This is concerning a Spinal Stimulator for relief in my back and legs and feet....

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Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/6/2008 9:47 AM (GMT -7)   
Hello, I know there are some other threads and I have read some of them, but I do have some questions that maybe some of you can answer for me.
 
Brief, Brief history.  I have had back problems since I was 20 years old and in a head on car wreck.  I have the following vertebrea either herniated or partially herniated.C5, L4, L5 and S1.
 
I also have what they call some type of Immune system arthritis and possibly other minor types of arthritis.  The Immune type attacks my soft tissues and causes inflammation in my ankles, feet , knees and sometimes hands.  That along with Digenerative Disc Disease. (which I think is just arthritis in the spine). mad
Anyway, I played football, and baseball in Highschool, had the wreck at age 20. ... lived hard and adventerous playing all sports from Rugbee to Competitive National League Softball for way too many years.  I hurt for a long time during it and stupidly didn't stop until, well, it stopped me  :-)
 
:-)  Anyway, sorry to go on and on, I am a 40 year old male with a 4 and 6 year old boys that go and go and go.  Well, about 4 years ago it all got worse.
 
Real long story short, I have tried it all and I can't get rid of back pain or my leg and feet pain.  I really think a lot of my feet pain is the inflammation they can't get under control causing Chronic tendonitis in the tendons and ligaments in my feet and ankles.  They hurt all the time, my low back hurts all the time, and both are "sometimes tolerable" with a pain patch.  But even with that, there are times they still hurt unbelievable and it has taken my life away from my family.  I try and do things with them and if I push it too far, which sometimes you can't help but do, I pay for it for days and days.
 
I am supposed to get this stimulator implant two weeks from today.  I have to get another psych release for insurance....thats why I have to weight two more weeks.  I have heard many scary stories on here about this procedure and to be honest I was pretty excited about it, and actually had some hope.
 
This has been hard, I have had problems at work and at home and depression snuck up on me and it has taken me away from my family.  My wife has to do too much stuff a lot of the time, and over 4 years, 1 year where I missed work more than I went and stayed curled up hurting with ice and heat on the couch all the time.  My wife is not exactily a care taker when it comes to anyone other than our children, she is more suck it up and go type.  Anyway, it has caused her a lot of stress and I know it, and I try when I am able, but.....well, anyway I just wish this could work so I could get back to coaching my boys rather than trying to make some of their games, and so I can start doing more and more for my wife, and well also to get back my own social life, I gave up softball at first, and then even gave up golf.  A round of golf on a "good day" will give me many bad days...I did that everyonce  and a while and quickly my wife got very mad about it, saying "you know what it is going to do to you before you do it ......." and I know it ,but I literally have very little of a life.
 
I am soooooo sorry I went on and on with this, not my intention at first but mainly just want some opinions about this stimulator and also if it helps back and leg pain, will it help the feet pain part that comes from the tendons etc...
 
thanks so much in advance,
 
Hartdawg

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 8/6/2008 10:23 AM (GMT -7)   
Dear Hartdawg,
Welcome to the HW forum. I don't have a stimulator so can't answer any of those questions. I can only say to read the threads here, as you have been doing, because there's a lot of info. in them. And there is no clear answer for any one person. I know there is a trial and from what I've read people have said if the trial isn't very successful don't get the implant. But that's just from my reading.

As far as losing significant parts of your life, well, join the club. I don't mean that harshly, but that's what we are all struggling with, myself included. There are many, many things to accept about the limitations that come with CP. I don't know if you've seen a therapist who specializes in pain management, but that's one thing I would suggest, especially because this is also having so much of an effect on your marriage and family (also very common).

Usually I have more to say but I'm going through a rough time myself these days. I hope others will come along with more info., but research the stim. closely, and pay attention to how you feel during the trial.

PaLady

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2283
   Posted 8/6/2008 10:27 AM (GMT -7)   
I LOVE my SCS. My life has been radically changed because of it!

You are supposed to have the trial first & see how that goes. If it goes okay, then you should be a good candidate for the permanent implant. It did take almost a full year to get the programming right. Also, you may want to do some research into which brand you're getting implanted. The most popular brand has had recalls. I have the second most common brand & I have not heard of any recalls or major problems from my SCS brand. Also, my brand is the smallest on the market. If you're skinny like me, that can make a big difference for comfort. I know someone who has had both the most popular brand & the brand I have & she said she can really notice the difference.

As far as the psych eval, from my understanding the main thing they're looking for is will you have reasonable expectations for the outcome. This will *not* take away all your pain. A good result is considered 40% reduction in pain. I honestly answered that I would do just about anything for even a 10% reduction in pain because my life was so difficult from the pain. If you're taking a test (like the MMPI) then you can look up on line how to answer. From what I've seen, people who answer "yes" to every pain question are not candidates -- i.e., there are ?'s that ask if you agree that you have pain in your stomach, your head, your feet, your legs, your mouth, your eyes, all over. If the answer to those is yes, it's not really worth cheating the test because an SCS won't help anyways. If your pain is mostly localized with pain consistently radiating to the same place (e.g., always down your right leg to your heel, or always down your left leg to your knee, etc. -- if it's constantly changing, no good to get the SCS), then they should be able to get the implant programmed to a good level of relief.

My guess is that getting in a round of golf will still be excessively painful for you. The SCS does not eliminate pain, it just covers it up. Think about the white noise machines that play beach noises so you don't hear your noisy neighbors. The neighbors are still there, they can still cause destruction, you may still wake up to find broken beer bottles spilling over into your yard, but at least you get a mental break from thinking about it for the time you have your white noise machine on. The SCS does the same thing. Your pain will be covered up, but if you over do, your muscles will still shut down, you will still be physically exhausted & when you have to turn the SCS off, the pain will come roaring to life.

I know it sucks, but I really would recommend that you try to make any behavioral modifications possible before the surgery. It is a major decision. It is not without risks, and the recovery period is months. Only your doc can say for sure, but I'm not sure you're going to be able to do all the things you want to do after the surgery. Try to live without them, first. If you make changes & still can't even take care of basic needs like going to work or doing housework or visiting with friends, then the SCS may be a very good option. Like I said, I love mine; but, I can't go running like I used to before all the pain issues. I needed to modify my behaviors & expectations. I still can go cheer my friends on at races. I can go on light fitness walks with them, but things will never be the way they used to.

Hope everything works out for you & you find some relief. If you have any specific questions, please let me know.

Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/6/2008 10:49 AM (GMT -7)   

Frances_

Thanks for all the advice.  I do have a couple of questions.  First a comment, I have already made more behavioral changes than almost possible.  Like I said, I have difficulty even doing basc things, caring for my family, going to work etc....The basics are sometimes possible, but at times they are impossible themselves.  Like I said, when I am doing good and I do play golf, usually I pay dearly.  But it is hard to have very little to do with my boys and their active lives, or being able to do things with my wife.  She sometimes is so tired and stressed from doing everything when I am down and out, that when I do feel better and suggest doing anything with her, she doesn't want to herself.

I am a counselor my self, well now I am a Program Manager, so I understand Behav. Mod.  But, I understood depression too untill I had a Giant Bash of it come down on me.  Anyway, a question about when you said if you over do your muscles that you have to shut off the Stimulator, .....

what is that about?  Why would you have to turn it off, what exactly happens.

Also, I am thin, so what brand do you use, so I can check with my Dr. about that possiblitlity.

 

thanks,

 

Hartdawg


Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/6/2008 10:50 AM (GMT -7)   
Oh by the way.....


PA Lady, thanks so much to you as well.

Hartdawg

Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/6/2008 10:54 AM (GMT -7)   
I'm sorry to add something else,

but concerning something in my first post, is it possible that the stimulator can do anything for the pain in my feet that is related to the chronic inflamation in my soft tissues in my ankles and feet (ligaments, tendons)?

thanks so much,

Hartdawg

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/6/2008 11:19 AM (GMT -7)   
Frances,
First I want to say that was one of the best posts I've read about stimulators. (Hartdawg lucky you both came around about the same time!) I learned some things I did not know from previous posts.

Hartdawg -
Do you use an external stimulator like a TENS? If so, does that help your feet? While it's not the same as an implant, it might give you an idea if that sort of stimulation has any impact. I have an interferential stimulator I got through my PT, and he has said it's like a TENS but more in that it helps with pain and increases blood flow, whereas the TENS only does the former. I have neuropathic like symptoms in my feet, although it's not diabetic neuropathy. Pain down the legs, failed back surgery, and on. We all struggle to put together the best pieces we can.

By the way, I'm also in the mental health field and seeing CP from the inside out is has been a learning experience I could have done without. But it is what it is. I can say to you prepare yourself for a lot of grieving. The likelihood is even if a stim work for you as it does for Frances, you're not going to have the active lifestyle you want with your chidren or things like golf. And you have to begin to think about the price you pay for overdoing it. As Frances' post indicates so well, you may still be doing more damage even with something as seemingly innocent as golf. You were used to being very athletic, so this is going to be one of the bigger areas for you to grieve. I think it's a daily struggle. I have found Marsha LInehan's work on Radical Acceptance (part of Dialetctial Behavioral Therapy) to be very useful in this regard.

There is great support here for things beyond the stim unit. I have found this board to be a godsend at helping me process the never-ending path of chronic pain.

PaLady

Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/6/2008 11:42 AM (GMT -7)   
I do not use a Tens Unit....I did years ago with my back and it helped as far as the muscles went, but not the nerve pain.  
 
I have given MMPI's forever, but trust me, I have no desire to cheat anything, only to start feeling better.  This is not new....far from it,,,,only this stimulator is new to me.
 
I take Lyrica and Neurontin, Zanaflex, Welbutrin, Duragesic Patch, Ambien (and methotrexate for the immune sys Arthritis.)
 
I do have okay days, thanks to the Lyrica and the Duragesic, but my back, legs and feet always still hurt....at least enough to just ache and make you feel "blaaah", but of course other times it hurts pretty bad and others where its unbearable. Mix it with the freakin fatigue (which is hard to explain to the Misses) I guess because this is a invisable disease, mixed with when I feel decent I try and do stuff, my wife doesn't understand the seriousness of this all.  She just sees me when I am doing nothing when I was hurting everyday for a year, and now the past year when I do feel good and do stuff , she gets like the false sense of how I'm doing.
 
Anyway, I am just hoping this will give me that 50% reduction and maybe I can do More with my family.  My boys are 4 and 6 and I do NOT want to miss out on their lifes.  They already have a sense of daddy is sick all the time, and that just makes me so mad.  I know all about what I need to do concerning depression or anxiety or fatique, but sometimes me knowing so much about it and still trying to conquer it makes it even worse.
 
Anyway, if anyone at all knows the brand of Stim Unit that Frances is talking about, please let me know....If its thin and has less problems, maybe that's one hurdle I might not have to deal with.
 
God Bless,
 
Hartdawg

Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/6/2008 11:57 AM (GMT -7)   
Hello anyone.....


I just read on Medtronics Site that " Patients should be detoxified from narcotics prior to lead placement"

I am on a duragesic patch and my Dr. didn't say anything about this.....

Have anyone of you ever heard this before.....if so what's the deal? Why?

Thanks greatly and God Bless,


Hartdawg

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 8/6/2008 12:11 PM (GMT -7)   
Hart,
I'm guessing they want to really determine how much pain the stim is relieving independent of the narcotics since often one of the goals of these higher tech treatments is to reduce the amount of narcotics needed. I wonder if you doc might be able to give you some shorter acting meds for a few days before the trial starts, and then you could d/c them just before the trial. I'll let Frances and others weigh in.

You said you're on neurontin and lyrica. Most of what I know indicate you shouldn't be on both. I'm on neurontin (most of my pain is nerve pain, too, and you're right it's hard for people to understand); lyrica is chemically a very similar med. and my neuro and others docs have told me you shouldn't be on both at the same time. People can be on fairly high doses of one or the other, though. Just a thought from my experience and I'm not a doc!

Hope you find some relief.

By the way, have you looked into the pain pumps? I don't have that either, but some people here do - again, mixed results.

PaLady

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2283
   Posted 8/6/2008 12:13 PM (GMT -7)   
Absolutely *must* turn the SCS off to drive at all times. The level can jump & it's too dangerous to drive safely because you may have to make a quick jerking movement to avoid a collision or such & that could cause the SCS to jump, which would be a major distraction. As such, they don't allow you to leave it on while driving.

By "jump" I mean that the tingly feeling can go from moderate like when your leg "falls asleep" to feeling like you're getting an electrical shock (christmas lights in the rain when I was a child, maybe you can't relate, but try to imagine). You will have a remote control to turn your SCS on/off, to change programs & to turn the "volume" up/down to get more or less pain relief.

The SCS is actually three parts. There is the battery pack (similar to a pacemaker) that will be implanted into a fat deposit (if you're like me, there's really only one place for them to put it -- which can make sitting a little uncomfortable at times, mainly on hard surfaces). Then there is the cord which will run from the pack to the leads. The top of the cord is exposed & will have a certain number of leads.

As for turning if off, personally I can't sleep with it on. I know that is a fairly common problem. Different positions will alter how much relief you get & where you feel the relief, so putting your feet up, for example, or lying flat may not be comfortable for you. I also turn it off to take a shower or get in the pool -- no reason for that except that it's a hassle to get out & dry off if it jumps because I'm shaking all over & trying to get dry before picking up the remote -- probably fun to watch, not so much fun to go through, but that's just personal preference. If the pain for those tasks were unbearable, I would probably choose to keep it on.

Certain activities may not be comfortable for you to leave it on. You also need to turn it off when going through the airport security or it can jump. Additionally, sometimes you can have a slight tremor while the SCS is on. It's fine to leave it on, but at times people stare & you might choose to turn it off sometimes. The SCS has a transdermal charger that is not comfortable to use when you have the SCS unit turned on. It feels very hot on the skin even with the holder that protects you from getting burned. This is not the case when the SCS unit is turned off. Lastly, you might find you don't need to have the SCS (i.e., when pain is better controlled there are some "in-between times" where you won't experience much pain.

If I can say which one I have (hopefully that's not against the rules) -- I have the Boston Scientific model (also has done business as Advanced Bionics). Medtronic is very popular & has a lot of good points to it, but I felt the BS model was a better choice for me because it's smaller, has more programming choices & has an extra port for a second set of leads. The BS models allow 2 cords, each with 4 leads on them. The leads make contact with your dura (covering of spinal cord) and transmit a signal that basically overloads that part of your nervous system to the point where it cannot process any sensory input. It all depends on your success with the trial, but in theory it is possible for them to connect the lead to a place that will "numb" the nerve input from your feet & legs. I have that. It does not do anything for inflammation. The BS model also allows for up to 4 programs, so I have 1 for my legs/feet, one for my arms/neck, one for my neck/head & one that gets neck/shoulders. The leads can slip during the first 6 months (first 2-3 are especially critical). After that time, scar tissue will grow around the leads & hold them in place. To get a good result, you will need to very carefully follow the doc's instructions. In my case, since it's in my neck, I could not lift my arms above shoulder height for the first couple of months. I had to get help & re-learn how to do some things without doing things that could move the leads, like wash my hair without reaching my arms above my shoulders. Your restrictions will be different since they will be based on where exactly you have your leads placed. Even with all my caution, the leads still moved some, and I got an osteopath to use manual manipulation in order to work them back into a more therapeutic place. Also, you will almost certainly need to meet with the sales rep multiple times during the first 6-12 months for reprogramming to get to the programs you like. Since the leads move during that time, you need to go for reprogramming to keep up with the movement. It's a little time consuming, but it's considered customer service & doesn't cost any extra so be patient & keep at it until you find relief.

Hope this helps. :)

Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/6/2008 12:16 PM (GMT -7)   
A quick answer about the Lyrica and Neurontin.

I am not a Dr. either, but the Lyrica worked a little better, but I couldn't get use to how sleepy it made me. So it helps me sleep also, and the Neurontin which was working in beginning (just not as well) I take during the day. My Neuro and Pain Dr. both know so, who knows....been good for me for a lot of the neuropathy down legs.

Oh, one more thing. Why can I not measure my pain difference from where it is with current meds compared to SCS and current Meds? Just curious.

Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/6/2008 12:32 PM (GMT -7)   
Frances...

Awesome information....let me ask you something..

Well, actually tell you something. I have not talked with any Rep. at all....they said that I will have a lady (I guess a Rep.) with me before they do it that day and she will be there before I go home the next day to explain and answer more) Do you think she is a rep of Medtronic or someone or just an employee of the Hospital?

thanks again so much, and sorry to be such a bother.

I have just been hopeful for the first time in a long time and am curious.....they just gave me a video...I learned more from videos and forums on the internet :-)

seriously, thanks and God's Speed to you and yours,

Hartdawg

PAlady
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Date Joined Nov 2007
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   Posted 8/6/2008 12:35 PM (GMT -7)   
If you were still taking the neurontin when you first started the lyrica, that could have been what caused excessive drowsiness. Actually, the lyrica is supposed to cause less side effects (esp. drowsiness) and be bettter at neuropathic symptoms than the neurontin. It may be that you need to be tapered off the neurontin, and slowly have the lyrica increased until it's at a therapeutic range, and you've d/c the neurontin completely but a doc who knows about both meds needs to oversee this. I found because the lyrica is relatively new a lot of docs didn't know how to properly dose it and were dosing it too low. I had two trials of it but believe neither was successful because the dose was at the lowest, so I'm still on the neurontin. If I can ever find a decent pain management doc (had back surgery almost a year ago which failed, and finding a good pm doc where I am is a huge challenge) I will ask for another trial on lyrica but only if someone knows how to dose it properly. I would like to see if it can do a better job at the symptoms in my feet than the neurontin - with fewer side effects. I know the neurontin dulls me.

One other things - I tried cymbalta and I absolutely loved it. At 30 mg it helped mood, but at 60 mg. it was the ONLY drug that made my feet feel somewhat normal again. And the only side effect I had was a complication with a seizure disorder, as some anti-depressants cause problems in that area. Unfortunately, that was why I had to d/c the cymbalta, but if you've never tried it you may want to think about it. I'm on effexor now, which is another SNRI, and it's great with mood but doesn't help the nerve symptoms as much s the cymbalta.

I am not sure of the answer to your question re: pain meds, but I think it's relates to what I said earlier - they want sort of a baseline measure of how well the stim alone helps your pain, and that maybe the % they use to measure success (maybe Frances knows more about this). But again a lot of times the protocols dictate it because one of the treatment goasl is to reduce the use of narcotics. Ask the doc who's going to do the trial more about it in advance, though, to get specific answers for your case.

Frances - again, great details I never knew!

PaLady

Tirzah
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Date Joined Jul 2008
Total Posts : 2283
   Posted 8/6/2008 12:36 PM (GMT -7)   
Never heard of it.
I was on narcs straight through the trial, surgery, etc.

One thing I was told was not to just follow my regular schedule with the Actiq I was taking. I needed to be more mindful about whether I was actually in pain or not. When you're used to being in pain all the time, you take meds earlier in the pain cycle to keep the pain from getting out of control. The point of the SCS is to keep your pain from getting out of control, so if you jump to narcs without giving it a chance, you won't get a good read for yourself as to how helpful the SCS actually is. Of course, it's hard to be mindful if you're cut down so much that you're going through withdrawal.

You'll need to talk it over with your doc, but perhaps he would change you to Fentora or Actiq around the time of the trial so you can take control over how much medicine you receive & to see what you actually need. The trial is only a week or so & it is minor surgery for them to implant the leads (battery is external for the trial) so it's not like you're going to be pain-free that week, but it might be helpful to see if you're able to cut down on meds (which is supposed to be the main measure of success).

Post-Op for the permanent implant was not much fun at all. My PM told me recovery might have gone better if I had been sedated for the 5.5 hour procedure, but I'm terrified of sedation/anesthesia so I opted not to have anything. As such, I can't really tell how you might respond to recovery period, but I ended up taking a **lot** more meds for the first 6 weeks after surgery (I was up to 15 meds -- including neurontin & lyrica at the same time, so I think it's probably ok to do both). I spent the rest of the year cutting down to 3 meds (vs. 5 pre-op) and am now down to just taking Actiq for b/t pain.

Again, it's not as quick to reach maximum therapeutic value as a pain pump does, but it has let me be at work more, visit with friends & be more involved in family life. Those values are very important to me, so it was worth a year's work to be able to enjoy more activities and get off of a lot of the meds.

One last word of advice -- you will not be able to have MRI's after the implant because of the danger of the leads heating up to 106degrees (ouch!) so if you need any (of your feet, perhaps) get them done before the implant. As an alternative to MRI, they do a CT with contrast, bone scan & some sort of nuclear medicine test. It can work, but better to just have any MRI scans you think you might need on hand.

Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/6/2008 12:57 PM (GMT -7)   
PaLady.... When I first took Neurontin I knew several people who went crazy on it and I didn't have that problem. It made me feel like my wheels turned a bit slow and dry mouth, but they both went away. It was the only thing that helped me so much with my Neuropathy...it was a God Send, then like you said my Dr. said he was changing me to Lyrica and I said what for the Neurontin works , he said this is better and its made by the same company they just perfected it. But within days I was hurting like crazy, called him up and he said take two of them and then after a day or so take 3 if that doesn't work come back in. Well 3 worked, but soon another Dr. and the Pain Clinic told me the benefits of taken both if you can tolerate them both at high dose, drop both a bit , and it was the best effect or pain relief I had. However, Lyrica made me sleepy from beginning and so he left dosage same and so I do what I said earlier, Lyrica at night and Neurontin during day. If I'm not hurting bad, I can just take the Lyrica still after being on it over a year and I still get sleepy, and so I don't take the ambien that night. But the Neurontin is definetely cheaper. :-)

Best of luck finding which is best with you and thanks so much for all your comments, I am definetely taken them in.....I don't know when I will be able to ask many questions about the Stimulator to the Dr. being the next time I see him he's putting it in.....


also,, one thing different than what I've read on different sites and seen on here, he said I will come in and they will start the IV which makes me thing I'm going under and that I will stay over night and talk with the lady (Rep. maybe) again the next morning so she can show me more and answer more questions.


Everywhere I read its done under local , oh well, I guess I'll find out.


thanks all, and God Bless and I am staying close.....you've been great
I just pray this will be an answer and end a lot of this pain so I can do some things again with my family.....I will find something that will let me do that..........I've waited a lifetime to teach my boys about the outdoors and sports and all. I am trying through all of this to keep trusting God, he already has blessed me through this, but I have told him that was enough , thank You. :-)

seriously, take care, and to be honest I have already come a long way from 3 , 4 years ago.

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 8/6/2008 1:08 PM (GMT -7)   
One last thing, Hart. If it was me, especially after all Frances has said, I'd be getting all my questions answered in advance - incuding and especially what type of unit, etc. I wouldn't want to be asking question the day of the trial implant - especially if I might be under some type of sedation.

I think insurance companies will only pay for one trial, so if, for example, one manufacturer fails I don't think you'll just be able to try another one unless you can pay for it. And my hunch is that docs implant the brand they're used to - similar to the way drug reps influence the primary meds a lot of docs prescribe. So I would strongly suggest formulating a lot of your questions now and calling and getting some info. and doing your research. And even if it means waiting awhile longer, it could well be worth it.

Good luck!

PaLady

Tirzah
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Date Joined Jul 2008
Total Posts : 2283
   Posted 8/6/2008 1:39 PM (GMT -7)   
PAlady said...
One last thing, Hart. If it was me, especially after all Frances has said, I'd be getting all my questions answered in advance - incuding and especially what type of unit, etc. I wouldn't want to be asking question the day of the trial implant - especially if I might be under some type of sedation.

I think insurance companies will only pay for one trial, so if, for example, one manufacturer fails I don't think you'll just be able to try another one unless you can pay for it. And my hunch is that docs implant the brand they're used to - similar to the way drug reps influence the primary meds a lot of docs prescribe. So I would strongly suggest formulating a lot of your questions now and calling and getting some info. and doing your research. And even if it means waiting awhile longer, it could well be worth it.

Good luck!

PaLady


True, True. Also, Boston Scientific is a smaller company so they don't have reps in every city.
One more thing I thought of for pre-trial: after some prodding, I convinced the rep to leave her "sample battery pack" for me to look at during a doctor's visit before I made my final decision. The sample battery was a plastic mold of the shell that holds the battery & the chip. If you can get a hold of one, try taping it to your body where it's going to be implanted & move around in different positions -- sitting straight, lounging, lying flat on your back, bending down to pick something up ... pretty much any position you would normally do. That way you can get an idea ahead of time how much it will affect you & whether its size will be a problem. For example, even with my smaller sized model I now have to do my core training in my happy tempurpedic bed because doing them on a yoga mat is insanely uncomfortable since the battery grinds against my pelvic bone when I'm lying on my back on the floor & moving my legs.

I participated in a research study for BS & in it they said the larger models have a longer battery life than the smaller ones. I know they said that meant you could go longer in between re-charges with a bigger battery; I can't remember if that also meant that it would last more years until you would need to replace the battery (with avg. use, depending on the model, used to be you needed to get the old one removed & a new one put in every 10-13 years -- though that could have changed in the last couple of years). After reviewing study feedback (participants were all currently implanted with SCS from BS), BS determined to make an even smaller battery than the one I have in me. It's got some new tricks that it can do besides just being smaller, so I'm looking forward to getting my replacement [I'm waiting because they have a new one that's pre-market which will hold a total of 4 cords, that way my whole back - upper & lower - can be covered]. Isn't it amazing what they can do with technology these days?!

Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/6/2008 1:49 PM (GMT -7)   
Why do you suppose I am going under and staying over night, as opposed to local and talking with you and then you going home afterwards. Isn't that the way its normally done.

Just wondering,

thanks,

Hart

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2283
   Posted 8/6/2008 2:45 PM (GMT -7)   
Hartdawg said...


Best of luck finding which is best with you and thanks so much for all your comments, I am definetely taken them in.....I don't know when I will be able to ask many questions about the Stimulator to the Dr. being the next time I see him he's putting it in.....


also,, one thing different than what I've read on different sites and seen on here, he said I will come in and they will start the IV which makes me thing I'm going under and that I will stay over night and talk with the lady (Rep. maybe) again the next morning so she can show me more and answer more questions.


Everywhere I read its done under local , oh well, I guess I'll find out.


thanks all, and God Bless and I am staying close.....you've been great
I just pray this will be an answer and end a lot of this pain so I can do some things again with my family.....I will find something that will let me do that..........I've waited a lifetime to teach my boys about the outdoors and sports and all. I am trying through all of this to keep trusting God, he already has blessed me through this, but I have told him that was enough , thank You. :-)


Hart,
1. The Rep will need to do some initial programming after the procedure, so good chance that's who your doc's talking about. If you can have a notetaker with you for the programming, all the better. If not, at least be sure to get their card in case you have questions later.
2. It's not typically done under local from everyone I've talked to (including my doc who does a lot of these). I have a pretty severe phobia about sedation, so I try to avoid it at all costs. I worked with a behavioral psych to learn techniques to get my mind off the pain for short periods of time so unless it's life-or-death I use those techniques & just cope with any pain. I'm really not sure why the trial wouldn't be done under local since it's not a big deal. My procedure for the trial was about 45 minutes. If you think you can handle it, maybe try challenging your doctor to do it with just local. There are a lot of doctors who do it that way &, especially for the trial, it seems to be perfectly safe and avoids complications of sedation; from what I understand, it really just depends on how anxious you would be without it. I guess it depends on your pain tolerance & how still & quiet you can keep with a knife to your back. ;) The permanent implant surgery is a whole different animal -- really long & partway through I really wished I'd been able to conquer my fear and get the sedation.
3. If you have it done with just local & have a driver you ought to be able to go home as soon as programming is finished. I've never heard about a patient staying overnight after this procedure, even when full anesthesia has been given. **I would double check, if I were you, as to whether your insurance will cover an overnight stay for recovery from a minor surgery.**
4. Sports & hiking -- you're probably still not going to be able to do that much, but remember you can always talk the kids through it, point out role models & examples and just be there to encourage them. I've actually been able to coach a girls' Special Olympics (Downs Syndrome) basketball team without having to run up & down the court. There are a lot of fun ways to engage kids without wearing yourself out (for example, I've glued figurines to remote-control cars & told the kids it was my "pinch runner", then challenged them to a race -- be creative! have fun! the kids can still learn without you injuring yourself; plus, besides sports skills they'll learn some really valuable lessons about creativity, problem-solving, perseverance and self-care that they will carry with them for the rest of their lives).
5. I really agree with PALady. Your doc should be able to answer your questions before the procedure. I would think if you asked for 5-10 minutes of phone time that he would be able to squeeze that in. My doc has an email account that he uses to respond to patients' questions (I didn't know until I asked if there wasn't another way I could reach him), so maybe there's an opportunity to find out through something like that. Otherwise, you could ask his office if you could talk to someone who's recently had the procedure with your doc. That really helped me a lot because I got to find out what it was really like, plus she thought of some things to share with me that are better seen from a patient's perspective.

all my best,
frances

BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 8/6/2008 9:31 PM (GMT -7)   
I have a stimulator and love it too, but mine is the Medtronic implant.  I talked to the reps from both companies ahead of time and I didn't leave my conversation with the Advance Bionics rep feeling like she had any clue what she was doing.    It seemed like every answer either began with "Well, I'm not positive, but" or ended with "but we should ask your doctor to confirm that information."  For example, I asked for an estimation of how often I'd have to charge the implant and she said I'd have to ask my doctor.  But when I asked the same question of the Medtronic rep, he flipped out a piece of paper that showed how often the implant had to be recharged based on some typical low, medium, and high usage settings.  It may be that I just had a cruddy rep from Advance Bionics and/or a really good one from Medtronic, but for me, feeling confident with the rep was very important.
 
I'm having a bit of trouble concentrating this evening, so I apologize if this was addressed and I missed it.
 
Another question you should ask your doctor is what type of lead s/he plans to use with your permanent stimulator.  There are two types of leads that have different benefits and the surgeries to put them in are very, very different. 
 
There are percutaneous leads, which are like thick strings and they put them in through a needle, like an epidural injection.  My understanding is that they do that permanent implant under twilight sort of sedation, because you have to be awake enough to tell them where you feel the stimulation during the procedure.  Those leads are thinner and more likely to move around when you change position.  I believe they always use the percutaneous leads for the trial procedure. 
 
The other type of leads are called "paddles" which is what I have.  For that implant, you have to have a laminotomy so they can fit the lead in, so it's a more indepth surgery and requires full general anesthesia.  The paddle is less likely to move and can get better stimulation for people with certain pain patterns, but there's that trade off of having to have the laminotomy. 
 
For my trial procedure, I wasn't sedated at all and only had local anesthesia where the needle went in.  It took about 30 minutes for my doctor to get the whole thing in place, then I spent another 30-45 minutes with the rep while he programmed the external stimulator and taught me how to use the remote control.  Then I went home.
 
For my permanent implant, I had to be at the hospital 2 hours prior to my surgery time, to get a dose of IV antibiotics in ahead of it.  Obviously I don't remember, but my family says it took the surgeon about 2 1/2 hours to complete the procedure, including the laminotomy.  I was in the recovery room for another 1 1/2 to 2 hours, then sent back to the ambulatory surgery holding area. I stayed there for another 2-3 hours, of which I spent about 45 minutes of with the Medtronic rep while he programmed the implant.   I was discharged from the hospital and on my way home, buzzing right along with my new best friend, in less than 12 hours from start to finish!

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 8/6/2008 10:04 PM (GMT -7)   
Hartdawg: Damm glad to meet You. Reading Your post about your kids and Your wife and the problems You are having bought tears to my eyes. Pa Lady, Francis and Bionic Women gave You more than excellent information and advice. I have nothing to add for their posts covered everything from soup to nuts.
I look forward to hearing on what You decide on and then reading how much Your quality of life improved ! Take Care
Tom Lasko


Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/7/2008 9:31 AM (GMT -7)   
tongue  Tom,
 
 Since my first onset of this forum it has been like a blessing from God.  Everyone has been so nice and since most can completely understand, it is just an unbelieveable experience conversating with everyone and getting replies from people like you who obviously care and that touches my heart.  I am not normally a person that just expresses my emotions so easily, but with people like you its easy.
 
Thank you for your kind words, they truly mean a lot to me.  Its strange, I have been through so much, but even though I have read several downers on this matter, I still for the first time in quite a while have a wonderful thing.......HOPE.  I don't think ANYONE can really grasp the crap that goes with hurting almost ALL the time.  I just love my family so much, and this crap has really hurt my relationship with my wife, and it hurts so bad that she can't completely understand.  Dont't get me wrong, I understand that she has become angry with the situation and she is not the type to talk or try to get help.  She is just so stressed, with the kids and worring about me losing my job.  And my kids, well I still do things with them, but often when I am just completely down with pain, it makes me sad not only that I can't do whatever with them, but that they are so use to seeing "Dad on the couch", and sometimes my oldest, 6, says things like "Dad, you are ALWAYS feeling bad" .  My wife is the type that is so stressed about everything and she vents by walking around the house complaining about this and that out loud, and that just adds to my pain and literally .... I don't know, I don't blame her for everything, I understand about her "anger" its just I wish she would just somehow understand sometimes and just like I was a kid and would wrap her arms around me and say, its going to be Okay.
 
Well, I did not mean to go on that long, really just wanted to tell you thank you, and I will stay in touch with this board, and hopefully all of you.
 
God Bless,
 
Hartdawg

Hartdawg
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/7/2008 9:40 AM (GMT -7)   
cool  Sorry to be back to back but I wanted to reply and also ask Bionic Woman something.
 
How well are you exactly doing.....how much is your pain reduced and how much of your life did you get back.
 
I did find out that both reps are available here, and will talk with both.  I already talked with a rep from the phone, and actually, not to be funny, the Boston Scientific lady or rep I guess over the phone, was kind of like you said.  I don't know, we will see I guess.  I will pray that the right decision is made regarding the type and I will mention the paddle leads to the rep and Dr. and see what they say.
 
I haven't yet contacted the Dr. back to ask why I will be sedated for the trial,,,surely he's doing a trial first.  I don't mind, because I am not a big fan of locals and being aware of what's going on, I get kind of freaked out and scared I'll flinch.  Anyway, I also will stay over night.  I leave before a 24 hour period so I guess its the same as far as insurance goes....its still considered "Out Patient"
 
Thanks so much and please let me know how you have been doing Bionic Woman.
 
thanks again,
 
Hart
 
 
 

Quote by Myla Kabat-Zinn:

"Each difficult moment has the potential to open my eyes and open my heart."

Post Edited (Hartdawg) : 8/7/2008 11:12:08 AM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/7/2008 6:45 PM (GMT -7)   
Hi, Hart,
I'm glad you're asking some questions now. And I sure would make 1,000% positive that you're getting a trial first! Glad that there are some people here with great personal experience to help you. I've learned a lot from this thread.

And I've been a fan of John Kabat-Zinn. And mindfulness in general, although I think it's time to get back to some real application!

PaLady
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