my options, I am the one who asked about having the device implanted because I need some type of relief.

I have not been told about the reps servicing the devices, etc. I don't know how comfortable I am with the fact if I am not comfortable in anyway with the unit it's going to be difficult to have it removed. Why does this process have to be so difficult, ugh. All I want is a solution without drugs and surgery.

One of the issues I am facing is I only weigh 95 pounds and the neurosurgeon had concerns about where to place the device. So, if there are issues with having the device under the skin, which I've heard from others as well, that gives me and added concern. I had a port placed on my chest and that rubbed on my breast bone because there was no tissue to pad it. It hurt so bad when I slept that it ended up having to be removed and another placed on the inside of my left arm; this one has been in 3 1/2 years with no problems.

Again, thank y'all for your the info and your input as this is a huge decision and one I do not want to take lightly.

Hugs.
Melissa
Posted 4/7/2017 12:05 PM (GMT 0)
Melissa:
I share with you being a long-term corticosteroid patient. I struggle with Addison's disease + mixed connective disorder (a cousin to Lupus). Like you, I am a petite 85 pounds.

My health has been compromised by 25 + years on corticosteroids.

I have made the firm choice to forgo any further invasive medical procedures and/or surgery, especially any intervention where there is higher likelihood that the procedure might leave me in a more compromised state than I am already.

Reading that you are considering a spinal cord stimulator for your cervical spine and facial nerve plexus makes me shudder.

I would have serious reservations about a spinal cord stimulator given your health history of extended corticosteroid use as well as the low value of relief generally afforded by implanted SCS units.

Your history of chronic corticosteroid use will have lowered your body's immune response. You are at higher risk of infection than an individual who is corticosteroid free.

implanted leads and electrodes are common sites for bacterial overgrowth. Infections of implanted leads and hardware can be a nightmare to treat. The SCS placement that you are considering would involve your face and cervical spine in close proximity to the sinuses and brain and cerebrospinal fluid. Infections of the sinuses and meninges can become well-ensconced given the porous bone composite of the inner skull - even life threatening. Warning bells are sounding.

A SCS is similar to an implanted TENS unit. You have to be reasonable in the hoped for level of pain relief that can be actualized.

I see any number of red flag warnings. I think there is possibility you could be worse with an implanted Spinal Cord Stimulator.

Proceed with caution in making your decision.
- K -
Posted 4/8/2017 12:04 AM (GMT 0)
Agree, I don't think you will get the relief you are looking for. It will be more trouble than you want to deal with.
Posted 4/8/2017 3:34 AM (GMT 0)
I am take two immunosuppressants so my body is very immunosuppressed, so that really has alarm bells ringing for me if that is the case, WOW! The reason I started taking prednisone was for adrenal insufficiency and then when I was on infusions for my lupus I received 100mg of solumedrol via IV each month.

All of this has me extremely depressed as I am hurting worse than ever both hands feel like I am holding hot coals today. I go Tuesday for another injection in my neck, but these are exactly what I am trying to get away from. I just don't know what the solution is, I can't foresee living like this.
Posted 4/8/2017 5:34 AM (GMT 0)
Melissa:
Are you seeing an endocrinologist to monitor and treat your secondary adrenal insufficiency?

You and I are in a similar boat.

Long-term corticosteroids are killing me, literally, through collapse of my skeletal system and compromised immune system. I have both primary Addison's disease and secondary adrenal insufficiency, so I depend on corticosteroids for basic survival.

With each epidural injection, you are wrecking havoc on your HPA axis (hypothalamus-pituitary-adrenal gland axis). Pituitary suppression and secondary adrenal insufficiency follow.

One of the cardinal features/symptoms of untreated adrenal insufficiency is severe bone, joint, and muscle pain. It is severe, debilitating, all encompassing pain.

I have to wonder if a portion of your upper back and cervical pain is also due to insufficiently treated adrenal insufficiency. You really need an endocrinologist with speciality in pituitary disorders to regain any semblance of a life. This is a complex and complicated endocrine disorder.

Your years of epidural injections would be reason enough for secondary adrenal insufficiency to materialize. Add in the 100 mg SoluCortef with your regular Lupus infusions and you have a perfect storm of prolonged exogenous corticosteroid use that lends itself to cause pituitary suppression and adrenal insufficiency by association.

Before I was diagnosed, the joint, bone, and muscle pain that I experienced was beyond description. My entire body ached, severely. Day after day, there was no reprieve from the bone and muscle pain. Looking back, it was a very dark time of my life and the horizon looked bleak. If indeed a portion of your pain is related to secondary AI, I can empathize with how demoralized you must feel. I often wondered if I could continue to survive. I was a zombie. Barely existing.

Be cautious about continued epidural injections. The corticosteroids of the epidural injections will add insult to injury to your already struggling pituitary gland and, by association, your adrenal glands and cortisol and aldosterone production. Cortisol is a life-essential hormone. It is needed by every cell in the body. Cortisol is also the body's prime anti-inflammatory agent. Low cortisol = widespread inflammation of the body's connective tissues = severe and broad-based body pain.

An endocrinologist with pituitary speciality would be a valuable consultation for you to arrange as soon as possible. I can give you the names of 2 organizations that can help you locate a competent neuroendocrinologist, if you want to take a new course of action.

I am seen by a neuroendocinologist. My life quality is not great but it is better than it was pre diagnosis.
- Karen -
Posted 4/8/2017 2:44 PM (GMT 0)
You are quite right Karen each time I receive epidural type injection I am adding insult to injury. That is why I began looking for an alternative and came up with SCS, but the more I hear about it I'm not sure that's a good answer either. I've had some individuals ask why I don't consider a pain pump, I don't for several reasons. One of which is many of those medications are metabolized in the liver and lupus is already taking a toll on my liver so I have to be really careful about what I take.

I was under the care of an endocrinologist when I was first diagnosed with AI, but her office staff was so inept, called in the wrong medication unbeknownst to me and I was taking it. My rheumy saw it on my list and flipped out. I have not found another endo as I live in a small town where we do not have one. But you're right I do need to get established with one again, as some of these issues very well could be coming from that.

How do you control your day to day pain? I can handle pain, I have been dealing with pain a long, long time, but this is unbearable and it has caused me to become a literal couch potato. I have lost all quality of life. I have so many things I want to do, I just want something to help me regain some semblance of a life again.
Posted 4/8/2017 3:06 PM (GMT 0)
Melissa, the medication goes into the fluid around the spinal cord & saves our livers. Back in 05 before I had my first one implanted that was the question I posed to my dr & he said no because of the delivery of the medication as it is. The medication dosage used in pumps is less than what we take orally because it is in concentrated form.

You may want to visit TamethePain.com & Medtronics.com web site to get more info. I hear your desperation, believe me, many of us have been there too. I am not trying to push the pain pump by any means, however, it is worth you educating yourself about it.

Take care.
Posted 4/8/2017 6:21 PM (GMT 0)
Melissa:
If you have secondary adrenal insufficiency, which it appears that you do based on your history of exogenous steroid use to treat your lupus, much of your pain may be attributed to low cortisol.

Adrenal insufficiency is a debilitating condition. The muscle and bone pain can be severe and overwhelming. The fatigue experienced is profound and not relieved by rest. I suffered with misdiagnosed Addison's disease for several years, a slow and insidious loss of health. I was a zombie. I collapsed one morning, my body finally unable to compensate for the loss of cortisol. It took a full Adrenal Crisis and ICU admission to garner the appropriate diagnostic testing to understand what was so troubling my life.

You will continue to get sicker and sicker. Pituitary suppression does not correct itself. With each epidural injection you undergo, you are further damaging the delicate HPA axis. In trying to treat your cervical and upper back pain, you are worsening your situation.

You will need to be treated for the adrenal insufficiency before you will find any sustained resolution to your pain. The pain of low cortisol is intense and all consuming. You have my full understanding. But you need to address the underlying cause - HPA axis dysfunction and pituitary gland suppression and low to no cortisol production.

I am also on an adrenal insufficiency forum and can guide you this direction.

The Pituitary Network Association and the National Adrenal Disease Foundation are both non-profit organizations that are excellent resources to someone new to the adrenal journey. They can provide you with endocrinologist referral information. Finding an endo with pituitary speciality is difficult. But it is worth taking the time to fully research physician qualifications.

I am on Palliative Care. My health is fragile. My life quality I would characterize as low. I was a former marathoner distance runner and earned 3 masters degrees. I am a shell of my former self.

I am on a potent narcotic cocktail of dilaudid and a fentanyl patch, 250 mg morphine equivalent. It is a sad reality. I am a tiny, petite person, more child-sized than adult-sized. I am making the best of a less than good situation, as are many of us.

I am happy to help you in any way that I can. I have learned a lot. And am happy to share what I have learned.
- karen -
Posted 4/8/2017 6:44 PM (GMT 0)
Thank you Karen, it truly helps to have someone who can relate to what I am going through and is willing to share their knowledge and experiences. I know everything you are saying is true, sad but true. I had no idea there was an adrenal insufficiency forum, I will brows through there as well.

I live 3 hours from San Antonio where I go for the majority of my health care needs, I will contact my rheumatologist on Monday about a referral to a new endocrinologist. I know this is the direction I need to go, you have just reminded me to stop ignoring this fact before I too go into a complete adrenal crisis.
Posted 4/8/2017 8:56 PM (GMT 0)
Melissa:
That sounds like a great good game plan to seek an endocrinologist.

The adrenal insufficiency forum that I frequent is on MDJunction. You can find it listed as the "hypocortisolism" forum on MDJunction. The site has low member involvement simply because it adrenal insufficiency is rare in the general populace. I will look for you. My on-line name is "Button." I learned more on this forum than from any physician or clinician.
Posted 4/8/2017 9:51 PM (GMT 0)
Went to MDJunction, searched for "hypocortisolism" but could not find a group with that name, everything kept taking me to adrenal insufficiency, could the two groups have been merged?
Posted 4/9/2017 1:28 AM (GMT 0)
Melissa:
I just popped over to the MDJunction site to verify the correct naming of the support forum. The MDJunction forum is titled the "Adrenal Insufficiency Support Group." Under this main title header is a secondary title, "hypocortisolism forum."

Hypocortisolism is another nomenclature to describe a state of low or inadequate cortisol. The prefix "hypo" = low.

You have found the correct support forum that I also participate in.

My on-line name there is "buttonbutton."

You can read and browse through old threads and posts. Bob3Bob, LittleMissMerrySunshine, and Catia are each knowledgeable posters. Posts by these 3 individuals are packed full of wisdom and valuable guidance.

- K -
Posted 4/13/2017 8:29 PM (GMT 0)
Seashell - can I contact you regarding the hypocortisol? I've had some tests done recently but am not able to see a doctor at the moment due to my insurance causing me all sorts of problems with referrals. I don't know how to send a direct message on this site. Thanks, C

Post Edited (Candy_Apple) : 4/14/2017 2:37:55 PM (GMT-6)

Posted 4/14/2017 8:31 PM (GMT 0)
Have any of you tried a micro current unit..it is external for pain, and helpsme tremendously..

Tens was way too harsh for me, so an alternative dr. Had suggested m.e.n.s for sensitive patients.

So no implant , but pain relief..

I am usually on the fibromyalgia forum.

LJ
Posted 4/14/2017 9:04 PM (GMT 0)
Candy Apple:
I wasn't quite certain myself on the matter of how to send a personal message or e-mail. So I spent a few moments looking into this.

A few moments ago I changed my profile to show my e-mail address. If you go to the profile page for my online name, (Seashell), my e-mail address will be available to you.

I will revise the setting to "hide" my e-mail address once you have contacted me.
- Karen -

Post Edited ((Seashell)) : 4/14/2017 3:12:08 PM (GMT-6)

Posted 4/14/2017 10:23 PM (GMT 0)
^^^ thanks so much Karen- I will send you one shortly- so you can remove it now!
Posted 4/22/2017 2:02 PM (GMT 0)
Good morning Melissa,
I am not quite 4 weeks Post op from the SCS. I have the Boston Scientific Precision Spectra w/ paddle leads implanted at T5. I am a rare case that has both upper and lower back pain. I have several cervical disc issues as well as lumbar I also have a twist in my spinal cord that starts at the top of T spine and turns completely sideways mid T and then goes back to almost like it should be by the end of that section. So I have pain all over.

The paddle provides excellent coverage for upper and lower back for me. It was a very difficult surgery especially because of the twist but my surgeon was able to place the paddle so that I have stimulation literally from head to toe. I don't think he thought I would have that much range in it. They were all apprehensive because in the trial they could not achieve any stimulation on the left upper back because of my spinal cord.

So it can absolutely be done. I am having a lot of pain now but its surgical related and I'm a dumb butt and decided to come back to work after 3 weeks. I just couldn't risk losing my job.

It was intense for the first 2 weeks and it really started getting better afterward. Mostly muscle spasms during that time. I was not happy with the trial because the leads moved right away but even with that I could tell it helped with some of the pain.

That's another reason they went with the paddle for me. Also I am nearly 6' tall and there's a lot of space between point A and B. The leads just weren't right for me. I have heard of others who love what they have. I have a friend who has the BS leads for low back pain and she is so happy with it. She can't imagine life without it now.

At least on the functional capacity of my unit, I am thoroughly satisfied.
I wish you the very best luck! Please let me know if you have any questions or anything. I'll be happy to help if I can. Take Care!
Posted 5/1/2017 3:40 AM (GMT 0)
Hello Melissa. I have an Interstim stimulator in my lower back for Pelvic floor dysfunction and if I had it to do over again I wouldn't do it. I think these nerve stimulators, in theory sound good, but in practice are not very successful. The pain from the surgery was horrible, and wasn't worth the minimal relief I've gotten from having the stimulator. Even now over a year later I will still get sharp pains at times where my stimulator is. Also, you have to take into account, most of them have to be serviced about every 8 years. This is to check the leads and change the batteries. I was hopeful that it would work for me because I was desperate, and I was disappointed.
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