Seems like everything I've tried has ALMOST worked, worked a little or had complications.

There's been pain management program - some of it was helpful, but unreasonable moron Dr was ready to accuse me of addiction over 20 mg Oxycontin (with dx's of TOS and RSD!) ; TOS surgery - helped some, made RSD worse; pec minor surgery, ditto; IV lidocaine infusion - I couldn't tolerate the higher doseages necessary; IV ketamine infusion - worked very well for a while, then wore off, insurance co refused to pay for.

Now I'm running out of options - there's really nothing else to try to moderate my condition, or put the RSD into remission, not that I'm willing
to try. The SCS seems my best answer for pain relief. I want a better quality of life than I presently have, if there is any reasonable way to achieve it.

The trial SCS was awesome. NO pain in my arms for the first time in 3 1/2 years!! 3 nights of GOOD, refreshing sleep - I felt almost like myself, my old self again! I had energy! My overall pain level was so much lower, it was easy to forget about pain for long periods of time, or just notice it distantly.

Here's the rub: On Sunday, I had to move my head about to find the right position to get stimulation. Driving, I had to sit forward and lift my head up to get any stimulation at all - my neck didn't like this at all! It was sort of hit and miss all day, but I could always find a position where the stim worked. And it worked fine when I went to bed.

Monday it didn't work. At all. In any position.

I saw my Dr Monday afternoon so he could remove it. He said it was a plus that I got such good coverage, and he knows just where to place the leads for the permanent SCS. But he isn't happy that the SCS stopped working - he says the electrode moved down, out of the space he placed it. And if he enters at the same cervical level when he implants the permanent one, chances are the same thing will happen.

So when he does the permanent SCS surgery he plans to enter one level lower, I think C8-T1, that's where he said he preferred. He tried to go in there already on the left, but couldn't, due to scar tissue or adhesions. I don't remember ever getting an epidural or any block or anything at this level that would cause scar tissue?? He said sometimes we're born with adhesions.

So his plan is to go in from the right at this level, BUT he has no way of knowing for sure til he goes in if he can get in there. I'll be totally out for this surgery (I had to be awake for parts of the trial, so I could tell them where I felt the stimulation), so I won't know if they can get in there successfully or not til I wake up.

He's told me I have to decide, and tell him in writing, in the next few days, if I want him to go ahead and place the leads in the higher site if he can't get into the lower right site that he prefers. Knowing that if he does put them there, they could move out of place and give me no stimulation, and the whole surgery, including implanting the battery in my butt, would be for
nothing.

Or tell him if he can't get into that right side, to go ahead and scrap the whole surgery, call it a failure, knowing I have hardly any options left, and having had that brief taste of blessed relief and wonderful sleep.

X-rays won't help. No way to tell til he goes in.

This is so hard!!

What would you do?

beth

Hi Beth, I am so sorry to hear all this. It is so sad. However, I am not surprised the leads moved. When I was going to have a SCS put in, just before WC denied it (!!!! no surprise), my doctor had told me the less active I was, the more likely the leads wouldn't move. I wouldn't even be allowed to reach in the cupboard for a glass, bathe myself, twist, turn or take care of myself at all. I was to be bed to chair for the whole trial so leads wouldn't move as it takes a few weeks for them to scar into place.
So I was surprised you went to a game of some sort ?? I am sorry, I forgot where you were going that night.
Maybe the rules have all changed in the past 2 yrs, I don't know.
Maybe you could ask your doctor if it would be better to stay pretty much quiet and let others do for you until the leads are secured into place, which I was told would be a few weeks. I only makes sense to me that being active or twisting and turning, will pull them out of place.

I know for me when the pain went bodywide, the stim was off the table and authorization for an intrathecal pain pump (like Colleen has) was requested.
Of course WC denied it. I've talked to several people who love theirs. I don't know if you've thought about it or not. I was hoping I'd be able to go back to work if it helped me as much as the trial did.
I hope you will be at peace with your decision.
You will be in my prayers. You have had a very rough time, and I was so happy to hear of your victory in court and now this .
Hope

Oh what a descision...

can't he anchor the leads/electrodes somehow??? so they won't lose contact?
I haven't studied any of this... so not sure of details on how it works.
unless it's similar to how the interferential or TENS stim works on the outside only SCS is implanted very close to the nerves involved??

But-
I guess for myself, if I was in your place - the hope that it would work at least some of the time or even for a short time - I think i would tell him to give it his best shot and hope and pray it will work.

oh I see - HLH - scarred in, makes sense.

Hope, he wanted me to be as active as possible, I guess so he could get an idea if the leads would stay put long enough to scar in; i.e, if they move during 3 days of active movement, how likely is it they are NOT going to move during 6 weeks of even minimal movement?

He doesn't want to go with the pain pump, although if this fails I may press him harder. He says there are risks, and he thinks I'm still too "functional" for it. LOL, I still have some pride and always shower and put on decent clothes when I go to the Dr. I should just go looking like I usually do, in sweats, dirty hair, straight from bed, maybe he'd get the picture?

I swear there's a special place in you-know-where reserved for WC and insurance co people!!

Jo, the leads will be tied down to gristle (ewww) but can still move quite a bit side to side I guess. There's a procedure called a laminectomy where they open the epidural space and stitch the leads down, but it's rarely used (spinal headache of the worst kind is guaranteed) and is contraindicated for RSD patients.

SCS stands for spinal cord stimulator - it's placed into the epidural space and runs up into the the processing center at the base of your skull, the leads are placed in contact with the area that sends messages to the place that's desired, in this case my hands, arms,shoulders and underarms. They will also make a channel for the wires down my back to the battery, which will be placed through an incision into my upper butt.

The Dr doesn't want to do all this surgery on me if there's a good chance it won't work. I want the surgery to work in the worst way!!!! I just don't know if I can bear coming to and being told the surgery was a failure, you know?

Beth, I'm so sorry to hear this.

It just seems so 'experimental'... the reason why I won't consider a SCS implant (yet). I can understand wanting even a partial relief of pain, but to have muscle cut into (implant at hip) and wires inserted that can dislodge, too scary for me. I'd not have the procedure. And not only because of the fear of the big let-down if the procedure didn't work, just the stress of being 'knocked out' after having had so many other procedures. Then the RSD issue... oh my honey, I'd be too scared.

Regarding the adhesions, did you not have an EMG-C8 nerve root test done? I've had 3. Could there be adhesions there from this procedure?

Anne

ps: thanks for the kind words and inquiries on my situation. LTN is a possibiliy. will start a new thrad for that. don't worry all.. it will be rated G.

I wish I had some advice to offer, instead I can only lend support.

I know this is probably a silly question, but is there someone else that you could see for a second opinion??

I think I have told you my hubby has an interthecal pump to manage his radation burn from his cancer treatment. It is very effective, not completely but he was in agony prior, bedridden and miserable. At least now he is mobile and able to get out and about!

They had him barely moving for 1 month post op. to allow the pump to scar in. That was really emphasized!! Also, He could tell once it scarred in. It felt more stable, more secure.

Is there any possibility they would consider that for you?? I myself would consider one ( if I needed that kind of pain management) after seeing how much relief he has had from his.

I hope you will be able to come to a decision soon and be able to get the pain relief you desire and deserve!!

G~

My heart goes out to you with such a huge discision to make.. No one can make such a descision but you.. And I am sure that in your heart you will make the right one whatever the outcome is..
If I had to go thru such a desicive surgery and counting my options and to look down the road into my future.. I would go thru with the surgery and have the Dr do the best he can.. It is always possible that everything will go as planned and if it doesn't and he goes higher it still may help..
I will keep you in my prayers that this will work for you..
Best of luck and keep us posted..
((Gental Hugs))
Dawn

Hi Beth,

I had a whole post and it disappeared as I was writing it!

The way I've read it on the RSD forum for years is the opposite about moving about post op.

Kind of like if you glue something on a piece of paper and leave it alone it will stay/stick better than if you start swinging the paper around or tugging on it. What your doctor said confuses me.

I had a SCS kit with info and a video and it had the following instructions:
Your doctor may recommend that you restrict your activity for several weeks. During the first six to eight weeks following the surgery, you will need to avoid lifting, bending, and twisting movements. This allows time for scar tissue to form and anchor the lead.
Then after the initial 6 wks it suggests:
Use normal caution with these types of movements after the initial six to eight weeks. Once your incision has healed, the neurostimulator site requires no special care. However, you should talk to your doctor if you perform any excessive or repetitive activities that may damage your neurostimulator or lead.

Whatever you choose, I hope it will give you plenty of pain relief. I'm sure you, like me are tired of all the pills, which probably are making my liver sick, so I've chosen to go the spinal route also. I've talked with so many who have gotten their lives back by being able to walk again, swim, attend social activities .. or just being able to shop or hold a grandchild would be nice.

Is it too much to ask that we have some semblance of a life back? Even if we can't work, it would be nice to drive and not stay at home day after day...or rely on others to do everything for us rather than do it for ourselves & end up in bed the next day ? Independence sounds so good right now.

I really hope it all works out for you....even a year or 5 with pain relief sounds good right now. Maybe 10? wow, I caught myself smiling

Never lose,
Hope

Don't you HATE when a post you're ready to send disappears???

Wowl, I appreciate all the love and concern, I really do. You've all been around for quite a bit of this journey with me - you've read about each of my attempts to find an answer for my pain, given me support, encouragement, and advice. I couldn't ask for better or wiser friends than the ones I've made here - thanks

First, I absolutely trust my Dr. He's certified in pain management and anesthesiology and has implanted over 130 of these SCS units, with over 85% success rate. After surgery he does restrict patients from almost any unnecessary movement for 6 weeks, he only encourages movement during the trial, he feels if it moves during the trial it will move during after the surgery, no matter how careful you are. And he'd rather know ahead of time and try to find better placement - which may be the reason for his high success rate. He's very smart, but very down to earth, and I know he'll do his very best for me - it's just that I am a bit of a complicated case - does that surprise anyone? If I had a dollar for every time I've heard that - I'd have several dollars by now.

If some of the procedure steps seem different than yours, remember this is an Advanced Bionics SCS, not a Medtronics or ANS, so that may be why, and they are constantly undergoing improvement.

I really don't know what to do at this point - I really don't.

Anne, I had at least 3, maybe 4 C8 ulnar nerve root studies across the brachial plexus - at least one done of the left arm, meaning he would have inserted the needle into that C8-T1 space on the right - I'm almost speechless over this......

I'm not a huge Hooshmand fan, honestly. Some stuff I buy, some I don't. Dr Schwartzman told me I shouldn't get an SCS because it would stop working in a year or two, but his answers were more ketamine boosters and then the coma treatment. Uh, no. Can't keep flying to Philly, and the boosters don't really work any more, and I'm REALLY not desperate enough to try a medically-induced coma, thank you very much!

My kids are 11 and 15 - I'd do almost ANYTHING to feel better, so I can spend time with them, having fun, doing girl things, just being a NORMAL mom.
A year or two of reduced pain would be PRICELESS. My youngest barely remembers me before this happened - she was seven. My oldest is 15, a sophomore, before you know it she'll be leaving for college. I need some good time with them, you know?

And the thing is, I really think the SCS is an individual thing - for some it works great, for others it doesn't, or stops working. Dr Togut said some do quite nicely with it. My Dr says he has several RSD patients that have been using one for years. Others online have told me how they love theirs.

I'm not too concerned about the surgery, (hey, what's one more, right?), as they've done this on many RSD patients - I expect I'd have a sore tushie for several days though. Dr wd give extra pain meds, I don't know if a block wd be possible? Would be worth asking. Dr mapped the exact spot he placed the electrode for the trial, so he knows where it needs to go for the permanent surgery, no need for them to keep waking me and putting me back to sleep this time.

The coverage I got the first two days of the trial was awesome! It was completely unbelieveable to me that my arms, from fingers to shoulders, didn't hrt, or the pain was so mild I didn't notice it!! I slept the best, most refreshing sleep since Feb 2003, and felt more like myself than I had since my injury!

But if the leads can't be inserted at C8-T1 because of scar tissue, and I opt to have the Dr insert them at C7-C8 instead, where they were for the trial, there's a high risk they will move before they scar in and I won't have any stimulation, and the surgery will have been for nothing.

Feel like a kid offered a sucker only to have it snatched away

Hi to everyone,

I received this email article about a teen with a SCS in my inbox...not sure I should hide it in this post but we all like success stories.

Most of us want to see RSD & TOS articles out there in the newspapers.
This teen even provided a POWERPOINT PRESENTATION to show her doctor !!!

I'll put it on the RSD forum too, but here b/c it affects Beth's & other's lives on this forum also.
Maybe it should be a separate thread, but it's here till someone decides if it
needs it's own thread. IN CASE the link doesn't work, I included some of the article in here:

http://www.mlive.com/news/aanews/ind...361.xml&coll=2

http://www.mlive.com/news/aanews/ind...361.xml&coll=2

ANN ARBOR NEWS

Treatments at Cleveland Clinic have put disease in remission
Teen RSD patient educates others.

Wednesday, October 04, 2006 BY JO COLLINS MATHIS News Staff Reporter

Life is so good right now for 15-year-old Jordan Keen ...... throw a party..... On tap for the evening's entertainment? The burning of the crutches she no longer needs.

Jordan, of Dexter, was 12 when she twisted her knee while skiing in January 2004. ....the pain never stopped...., her parents took her to one specialist after another, including a surgeon at a children's hospital in Orlando, Fla.

They all said the same thing: There was nothing wrong with her leg. It must be in her mind.

It took months to be admitted to the Cleveland Clinic, but Jordan finally got in nine months ago and was there for six weeks. She underwent physical and drug therapy and psychological counseling to help her deal with the pain. For some patients, that's enough. But what made the difference for Jordan was a spinal stimulator, which sent electrical signals to her spinal column. Those signals blocked the pain signals Jordan's system was receiving.

Jordan is in total remission now, but she has to be careful. To prevent another injury that could lead to a flare-up of RSD, she doesn't run. She wanted to try out for the basketball team but realized ......

An active member of the YMCA in Ann Arbor, she enjoys swimming, ..........High School marching band.

"I feel amazing,'' she said .... "I'm pain-free, going to school like a normal kid.''

Doctors in Cleveland told her she probably had RSD when she was as young as 3.......................when she sprained an ankle and was in so much pain that she resorted to crawling.............

Jordan is so grateful to be pain-free again that she's telling everyone who'll listen about RSD in hopes that others won't have to suffer through what she did for so many painful months.

She's created a PowerPoint slide presentation about RSD, .... she's already shown to one physician.

"The doctors were telling me I was psycho, and I knew I wasn't psycho,'' she said. "I want to teach all doctors that if there's nothing wrong with you orthopedically, it doesn't mean you're fine. There could be the hidden things, like RSD. I want to help educate everybody about it.''

Jordan learned about Rachel Schneemann, a 12-year-old Pittsfield Township resident with a severe case of RSD, ................mother while they were each buying coffee at the hospital.

"I loved meeting Rachel,'' Jordan said. "It was so amazing because..........I wanted to hug her and tell her it was going to be OK.''

Jordan did get to tell Rachel it will be OK. But she, more than anyone, knew this: The hug will have to wait.

Jo Mathis can be reached at jmathis@annarbornews.com or 734-994-6849


Another article on "Living with Pain" was posted in another Michigan newspaper yesterday.