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SCS for 83 year old?

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Posted 11/13/2013 10:23 AM (GMT 0)
I would love any advice I can get to help make an informed decision.

My mother is 83 and has extreme back pain.  She has had 2 surgeries, the last one being a spinal fusion 6 years ago.  Her pain recently has gotten so bad that her quality of life is almost zero.  She can barely get out of bed.  She cannot tolerate any pain meds to speak of.  Anything more potent than Vicodin 5mg 3x per day and she gets on the crazy train, or simply sleeps 24 hours, not even staying awake long enough to eat or use the bathroom, and when she DOES wake up, still has the pain.

She had a steroid injection in her SI that gave her immediate relief from the pain.  She was basically pain free (and a new person) for a week.  Then suddenly, the pain returned, way worse than before.  Second injection did nothing.  Then she had an Epidural injection, which also did nothing.

Today the pain specialist sent us to a surgeon to get his opinion.  He THINKS she has stenosis, and said that depending upon what kind of relief we are looking for, he can do surgery to clean up this area, and open up the stenosis, or we can do a trial of the SCS.  He said that the surgery to clean up the stenosis will fix only that pain related to stenosis, but that the SCS will fix that pain, as well as other related issues.  We are returning to the pain specialist next week, and I hope to make a decision by then.

So, my questions (and there are many blush )

I noticed most of the people posting here are much younger.  Does anyone in their elder years have experience with SCS?

Which procedure would YOU have done given the information we have.

I noticed reading many posts, that there are different brands and types of SCS.  Is there any one brand significantly better than another?

I want to make sure that the surgeon is qualified and skilled, and that this is not his first or even 10th try at this procedure.  Any suggestions on how to find this info, besides directly asking him?  The pain doctor highly recommended him, and the pain doctor has had his clinic since 2001, and has all the proper accredations and licenses, so I pretty much trust his judgement, but it never hurts to ask.

Would you go to a second pain specialist before having either procedure, to get a second opinion?

TIA, and I am looking forward to any and all advice I can get.

Wade

 

Post Edited (tatterdema) : 11/13/2013 3:33:21 AM (GMT-7)

Posted 11/13/2013 12:03 PM (GMT 0)
Hello Wade and welcome to HW and the CP forum! I'm so sorry to see that your Mom's suffering such pain at an age life should be simply blessed! It truly must be awful to see your Mother in such pain with little or no relief. Kudos to you for trying to get the right or best answers for her.

Unfortunately at her age medications tend to cause CNS effects such as seen in your Mom, lethargy, disorientation, and can even push into psychosis therefore making the mode of pain management difficult at best.

As for surgery? At this stage of the game were it my Mother? I would seriously not consider it unless several surgeons aggreed it would give her a much much better quality of life! The risks are great to someone in that age group. General anesthesia can be very risky, intubation in the elderly is double risky as well as compromised respitory and cardiac functions due to the natural aging process makes the stakes higher and add in the slowed healing ability of a person as they age and that could send her into a very very long recovery time. Just thoughts here and opinions based on many years caring for the elderly.

As for the Surgeons qualifications all that can be checked out by going to the AMA website but there's absolutely no better way then Google and seeing what his patients are saying!! Reviews may be many or few and the less you find the better. You also need to know our personal mantra so to speak around here's to make sure that surgeon is Board Certified in his specialty, you can also get that from the website for his branch of surgery, say whether he's Neuro or Ortho?

The SCS and I have no experience personally with them other then working with patients who have but we have several folks here who do and they will certainly give you their points of view as they see your thread and questions. The best way again to find the good and weed out the bad is checking product reviews and what folks are saying, are there too many recalls by that manufacturer? Are there an overall high incident of complaints,? Those sort of things. All manufacturers have product reps that can answer any questions you may have. And do ask! Never too many questions!

I also wanted to mention that hydrocodone has just released a new slow release form of medication called Zohydro and it may be something that she tolerates more nicely, as it's a smooth even release of hydrocodone without the aceteminophen in it. No ups and downs as the medicine spikes and peaks as seen with short action meds like Vicodin. Just something you can ask her Dr about whether he thinks she may get better more even pain control.

Again welcome and good luck!
Posted 11/13/2013 12:24 PM (GMT 0)
Thanks for the quick reply.  I do have those concerns about her age, and her primary care doctor would need to sign off on it before doing anything.  When she had her fusion, she was supposed to be in the hospital for 3 days, and ended up being there for 3 weeks, with many issues like kidney failure, hospital psychosis, etc.  It was awful, and we dont want to go through that again.  On the other hand, she is so miserable, I cant imagine that her life expectancy is going to be long anyway, dealing with that much pain.

The surgeon is a board certified orthopedic spine surgeon.  Is that better, worse, or no different from a Neurosurgeon?

Yes, the medications do push her into psychosis, to the point that she becomes uncontrollable, and has to be strapped down.  She is completely coherent, with not a bit of memory loss or other mental issues without it.  The vicodin help a tiny bit, but not a lot.  I will ask him about the Zohydro, as that might be an option. 

From what the doctor said, the trial period is minimally invasive, and they do not intubate or use general anethesia, so I guess I am leaning on letting them go that far, and see if it even gives any relief at all. 

Post Edited (tatterdema) : 11/13/2013 5:27:36 AM (GMT-7)

Posted 11/13/2013 12:41 PM (GMT 0)
Board certified in his specialty is exactly what you want to see!

Yes the trial is minimally invasive and well be good as far as finding out if its going to give her enough relief to make the permanent worth the risk.

I sure hope you and her Drs find something to allow her to get relief and live out the rest of a long journey peacefully and comfortably as it should be.
Posted 11/13/2013 2:46 PM (GMT 0)
As a senior myself, I would not recommend surgery for someone unless the surgeon was SURE he could help, based on testing. Rather, I would suggest talking to an anesthesiologist pain doc about facet joint nerve ablation. Only an anesthesiologist has the training to do ablations or work on thoracic and cervical nerves.

After years of injections by my very experienced physiatrist pain doc, I had 6 lumbar nerves ablated by the anesthesiologist partner (one side at a time) and am ecstatic about the results. This is done very much like the injection, with the addition of heating the covering on the nerve to stop the pain signals. No anesthesia except local; it hurts, but not worse than injections. Of course eventually the nerves grow their covering back, but the procedure can be redone.

Surgery was given as an option, but that's the real last resort! The ablation procedure is preceded by test injections to see if ablation will work. Since injections originally did work for your mom, there is a reasonable expectation that ablation might.

Regular facet joint injections don't work long, at least for me. Epidurals did work, but stopped working after a few years. You need to find out what types of injections were done originally Ablations are done on the facet joint nerves - IF the test injections stop the pain for as little as a few days.
Posted 11/13/2013 2:59 PM (GMT 0)
Hello and welcome. Feel very bad for your mom's pain situation.

At her age, any surgical procedure could be a big deal, and recoveries could be more difficult, not saying not to go that route, but any good surgeon would take that into consideration, as well as the rest of her medical health/history as a factor.

And at your own suggestion, once a course of action is decided on, I would take the time to get a second, independent opinion, before committing to the action. Wouldn't hurt, if the second opinion is way different than the first, then that will tell you that its going to be a more difficult decision.

Good luck, to you and your mom, I know none of this is easy for either of you. I am watching over my 87 year mother, who is the most non-compliant patient you could imagine.

David
Posted 11/13/2013 3:50 PM (GMT 0)
Thanks for the replies and support.

Her pain doctor is a certified anesthesiologist.  He did the original injection, which a believe was a facet joint injection into her SI joint.  Then a different anesthesiologist did the second one in an emergency room because her pain was so bad she was literally screaming and moaning at every little movement.  Then the third injection was an epidural.

I did ask about ablation because I had read up on it, and thought it sounded like a reasonable direction, but the doctor said that he didn't think it would help because there are so many nerves involved, or something along those lines.  We see him again Tues, so I will have a list of questions to ask, including if there are ANY other options.  Then I think I will take her back to the doctor that did the second injection for a second opinion, because he had mentioned ablation also, but cannot do it because the local hospital doesn't have the equipment.

I do have a question about the Zohydro.  Is it anything at all like Oxycontin?  She did fine on the oxy for a couple of days or so, but I think it built up in her system.  That makes me hesitate to even try anything time release. 

It is so frustrating, I cannot imagine what you younger people are going through, with your whole life ahead.

Posted 11/13/2013 5:34 PM (GMT 0)
Hello Wade and welcome to the forum. I am so sorry to read the problems your poor mom has going on and the incredible pain she is experiencing.

You have asked for some opinions SCS unit versus clean up surgery. Now if this were my mom and other than the pain issues and she was healthy I would do a clean u surgery only after some testing was done such as an MRI. If she has hardware & cannot have an MRI then I would have a CT with contrast done.

Stenosis is narrowing and when there is narrowing there is nerve involvment such as a pinched or compromised nerve or nerves. Depending on how long this has been going on many times once the pressure is relieved off that nerve the nerve can heal. But no dr can tell a patient 100% the nerves will heal & they will be pain free but you have a pretty good chance at it.

Regular pain medication has little effect on nerve pain. There are several medications used to treat nerve pain, Gabapentin, Lyrica, Cymbalta, Amitriptiline to name a few.

The surgery from the implantation of the SCS Units is pretty brutal and not something I would want to see me or my 83 yr old mother undergo. I think my odds of getting better are more with clean up surgery than a relying on a machine that may not even work once its implanted. Yes, patients have actually had them implanted and not work. We have had people say they would not have had the surgery had they known how brutal and hard the recovery was, this is people in their 40's. I am not a fan of the SCS Units because I have seen more bad than good. All you have to do here is use our search feature here at the forum & type in SCS units and you will be able to pull up a lot of info on them. We have had a lot of people that has the units still needing to take pain medication, yes even with these you still have to take pain medication. Now we have had a couple of people say they loved it but those are fewer than the negative seen here.

The SCS Unit does not make the pain go away, instead the machine is suppose to create a sensation that blocks the pain signal to the brain. Some times this works & sometimes it doesn't.

It is usually whatever brand the dr is pushing. I have not heard much on which one is the best of best.

Another thing you may want to check out is a website called www.SpineUniverse.com, do some reading there about your moms condition. This is an excellent site that deals with nothing but spine issues very reputable.
Posted 11/13/2013 5:40 PM (GMT 0)
Hospital doesn't have equipment? If the docs are doing injections, surely they are using x-ray machines that rotate around the spine (fluoroscopes). The rest of the equipment is just simple stuff they ought to have. My docs do this stuff in their office - room with table and fluoro in it. Sounds like hers didn't want to do anything because of age, or maybe they're just afraid because of the previous surgery.

I'd ask who CAN do ablations.

I just take tramadol for pain. It's mild in the pain department, but it raises serotonin which gets me past most pain. I've gotten tolerant to opioids, need Norco 10/325 as a starter after surgery and it's not nearly enough, but no tolerance to tramadol in 6 years. I've tried other meds that raise serotonin, but they don't help.
Posted 11/13/2013 7:42 PM (GMT 0)
Mom did have either an MRI or CT scan with contrast. I am pretty sure it was an MRI, right before the pain Dr did the first injection. I took the results with me to see the surgeon, and he said she DOES have stenosis, which is why that was one of the things he recommended. I will have to ask more questions, as I really do not understand what his reasoning is. Something about what our expectations are. If they are to just relieve a certain pain, then the clean up, but to get rid of all the pain, the SCS. At least that is what I believe he said.

As far as the ablation, her regular pain Dr. does do them. But the one she went to in the emergency room in our small town said he didn't have the equipment, but that her regular pain Dr. does, and could and probably should do it next.

I tried her on Tramadol also, because I have used it with good success. It didn't seem to help her, and made her really sick to her stomach, where she could not hold food down. I will have to ask about the other meds, I suspect they have not tried them because of the poor shape of her kidneys.

I am really glad I asked here, because at least now I know that it is not a walk in the park surgery like the surgeon made it sound.  Also I have read a lot about the leads migrating.  She has severe Parkinsons tremor, which I am thinking might make the leads more likely to migrate.  I will check out that website also. I have a week to do as much reading and asking for advice as I can, and that is what I plan on doing.

Post Edited (tatterdema) : 11/13/2013 12:52:57 PM (GMT-7)

Posted 11/13/2013 7:45 PM (GMT 0)
Alcie, he said this was discussed previously but because she has so many nerves involved this is why the dr said he did not think it would work. I know when there are multiple nerve issues a lot of time the drs will not do the ablation. Susie
Posted 11/13/2013 9:37 PM (GMT 0)
Thanks, Susie. I did read that but considered that I had 6 done and could have had more. I don't know what was meant by "many." I'm absolutely not insisting on any procedure.
Posted 11/13/2013 11:01 PM (GMT 0)
Wow.  I've read this thread a few times to try and digest all the information you've shared.  I'm beside myself with the conflict you must feel, and my heart goes out to you, and your Mother, and I thank God that she has you to care so much for her well-being.

Many doctors equate "existing" with "quality of life," and do not make a distinction.

I am just tossing ideas out there, but,....has she seen a gerontologist at all?  I'm not suggesting any particular type of treatment, but perhaps for another opinion, seeking out a qualified physician who specializes in the treatment of the elderly would, at least, have vital input to help guide you, and may even have suggestions.

Their specialty is so specific, to take her age and condition into consideration, as opposed to a neuro or ortho who may just view first the condition, second the procedure, and third her age.

Getting someone in there familiar with working with an older adult with multiple issues might be at least a good place to get some type of review.

I have severe stenosis, and on 12/12/12 I underwent back surgery where I had laminectomies, spinal fusions, but they also did decompressions on my entire lumbar spine because I was within weeks of losing control of my legs and my bowel and bladder function.

I am 50 years old.  And I've also had two total hip replacements (within a year, plus the back),....and I want to share something with you:  The recovery from decompression surgery is extremely intense, the pain is severe, the rehab is grueling, and the fragility and integrity of stability is severely compromised.

And I'm not in my 80's.  It was the most painful surgery/experience (well, to date anyway),...

I'm stating this so you and she have an honest understanding of what POST-decompression surgery rehab is like. 

I'm wondering if ablation might be an option for her, especially because it's less invasive than doing all those decompressions, you/she could recover without, I would assume, the introduction of narcotic medications.

Ultram is an exceptional medication.  Has she tried it?  I cannot take it because of other meds I'm on currently, but when I did take it, I swear by it!

Please keep us updated.  I'm very interested in how you and your Mother will decide to move forward with this.

M.

Posted 11/13/2013 11:48 PM (GMT 0)
Thanks Merrida,
I don't think they are talking about doing spinal decompression, but maybe they are. There are so many terms that I am unfamiliar with, and trying to learn quickly. He was talking about cleaning out stenosis in one area, and said it would not be as severe a surgery as her fusion was.

Her primary care doctor is a Gerontologist. And you are right about people equating existing and quality of life. For instance, she gets a little relief from Aleve, but her kidney doctor warns that it "could" shut down her kidneys, and under no circumstance take it. Her primary care doctor said if it helps, give her small amount, for quality of life. He is going to have to approve any surgery or invasive procedure, so I will have a long conversation with him about it.

On top of everything else, she has gone from living alone, driving, and doing everything herself, to this state in less than 6 month. Now I have home care, and am trying my best to keep her in her own home as long as possible, but know it may not be feasible forever. Trying to find assisted living that is acceptable for when things go farther south is not an easy feat in itself.

Reading this forum has helped greatly in knowing I am not alone, and actually am very fortunate for the good health up until now.
Posted 11/14/2013 1:12 AM (GMT 0)
tatterdema

I wanted to give you my experience with my SCS. The trial went way better than my actual implanted device does. But mine is for thoracic pain.
I was not ready for the pain I had post op either. I had to stay in the hospital for 3 or 4 days to control the pain. My implant was done with me completely awake though.

Take care,
Bill
Posted 11/14/2013 1:35 AM (GMT 0)
Wade do not let any of these drs rush you & your mom in to making any snap decisions that you may regret later. Get yourself a tablet & start making a list of questions. I am quite sure your head is spinning trying to take all of this in, I do feel for you. There is no way I would try to hurry through and try to make a decision in a week unless I felt like I was ready to give my answer.

If anything I would ask her regular PM dr to do an ablation to see if that will calm those nerves down somewhat. Has she been tried on anything like a Medrol Dosepak, its steroids, a lot times they will use a short course of steroids for the inflammation.

I am glad that you found us, ask any question you like. If we can answer it we will, if we can't we will tell you we don't know. It really sounds like you have your hands full.......Susie
Posted 11/14/2013 7:26 AM (GMT 0)
Hi Wade,

Just to reiterate what Susie/Straydog said - the SCS does not 'fix' the pain, and any doctor telling you that is misleading you - whether intentionally or otherwise. It's difficult to describe to someone who's not experienced it, but it creates a sort of tingling, rolling massage sensation that aims to mask the pain. I am on my third SCS unit since 2006, and have also had multiple lead revisions. I wouldn't be without mine - but it's certainly not a complete fix. I also have a baclofen/morphine pump and take multiple oral meds besides.

I guess one advantage is that the trial IS minimally invasive- and usually gives a reasonable indicator of whether the unit will help or not. The actual implant surgery - everyone has a different experience. My first one didn't really hurt. I took paracetamol (acetaminophen) for a couple of days and went -carefully- back to uni just over a week later. Only one of mine has been bad - most of my revisions have been either day surgeries or overnights - certainly nothing to write home about - and yet I know some people find the surgery excruciatingly painful.

Laura
Posted 11/14/2013 1:56 PM (GMT 0)
Wade the Zohydro was just released this month so its a new version of a good med that your Mom's having some relief with, that's why I mentioned it. Its trial was actually very extensive and at 24 hr dosing the older trial participants did really well. Its designed to release smoothly and evenly throughout the 24 hours so I'm actually waiting to try it after a decade on a harsher opiate. I have had very adverse reactions to so many of the different opiates that when we found one that worked we stuck with it.

Susie is right on the nerve medicines targeting the nerve pain more accurately but I'm afraid most are contraindicated in the elderly and if she has those reactions to opiates she may not even tolerate them at all.

Please dont take this the wrong way as its not meant to say give up on your Mom! Find a pain management regiment that restores her quality of life to the best you can give her. A Dr who will work towards that goal with you for her. Drs tend to overthink when it comes to the elderly and that quality of life question.

Instead of spending months recuperating from procedures that may or may not work, could possibly cause her more pain if it were me? My kids better find a Dr who wont stop until he finds a nonsurgical, non-invasive way to allow me to spend my remaining years enjoying them and the sunsets and whatever else I love doing! Just understand Wade that all of these procedures will be high risk to her,long and possibly painful recovery times not to mention therapy and added Dr visits and untold complications.

Get her out of pain! There's an answer without putting her through procedure after procedure and surgical intervention! Just finding a Dr who understands what you and your Mother expect from treatment.

She deserves to be as pain free as possible but not at the price her Drs are risking getting it! That's my opinion and my wish for myself as I age and I wanted you to understand the odds and truth of what all those procedures could mean for your Mom.
Posted 11/14/2013 4:06 PM (GMT 0)
Hi and a most welcome to you and your mom. I would definitley get another opinion. One thing I would like to mention and I am not sure this will make it on the post. STAY away from Medtronics. I am 60, was 57-58 when my doctor, who I love had a medtronics rep come in and talk to me. I had the test which did not go well and the lead wires are loose for the test.

I went ahead and did it anyway, no doctor can tell you at any time it is for sure going to work, as she has had many serious operations I am sure both you and her were told they cannot give you more than at best a 50-50 chance it will work.

It did not, first I was told the doctor installed it to deep and it could not reach the charging system. After that I had another operation, and since it does not go into the muscle the time to recover was 2 weeks tops.

4 times I was supposed to meet with a rep from medtronics, i person showed the first time, she could not get it to work, the next 3 times i showed up but they did not, and i came a long way. Then they tried to fix it over the phone, need I tell you that was a complete waste of time.

What ever decision you both make my blessings are with you and much luck to both of you.

Kathy
Posted 11/14/2013 11:54 PM (GMT 0)
I think all of the information that everyone previously has indicated is exceptionally well-advised.

I'm considered "high risk" due to many factors, so I can imagine multiplying that by what your Mother has gone through, continues to go through, suffers from, and what her doctors want to consider putting her through,....I dare say, I more than hesitate.

If you have the where-with-all, I would seek out well more than a 2nd opinion, but actually a 3rd or even 4th.  As was mentioned, she absolutely needs to have managed care of a type that allows her a quality of life, not someone to take exceptional risks with her already-fragile state.

She is very fortunate that you care for her as you do.  I'm sure you make her proud!

M.

Posted 11/15/2013 12:05 AM (GMT 0)
Hello -

You've gotten some great info here.... and I applaud you for advocating on behalf of your mom!

I can only tell you what I would do for my mom.... there's no way I would have my mom, at that age, get the SCS. As others have shared - it's a hit or miss for most people....

There's so many other options to try first.... that would be the road I would go. I'd also recommend a 2nd or 3rd opinion.

I really hope your mom can find something to help w/ her pain, something that's minimally invasive.... and again, she's lucky to have you!

Take care, and reach out here when you need to! -Tina
Posted 11/15/2013 9:13 AM (GMT 0)
Thanks again for all the input. As you could probably tell from my original post, I already was very hesitant to follow through with either surgery, and after reading all of your posts, as well as a lot of reading on SCS, I am 90% certain we will not go through with either one.

The last few days have gotten a little better. She is tolerating the 5mg Vicodin better than anything else she has taken, and I have been able to up her to 3 a day now. Nothing else seemed to noticeably help her, but she notices the 4 hour wear off time with the Vicodin, so it must be at least taking the edge off. I am going to try to slowly increase her dosage over time, and see how much relief I can get her with it. If I am able to get her up to 10mg without any major side effects, then I will ask about the Zohydro.

As far as any further treatments, I am hesitant at this point to even TRY anything else, such as Ablation or more injections. She was in a lot of pain before the first facet joint injection, but NOTHING like the unbearable pain that somehow came along afterward. As long as she is relatively comfortable while at rest, I think we are both happy. At least now she is able to get up and move around on her own again, and I am able to get back to work without worrying about her being alone.

One thing I am wondering about, that I am sure some of you here have experience with, are Chiropractic or Osteopathic adjustments. What are your thoughts on these areas at this point? She cannot have acupunture because of her Parkinsons, so that one is out.
Posted 11/15/2013 11:03 AM (GMT 0)
I HAD IMPLANTED 7/2010. Aug 2010 health issues which PM office felt they had nothing to do with SCS.  I went to my PC then so many DRs and Medical test I turned off since it was causing more pain.  Still no visit to the PM dr or the rep from the implant co no contact.  my quality of life had decreased I hated life I contacted the implant Co to advise of my misery and health concerns fell on deaf ears.  I went to the PM explained sleeping is the worst of all he tried to show me another generator like it was a gold bar and I would be all better.  NO! I WANT IT REMOVED I HATE LIFE THIS DID NOT WORK FOR ME!  I had it removed and I can sleep without PAIN.  I still have health issues that I am still searching for an answer in CONSTANT PAIN.    
Posted 11/16/2013 1:37 AM (GMT 0)
I've had success with chiro -- BUT -- I would strongly, strongly encourage you to ask her doctors because even gentle manipulations may be too aggressive if she has fragile bones or is already at high risk to where even a slight adjustment could pinch a nerve.

Mind you, I'm a fan, as it worked well for me when I was younger.  Now that I'm older and have multiple spine problems, including hardware, I don't think I would risk it.

Does she enjoy massage at all?  Can she tolerate something like hydro-therapy?

M.

Posted 11/16/2013 8:34 AM (GMT 0)
She used to enjoy massage, but now she cannot lie on her stomach at all. Her PM doctor had to sedate her just to do the steroid shots because she could not be on her stomach because of pain. She used to do hydro-therapy, and enjoyed it, but now is incontinent.

Her bones are very strong still, and not at all brittle. She has had a couple of bone density tests, and they were great.

She was doing great all week, then today the pain was back, she said it was the worst it has ever been.
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