Cervical SCS for Wrist Pain
 

I thought I'd start a new thread so that it's easier for other people to find in the future, because there aren't many cervical threads out there.

I had my trial put in this afternoon. The procedure was over with pretty quickly because they were able to get the lead in the right place. For the trial my doctor just put in one lead, but with the permanent he'd put in two, which would also cover me if my RSD spreads to my right wrist, something that seems very likely in the future. The anesthesiologist thankfully gave me enough local this time so I couldn't feel what the doctors were doing on my back- very appreciated.

The programming was easy as well, and there was no problem finding spots that had good coverage. My rep was so happy for me that everything went smoothly and was excited for me that this will hopefully help. She went on to tell the nurse how I'm one of her favorite patients :) I've been blessed with great reps who truly care and I am very grateful.

Now I'm home and doing well, my back is just really painful. The incision seems to be a little off center to the left and up by my shoulder blade.

Thanks for this Yellow!
 

I'm so glad you started a new and easy-to-find thread.

Sounds like this trial procedure went very smoothly. I'll certainly chalk that up to more answered prayer!! :hug:

Take it easy on yourself and play with the settings. I'm sure you're gonna fall right in love with this thing! :D

So happy for you!

Rae
:grouphug:

Yay Yellow!!
 

I have been thinking about you today and wondering how things went. So happy to hear you are doing well and getting good coverage. Hope things continue to progress well.

Definitely keep us posted.
Nanc
:hug:

What is your wrist pain from?
Cervical spine problems?

Glad you are doing well.

Thank you! I'm getting good coverage on my pinky and ring fingers and the outside part of my forearm, but I have to turn it up high to feel it enough on the other side. I think this is because in the OR it was turned up really high when they were testing it. But that's something I'm sure can be adjusted for the permanent. And even still, I'm getting good pain relief.

I'm definitely noticing the positional changes are greater when its in the cervical area, because the space is more narrow. It's mostly when I move my neck. No zaps yet, though!

Jo*mar, my wrist pain is from RSD. I've had it in both of my legs and then last year it spread to my wrist as well. Since I've had success with an SCS for my legs, I decided to try one for my wrist as well.

So happy you're getting relief from your pain!
 

I hope that as things progress that you'll get more and more pain relief.:hug::hug:

I'm still getting used to adjusting with the positional changes. It's weird because before it felt stronger when I move my head to the right and weaker to the left, and now it's the opposite. Certain changes in position can increase the strength of the stim a whole lot to where I can't get it back down by moving- I need to change the program. Sometimes it's just up to my elbow, and sometimes it's all the way up my arm and over into my chest too. Most time I feel it stronger on the outside of my arm, but then there's times where I feel it stronger on the inside. So it's just something I need to get used to, and I know it'll be less of a problem with the permanent. Last night sometimes it got so strong that it was a painful pins and needles feeling instead of a comfortable tingling.

If I shut it off for a little while, the high levels of pain come back right away. I'm so grateful that this is working to reduce my pain. And of course I still do have some, and certain activities still make it worse, like typing or pushing off of a chair with it. I also have issues with increased pain if I keep it bent for awhile, something that's hard to control when I'm sleeping. So last night when it was bugging me more, I slipped on my wrist brace for the rest of the night to keep it in a straight position and that worked just fine.

Hi I. So pleased that you are experiencing some relief :)

I have my stim just under two years for Failed Back Syndrome. I have noticed in the past few months that my stim feels stronger than usual. I put this down to the fact that the leads have scarred in by now. At first every movement meant the sensations went all over the place but now they are more confined which is definitely helping me cope with my pain much better. Plus some meds I still need to take.

Jackie :)

Jackie, it's good to know that the stimulation becomes more stable as time goes on. I've had my thoracic one for a little over 6 months and can definitely feel the scar tissue in there already, but that you are 2 years out and still recently have found things more confined is very good to hear!

I sat through 3 hours of court today and will again tomorrow. It's nothing strenuous, just sitting in one place for that long is difficult with the pain. And it doesn't help that those wooden benches are so darn hard. I brought a pillow with to cushion my upper back, though, which helped some.

A family member of mine is going through a trial for a difficult divorce and he is trying to get custody of their 3 young children because their mother is very unstable and unfit (I don't want to go into details, but I'm constantly worried about their safety). But the whole decision rests in the hands of the judge. He began testifying today and will continue tomorrow and it is very obvious to those of us who know him that he is very nervous, but we don't know how the judge will read his actions and answers sometimes. If you could spare some prayers for him that he says the things that the judge needs to hear and stays calm and confident, so that the kids can be in a safe and loving home, I would truly appreciate it.

Hi yellow

To sit for three hours is an achievement. It's not something I can do as the pain can be bad I have to get up and move around. Yes a pillow would certainly help me too. Have you tried out Marks cushion. I got one last year and it's amazing. You should speak with him about it. It's one you sit on and would certainly help on those hard wooden seats. I also bring a pillow with m for behind m back otherwise I can't sit still.

I'm sorry about your family member. I will certainly include him in my prayers. and hopefully the judge will do the right thing.

Yellow...
 

Oh how I know the pain of sitting on a hard surface!
My prayers going out for a victorious trial :hug:. I can imagine how tense this must be and I feel for your family member who is going thru this. I know he will need alot of family support. I too had a SIL who was unfit to be a mother to her 3 children. Those were some very dark days.


This too shall pass....

Caring,
Rae
:grouphug:

Thank you both for the prayers, they're very much appreciated. We have a break in the trial now until mid-June, when it should finally be finished.

The pain of sitting was mostly in my upper back, where the incision is. The 1 hour car ride each way didn't help either of course- oh how painful riding in a car is post SCS trial/permanent surgery! Then my grandmother, happy with a moment that went well and not thinking, patted me on the back quite hard right where my incision was :rolleyes: Ouch!

I get my trial out tomorrow, which I'm not looking forward to because I know the pain is going to be back strong. But I'm anxious to get a date set for the permanent surgery!

My rep told me that I could have the battery put in my lower back on the opposite side of the other one, which is good, because I think that's probably the best location. This is one situation where not having a lot of fat isn't a good thing. At least then I'll be symmetrical :p

Trial date...
 

Yellow, I sure hope you get your date set SOON!
I'd hate to think of the pain you must endure in the meantime. The 'good' thing in all of this is that you've been thru this before and you know what's going on, so the 'anxiety-factor' isn't near as high, right.

Let us know what you find out. I have a little calendar that I mark these important days. I like to keep track :)

Rae
:hug:

So the lead is out and I have a date: June 21st! Four weeks seems like a long time, but hopefully it'll go by quicker than I think. It's a cruel trick to have pain relief and then have it taken away from you, but I know that's part of the process. And like you said, Rae, I've been through this before so I know what to expect, and I can do it again.

My rep spent time working on the programming before we took it out, since I was only really getting coverage in the outside half of my hand and arm unless I turned it up high. We weren't able to get it over to the other side, so now they'll make a note for the permanent surgery to start out lower with the leads.

They discussed possibly putting the leads for my arm out of the same battery that I already have in by "splitting" them. This would mean that out of the 16 contact points for each set of leads, I would be able to use 8 of them. So 4/8 points for each of my thoracic leads and 4/8 points for each of my cervical leads, if that makes sense. However after they thought about it more and the fellow who suggested it and knows my case really well discussed it with my doctor, they decided it would be a better option to put a second battery in. While it sounds nice to have only one device inside of me, there's a lot of risk this way because it limits the programming abilities a lot, and I could end up having to have another surgery to put the second one in anyway if it doesn't work out, which I certainly don't want. Interesting that that is a possibility, though.

So the countdown begins. In a minor silver lining, the hospital I go to just opened a brand new hospital building recently, so I'll be in a new OR, new recovery room, new hospital room, etc. I hear the new hospital rooms are very big and nice, which should make my stay a little more tolerable ;)

Yellow that's great that you now have a date and something to look forward to. I think you are better off having the second device. I would imagine that the other way it could take from the original device. I dunno just putting that out there. But I'm so glad that you will get it all sorted out real soon. And a new hospital lucky you :D

Jackie :)

Hi Yellow! So glad you have a date set :D And you are going to a new facility? How awesome!!

I agree with getting the second battery put in. When my dr and rep discussed the options about mine, they both thought that the second battery (separate from the other SCS) was better to have than not...mainly because of those reason you stated.

I am excited for you! Keep us posted!!
Nanc
:hug:

Countdown!
 

I always wondered about whether or not they could split the existing battery in 2. It sounds like a great idea not having to have another unit implanted, but realistically I can see why it probably would cause problems, like the one you describe. Also I'm sure the battery would drain very quickly with 4 leads pulling on it. Probably not good for the battery, plus you'd possibly be re-charging at least every day ....ek.

I think you have pretty cool doctors, Yellow. They seem to be looking out for your best interests and making it as easy as possible on you to have the 2 scs's.

Let's see .... :rolleyes: have you names for the 'twins'? I can't remember if you named your first one.

We'll be at your beckoned call to help you bide your time for these next 4 weeks. We should start a thread on how to make it easier to get thru the waiting period. This would potentially become a 'depression' risk for those of us who battle it, so it'd be good to have a plan on how NOT to become depressed as the pain is greater.

We're and awesome bunch when it comes to pulling our heads together :D

Rae
:grouphug:

I agree that two batteries are better than one in this case, because it's better to be safe than sorry. And like I told them, that is what I expected before that appointment, so my hopes weren't up too long ;) That is also another good point, Rae, about the charging that had crossed my mind too- there's no way I could charge that often.

The doctors I have are really great. I am very lucky. My pain doctor is a very good listener and never tries to influence my decisions about treatment, but rather he just puts all the information out there. He wants me to make the decisions that are right for me. And I have been a patient the entire time the four fellows have been doing their fellowship and have worked closely with all of them, so it is sad to see them go their ways now at the end of June all over the country. The one that I mentioned that I saw at this last appointment I have had especially very many conversations and visits with, though, and I know he'll make an excellent pain doctor.

I never did name my first unit, but I really should, especially now that I'm getting a second. I'll have to come up with something :)

I think a thread like that would be a good idea. It definitely is a difficult time, and not something anyone could really understand unless they've been through it. I've had family and friends ask me if I'm feeling better now that I got the trial out. Yes, the pain in my back is gone, but I'm actually feeling much worse because the RSD pain is back full-force, and it's really hard for others to get it or what it is like to have the the thing that gives you relief and then have to have it taken away again for some time.

The support from this board is so great. It's just such a wonderful, caring community that I feel very blessed to be a part of :grouphug:

Hi yellow
Glad to hear you have a date. I know 4 weeks seems like a long time but that'll give you time to heal from the trial.
Seems like the second battery is the best way to go I would hate to charge every night. sorry to hear the RSD is giving you so much pain. I just heard of paula abdul also suffers from r s d.
Do you have time off from school now? Hopefully you get a little break. So that you can recover.

Sandy

I do have time off from school this summer, which is nice because I don't have to worry about missing classes.

I have heard that about Paula Abdul also. I think hers is in remission now, and I'm very happy for her for that. I couldn't imagine having RSD with all the work she does!

Hoping and Praying Yellow!
 

That your date for the op comes near without seeming too long a wait. Those days in between are fairly difficult once a patient is aware of the relief of a successful Trial. May your permanent go well for you!

Your brother's trial has to be espeicially difficult, for I understand those uncomfortable and hard courtroom gallery benches, as the emotion of the entire situation, preparation, endurance of testimony and cross examination takes its toll, most especially when multiple loved ones are involved. Thus, I pray that all will be well, and the children will emotionally be protected throughout the entirety of the unfolding history then future.

May all of you have peace,
Prayin,
Mark56:grouphug:

The days in between are definitely a challenge. Yesterday and today have been really high pain days for my wrist and now I just can't wait to get the SCS in, something that a couple months ago I was trying to avoid. I knew once I felt that relief from the trial, though, all of my hesitations about having a second surgery and second device in my body would be trumped by the feeling of pain relief, and I was right. 18 more days.

Thanks so much for your prayers, Mark. I do worry a lot about how this is going to affect the kids in the long run. There is some benefit to them being young, but there are also disadvantages as well because it is harder for them to understand why this is happening. They are 4, 6, and 7 years old.

Yay!
 

Hi Yellow,
I'm Jan, and new here. So glad to hear that you have the surgery date set for your permanent implant! I'll bet you are counting the hours until that day gets here. I'm scheduled for my trial July 24, so I have a ways to go. You can be sure I'll be praying for you and hoping for a great outcome for you!
Jan :p:Good-Luck:

Thank you very much, Jan!


I was thinking today and I have a question for you all that I want to get your opinions on. What do you do for the ride home? This has always been extremely painful for me, with both trials, the permanent lumbar implant, and the revision. In the past I've tried to prop part of my back with pillows so the other part doesn't touch the seat, however this time I'll have incisions on my upper and lower back so I don't think that will work so well. It's about an hour drive from the hospital to my house, so it's a significant time to sit in that seat.

So, I thought I'd turn to you to see if you have any methods that have worked for you that I haven't thought of.

Hmmm...
 

I know you'll get some good suggestions, Yellow, from our caring comrades.
Seems like someone actually rented a van or something and put a mattress in the back. I bet Mark will share how he coped with his many back surgeries. I really feel for you! I live in such a small community in which everywhere is only a 5 minute drive, so haven't put to thought this scenerio.

Wondering if a back brace would be something to consider? Would Dr write a script to rent one maybe?

Caring,
Rae
:hug:

Rides Home
 

The first surgeries were heqq on wheels getting home......

Thereafter, I invented the means by which I have made the other trips.... but then you know that, Rae. Our next generation is within three weeks of popping onto the market. The prototype testers, people with Tarlov Cyst and a variety of other horrible difficulties have helped us realize a far better solution existed. They gave exceedingly great comments. Only the market will tell.

In the meantime Yellow, pillows can be a very great help once arranged properly. I never thought about the mattress idea........ not bad, not bad at all.....

Yup,
Mark56:grouphug:

Hi again!

I had both SCS implanted at the same time, so I had four good sized incisions. I traveled by car and the hospital actually gave me a pillow for the ride. My seat was reclined just a small amount (because getting up from that was a real task!). I think no matter how you travel, you will be uncomfortable because of the incisions. Try to use the pillows to make yourself as comfortable as you possibly can. Having the binder on helped the lower/mid back. They put that on in the OR and I had to wear it for maybe 6 weeks.

I couldn't imagine laying down because getting up...painful!!

I wish you the best!!
Nanc

Pillows
 

Wow, an hour ride home doesn't sound like much fun at all, Yellow! After my fusion, I had about a half hour ride home, and pillows were very much the order of the day. While I was in the hospital I had this wonderful nurse, Jesse, and he would walk in with his beaming smile and say, "Well, how's my pillow queen today?", because I was surrounded by pillows on my bed in order to find some comfort. The day left the hospital, Jesse was my nurse, and he made sure to prop me up in my friend's van with probably more pillows (and their pillowcases) than was likely allowed. When they wheeled me out to the curb as I was being released, you could hardly see me for all those pillows...lol! Although the ride was not pain-free, the pillows certainly softened the bumps and bounces. Of course a nice, cushy mattress would've been even better, but I survived the trip and promptly climbed into bed and slept for about 4 hours straight!

Hopefully you will find a bearable solution as you prepare for your ordeal...um, I mean adventure! I'll just bet there are some members of this forum who will have some great suggestions.

Hoping and praying for the best outcome for you,
Jan
;)

Thanks for all your suggestions!! The mattress would be good if there was a way to arrange it. I will bring lots of pillows instead of just one this time, that's a good idea. I did get an abdominal binder with my first SCS implant and with my revision (I should remember to tell them not to give me another new one this time), which I've worn. Would a more structured brace be better, do you think, or does the binder suffice?

Tonight I was reaching over the side of the couch for something and since my SCS has been kind of going crazy :eek: I'm having lots more positional changes all of a sudden, and it goes off and then back on when I move sometimes, and has shocked me several times. Sometimes I would have to turn it up high to feel it at all and others I felt it very strongly like I should with it up that high. I'm VERY nervous about this. I shut it off for now, I'm going to bed for the night soon and I'll deal with it tomorrow. I wonder if I could have pulled a lead? I wasn't stretching that much when I was reaching or anything- I have done yoga moves before and been fine...

I don't know Yellow
 

The only time I had a binder was after deep back surgery to reassemble my spine. For the SCS, there was no such thing issued.

I pray for your pain to ease, and for the misbehavior of the stim to abate,
Mark56:grouphug:

The binders helped a lot with reminding me not to BLAST and be careful. They also helped with the swelling initially. After the first implant I had a seroma and wearing the binder helped bring it down within a couple weeks.

The same thing is still happening with my SCS this morning. I guess I should call my rep. It feels like when, during the trial, if the wires come unplugged. I had this happen to me many times with the cervical trial because the wire was so short, and right before it comes all the way unplugged and is still in a little bit of the way the feeling goes in and out and shocks you sometimes, which is how this feels. I wonder if the wires from the leads could come unplugged from the device when it's inside of you too? I only hope that if anything needs to be fixed inside of me it can be done Thursday while I'm already having surgery.

Revision a Possibility
 

If the OR schedule allows, and if you are open in the same location, a revision, if necessary to better secure the leads is within the realm of possiblity if surgeon concurs. O know from using an Interferential Stim unit ever before having the implant of a Trial SCS, when the IS [a tens unit on steroids] would become slightly dislodged, I would be the Zing of my life, and it would not stop Zinging until I resecured the lead to the unit or swapped out the topically applied Tens pad. When a wire lead would work its way out of the adhesive Tens pad, that bare wire against skin produced the most profound SHOCK, moreso than when one discharges electric static by walking across a carpet.

Before surgery, have a discussion with the office whether lead could be dislodged, causing the electrical shock, then ask whether revision might be part of the procedure according to need.

Prayin,
Mark56:hug:zzzzzzzzzzzzz

Oh Yellow I sure hope they HEAR you on this! If this could be taken care of right then and there, how much better you'll be!
I would HOPE he wouldn't make you schedule another time to address this :eek:

Sending my prayers....
Rae
:grouphug:

Yikes, that certainly doesn't sound very pleasant, Yellow! :eek: Hope you can get hold of your rep. very soon and get it all straightened out!!

Hi Yellow
I hope you've called your rep about the shocks you've been getting . After I hurt my back last month I couldn't feel the stim on my right side. I met with my rep twice now to try and resolve the problem. He said the inflammation probably caused the change in sensation. As of now the settings seem to be back to normal. I don't know I'd the epidural I'm getting on Monday will affect the settings. Someone told me the epidurals create a feeling of pressure and heavy ness in your back from the fluid that is injected. Is that true?

Sandy Kay.

Not Here "said the little red rooster"
 

Nope, no heaviness here!
Prayers coming though,:grouphug:
Mark56

I talked to my rep and she said that it might be able to be fixed by reprogramming, and I am crossing my fingers that it will. She said there could be something in my epidural space like scar tissue causing it. So she's going to try the reprogramming in pre-op, which makes me feel better, because we'll know before I go into surgery if that'll fix it or not. Since the issue I've also been having soreness in my implant site, though, and she said I should let my doctor know about that. I'm hoping that if I do need something fixed surgically, it can be done at the same time, because I'd really hate to go back in for another separate procedure. My only worry is if approval from insurance is needed first.

I've been leaving my SCS off a lot of the time because the issues range from annoying to scary. But Thursday's only 4 days away and hopefully it can be resolved then.

So I ended up going to meet with my rep and doctor today instead. When my doctor heard about the situation, he wanted to make sure we figured out the problem the day before so that if anything needed to be fixed by surgery in the morning it could. I am SO grateful for that, because I know there are so many doctors out there who wouldn't do that. He came straight out after a surgery to meet with us. Another problem I had been having since the stimulation changes too was that the implant site was sore, and he felt it and said that the battery had shifted, which explains the soreness. It's nothing bad enough that needs to fixed at this point, though.

And the stimulation problem was able to be fixed by programming!! Hooray! My rep showed me the screen where one of the contact points had a red 'X' on it. Probably a piece of scar tissue broke off and was squeezed against that spot, I think is how she explained it. So she changed the programs so they didn't use that contact and it's better now. I can breathe a huge sigh of relief.

Now surgery in the morning. I'm nervous, of course, and not looking forward to all the pain, but I'm very ready to have the relief back.

Hey Yellow! So glad you had some good results from your meeting today! It is great when your dr looks out for you :) I had some reprogramming done a couple of weeks ago, sometimes it makes a world of difference.

Good luck on your surgery tomorrow, I am sure everything will go beautifully. You will be in my prayers.

Keep us posted on your progress.
Nanc
:hug: