A Few Questions
 

Hello everyone, I've missed you all a lot! I haven't dropped off the face of the earth, I've just been really busy with a 23 hour course load. Between that, weekly trips to the doctor for bier blocks, and physical therapy 3x a week, I don't really have leisure time. The good news is, though, that I'm leaving Friday for a week in Cozumel to relax. I'm very excited because I need this trip badly! :D

Which brings me to my first question. I'm a little nervous going through security in an airport where not everyone speaks English. Have any of you had any experience traveling to Mexico with your SCS? They move everyone through so quickly at airports, so I hope I won't have any trouble explaining my situation to them. I have my Boston Scientific card as well. I'm also thinking of just leaving my remote in the room when I'm down at the pool or beach, because I'd hate to have anything happen to it. I'll just try to have it at a setting where I don't think I'd need to adjust it.

I'm also wondering if anyone still experiences pinching in their backs after having their stimulator implanted. My initial implant was in November and the revision was in January, and I still get pinching pain in the area of the implant as well as where I'm assuming the wires are. It's not an every day occurrence or anything so it's something I can live with, just wondering if it's common or not.

My SCS has been working well to reduce my knee pain. I have been having more issues with charging lately, and they think that's because it's come closer to the surface and also tilted some. But the advice is to put more layers in between my skin and the charger. I have started a running program, though, and it feels great to be more active again! What's really a problem now is my wrist, which you may or may not remember the RSD has spread to. It has deteriorated quickly, and I went through a series of nerve blocks and then a series of bier blocks, but neither gave me any lasting relief. The next steps are an inpatient epidural infusion or another SCS. I tried the epidural infusion with my knees and while they felt great in the hospital with the epidural in, as soon as they took it out the pain came back. So I'm reluctant to go through that again with the risk of having the same results. But at the same time, it's less drastic and not permanent, which is why I'm really considering trying it for my wrist.

My doctor asked me if I'm ok with 2 SCS implants and I told him that if that's what it comes down to, then I am, but I'd like to try other options first. The thing is, we know now how this treatment has helped me with my knees, which is why it's being brought up. Everyone tells me how they wish they could just program my stim now to reach my wrist, which would be wonderful if it could work that way. I can't accept living with all this pain, so if it comes down to a second stim then I'll cross that bridge, but the idea of having another one implanted is not an exciting one, let's just say...

So my last question is for more information about cervical implants? I know there's not as much information out there because less people have them. Is it true that you can't move your neck for the 8 weeks? How was your recovery? Also, I know there are a couple people here who have 2 implants and are happy. I'd love to hear your input if you could as well.

Thank you :grouphug:

Hi Yellow!!
 

Good to "see" you again! I am happy to hear that your current SCS is helping you. But sorry to hear your wrist is bothering you so much. I can't answer the travel questions, but I can tell you about my "twins". I have two SCS - thoracic and cervical that were implanted at the same time. My cervical SCS actually works better for me than the thoracic one does.

You can move your neck during recovery, but you don't want to twist a lot (same as like your thoracic SCS). While you are learning the right programs for the cervical, you can get small jolts when you turn your head or tilt your head. That eased up in time. My cervical SCS has cut my pain in my hands and arm drastically. It actually gave me the use of my hands back. I am so thankful for them both!!

Well, I gotta run...got a drs appt. Let me know if you have any questions!
All the best,
Nanc
:hug:

Yellow!
 

Thank you SO much for the update! :hug:
You sound so 'alive'! This upcoming trip is very exciting and I can plainly see you need this! You know, I was actually thinking about the airport thing too, because I might be flying to see my mom's new home in Florida. I need a refresher course on this and I know we've talked alot about it. Those threads are buried somewhere a few pages back, so I'll hunt them down and bump em up (unless you beat me to it!). Several folks have flown with their units and will give you peace of mind. I think your idea of leaving your remote in motel is a good one.

Several others here have 2 SCS's, so we can track them down too. Fiona for one. I'm glad Nanc saw your post right away, cuz she gives excellent input. :cool:

I've got to go pick up my grandson, but I'll be back this eve and we'll do our homework on the flying thing. I'm sure others will be here soon too.

It's so great to hear from you again - you've been missed!

Rae
:grouphug:

Nanc, thanks for your reply and it's good to hear that your cervical implant helps you so much! That must have been one heck of a recovery to get them both at the same time.

Rae, thanks for bumping up those threads! It seems like some people go through and are fine, but I think I may take the body scan/pat down option just to be safe. Hopefully no one will give me any trouble at the airport.

I'll let you know how it goes when I get back!

It was a tough surgery, most definitely! I only took 1 1/2 weeks off from work, that was a mistake. My reps thought I was crazy to get both at once and that I didn't take more time off...lol. When I had the thoracic leads changed and that battery moved, I took and additional week...much better that go around.

Hope you have a fantastic trip!! :D


"Several others here have 2 SCS's, so we can track them down too. Fiona for one. I'm glad Nanc saw your post right away, cuz she gives excellent input."

Thanks Rae :hug:

The TRIP for YELLOW
 

The most important thing to remember, and I mean it about your frolic down on the sand or near the pool....... IS.......... sun block. Forget about the stim. Leave the remote in a secure place in the room, such as the room safe so it is still there when you return.

Airports.... take all electronic stuff, even your remote and place it in one of the bins. My experience has been they do not even want to see the magic cards that tell all about the implant. You just remind them you have one before going through the scan, and to tell the truth, once I declared it thus, if the airport had a "puffer" scan device, the radiation is so slight, it is as though it did not happen [I hope someone enjoyed my late middle, or is it early late life bod].:) Airports without puffers have done a pat down and wanding of me and send me my way, and I have flown many times since become robotic, or is it bionic, or is it distrophic, or radiculopathic, or maybe, just maybe..... hysteric, as in Frankenstein.... there we go...... ah, ha, ha.....

On aircraft when they say turn all electronics off, I leave mine set to a comfortable setting and leave the remote put away. Airlines have no understanding about this issue, and to tell you the truth having ridden corporate aircraft about 100 trips, I had even found my old palm pilot with the extendable antenna held next to the window could send and receive messages..... pretty cool, eh? I asked our chief pilot "so tell me about those interferences you get from my phone" and he laughed. He knew of a reg, but in reality one was not going to do harm, 300? That could be another story.

Anyway, my rationalization for leaving the stim on in flight is, why endure agony when I no longer have pills as an alternative...... and I have never seen a flight attendant walk up to a passenger and ask them to switch off a pacemaker or an implanted defibrilator...... get the idea?

So go, enjoy, get a tan, don't worry about the implant, and travel safely.
Prayin for ya,
Mark56:D:D:D:D:D:D:D:D

Everything was fine with each trip through security in the airports, in both the US and Cozumel, which was nice. In the US both times I went through the body scanner. The small airport in Cozumel didn't have one, but everything was ok there as well. That was a relief :)

I actually did get a pretty bad sunburn on the tops of my feet, Mark, despite being very faithful with sunscreen. Fortunately I don't have RSD there and everything seems to be ok now, save for the purple areas on my feet. And my trip was really wonderful and relaxing!! I also got to go ziplining, rappelling, and swimming in a cenote, an underground cave, and they were all so much fun.

Another question about have 2 stims: how does the programming work with the remote? Do you just have one remote or two? I also wonder if it's different with different companies.

I'm strongly leaning towards trying the 5 day stay in the hospital first because even though the odds don't seem to be in its favor, it seems like it is at least worth a try before I go with the much more invasive and permanent option.

I have two SCS's, both implanted at the same time. Was in and out of the hospital the same day. Have two remotes, so have one labeled so don't get them mixed up.

When I had my trials, I had each one done in the doctor's office and went home for five days. No problems other than making sure nothing got caught on the wires and they had put massive amounts of tape to make sure the leads wouldn't be accidentally pulled out. Then went back to dr. office to have trial removed. The difficult part was letting them take them out the trial as I'd loved the pain relief I'd gotten and I knew it would be weeks before I'd get the permanent ones put it. By the way, the trials were not done at the same time...the lumbar trial was done first and then the cervical trial was done about a month later.

Good luck!

Welcome back Yellow!
 

Glad you had such a great time on your trip!

When I had my 7-day trial, it was performed at the surgical center and I went home the same day...it was removed in the dr's office. I had one trial and it was on my left side, I was bummed at first about that but then I realized that it was a great comparison. I could really see how it was helping my left side and could compare it to the pain on my right side. I have SJM SCS's, and have two remotes (labeled both of them). When they were both implanted, it was an overnight stay in the hospital.

Nanc
:hug:

Thanks, I figured it would be the two remotes. If only they weren't so bulky, it would probably be much easier to fit both in a pocket!

At my doctor's appointment yesterday, I told him that I wanted to try less invasive treatment first, so we discussed the epidural infusion. He thought it wouldn't be worth it to do the five day inpatient one, but rather to just skip to the 6 week outpatient one. I did this for my knees, and all the memories flooded back of not being able to shower the whole six weeks, not being allowed to drive, being lightheaded and sleepy from the narcotics, having to carry the pump and IV bag with me everywhere, having a home health nurse visit twice a week to change the bag, having to go up to the doctor's office once a week to have the dressing changed... Needless to say, not a fun experience and as soon as it came out- my pain was back and bad. Of course there's no way to know if it will help my wrist this time, but the short-lasting relief from the blocks I had doesn't seem to bode well, and my doctor hinted at this as well. Nonetheless, I scheduled the six week tunneled epidural catheter procedure for May 17th.

I haven't been feeling good about this decision, though, because I just feel like with a low chance of the infusion working, and with it being a long 6 weeks of treatment, that I'd likely just be prolonging the inevitable, which would be getting the 2nd stim. I also have all of the timing to think about, as I do start graduate school in the fall. So I'm thinking it's the more practical decision to just try the stim. I'm hoping I can call my doctor's office and they can just switch the procedure I'm scheduled for to a trial stim placement. Does anyone know if I'd have to go through a second psych eval? I was hoping that it wouldn't have to come to a second implant in my body, but the bottom line is that I want to be in less pain, so I can deal with it.

One more question as well about a cervical stimulator, how do you charge it? I use the belt for the lumbar one (although I'm going to order the adhesive patches and try those as my rep thinks it'll make a difference in my charging).

Wow Yellow....
 

This is a huge decision you are faced with. I'm sure with your faith, God will lead you to the right choice. I'm afraid I probably won't be much help on this, but I do care, so I'll just send a prayer and a :hug:(((HUG))):hug:

Our fellow 'DUAL-buzzing buddies' will be right along and give great input.
We never fail one another here.

God Bless!

Rae
:grouphug:

Hey Yellow!

Sounds like you have some big decisions to make, and I am sure you will find the right path for you.

I am not sure if you would need to have a second phsyc eval, seems like you wouldn't need it since you already had one and a stim implanted.

Regarding charging the cervical stim - my batteries were both initially placed in my hip/butt area (one on each side), my thoracic battery was moved to my front side when they changed those leads since it was bothering me. The cervical one is still in the back. I use a belt to charge them...it's adjustable:)

Wishing you the best,
Nanc
:hug:

Hi Yellow

I've used the adhesive patches for a few months and the work great. I had a difficult time recharging to the full three bars using the adjustable belt. Give them a try I think you'll be happy you did.

Good luck with your decision.
Sandy

Thank you all, I appreciate it. It is a difficult decision because the treatment is such a trial-and-error process. But I feel like this is the most practical and logical decision, at least. And I know that when the trial is in place and I'm (hopefully) feeling the relief, I'll be all good with it all.

I talked to one of the nurses who said that they can switch the surgery for the date that I have booked, which is good to hear. But I do have to meet with the psychologist again, I guess because of insurance protocol. I don't really know what I'd say differently, and certainly I know what to expect even more the second time around, but I'll go through the motions. Hopefully I can at least skip the test.

And Sandy, it's good to hear that the patches work well for you. I can't get to the three bars either, and I think part of the problem is that the belt gets loose while it's on. So this should keep the charger aligned correctly :)

Well.......
 

...... maybe when it comes to the bubble answer written part, they will hand you a copy of your "first time around answers" so you don't give unknowing conflicting responses..... :rolleyes::rolleyes: Oh, I know, there I go being the foolish poptart high on frosting again....... strum, strum....

May all be well with you in this process, Yellow.
Prayin,
Mark56:hug:

Oh if only, Mark! But that would have to mean that they would be acknowledging my answers just 6 months ago would be the same as they are today, and that is too radical of an idea :rolleyes:

Interestingly, after talking to my insurance company yesterday I found out that they don't require psych evaluations for SCS's. Their words were that it would be like telling doctors how to practice and they would never do that. Hmmm... because this company is very common in my area, and I would think the hospital would have known this. Well, a call then to the pain center is in order for Monday to see if it really is a requirement of theirs instead disguised as an insurance requirement or if it is a process I can bypass. Hopeful for the bypass option because the only available appointment the psychologist has will be cutting it very close to make it back for a final exam.

Oye!
 

I did NOT know we could get high from the frosting! Perhaps I should change my avatar back to the pink poptart! :rolleyes:

Yellow, good for you to be on top of this! That's very VERY interesting to know, coming straight from the Insurance company! This hospital bureaucratic b.s. really ticks me off :eek:

I'm one week away from the start of the trial, and I'm hopeful but nervous!

I was wondering how those of you who have been through the neck movement restrictions sleep? I picked up a couple of neck support pillows. Have you used those or have you just slept flat on the mattress? I'm a side sleeper, though, so I'm just not sure how being just on the mattress would work for me and I'd appreciate your experiences.

As you may know, I tend to over-prepare ahead of time, but it makes me feel better :)

Hi Yellow! I hope the trial goes well for you :) I wasn't under real strict movement restrictions...just BLAST (thanks Mark56). I went to work the last 3 days of the 7 day trial...had to see how I would do with it at work :) I am a side sleeper too and used just one pillow when I slept in the bed. I slept on the sofa or recliner most of the time during the trial and the permanent implant recovery because it was simply more comfortable. I wish I had purchased one of those neck support pillows, I could use it now :winky:
I would think there would be too much bend in your neck if you do not use a pillow (especially if you are on your side). You will find that when you turn your head and look up or down, you will get a jolt. It is not quite as bad when the permanent is implanted, and that gets better in time.

Nothing at all wrong with over preparing...whatever it takes to help you be comfortable with things, do it!

Again, good luck and keep us posted.
Nanc
:hug:

Thanks, Nanc! The jolting sounds a little scary, but I guess that's something you get used to. I never had anything like that with my other SCS. I agree that there's no good way to keep your neck straight when sleeping on your side with no pillow, so I'm hoping one of the ones I bought will work for me.

I will take it easier during this trial than I did with the last one, simply because I've graduated and don't start classes for my Master's program til Fall, so I have more time at home. Monday and Tuesday of next week, though, I get to sit on a hard court bench for 3 hours each day to support a family member. Will be bringing lots of pillows there!

Awwww Yellow, a Court Bench?????
 

I know an alternative to that, but I cannot go into it here as I would be overreaching the purpose of this place. Thus I am muted. Check out the Members Mall under the Classifieds on the General page at the home of NT.... you might find something interesting there.

Pain on a wooden bench is totally unacceptable,
Yup,
Still Prayin for ya too,
Mark56:hug:zzzz

P.S. Go for the sky on that Masters program, we are cheering for you here!

Hey Yellow....those little jolts were kinda weird, but you learn how certain positions cause them and which ones don't. There were more with the trial since it is not as secure. Once the permanent scarred in, I rarely get them. I never had them from the thoracic SCS, they say it happens in the cervical one because of the small space where the leads are...makes sense to me :)

Glad you will have the time to take it easier with this trial. Nothing like having a million things to do when going through this!!

Good luck at court...definitely bring something for comfort with you...ugh!

What day is your trial scheduled for?

Nanc
:hug:

Thanks Mark. I will look into the cushion, I know it has been highly endorsed by many people here.

My trial surgery is on Thursday, less than 48 hours away now. I'm supposed to go in at 11:45, which means I actually get to get a full night's sleep this time instead of waking up at dawn!

Gee You have given me a thought
 

I should start a policy that anyone who sends in an email to the site mentioning the name Mark56 gets free shipping. Huh. Not much of a merchandiser am I?

Anyway Yellow, may your Trial go wonderfully well, and may you find the peace you are seeking in this possible treatment method.
Prayin,
Mark56:hug:zzzz

Well Yellow....
 

You are probably recouping from your surgery now.
Just wanted you to know I'm thinkin and prayin for a smooth, successful outcome.
You know all the rules, so we don't have to nag at ya :p

Caring,
Rae
:hug:

Thanks Rae, I'm very happy to say it went well today! I'm just dealing with the surgical pain. I started a new thread so that it'll be easier for others to find in the future and talked more about how it went there :)