Questions for surgeon
 

Oh My Dear Wise Ones....
This Thursday I go to see the surgeon that implanted my SCS last March. First time I have actually seen my surgeon in 5 months.
It is to have an xray to compare with a xray at 3 weeks and get his evaluation of the SCS placement; To discuss my depression/isolation; pain management plan (I have so much pain from the SCS itself) ...what is involved in removal (what I really want)and to get a release to start up yoga and water aerobics. The SCS itself works very well..thank You God.

So I would like your wise input on questions for him.
Thanks y'all
Reaching (carefully) for surrender while I stand in the Light of God
Johanna*

The Awful Reality
 

Dear Johanna, I am so sorry this situation is and has been so very painful for you. Prayin all will be well as you march forward with it and that the Lord will lead you with assured pathways so you feel comfortable knowing all will be well.

Questions:

a. I have experienced such a great amount of pain from the unit itself being in place, and I have waited patiently for the scarring in which would bring about a lessening of surgical pain..... is the only hope a procedure to remove the unit?
b. What is a realistic end game understanding how I may feel if the unit is removed?
c. Are there dangers to me as the patient in the surgery to remove the unit and in the post surgery healing associates with its removal?
d. Would all of the hardware be removed? If no, what would remain, and how is that likely to impact my body?
e. Is it possible it is a matter of placement, and a revision might be beneficial?

There are surely more, but these come to mind immediately......
Prayers ang hugs,
Mark56:hug::grouphug:

Johanna...
 

I feel your anxiousness and concern regarding your upcoming appt. :hug:
It is good to be well-prepared for an important visit such as this.

Mark has given some excellent suggestions!
You mention that your SCS is causing you alot of pain. This is certainly a point of concern and you need answers. Have your list of Q's written down and be assertive in getting answers. I know alot of times the Dr's can tend to talk over our heads or rush us, so don't be timid about asking for clarity.
It's also good to have someone else with you for that second set of ears.

Regarding the depression/isolation you mention - this is very important, not to be ignored. Hopefully they will refer you to an excellent person whom you can talk to and get professional input.
I personally can relate to this, as I've battled it quite a bit, and I know many of us here understand as well. This is a great place to discuss these issues, as pain and depression go hand in hand. Please feel free to address this either here, or over at the depression forum, or if you'd rather be more private about it, please PM any of us. We're pretty open about it and we've done wonders for each other in lifting one another up.
We're all in this together and I'm ever so thankful to have this place to come to.

Please keep us updated on what your Dr has to say, especially about the pain from SCS....I'm concerned about this.

You've got my prayers, you can bet on that! :hug:

Rae
:grouphug:

Rae is SO RIGHT
 

The truth be known about working through and beyond the darkness of depression and isolation is the necessity of interpersonal relations... those who CARE sticking their noses in where they belong and keeping people like you and me honest, plodding along, engaged, and ultimately realizing temporary problems do not call for tragically permanent solutions. RAE is RIGHT. There. Hallelujah.
Yup,
Mark56:D:grouphug:

yup---reality!
 

Thank you Mark for sharing and praying,
This is my third round of depression in 3 years....I feel it slowly leaving; I recognize the trigger (family). The worste is early early morning when the veils are thin and my walls are weak; and the pain meds are depleted in my system...I just let myself cry thru that hour...so here I am today looking forward to a full moon on the beach tonight. This time change messes with me too!

How long have you had your SCS?
As written before...I know I tore my stitches by going back to work too soon...so I think I should have sufficient scaring...I hope that shows in the xray.
If the placement is wrong and they have to go in...then they are taking it out for sure...same if I should have any defects...if there is any reason to go in then this gizmo is coming out....it feels so alien...it pushes out like it wants to jump out.

If the SCS would settle into me...that I could live with...it does work although I rarely have the pain it was implanted for...how ironic is that??
The probabilty is that removing it would be way to harsh on my body for all of your above reasons. Also I cannot financially afford the surgery for at least a year at which time more scarring will make the surgery more difficult.

So as I write this perhaps it is the acceptance of that probablity that is really in my craw.

The doctor appointment has been re scheduled to Monday...
I have my list taped to the top of my medical file folder and it is growing.

Thanks again
Johanna*

I knew you would comment
 

Ahhh Rae,
thanks so for the concern...I think most of all I just needed to hear; read and feel it from the group...alone sucks ...and like you I am ever so grateful to have this place.
I am moving to the other side of depression and I will find a local group or something now that I am done wallowing....honoring every step of the journey. I would rather discuss it here as perhaps it could help someone else in it's grips.

Yeah...the pain is not good...I have been harping it all along. It is tho much better since I stopped working 12 weeks ago... no headaches so I do not think I have had a puncture. The battery and pocket are fine. It feels so big betweem my shoulder blades....an x ray is necessary.
Appointment rescheduled to Monday...I will keep you updated.
Thank you ever so much
Johanna*
I buzz along just fine and it works when I need it.

Hi Johanna
 

I have had mine since June 2010 and it has been a tremendous blessing. I do recognize our scenarios are different, way different as I definitely needed it for all of the time pain management AND it seems to have been placed well so I have had none of the post surgical issues with which you have grappled.

I pray your work to handle the depression will produce excellent results. Getting control of that monster is quite a path and requires a good deal of work. I am feeling thrilled for you the emergence into the light is Right There for you. What a blessing!

May God bless, keep and restore you,
Prayin,
Mark56:hug::grouphug:

yup
 

Working my way out of it...hooray!!!
Blessed indeed!!!

A certain amount of depression seems to be part of the pain package. It is for many, anyhow. I accepted that quite a while ago and am at peace with it. A lot of the biofeedback/self hypnosis techniques I use to bring down pain levels, if I catch them in time, I can use to bring down the depression......if I catch it in time. If I experience a trigger that always elevates the pain or depression, I immediately begin breathing exercises and visualization. I found a vision that works well for me. I used to do a lot of primal screaming before I started using visualization. It did help me, followed by a good cry before I learned self hypnosis. I sure can't do the screaming now as I live in a senior/handicapped building. Many of my neighbors are at the end of their trail and I'd hate to scare one to death. Bad joke. Keep looking for your answers. They are out there. Hugz and prayers. :hug:

Hey! I'm glad you mentioned this regarding your pain levels being better since you stopped working. I'm wondering if I will notice a difference once my job fades away (within a few months I think)

I'm at work right now as a matter of fact :o sitting at my desk.....
my spasms are outta control and I think I'll call it a day.
Oh how I long for the day when spasms will be NO MORE!

Rae
:grouphug:

sitting
 

yikes ...sitting would have finished me off...I was aat least able to walk around....it is so delicious to sleep in!!

Jo

Yeah, with me, I can't even stand up for more than 5-10 minutes. Trying to cook for my family can sure bring on the tears sometimes. It's sooooooo frustrating!! :mad:

feeling the 'buzz' when the SCS is OFF
 

I have an odd sensation at times...like a shadow of stimulation...a short'mild buzz of the SCS when it is off. Now I thought that it was just a phantom thing or a nerve memory then the othernight I woke up choking cuz I have this cold and my nose was way clogged..my mouth dry and I cough so hard to clear my throat that I felt a shock wave go thru me---all on the lines that I feel my buzzing...especially feeling it in my knees for more than a few seconds.

Now I know already i am one wierd chick (yes even before the SCS)..is there anyone who has had this experience too?

Also I now have insurance...BC/BS has a policy that get me into an office at the BCBS acceptable amounts...and just as devine intervention would have it...the doctor cancelled till Monday and now I have the insurance to offset the cost.

Must be all this "Prayer in the Air" making miracles.

Johanna

Wonder of Wonder Miracle of Miracles
 

Noticing Blessings and Miracles around us is indeed a wonder of wonders! So VERY glad you have insurance! Yea Johanna!!!

My surgeon has sworn there is within some patients a latent continuity of effect which can show us the Buzz after the unit is switched off. As with me, I have NOT noticed the effect. I am more of a light switch phenom.... light on.... light off, so when my unit is powered low or OFF, I arrive at a point where the Pain with a big capital P is right there. Thus I use my stim 24/7.

Now as to that effect of a doubling or tripling or MORE of effect with change of position or lying down, absolutely,,,, this is an occurrence with me. Happens every time.

Prayin all will be WELL,
Mark56:hug::grouphug:

morning
 

Morning Mark,
Well then you can confirm for your doc...it happens to me and makes sense to me too as the leads are conductors.

I also know what you mean about those "bursts" I have the adaptive stim and before they had it programed in I had those bursts of movement. ..Once the adaptive program was in place...the unit stops while you lay down and then slowly starts up again to the rythm that it is set for that position.
mine does stop when I go thru electronic opening doors and takes a good five minutes to restart. Enough so I try to turn it off before I go in stores tho like most of us...it is just part of my daily sensations if I am using it.

Indeed miracles abound
Johanna*

Morning guys
 

Johanna I do remember my doc saying that some people feel the stimulation for awhile after it has been turned off. Wonder is that what you are feeling?

I don't turn my stim off at all its always on. I turn it down low at night when I try to sleep but to turn it off altogether wouldn't be an option as I can constantly feel burning and pain, yes even with stim on!!!!! So I turn it up quite high hence use a lot of juice:eek:

Delighted about your insurance too :)

Jackie :hug:

the best news
 

Dear Friends,
I saw the surgeon yesterday...4 x-rays...read outs on the SCS from the rep.
Every thing is in perfect place and funtioning, Scared in just fine. Battery and pocket look/feel great...I wasreminded how to tweak the unit for one of it's settings and my meds were written without any question. All were happy to see my progress and the doc asked that I give it a full year before we talk removal.
My unit is theMedtronic Adaptive Stim...my surgeon says the Medtronics are giving him the best results. The rep wants me to send along the link for this site.
There is also a webinar on the Metronics site...you have to dig a bit to find it---scheduled for the 29th Nov and sign up forit. Any education about my gizmo is appreciated.
So I have decided to make gizmo my friend.
Oh and get this...as I am checking out and oh so stressed about themoney of all this...they just said ..we will bill the insurance then bill you! I knowI have to pay...I just love God's humor...Miracles are supposed to happen everyday!!
Thank You God!
Going out for my walk cuz I have no excuses anymore.

yes, and there's even a word for it..... 'paresthesia' or something like that?

So glad things are going your way and that the insurance is on your side!!

You should consider NAMING your gizmo!! Lots of us have! :D

Rae
:grouphug:

wonderful
 

Thanks Rae,
Now I have a "word" for it I will pass that along to the rep also...really nice guy...just he looked at me like I had overdosed on my meds when I mentioned what I feel.

I have been thinking about a name...I have hated "gizmo" for so long that nothing polite comes to mind yet.

L&L
Johanna*

Yup
 

The group named mine PJ for Praise Jesus since I write pretty openly there. Then Rae actually named a foal after it..... pretty cool!

Mark56 and PJ:)

Oh and Parasthesia
 

It is a pretty cool concept, and is the effect induced by the use of the unit. Thus we experience parasthesia in use of the SCS, while its lingering effect is kinda sorta not so much for me. I turn off the unit and BURN. Not spontaneous compustion, but the burn of nerve pain. It has never had a lingering effect for me, thus, I use it all of the time.

Prayin,
Mark56:)