If you were going for your first SCS trial now .. (for those of you who have them)
 

.. or HAVE had them ...

What questions would you ask?

I ask this myself, as on 5th May I go for my pre op assessment, and they will answer any questions there. So, what is it you wish you had asked? And what is it you wish you had known about?

Thank you!

My List of Questions
 

Hi Saffy-

Here was my list of questions-

How soon can we get the trial scheduled?

You mentioned the trial would be an out-patient procedure. Is it performed at the NoName surgical center and do you insert the leads?

I spoke with one of the ANS patient ambassadors, and she described the original plan had been to leave the trial leads inserted for one day but that she elected to leave them in for five days to give the trial a thorough go. Do you allow the leads to be left in for five days, and if you recommend otherwise, what is your recommendation?

If the trial is successful, how long must we await the ultimate procedure for the implant?

I was told that post surgically, the patient should significantly limit their movement because the leads are at risk of loosening. Is this true?

Would the implant, if done, be of the EON transdermally rechargeable unit?

Reading and viewing the material, we understand the current technology is specified with a hope for a life up to ten years. Since the battery life issue is technology which seems to have been taken from the longstanding cardiac pacemaker technology, is it known how long the battery life is expected by existing evidence, or is it more a hope?

The patient ambassador spoke of recovery, beyond incissional pain, as a process which was several weeks in duration as opposed to the many month recovery she endured in laminectomy. She said the most common need is to recognize the need to wait out the formation of scar tissue to hold the leads secure. Is scar tissue the real security in holding the leads fast?

Viewing the materials and video, we learned the leads/paddles are secured to the spinal cord and that there is risk of paralysis, can you speak to the manner in which the leads are secured and to what tissue? Can you speak to the risks of paralysis the fine print on the video pointed out?

The materials show a variety of leads which are part of the product for implant. Are all of the leads/paddles used so it is a once in a lifetime implant, or are the leads only inserted in my case in the lumbar spine?

I understand the unit may be used as long throughout a day as the patient dictates in conjunction with the doctor and ANS, is the use a 24/7 proposition, or would I be limited in use as I am supposed to be with the interferential neuro stimulator? I currently use it from 3 to 6 hours per day.


There you have them,
Mark56:hug:ZZZ

Right .. Mark is the only one who has replied on here .. but I bet you all have those .. "Gosh, I wish I'd known that now" queries ...

How did you all manage those first weeks of inactivity? This operation is costing the National Health Service and I don't want to let people down by doing something silly in the first few weeks.

The first weeks
 

Hi Saffy, and thank you for jogging us to reply with what about afterwards questions! As I have written in my thread, and it has been a chronology of teh path from surgery through healing to arising again, albeit with struggles. I had to treat myself as having just had serious back surgery on 30 June 2010and take very close care about BLAST-no bending, lifting, stretching, twisting. I was PERSONALLY reminded of the need to "log roll" myself from bed afterward; namely, laying as a log near the edge of the bed, drawing my knees up carefully toward what would be a seating position so they might drop over the side of the bed and using my arms to lever up into a seated position at the side of the bed.

The logroll was learned after having had multiple fusion surgeries. Clearly in a post surgical environment with laminectomy/discectomy/fusion my back had been horrifically invaded. Mere movement made me fear that I could "tear my body in half" or the pain felt that severe at any rate. So the logroll was the method taught to arise from bed.

Once standing movements were taken tentatively and cautiously, until I could shuffle myself to the bathroom. A temporary 10 inch [don't know the metrics, sorry] lift of the toilet seat made it easier to lower myself painfully to take care of necessaries. Standing from that position was quite painful but doable slowly.

Having read these words, do understand that I did not have as severe the pain picture as with fusion when SCS was implanted. The pain was more manageable, STILL very apparent for at least two weeks following surgery. I practiced BLAST constantly and to this day am careful in that regard. For you, ESPECIALLY beware of temptation to reach above your head to Stretch for anything at all for the first months following surgery. The wires, leads, paddles, and the connections to your stim unit are going to scar in securely over time. Stretching to reach will render you susceptible to movement of the hardware installed. So word to the wise. Do not do it until allowed by doc. Then remember our own KZLRogue at the year anniversary of surgery was allowed to play golf-- a sport which involves stretching to swing the clubs. Keep your eyes fixed on the future as you heal. Carefully approach life during the healing. Do not drive Tootle until doc says "Sure Saffy, give it a go!"

So, for first weeks following surgery, do be careful with yourself. If you have someone to look in on you or be alongside during the first couple of weeks, you will be blessed with the means to attend to things difficult at first. Also, you may defer to them for the items you cannot reach. If you do not have such aid, then before surgery move items currently requiring your reach to retrieve to a lower shelf or countertop so you can grasp them. If your clothing requires stretching or reaching to put on, then think instead in terms of loose fitting items which do not require stretching or reaching to put on.... besides which, you will have an incision somewhere on your upper back I imagine for the leads/paddles which will be ultra sensitive to certain undergarments anyway.

Rae has suggested before that people look before surgery into acquiring a reaching tool, essentially a short small pole with a sqeeze grip for your hand and a manipulative claw on the other end by which you may conceivably reach items without STRETCHING yourself. Look into one for yourself.

Allow others to drive you around [your hubby, your daughter] until the doc allows you to drive. Tootle will be just fine without being driven BY YOU for a little while.... instead enjoy being a passenger.

Since washing your hair may involve bending, if possible get assistance doing this over your kitchen sink. Your hubby could do this and it helps with that bond for him to serve you. Just avoid bending the trunk of your body as you bow your head over the sink, and consider flexing your knees to lower yourself to the sink during a hair wash.

Allow yourself to rest, to walk as doc prescribes, to read or watch the telly a little. Heal. Be mindful that healing brings with it ultimate freedom.

Prayin,
Mark56:hug::hug:zzz

Hey there Saffy :)
 

VERY good question!
Mark is SO helpful! What would we do without our Mark! :hug:

One thing that I regret is ..... not getting clarity in what type of follow up plan would be available. I think several folks feel as tho - once the Dr gets paid, then it seems like it gets more and more difficult to receive follow up care, as in - checking for lead migration if something may not seem 'right'....
.....tweek sessions, etc.
I feel a bit 'betrayed' by my doctor to be honest. I just wish I would have known to ask him how he handles follow thru care.
.....i think I already know how he'd answer that tho.....he's very arrogant :rolleyes:....:mad:....I'm sure his answer would have been something like "Well, Rae, you won't NEED any follow thru care from ME because I'm just so gooooood at what I do"......
And, God forbid, if something does happen to go 'wrong'.....then off to the psyche Dr it is! :mad: because he sure as heck doesn't want his 'masterpiece' reputation to be tainted.....so yeah, it must be in my HEAD.
I wish they wouldn't even get PAID until 2 or 3 months after the procedure has been done.

Not all Dr's carry this amount of arrogance, so please don't be frightened by my 'issues'....
I actually DO like the SCS.....
I just wish I had a different Dr, that's all.

I'm sure you will be very pleased with what the stimulator will do for you....and you have done a fantastic job of researching and getting input.
You are on the ball, my friend!

Rae
:hug::grouphug::hug: