[ElizaJane23]

Hi folks! I've been lurking on this site for some time now and feel like I know many of you from reading your posts. It's been a13 month - long! - journey for me since asking my doctor to refer me for an SCS but it looks like I'm going to get to schedule my surgery. Yeah! We tried to do the trial as a procedure but were unable to insert the leads through the arthritis in my back so I will have a laminectomy (implanting the paddle leads) then be sent home for a week as my trial. I'll come back a week later for a second surgery (hopefully - if the trial works) to implant the battery/generator. Not too fond of having two surgeries but that's the way it is. I have a multitude of allergies so it as taken some time for my surgeon to figure out how to do the surgery around them but I got a call that he had done so. Hopefully Monday I'll get my surgery date!

I have a question for you all: how many of you used a TLSO brace during your recovery to prevent or assure that your leads would not migrate? I found that my surgeon does not prescribe these for his SCS patients. I am wondering if this was something necessary. I don't know what the revision rates are for paddle leads - do they migrate often? I know mine can't be stitched in, as I am allergic to that type of suture but I don't know yet if there is a glue that I can tolerate. It's really a big deal doing surgery with all my allergies, and I don't want to need a revision if at all possible. Is a TLSO brace worth insisting on, even if I pay for it myself? I would appreciate your thoughts. Thanks!

[Rrae]

WELCOME to the forum! You'll love this place

How exciting that you're gonna do the trial soon!
There are SO many folks here who comprehend what this is all about, so I hope you'll make yerself at home, and no doubt we'll learn from you as well.

I had to Google TLSO brace , as I have never heard of it. (See! you already taught me something!) I guess it's also known as the 'Boston Brace'. It looks like quite the contraption!
Maybe someone here is familiar with this and I'm sure you'll get lots of replies in no time...

It's great to have you!

Rae

[Mark56]

Well, after first deep back surgery, I was issued a brace, not of TLSO branding, but a thoracic girdle of sorts [oh yeah, and it was the charm of the friends and co-worker circuit who thought it was fun to poke jubes at me]. That is one of those things you take in stride.

The brace prevented movement in any benidng or twisting motion, a great thing for having had my back split open. It was a wrap around stiff plastic affair which had lacing running up the back attached to large velcro strips by which I tightened the girdle affair around my body as tightly as possible to prevent undesired motion.

Now, as to the use of "the girdle" for SCS implant work. I have never read a single post to the effect of it being prescribed for us after implant. I had "discarded" the trophy of my girdle after holding onto it for a couple of years following the open back affairs.... in fact not too long in months before the subject of SCS had first arisen. Tell you the truth, "the girdle" would have helped me with the whole BLAST routine, and I imagine Rae and all of the others on here who have suffered the FACT of migrating leads would have done much better with one of those "girdles." They would not even have ever become red faced when someone asked them whether maybe it should be adorned with a little LACE. I was.

So, now that you have finished your lurking Eliza, you have brought one of the very BEST inquiries to our whole board. My vote, my answer, is that every SCS surgeon the world over darn well should prescribe "the girdle" as a means of aiding BLAST and helping patients avoid the risk of harm to lead or paddle location.

I do not think I have had any paddle migration of which I am aware, for my signal has been absolutely consistent ever since the day my Boston Sci rep had me program myself. I was told paddle use would be more secure than lead insertion and I opted readily with my surgeon for paddles. I wanted security, and I believe I received it.

So, Eliza, how about you print this out and take it in to your surgeon to inquire whether they will consider prescribing "the girdle" for you. It is an absolute given in the open your back with a zipper kind of orthopedic or neuro surgery, so why not for this one which is every bit as invasive and definitely fraught with the risk bending and twisting can bring.

Yup,
I am with you, and Rae,
Mark56 [there is no "girdle" icon, but this on will do]

[ElizaJane23]

It's very interesting, this vast world that we call the Internet - just depends on where you land as to if this brace is important. I know you Mark56 and Rae - you all have been all over this site and yet you haven't heard of a TLSO brace. This is encouraging actually, as I was wondering about the quality of my surgeon (since he doesn't prescribe them) but now I am reassured that (obviously) others don't as well. I did have cervical and lumbar braces for my 3 spinal surgeries and found that I got so used to them I had to wean myself off of using them! Too bad the lumbar one doesn't fit me any longer or I would wear that. I think I will have copies in hand of various braces when I see the surgeon for my pre-op appointment and ask if he would mind if I wore one? I don't see any harm in it and I sure would be willing to pay for one if needed. Shoot, having to do two surgeries is bad enough with all my allergies - I want to make sure I do everything I can to avoid any more! Thanks for your comments - anyone else want to chime in on this question?

[yellow]

Hi, Eliza, I'm glad that you found this forum!

I just had my SCS implanted, and my doctor gave me an abdominal binder afterwards. If you google it you can see lots of pictures, it's much thinner than a TLSO brace, but it still works well. My doctor said it would be helpful both with the swelling and to remind me of my movements and hopefully avoid lead migration too. It seems to work pretty well, so maybe your doctor will be more agreeable to this? I think it's pretty similar to the girdle Mark was talking about.

[Rrae]

Originally Posted by ElizaJane23

It's very interesting, this vast world that we call the Internet - just depends on where you land as to if this brace is important. I know you Mark56 and Rae - you all have been all over this site and yet you haven't heard of a TLSO brace. This is encouraging actually, as I was wondering about the quality of my surgeon (since he doesn't prescribe them) but now I am reassured that (obviously) others don't as well.

Eliza, this is kinda cute - when I went to do a google on 'TLSO Brace for SCS', the ONLY link that came up was this thread of you asking about it!
You just broke 'new' ground on the world wide web!

I'm amazed at all the different types of braces there are out there!

Depending on where the permanent battery unit will be placed, I would hope the brace doesn't inhibit the capability of making contact with the unit's controller.

Interesting thought tho, thanks for this!

Rae

[Mark56]

That is if I had held onto my lumbar surgery brace, and it would have been a definite BLAST benefit used together with the Log Roll for arising from bed! I think she is definitely right about the issuance of braces for the SCS patients who receive it throacically or lumbar, because of the BLAST benefit.

Yup,
My two cents,
Mark56

[ElizaJane23]

I did hang on to the (second) of the braces for my two lumbar spine surgeries - the brace shop made me a contraption of their own. What fun! It was a corset in the front, complete with 20! laces on each side and 6! adjustable straps in the center. It was a monster to get on - and it had to be one before I could get out of bed. The corset attached to two rigid bars that formed around me, and attached to two rigid bars along each side of my spine. The bars that went around my hips hit me right at the sciatic notch - yep, you guessed it! - 12 years later and I'm still having sciatica from the 3 months in that brace. Fortunately my hips are too big for that (one time being heavy has paid off) so I'll need a new one. Even if I have to pay for one myself, I'm going to get a good one, one that I can use afterwards for things where I need the support. The only use my other brace has been is for my cats to sleep in it at the bottom of my closet. Time for the trash can.

On another note - I'm still waiting to be scheduled for my (surgery) trial. It's been 7 weeks! since I saw the surgeon and he thought I'd be able to schedule it within a few days. Evidently it has taken all this time to figure out how to do the surgeries around my allergies - I wouldn't know as I haven't gotten any updates (yes, I have called). I got a call from his assistant 8 days ago saying he had figured out the sedation and I could schedule. BUT the surgeon hasn't told them how much time to allot for each surgery. Kind of important for them to know. So I'm still anxiously waiting for the phone to ring - I just want to have some idea of what's going on in my life! It's Christmas time and I have to hire drivers to go into town for shopping and for doctor appointments, so it would be great to combine these things - but I just need to know when it is! Sigh. It'll happen someday, right?

[Mark56]

Waiting for the call..... waiting..... look at the phone..... waiting..... look again.... waiting... decide looking at the phone won't make it ring... waiting.... sleep.... waiting..... finally the phone rang with the date... waiting just a LITTLE more, then surgery day arrived! Hallelujah!

It will come,
Prayin,
Mark56

[ElizaJane23]

I'm sure you all have had the same experience by the time you get toyour SCS implant with all the surgeries, meds, doctors, physical therapy, complications, etc. It's been 14 months now since starting with SCS, and I did put everything on hold for 2-3 months while my daughter was in a difficult pregnancy. You would think that I would have learned patience by now, but the Good Lord is giving me one more chance to get it right. Everything will come in time right?