Thursday, May 7, 2009

Patients Review Spinal Cord Stimulation...


DH and I are obsessed with product reviews. Actually, DH is obsessed and I have a healthy appreciation. He
subscribes to Consumer Reports and when it came time to expand our family with a flat-screen tv, he spent months pouring over reviews and gadget blogs. He also talked about the whole process with anyone who would listen, including random people on the street (or at least it seemed that way). All of the obsessing paid off though because in April of 2008, we welcomed a beautiful new 46" Samsung into our living room. At first, there were many late nights (we didn't get much sleep) and lots of channel changing. However, we eventually settled into a nice routine and Samsung continues to delight us on a daily basis.


I like to read book reviews (no surprise there). Amazon.com is my friend. I won't purchase a book without first having established that it doesn't suck. The same goes for make-up. I get nervous in front of make-up ladies (cue the sweaty upper-lip) and I like to have a game-plan before heading into the cosmetics war zone. I've been bamboozled a few times into buying colors that simply don't work on my deathly pallor (I hearken back to the time when I purchased a dark red lipstick only to have my father tell me I looked like a clown). So, Makeupalley.com is my friend (side-note to reader sherigirl..these comments do not apply to you).


Anyway, I'm telling you this because I found a website that offers user reviews of surgical procedures, including spinal cord stimulation. This got me thinking about the fact that patients are consumers and, as such, it makes sense for patients to approach the decision-making process regarding a neurostimulator in the same manner as one would when evaluating any other consumer product. In a way, thinking of ourselves in this context feels a little icky (or at least it does for me). We want to think that our doctors and device representatives have only the goal of managing our pain in mind. That simply isn't the case. There are other interests at play and it behooves us not to ignore this fact. I say this, not to be cynical, but to empower those of you who are about to embark on the decision making process.

Revolution Health is the website and, according to Wikipedia, it serves a similar function as WebMD. The user rating section allows patients to review medications and treatments. Each review is divided into 4 categories, including: perceived effectiveness, ease of use, tolerability, and whether the patient would recommend the procedure or drug (i.e. product). There is also a section where the patient can write a paragraph about his or her experience.


Two downsides to the stimulator reviews are the fact that the most recent review was written in 2007 (though I will change this when I post my own review) and there are no reviews written by patients with RSD or pain syndromes other than Failed Back Surgery Syndrome, Degenerative Disc Disease, and Peripheral Neuropathy. It would be nice to see a greater range of patients writing reviews given that neurostimulators have a diverse application.

Also included on the site are user reviews for many medications commonly prescribed for patients in chronic pain, including: traditional narcotic pain relievers, and medications such as Lyrica, Neurontin, Nortriptyline and Effexor (the list goes on).

If you're interested in reading the current reviews, or possibly posting your own, click on the following link:

And before I sign out, I'd like to note that I tried my hardest to come up with a cheesy title to this post to remain in keeping with my usual practice. Alas, I am tired. I have no cheese. I failed this time but am confident that it won't be long before I'm posting again with some sort of horribly cliche title. That's a promise.

7 comments:

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aww..thanks for the shout-out!!! if you ever have questions, feel free to ask, i may be out of the loop with everything else, but i still know me some makeup! :)

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rsmontani said...

Well, here is my long review. I put a much ammended version on that website.

I did not want a spinal cord stimulator. I was my last option. I tried physical therapy, surgery, injections, a TENS unit, medications, and more medications. Narcotics worked, but because of the war on drugs, I was suffering from collateral damage. Doctors treated me like a drug addict and pharmacists treated me like a junkie. I would find this amusing if I was not a pharmacist myself. I think my profession really hurt my treatment options. Nobody wanted to give me medications, but that is a different story.

Reluctantly, I tried the spinal cord stimulator. I ended up getting an infection in my spinal cord and got sick as a dog, but the trial did work. I have only had my ANS/St. Jude Spinal Cord Stimulator for about 2 1/2 weeks, but it has really made a difference in my life.

Let me explain my scoring.

Effectiveness: 8/10. Yep, it really helps with the pain. Maybe it deserves a 10 out of 10. It does not have a 10/10 because I am only 2 1/2 weeks post placement. I haven't given it a fair shot one way or the other. I will try to update my score at a later date and let people know what's going on with me. Maybe some day it will be a 10/10. I don't feel much pain at all, so I am really happy with it so far.

Tolerability: 7/10. But I still don't like the idea of this thing put inside me. Yep, it's a mental issue and I deal with it OK, but I do not like having it in me. If I don't turn it down a couple of hours before bed I have wicked insomnia. It seems to stimulate my nerves (duh! it's part of the name), but it stimulates me like a cup of coffee stimulates me. I can't sleep.

Ease of use: 7/10. OK, I am being a bit kind here. On one hand, my unit is rechargeable, but I can tell you whomever made the charges/chastity belt has never had to recharge a SCS in their life. Bulky, ugly, and I can't see the blinking lights to tell me if it is charging correctly. Who made this thing! I mean, can't they do better than this? On the other hand, it does recharge quickly. I recharge every other day, so it only take 20 to 45 minutes to charge. The more frequently you charge the longer the battery is supposed to last, so I don't mind charging every other day.

Would you recommend?: 7/10. If I knew it would work for you as well as it works for me, then it would get a 10/10. I know it does work, but I don't know how long it will work before it breaks, needs a new battery, or if I will have any problems. It is still an experimental medical device. It could work for 20 years or it could break tomorrow. The truth is somewhere in between. I figure if I don't slip a lead out of place in the next 9 months, I should be good for quite a while.

I hope this helps give some perspective and good luck. If you are reading this, then you have my prayers and sympathy.

That is what I wanted to say, but I really had to chop it up.

Danimal, I hope you feel better. I know you were feeling kind of blue the other day.

Also, did your lead actuall slip out of place? That is my greatest fear. I really don't want to ever deal with new leads again.

mar said...

I am about to have a cervical spinal cord stimulator trial and am pretty apprehensive about it. One of my concerns in the location of the implant of the pulse generator in the permanent SCS. Where do they normally put them? I understand that there may be several options? Thanks for any information you can offer on any aspect of SCS. Mar

Danimal said...

Hi Mar,

Welcome to the blog! On what day is your trial scheduled? I can completely understand you being apprehensive. I was too. They're pretty good with using local anesthetic though..and just make sure they go slowly with you and if you are feeling any pain or discomfort..let them know so they stop and try something different (usually it will require a different angle).

In terms of the battery placement for the permanent...my options were either in my abdomen or my lower flank/upper buttock. I chose the abdomen and am VERY happy I did so. Some doctors do not give you a choice, however. I should also note that placement might be different for a cervical stim. Definitely ask the doctor when you have your trial!

Also, keep in mind that you have 2 choices for the type of system you could have implanted and 2 choices for the type of doctor who implants the stim. You can either have surgical leads & paddle OR percutaneous leads (neurosurgeons can do both..anesthesiologists can only do the percutaneous leads). I chose the surgical leads & paddle and a neurosurgeon. I have a long post about this if you want more info.

Don't hesitate to ask more questions, ok?

Best,
Danimal

sandra said...

In the process of getting approval for stimulator. Just had another CT myelogram on Friday to determine if L5S1 fusion from Aug 06 is 100% healed. If it is then we'll have the trial. Gotta have psych eval first. This is a workers comp case and it has taken so long to have anything done. Glad to find a blog with positive things to say. Everything else I've read was negative. I'm scared buy at my wits end with the pain.

Jody Massey said...

I have had the Spinal stimulator since Feb. of this year. Since then I have experienced severe stomach issues! Severe constipation, horrible cramping, bloating, loss of appetite,tenderness to my stomach, I'm exhausted all the time. The symptoms just continue to get worse! I have had a colonoscopy, all kinds of tests, they can't find anything! I'm at my wits end! could this have anything to do with the stimulator?