What I wouldn't give to have the SCS!!!

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Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 5/6/2009 8:53 PM (GMT -7)   
I'm sick of the meds.....sick of the clock watching....sick of so many days of high pain.  I want so badly for them (them being WC of Wyoming and the psychologists whom seem to think that I am high risk for drug abuse *shakes head at that one* and holding back my true pain level) to decided once and for all that I am a candidate for the SCS!  I've jumped through so many hoops that I think I am getting dizzy!!
 
I keep hearing from several doctors..."Yes! You are a candidate for the SCS." If this is the case then why in the hell am I still waiting for it???  Why am I still having to continuously jump through these stupid hoops??  I'm so frustrated that I could just scream!!  I do not mean to whine to ya'll, but its just not fair...I see several that have gotten their stims....several thta have partial pieces of their lives back and here I am sitting on my thumbs waiting for stupid people to decide "OK NOW your ready for the SCS."
 
I hate this!  I want off my medications....I want to be able to function at least a tiny bit of normal...I want to wake up in the morning and not dread getting out of bed....or better yet....I WANT to sleep in my own bed, curled up to my husband. 
 
Is this too much to ask??  Am I fooling myself that I will ever get the SCS implanted??
 
Gotta close now friends.....I'm crying my eyes out.
 
Hugs
 
Scarred
What doesn't kill us only makes us fight back harder! :P


Chutz
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Date Joined Jan 2005
Total Posts : 9090
   Posted 5/6/2009 9:52 PM (GMT -7)   
Oh Scarred!

I'm so very sorry. You need a gentle hug and someone to hold you. Maybe hubby is near by and can do the job...I"m too far away. Your frustration must be exhausting! Have you considered writing an honest-to-goodness letter to "someone" and ask why it hasn't been done yet? Your PCP, or Pain doc or whomever keeps saying this. Often something in writing goes a lot further than just spoken words. It's a lot harder to ignore, especially if you send a copy to each of your doctors. May get someone to get off their collective cabooses and do something.

One comment at the end touched my heart and I joined in your tears. The part about wanting to sleep in your own bed and curl up next to hubby. I start out for maybe an hour or so beside hubby and that's it. Then it's off the the recliner for the rest of the night. I am awake, up and down, several times after that because of pain. Mine is from fibro so a SCS would do no good, but I do pray for some relief for all of us.

Feel free to email me if you ever want to chat!
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
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PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/6/2009 9:59 PM (GMT -7)   
((((((((((((Scarred)))))))))))))

This is crazy that you have to wait so long, but I really have a hunch it's a legal thing and W.C. is just using anything they can get their hands on and no matter what any report says they're going to deny you. But that's just my opinion. Even if you were at a higher risk for addiction, the SCS should help decrease that, if you had a successful trial. That's not the pump; there are no medications in it.

But I wonder - what you said above, that you want off all your medications, if they got the sense you still were expecting too much of the SCS. I don't know anything about the stim except what others here have shared, but it seems most people take some meds with their stim. Others can correct me on that, as maybe I've got it wrong.

Please don't take this wrong but if, theoretically, you tried the SCS and it didn't help, what would you do? Because maybe you need to move on to something else while that is being sorted out with W.C., which I think your lawyer would know the most about at this point.

I feel so for you. You've worked so hard to get this, but you can only do so much. And you've done everything asked.

I wish I could help more. All I can do is send more hugs for comfort.

PaLady

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 5/6/2009 10:02 PM (GMT -7)   
Thank you Chutz hun. I do appreciate your kind words. I am going to be writing a letter tomorrow to my Senetor that is on the team to re-vamp WC. It's going to be strongly worded and then I will write a letter to my Congress person and whomever else I can find to write to. Someone has to listen sometime right?

Hugs dear. I am off to sleep for a bit.

Scarred
What doesn't kill us only makes us fight back harder! :P


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/7/2009 5:55 AM (GMT -7)   

Hi Scarred,

I am sending you soft big giant HUGS!!  PALady is right, I know when I was being evaluated, I was told not to expect a MIRACLE, having success with the SCS may mean cutting the PM dose!  The Dr.s nor the SCS rep ever said it would be a 100% fix.  I also spoke with several patients that had been wearing the SCS for over a year, they themselves advised me to be realistic in what could happen with the SCS.  I was also told the trial may work and then when the permanent unit is put in it may not.

I don't want to burst your hope bubble, just wanted you to know!

It turned out, I wasn't a candidate....I did things differently, I went to the Neurosurgeon after this was recommended to me because in the end he would be the one doing the final implant.  I didn't want to go through the process and trial only to be disappointed.  I'm glad I did because he told me alot of things my PM Dr. didn't.  I was in the 50-50 category, 50% chance it may work or 50% chance it might not....I decided it wasn't worth the $$$ and risk.

Hang in there Scarred, it will work out for the best whatever the decision is!  Until then we are here for you always!!

XXOO
Patti


anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 5/7/2009 8:22 AM (GMT -7)   
I don't have anything to add to what has already been said. I just want to let you know that I will be thinking about you and will continue to wish you the best. It seems so much to have to deal with and that doesn't help your pain any. Hold your head up as much as you can. You will always have people who care about you and will support you here. Please keep in touch and let us know how things are going.
Anice

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/7/2009 5:32 PM (GMT -7)   
((((((((Scarred)))))))))). Oh, I really feel for you. I wish desperately that there was something that I could do to help. It's just not fair that this potentially life-altering treatment is being held back from you! Who are they to deny you?! They don't have to deal with the pain and its consequences every day! They don't know what living hell we go through. Is it really too much to ask, just to gain a tiny piece of your former life back, like sleeping the entire night, or just plain sleeping in a bed?! It frustrates me to no end. I know exactly how you are feeling about the medications and wanting to be normal again, for once! You poor thing! Yes, there is a chance that it may not help, but if your docs are all urging you to try it, and telling you that it will help, then what's to loose, right? I just wish these people making your decisions for you could try to picture themselves in your situation, just for an hour!

Is there any possible way that you can bypass WC? It would mean paying for the stim on your own, and I have no clue how much they run, (I'm probably way out of line here) but could you look into moving forward with the trial on your own? It might not even be plausible since you might still need to get past the psych eval (I have no clue), but this was just a thought running through my mind.

I wish I could come & give you a big hug, but a virtual one will have to do! Feel my warmth & comfort! Remember to breathe. I think those letters are a good start. Heck, write one to the head of WC! Try to make them see what you live through each day & the continual torture they are putting you through by denying you this chance!

lots of hugs,
Skeye

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 5/9/2009 2:52 PM (GMT -7)   
Thanks everyone for your support and thoughts. I know I just need to be patient but geeez how many hoops do I have to jump through for a possible good treatment? Its just frustrating ya know? I'm better today since I have been on the new depression meds (actually just upped my current meds is what the doc did). The only thing I don't like is the fact that the 20mgs of Lexipro actually makes me quite spacy. I've got to find a psycholigist too, but I've been so busy with other things that I haven't found the time to call WC to see if they are going to ok it.

Skeye; I can't go around WC because my ins won't touch me right now and as long as I am on WC I can't pay for it out of pocket....besides....I can't afford that right at this point.

Anyway hugsss

Scarred
What doesn't kill us only makes us fight back harder! :P


Danimal
Regular Member


Date Joined Mar 2009
Total Posts : 80
   Posted 5/9/2009 3:22 PM (GMT -7)   
Hi scarred:

I'm really sorry to hear that you're having to wait so long. Have they told you what the hold-up is? Do you have a worker's comp. lawyer?

Is it possible for them to at least approve the psych. exam and the trial for you in the mean time??

am thinking about you...

Danimal

Author of chronic stimulation- a blog about being young, in pain, and living with an SCS

http://chronicstimulation.blogspot.com/

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 5/10/2009 7:51 PM (GMT -7)   
D: Nope....until I am actually approved by the psychologist there is no way WC is going to allow the trial. It seems that I have a few more hoops to jump through as the psych wants me to go see a pain psychologist and to go see this other guy who is an addictionologist. The latter floors me that I would have to do this as if I was going to abuse my meds it would have shown up long ago.

Ya I'm depressed....aren't all people with CP??? No I am not feeling suicidal...that would be just stupid on my part.

Anyway....I look forward to more posts

Hugs
Scarred
What doesn't kill us only makes us fight back harder! :P


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/10/2009 9:03 PM (GMT -7)   
Scarred, I was reading a news article today that said the ins. companies, medical professionals and drug companies are promising the Government 2 trillion dollars in cost cutting measures over the next 10 years. The catch is that they would all loose money if the Government took over healthcare. What is scary is I don't think the Governemnt can do any better than the medical fields and the medical fields are messing it up now. Your situation shows the insanity of the mess our health care system.
 
My PMS told me that before he could do the stim trial I had to complete certain steps. When I went in to see him after the MRI and the referral for the psy eval had been made but the appointment for the Psy. Eval had not been set. He was frustrated and said that as far as he was concerned, he did not think I needed a psy eval as there was plenty of evidence that my pain was physical in nature. He told me that if my WC was ok without a psy then he would not require it. I called my WC company and they said they had no problem bypassing the psy. eval. Is it the WC company that is requiring this or is it the PMS? I thought it was required but since my PMS was recomending going ahead without, then WC agreed. I don't know if this is a possibility for you or not.
 
Of course, I have not had my trial yet, I go in Tuesday and will have the stim for 6 days. My whole point is this, who do we trust to be in charge of our health care? It is certainly a mess. I wish I could help you get through the hoops.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 5/10/2009 9:34 PM (GMT -7)   
Scarred,
I know you're just trying to make sense out of all this. I used to think the same thing about CP & depression going hand-in-hand. The pain psychologist I used to see said that by the time the CP affects a patient emotionally, that most physical treatments fail. He described his role as treating the depression first so that the meds, injections, procedures, etc. would have a chance to work. I'm not saying he was right or wrong, just that that seems to be a viewpoint held by some. He also taught continuing ed classes on pain psychology at a local college, so I'm sure others now subscribe to that theory as well.
Hoops just suck & I so wish no one had to jump through them at all, but that isn't reality. Not all people with CP have depression. I know that's true, but there's also a lot of research out there to suggest that that kind of resiliency is genetic. Some of us need more than the genes we were given, though -- we need a break in life & for some things to go right before we can be happy. Unfortunately, we're judged on the same scale as those people who are never fazed by anything. So all I can do is just encourage you to keep trying & keep going through all the steps & I will keep praying that they will let you have your SCS approval soon.

peace,
frances

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 5/11/2009 12:44 AM (GMT -7)   

I have had my SCS for a little over 3 years.  Since implantation, I have NOT reduced any of my pain medications.  I hope your expectations are not too high.  The implant provides a tingling sensation that serves as a diversion to pain sensations.  It does not eliminate pain signals.  What you end up with is the same amount of pain and an overlay of a secondary sensation that blurs pain.  There are times I find it very annoying - too many different sensations.  I would gather more information about the SCS - you expectations of being medication free may be unrealistic.  Implanted intrathecal pumps on the other hand offer a different medication delivery system, so most people have a dramatic reduction in their pain meds - needing only oral break through medications. 

SCS can help, but patients rarely end up drug free.  It is another tool - a very very $$$$ one that many doctors push.  Leads often float causing erratic sensations.  Many times I have to sit still when I use mine, movement can cause the leads to shift and the change in the magnitude of the sensation can drive you nuts.

Just my opinion.  I don't want you to expect too much.  Talk to as many people as you can that have them.  Do not depend only on your doctor or the sales rep.  Good luck. 

  

Stella Marie

Rare neurodegenerative disease called “Multiple System Atrophy”.  Wheelchair, O2, & Bipap, intrathecal pump, neurostimulator, dystonia, neuropathic pain,  spasticity...etc..etc.


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 5/11/2009 12:15 PM (GMT -7)   
WC, SCS, UR, PMA, BOM.

What I would like is a law requiring the use of full meanings of those 2/3/4 letter replacements before the replacements are allowed to be used in a post.

I begin reading a post, then either have to stop to investigate what those letters might mean or just quit reading the posts.

Sorry to be such a grump about it, but it is also hard to believe I am the only one that doesn't understand the contracted (what is the right term?) words, sometimes. And when I don't it is so VERY frustrating
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer
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SCS#1
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/11/2009 5:19 PM (GMT -7)   
Hello Eveyone
I just wanted to tell you scarred for life, dont't give up. It is a long process to get coverage, but its because the device is expensive and has a few steps before it can be a perm. implanted device. The insurance wants to make sure if they pay for it the patient really needs it, Chronic pain is something insurance companies have a hard time measuring. You also dont want to be implanted for the wrong reasons, SCS is not a cure. If insurance wont pay for it sometimes there are funds that people donate to for situations like this. Ask your PM doctor about it Boston Scientific has one set up in a few states, not sure about yours.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/11/2009 9:35 PM (GMT -7)   
Tony,
Your post confused me. Are you talking about abbreviations like SCS? Or something else? Rather than a law, all you have to do is ask and someone will explain it. I don't know all the abbreviations either, but the same ones get used frequenly so once you ask, you learn them all fast.

SCS#1 - just wanted to welcome you to the forum. If you want, you can start a new thread and introduce yourself and you'll get a lot of people welcoming you. I don't have an SCS, but have been following Scarred's rough journey with W.C. trying to get a trial.

PaLady

BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 5/12/2009 9:27 AM (GMT -7)   
Stella, have you had your lead anchors checked to make sure they're not loose? The level of movement/variation you're describing really isn't normal, especially 3 years post-implant.

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 5/13/2009 3:10 AM (GMT -7)   
Hey all. Seems I have really gotten a good debut going, that's a wonderful thing. The SCS is a Spinal Cord Stimulator just for those of you who don't know what that means. WC (worker's Comp) in Wyoming is fighting with me on this because they say they don't work at all. That its an expensive procedure that is worthless to anyone who trys it.

I do not have unrealistic expectations for the SCS. I know what I would be getting into and if it even helps a tiny bit....its better then nothing. I fully expect to have to still be on a course of medications. I know that its not going to be a total cure but.....if it helps why not try it?

WC has not actually sent me a denial letter and until they do I cannot hire an attorney to help me along. That I was told by several attornies back home and two of them here in KS. I know that some of you have not had the relief you thought you would get and for that I am truly saddened...but I have had 6 doctors say that this is my best recourse. The medications are and will not touch the area where the nerves are impinged. I have a fantastic doctor that is willing to fight for this to happen so I will just keep juping through the hoops until such time as they decided to do this.

I've tried to bypass WC and that just isn't going to happen. They require the psych eval for this procedure.

Anyway, hugs to all

Scarred
What doesn't kill us only makes us fight back harder! :P


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/13/2009 7:15 PM (GMT -7)   

Scarred, I asked my PMS about the psy eval and why it is needed. He stated that it is a tool that is used by ins. companies as well as medical professionals to help identify people who will benefit from the implant and identify those who have unreal expectations. He stated that the implants at best reduce the meds and pain 50%. The Boston Scientific rep told us the story of a client that was spending $12,000 per month on pain meds. The unit worked wonderful for him and the unit was paid for by the saving in pain meds in a short time. The units cost about $30,000 each and as you can imagine, ins. companies do not want to pay for anything they don't have to. Keep fighting and you well know that one persons experience is not a guarantee that yours will be the same.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13478
   Posted 5/15/2009 10:13 AM (GMT -7)   
Scarred, who is the person responsible for making these appts they want? If its the ins company I would call that darn adjuster every stinking day and say when are my appts scheduled. If you are the one to schedule them, then I would take a day and get all of them scheduled and call the ins & fax them a letter with the info about the drs, dates & times and get them approved ASAP. This is just sickening what has happened here with you. Hugs, Susie


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/15/2009 12:07 PM (GMT -7)   
Scarred,
How are you doing? Susie knows what she's talking about with all this W.C. stuff, so I sure would follow her advice, but Susie isn't it odd that an attorney won't take her case after all this time? Kind of baffles me, but then a lot of the legal stuff does. "Baffles" is probably just me being polite about lawyers!

PaLady

BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 5/15/2009 10:18 PM (GMT -7)   
fatherjohn, watch out for those cost estimates. They tend to leave A LOT of things out. By the time I was done, including everything involved in the trial and the permanent implant, the cost was $217,000 and some change. smhair

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/16/2009 2:01 AM (GMT -7)   
Bionicwoman, I can imagine the costs are up there. I was just referring to the unit itself. I talked to my PMS and his office manager about my insurance. As I have stated before, I am very limited where I can get help in the Oregon as most Drs won't take out of state WC. The office manager told me that they like my insurance over local WC companies as they get paid more by mine that any other. I am sure my WC company would love to hear that but mum is the word. For 10 years my WC company would tell me when I talked with them that I was an excellent client as I used very few meds, did not run to one doctor after another etc. The last 1 1/2 years, I have been making up for those other years. When I found a surgeon who would accept my WC, the condition was that the WC company had to agree to pay the surgeon rate up front. The WC compant faxed the approval the same day. I hope they are always this nice. When the issue of a Psy eval came up, my PMS stated that he knew the cause of my pain and was not concerned with the Psy Eval and if my WC company did not want to require one, we would by bass it. Again, it took one call. I feel blessed at this point with WC.
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