New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 1/13/2011 12:06 AM (GMT -6)   
Saw your post in the other tread ... though I'd post a reply here:

R-
I have the BSPP model. It hasn't malfunctioned & the only recalls have been on the remote (which was easily swapped out) and the external charging unit (which was also easily swapped out). Both of those were done free of charge, at my convenience, at a location that was convenient to me (I don't live near my PM's office, so we picked a closer, public location).

Mine hasn't been without issues lately. It was fantastic for the first few years & I raved on and on about how wonderful it was and how great it was to lower my pain meds by more than 50%. Now I'm irritated b/c if I want to keep using it I need to charge it every day. Many people say they don't mind charging. Because I have a neuro condition that makes touch extremely painful, wearing the charger is not pleasant.

I personally would not be comfortable having one surgeon do the trial & another do the permanent placement. Yes, they will have films to look at, but that's not the same as knowing the doc will use the exact same thought process & nearly identical movements from one procedure to the next. I don't know what the actual statistics are, but that's just my gut reaction.

There are significant differences between the Medtronic & BS models. You can do a site search for more info about the 2 & for general info about SCS/neurostimulators.

I wouldn't expect the SCS to be life altering. Yes, it can be, but that's not necessarily a realistic expectation. 25% reduction in pain with no change to meds is considered a "successful" result. Most people seem to get between 40-60% reduction in pain prior to cutting down on meds. For me, once I got past the post-op pain, I was able to start doing a small amount of physical activity. That improved my pain levels & with each improvement, we cut down my meds a little bit. So the result was impressive, but it was not due to the SCS alone. In my view, SCS implants are surgery, so unless you're considering a more involved surgery, like fusion, I'd wait... but that' me. The advantages are real, but most people don't end up with the fairy tale ending of taking no more meds, having complete control of their pain, resuming their active lifestyle, and living happily every after. You're much more likely to end up taking fewer meds, having better control of your pain, at least being able to get out of bed & do some meaningful work, and living with much less misery for 5-7 years.
It really irritates me when people compare the SCS to a TENS unit. I understand why they make that comparison, but a TENS unit is a very low level intervention. Almost anyone can safely try the TENS and they can stop it at any time with probably no continuing impact on their life. The SCS will impact your life, potentially permanently. They cannot always be removed. They will burn themselves out sooner or later. Like any technology, they have glitches and need tune-ups and aren't ever as great as the newest model which tends to come out the week after you get yours. ;) I've heard the newest BS models are supposed to be approved safe for use with MRI's. I'm not sure if that's true. If it is, that is a marked improvement over older models.

Good luck with your decision!
frances

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 1/13/2011 10:15 AM (GMT -6)   
Thank you so much, Frances!

I understand it won't all go away, but to have the pain reduced a bit, and maybe get off the meds a bit would both be a godsend in my book. Since being on the narcotics my memory has started to feel like swiss cheese, and unfortunately being allergic to NSAID's has cut out alot of other options. With winter my pain has increased dramatically ... I'm starting to think moving might be something to consider as well given the tempature extremes we experience; I really only have about 4 months of "comfortable" weather every year.

Because of what I have, CRPS, I have already hit the 'life altering' stage. The fact that there is no going back, no cure, and that it will just continue to get worse with time, isn't a happy outlook. While I'm not fond of the surgery option, it's really my only option. My drug therapy is already in need of a major over-haul. And of course CRPS needs to be fought... you need to fight the pain and use the affected area daily. So again, any reduction in pain would be welcome.

I don't ever expect to return to the life I had. I don't expect to return to training horses, or driving stages and wagons in parades. I don't expect to go back to making gun belts and other large pieces of leather craft with intricate hand tooled details. I'd like to, but I know that's not reality. I'd just like to not feel so ruled by my pain, or have my day structured around making sure I don't miss my next dose of meds so that the pain becomes debilitating. I don't want to have such horrid days so that I fall asleep because the pain is to much for me to bear.

I have heard so much negative about the SCS units, and yet for me this is my only hope. This is my ONLY option aside from the drug therapy. There are not other treatments. Now a days they don't even talk about the possibility of just removing the afflicted nerves because they've finally realized what a bad idea that is. They are trying some stuff now with ketamine induced coma's, but I can't see taking the risk... I can't do that to my son; outside of my parents I'm all he has.

I think regardless the risks I am still going forward, provided I qualify for the trial unit, and the trial unit works. But I've had the stalate ganglion nerve blocks done and they do squat for me. =( It's bad enough in the last 3 years the pain has spread from my wrist/hand area in my right hand, to include my entire right arm. I have lost so much of my life that getting back even a sliver would be a major accomplishment.

I'm not saying I'm going to ignore everything everyone here has said. Far from it! I've always been a person who believes in being educated. I've done research online, and watched videos, etc, and at least have a neighbor who has the same unit I'm looking at getting... but from everything I've heard she's still in the honey-moon phase with her unit. She's decreased her meds, and she's gotten back some of her life, and for some of us that's all we could ask for.

I am more scared now then I was before, but I would not go back and change things... I would not leave my blinders on and walk into this unknowing with false expectations. So thank you... thank you so much for sharing with me. I deeply appreciate it.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled and on Percoset for pain.
Hoping 2011 will see my spinal cord stimulator unit finally implanted.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 1/13/2011 11:22 PM (GMT -6)   
R-
I'm sorry you've only heard negative things about the SCS. Perhaps it is worth considering whether that is a reflection of the surgeons in your area. Statistically they do offer decent relief with a reasonable amount of side effects. They are, imho, a much safer option than a fusion. Though no one I know has had a fairy tale ending, the vast majority of them who experienced relief during their trial did in fact benefit from at least a 25% decrease in their pain over the next few years.

Go into it with your eyes wide open, but there's no reason to give up all optimism. Keep in mind that meds & shots don't last forever either. They cause different side effects for different patients, but usually there are some drawbacks. And there are plenty of cases where new meds came out and they were overpromoted as some kind of "miracle drug".

If your unit just burns out after 5 years, at least that was 5 years of benefits. What are you planning to do with those 5 years of your life if you don't get the SCS? It's a serious decision & I wouldn't dare try to make that decision for another soul but the reality is that there already are batteries in the pipeline that recharge off of your body, rather than from a transdermal charger. So 5 years down the road, if you DO need to replace the battery & there aren't any better options, that should be your very last battery replacement for the rest of your life. Is that really so awful?

If you feel like you want some happy stories to psych yourself up for the trial, talk to your PM or the rep. They should be able to get you the names of a couple patients who've been through the procedure & are happy with the results. In contract to HW, which tends to attract patients with the worst outcomes, sales reps tend to provide contacts with patients who had the very best outcomes. Your results will probably be somewhere in between -- but your trial will really be the best indicator of how much pain relief you will get. If you get good pain relief, there's the programming which really is nothing more than a hassle and the risk of the battery dying in a shorter time than typical.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 1/14/2011 10:38 AM (GMT -6)   
F-

My list of things today is headed by calling the rep for BSPP to ask some questions; the same ones I'll probably ask my Pain Doc on Monday when I see him. I have investigaged Mohajer's reputation and he is one of the top doctor's and so far I've felt safe with him when on his table for the two injections he did. While neither of them produced any positive results I was impressed by his professionalism and yet his caring at the same time.

The 5 year question is one I have asked alot of myself recently. The answer is simple; at this point I have nothing ot lose and everything to gain.

Thank you, Frances, for your frank honesty about the whole matter. I respect that greatly. Never been fond of suger coating medical stuff.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled and on Percoset for pain.
Hoping 2011 will see my spinal cord stimulator unit finally implanted.
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, September 21, 2018 3:00 PM (GMT -6)
There are a total of 3,005,493 posts in 329,230 threads.
View Active Threads


Who's Online
This forum has 161777 registered members. Please welcome our newest member, babagg.
287 Guest(s), 5 Registered Member(s) are currently online.  Details
notsosicklygirl, mattamx, mspoopsalot, chewbetta, Subdenis