A Thank You and Good News
 

Hi Everyone,
First of all, thanks so much for the warm welcome and for all the wonderful info, input, and encouragement that I've found here! What an amazing group!

Secondly, I got good news today. The "test drive" for my SCS (Boston Scientific Precision Spinal Cord System) has been scheduled!! Wooo Hoooo!! :trampoline: I go to the hospital on July 24 (which seems like an eternity away right now) for the trial implant, try that out for a week. If it works (please, God, let it work!), then about a month later they will do the laminotomy and permanent implant. I am excited, scared, hopeful, giddy, cautiously optimistic, and about a thousand other things right now! I spent some time reading some of your experiences and it gave me a lot to think about. I appreciate the honesty and the willingness to share what you've been through.

Meanwhile, I'm supposed to go the physical therapy for 6-8 weeks, which is good because it means I can use the pool at the health center. I had therapy there a couple of years ago, and the pool component of my PT helped more than anything. Then my insurance ran out and I could no longer use the pool...waaahhh!! I will also be scheduled for the pre-op stuff...chest x-ray, EKG, etc.

One of the concerns I have, of course, is the financial part of this whole deal. I have only Medicare, and while I know they will cover part of it, I'm not sure how much will be my responsibility. I live on SSD and my state disability pension, which is enough to live on, but without much left over. I do know that the hospital here has an assistance plan, so I will be checking into that. Have any of you experienced this, or do you know anything about the costs involved?

Again, thanks so much for the nice welcome. I pray you are having a pain-less day! :smileypray:
Jan

Hullo Jan!
 

Good news about your Trial!! Remember BLAST [no bend, lift, stretch, twist] during your Trial so the leads which are merely taped [OK, so it is a lot LOT of tape] to your back do not MOVE on you. Do get out and walk and such so you may feel the real deal.. Explore the settings on your remote. Really try it out! That is how you learn whether it is right for you for sure.

Dare I give an advertisement for the notion of Programming the Permanent yourself if the Rep will cooperate? Just have Coral Toe drop down to your end of CA from her neck of the woods and gang up on your Rep.....

Anyone ready for a good old fashioned dogpile? I know Rae probably has one tucked away in her left pocket!! I will let her suggest you purchase 30 of those reach grabbers.

Prayin the wait is not too long drawn out,
Yup,
Mark56:grouphug:

[QUOTE=Mark56;884656 Just have Coral Toe drop down to your end of CA from her neck of the woods and gang up on your Rep.....
:[/QUOTE]

LOL - for sure!! My pain doc covers the area between Portland OR and Seattle WA....too bad she doesn't deal with Cali too. But as Mark suggested - self programming is the way to go :)

Hi Jan

So glad to hear about your approval for SCS trial. I know it seems like a long time to wait but it gives you time to get things ready for no bending, lifting,reaching and twisting. My rep said self programing is left up to your Dr to decide. Hopefully you'll find it a relief.

Pool therapy is helping. The spasms have eased up and movement is easier. Baby steps to feeling better. I hope your therapy helps.

Sandy

Pool Therapy is SO Cool, yet Warm
 

While taking baby steps in the pool, the result is an unequivocal improvement. The warmth helps to calm the muscles as they are worked in such a suspended relaxed state. Thus the Warm can indeed be Cool!!

Jan, you will have this to do following surgery as Coral Toe has shared. It will be good, and if the therapy facility doc wants to prescribe does NOT include a warm therapy pool [this will be post permanent surgery, although I did it pre-surgery to build up strength FOR surgery] please be prepared with foreknowledge regarding a facility so equipped!

Prayin still,
Mark56:):grouphug:

Good to hear from you
 

Hey Mark!

So good to hear from you--how did your surgery go today? I just got on here after running errands today and paying for it heartily with pain, so haven't had time to peruse the board yet. Yes, the pool therapy is both healing and strengthening. Today I called and went ahead to set up my PT sessions, thinking that if I do it now it will help me when the surgery time comes. Plus, they will do all those wonderful things that help to soothe and relieve at least some of that burning pain!

I'm going to go now and search the board to see if there's any more word from you...praying that I will find good news.

Gentle hugs,
Jan

Congratulations Jan!
 

This is great news! :hug:

The others have given great input. With 2 months to prepare, you'll feel much better about going into this I'm sure.
Regarding the cost, I'm not real sure how it works with Medicare and SSD.
It might be worth checking over at the SSD Forum. Here's the link to take you there:
http://neurotalk.psychcentral.com/fo...aysprune=&f=28

Perhaps you could start a thread over there asking how well they cover these units. I think these SCS's are considered DME's (Durable Medical Equipment), so that might be a way to search out some answers as to whether or not they cover DME's. I'm pretty sure they do, pacemakers and such, but I too would be curious to know about the SCS. Please let us know what you find out on this. I'll also search for some answers.

Ahhh, the therapy pool brings back good memories! That soothing warm water doing non-weight bearing exercises. Mark brings up the excellent point of doing the therapy to build up muscle strength before the surgery!

Hmmmm, I couldn't seem to find a dogpile as Mark requested, BUT I did find a PILE of dogs!

http://dl7.glitter-graphics.net/pub/...x9slahm5jk.gif

Ah, how a chuckle is good for the heart :p

Rae
:grouphug:

Great advice!
 

Hey Everyone,

Thanks SO MUCH for all the excellent input and links and just being generally wonderful! I can hardly wait to start PT and maybe get some temporary relief from this burning pain that shoots down my legs constantly! My first session is this Thurs. Wish the "test drive" for the implant wasn't so far away (July 24), but it will be just enough time to use up my PT Rx, which will hopefully strengthen me for the surgery.

I'll also check out the SSD board, too...thanks. And I love the doggies--nothin' like sloppy puppy kisses to brighten the spirit!

Jan;)

Hi Jan, I'm glad your reading lots of threads to gather as much information as you can, that's definitely the way to go! :) And of course we'll be here if you have any questions that come up before your trial.

Strengthening with PT beforehand is a good idea. Especially strengthening the legs. Since you can't bend your back, you need to do a lot of squatting, and strong legs and tons of squatting practice with PT helped me a lot with this!

Thanks, Yellow....and good luck with the SCS for your wrist pain! I'm finding that this board is an awesome place to find information, support, and just reading others' experiences is so helpful!

Just an update...
 

Hi All,

Just catching up, since I haven't been on here much lately due to the BURNING pain in my left leg/foot! I started PT last week, and it's helping a tiny bit, but I'm hoping it will be more helpful once I can get in the pool and start some of those exercises. Went to the hospital Monday after my PT session for some pre-op stuff since I already had an appt. scheduled with my PCP this Friday. Got to the hospital and they didn't have/couldn't find the orders for the lab work.....grrrr. I was in a LOT of pain by then, so not a happy camper, but drove home and took pain meds and tried to relax a bit. Called my surgeon's office the next day, and they told me that they were sure the orders were at the hospital, then got a call saying that yes, they were there all the time, so went over there again yesterday (it's a half hour drive), and at first they said they didn't have the order, but lo and behold, after I insisted that they did, they found them!

So....got the chest x-ray, EKG, and bloodwork/urinalysis done. During the EKG, the tech said something about "fib" (I didn't lie, didn't fib, I swear!), and when I asked him to explain, he said, "Well, I'm seeing a 1st degree block, but that may be normal for you. The anesthesiologist will want to know, though." Arrrghhh.....now I'm hoping this isn't something that's going to prevent me from having the SCS implant. I do have a congenital form of cardiomyopathy, but it was discovered before any heart damage was done and is well-controlled with meds. For now, I'm choosing not to worry about it, leave it all in God's hands, and just keep putting one foot in front of the other. Oh, and the tech also told me that Dr. O'Sullivan has done LOTS of SCS implants and has a solid reputation as a surgeon. Good thing to know!

On a happier note, the tech who did the bloodwork was so excited about the possibilities that lie ahead for me regarding the pain block. Her husband has similar back issues, and she asked me to please let her know how this works out for me, gave me a big hug, and sent me on my way with a big smile on my face! I am "cautiously optimistic" as the politicians say. Hee hee hee! I do SO hope this works, so I can be less limited in my daily life! Thanks for the prayers, happy thoughts, funny magic lintballs, and all 'round loving support!

Hugs all 'round :grouphug:
Jan

Well, hey! Jan, it looks like they've really got the ball rolling!
I'm so glad to know that your surgeon has a good reputation with these implants and has done many. That's exactly what you want to hear!!

It's usually inevitable that paperwork gets mixed up and 'lost' in the mix....
That's why it's good to have copies of everything.

I'm excited for you! And it sounds like you have a great team of people looking out for you.
We'll surely be with you every step of the way, so thanks for the update!

Rae
:grouphug:

More update...
 

Thanks, Rae & Group! Yes, it is good to know that my surgeon has done a number of the implants. Yesterday I had an appt. with my regular doc and she had copy of the EKG report. I was a bit shocked when she told me that it showed that I'd had a previous heart attack! What the heck?? Not what I wanted to hear at all, but she also assured me that the EKG is mostly just a screening tool, and not always accurate. I'm scheduled to see a cardiologist on June 26th, and he will probably do an echo and a chemically induced stress test, since I can't do the traditional treadmill type because of the numbness in my feet and in-coordination due to nerve damage in my legs. Also, my bloodwork was a little off, with the white cell count being high--no idea what that's about! I just don't want anything to happen that will postpone or prohibit my SCS surgery. I also don't want any complications during that surgery, though, so guess I just have to be patient and pray that these things will get straightened out. I just keep telling myself that it's too early in the game to get discouraged or to start projecting a bunch of worry out into the future. Right now, NO surprises would be good! :p

Hugs all 'round :grouphug:
Jan