New and just found the right forum
 

Hi, I'm new. 59 years old, back pain all my life but I ignored it. After all, doesn't every one have back pain?

5 years ago the pain started getting bad. Doctor finally sent me to a pain specialist. MRI showed it all. Scoliosis, degenerative facet joints, disk, stenosis which was bad enough that I required a lumpectomy to return strength to my right leg.

My pain management Dr says if pain threshold weren't so high, I would have been in earlier. I don't know about that but my teeth can't take anymore.

After PT, shots, Tramadol (the others make me sick), and radio frequency we decided to try SCS. I'm having my trial run starting 01/30/2012. I'm excited, fearful, hopeful and everything else many of you may have been.

I don't have a dramatic story, I just got arthritis and older. I tease my wife and tell her I have higgs boson desease. (gravity, sort of)

I would like to hear about experiences with SCS and Boston scientific. It's my pain management DR's brand of choice. Who am I to argue? I don't know squat.

Hi Paul
 

Welcome to Neuro Talk. You did find a good site. There will be others around in time to help answer and talk to you about their experiences with the SCS device. I really am hoping this works for you. I had to smile at the metion of the higgs boson. I like physics, and know they are looking for that particuar particle. I got old too, and have degenerative joint disease etc. Had fusion C3-7. Not too much fun. I did find this site however, and I found a great deal of information, compassion and support. I was in a very panicked state at the time I discovered NT. The people I met here have helped me through some pretty tough things. Hope you meet some new friends, and get some good responces. take care, ginnie

Welcome Paul!
 

Sounds like we're all having a great time with aging :eek: .... just a barrell of monkeys ain't it! :D

It's great to have you Paul! I read your post in the upper section of the forum also. I like what you said about positive input. Like you said, successful recipients usually have no need for pain forums, so most discussion is on the downside. The good thing about this forum is that there are several folks here who are very happy with their units. We've all come here for the same reason you have......a bit nervous about the upcoming implant, wanting to know more about them, etc.
Alot of times we are here to get support while we are getting an adjustment due to lead migration, etc...

Mark56 will be along shortly and he'll give you lots of good input regarding his very successful Boston Sci.

I sure hope your trial will prove to be a success so you can get a better quality of life going! Please stick around so we can see how this goes for you! Meanwhile feel free to ask anything and everything. As you read thru the posts you'll get a good idea of what to expect.

Glad you're here!

Rae
:grouphug:

Hi Paul
 

Hi Paul, I just wanted you to know that I have heard more good things about the SCS trial and implant than bad stuff. I have been here I think about 18 months now, and I travel around the boards. Hope your pain level is down today. I do wish you all the best with your SCS trial. I had wanted to do that too, but my condition warrented a surgery.. take care Paul, ginnie

Hi Paul!
 

Sorry you have a reason to be here, but since you do, we're happy to have you. I saw that you ventured into my thread--my trial was for a Boston Scientific, and in addition to my astounding discovery, I found that it did cover my pain for a bit.

(physics humor--cripes, this place is getting nerdier by the minute):rolleyes:

Hi Joan
 

Hi Joan, I actually am not a nerd, but I love physics. I have been reading books on it now for several years. Never learned squat in college, so in my 60's took an interest. I know its funny to start some suject so far out there litterally! Time stood still, is the latest. Its OK to laugh at the nerdy stuff. ginnie

So PAUL!!!
 

Wull..... it goes like this. If your quarks are all lined properly so a higgs bosun can way impact them you might just qualify.... BUT, you must realize the first question on every psych eval is about higgs bosun, so if'n you haven't a clue, they don't want you....NOT.

The whole kit and kaboodle is just way COOL, and given the thoughts expressed on this brand new thread of yours, I reckon I should bid you all a fond farewell, because of the fantastic success I have known through the great benefit of wielding one of the most successful Boston Scientific implants known...... funny thing is these Queeks at Boston Scientif have not looked me up or spoken one single word regarding the "what makes Mark so different?" query. Spooky it is. If I were to experience such a patient phenom as an executive, and I have been a high executive in a company which was pretty darn interested in revenue, revenue, revenue..... so much for the "don't give a hoot" Boston Sci crew.

So think not of them for a moment... instead the MOST important factor in my case, the single reason I believe I am fully withdrawn from all pain meds is because I was allowed to drive the computer programming my implant two weeks after the surgery!!!! I kid you NOT. I am certain of this since I have had no "tweaking program sessions" and never have complained to the doc the doggone device needed revision. Oh, and I have never asked to be re-issued pain meds. Don't want them, don't need them, no how.

So, if you have to wrestle your rep to the floor [I only kidded my rep about putting him in a headlock if he would not let me], then I believe what you want is a hands on experience dialing yourself in.

Oh, and there is this way cool thing about Ginnie, who is humble as can be, she prays and prays and prays for all who are on here. She is devoted to faith and the folks who populate this place. Rae, the same PLUS a sens of humor which will not quit! Then there is my great friend Joan, whom I would contact in a heartbeat if I needed to know something about a computer besides the on-off switch.

Truly, all of the people here in this special place CARE about YOU and the story you bring, the promise of help you are being provided, and the opportunity within your grasp to gain management over your pain. The device is NOT a cure. It is a management device, like a rheostat for a light dimmer and such. I feel the sensation of the stim where my legs still have sensation, and the burning h e l l I had known everyday since injury is managed. I am still plagued bodily by the masked pain, for it produces fatigue, a factor I did not realize until I had resumed my profession AND WHAT A THRILL IT WAS TO RESUME CARING FOR CLIENTS!! You bet!

Now, as for me, I would not be here but for God, and I thank God for the blessings every day,
Praying for you also,
Mark56:grouphug:

Therapy Dog!!
 

We GOTTA Pray you through this Paul so theradog can get back on the trail!!!!


1, 2, 3,.... PRAY!!!

You see, Paul, I was so similar to you in the withdrawal from the world because pain became my prison, our bed, my cell, the bedroom, as far as I ventured...... lost in a fog of medications after 27 surgeries to reassemble me following a bad car wreck on I-70. I wondered.... is this all? Am I dead to the world? Then doc suggested I consider SCS.

I feared it at first... more cutting.... more pain, and for what? Being a lawyer, I had read the fine print. It is a natural. I am good at that. Oh, what with the possibility of paralysis and such.... did I want to proceed?

Well, my wife and I viewed the video. We prayed. We researched online and I spoke with patient reps from St Judes [that is another story altogether]. Finally, it seemed the Trial would be worth it.... after all, I had not feared a trial before[ bad, bad pun].

The Trial cinched the deal! I was still on pain management meds, had never taken enough to completely control pain because it seemed I would thus be rendered perpetually unconscious. So here I am on, I think, day three of the trial... my precious wife asks me "how do you feel?" I get this funny look on my face, I try to speak but cannot because tears began to flood. Once I was back under control, I told her the tears were from joy, because I could not discern pain..... at all!!!!!! I kid you not.

Being thus sold, I went for the permanent implant, but worked out the deal with my Boston Scientific rep [part of that very long story] that I would be allowed to program myself. Frankly, THAT was the very best medical decision in my life..... programming the silly Boston Scientific Precision Plus SCS. My rep put me at the controls, watched over my shoulder and I carefully proceeded to do things which caused pain [nope, not that one] zero in on possibilities, then at last Four programs were set in my device providing variety stim so I could cycle through them if one became less effective due to over use.

GOD gave me a great gift that day, and it was the release from pain as I had known its constant presence since the wreck, so I withdrew from ALL pain management meds [also part of the very long story] and now I am mentally clear, emotionally in touch, pain is managed MOST of the time by the stim, and when it spikes, I turn it up..... quite a bit. I have never had a tweak or a revision surgery. Surgeries 28 and 29 were Trial and permanent implant.

No, I did not regain feeling in that part of the legs too far gone with permanent nerve damage, so I alternate between a cane and a wheelchair. Mostly cane. But you know what? I was able to commence a new ministry, you are now part of it. You see, I am a success story in the making and I write here to help others, also, I visit elderly and ill folk to let them know someone outside CARES DEEPLY for them. Tomorrow morning after early Bible study, I get to visit my friend Ray, 92 years young and a retired math prof from the School of Mines. What a treat. I don't know whether he blesses me more than I do him. He is a gem.

Being conscious what it is to lose all of our family accumulated wealth, and there was a lot of it....... I now am much more sensitive to the needs of folks especially in this time who cannot pay, so I do pro bono work to help with employment matters, real estate matters, corporate matters, and the ones which tear your heart in your chest..... the powers of attorney or will for one who lays dying in a cancer center of a hospital. God has given me so much, it is vital His gifts be passed on to others. I just love being helpful, even if it is as an elder in our faith who is blessing someone just about to meet God face to face.

We all here are a testament to the power of prayer for one another. Folks continually come back and even post on the blessings thread, like Eva, whose life story is the Bible personified in life lived well by one who has been tortured at the hands of others.

The reson for this long post Paul is to encourage you to remember your therapy dog is needed among those whom you will visit once God has seen to your implant in a good way. There is so much to Matthew 28. VOLUMES. This is why I altered the manner in which I greet anyone in my walk of life who asks how I am... my response "I feel blessed, how are you?"

Go into all of the world,
Knowing we are praying for you,
May your Trial be blessed,
And may you feel so released, you are back with your dog once again, sharing kindness, love, charity, hope, a touch of a helping hand,
You, my friend are called,
Now may you be healed,
Prayin for ya,
Mark56:grouphug:

Wow! Thanks to all of you! Fortunately my pain management doctor is very aggressive. The surgeon who did the 'make a hole' surgery also tells me additional surgery would do no good.

The SCS offers me a way to continue a quality of life where, like you Mark, I can to continue to participate. Funny how those of us who have known pain are more aware of pain in the people around us.

I have told people in nursing homes that my dog absorbed pain. She does. All my dogs have had this ability. It is so weird. That, I have to share. If you are lucky enough to be able to train and keep a dog, it does help. Right now
I could not train a new one. Also, if the dog is in pain, the petting helps them even faster.

I read a lot about pain before I got here myself because of the therapy dog work. Emotional pain seems more damaging than the physical. Of course the physical does add to the emotional as well as the fear of living life alone. The isolation would be unbearable. I see that everyone here insist on living life as well as possible. I am in the right place. I do need prayer, not so much for pain relief as much as emotional support. Faith, hope, and love. The greatest of these is love.

For those who didn't get the joke, the higgs boson is supposedly the particle that causes everything to have mass, that causes gravity, which, well, gravity wins every time. Ugg!

Hi Mark
 

I am glad to hear that you are able to control your own device the SCS. I am learning that this can be a life saver for those in critical pain. I always thought you had to go back in for adjustments. I think when we have more control over our situation the better it is. I like to have my own input listened to also. My doctos do listen and that helps. I head for surgery once again the end of this month or the beginning of Feb. Can't stay out of the OK. I will be back to the site of course as this time grows near. I get nervous before any of these hospital trips. I pray for others, better than I pray for myself these days. I best do a better job of that.
Sometimes I do not know how to reach out to people in severe crisis. This has had an effect on me too, I know my own troubles are so much less, in the face of what some people have to go through and live with.
there are several patients, that are due to recieve their trials in the coming weeks. I do indeed pray that it works for them. I had gone in for one too, but I was not a canadate and I was not sure at the time why. I found out it is only for those, where surgery and pains meds are not enough.
Please take care of yourself too Mark. I have gotten to the point that I have a list of souls in a Noahs Ark Tin on my desk here. If I forget names, I litterly pull them out of the tin. This tin has many names now. I should be in prayer all day long like the Nuns do. There is certainly that many that would require an all day effort. I will have to find a better way to be organized. Maybe God does not care so much for organization, just so you do pray.
These people here, and their medical conditions have made me much more awhere of the suffering of others. I think when we develope our own issues the focus is on ourselves. Coming here changes the focus dramatically.
I consider you my brother, and my sisters are here too. Have a good day Mark. I am glad you do not have to take pain meds anymore. ginnie

Hi Paul
 

You are sure right about pain. If you experience it, the pain of others makes you more awhere. I will keep you in my prayers too. I hope the SCS does a good for you as it did for mark.
I am a psysics (not geek actually) reader. I took an interest about 6 years ago and now read all I can about it. They really have not found the Higgs bosum yet have they? I know at the Collider they are trying to find it. I read last night about virtual particals, which compose the 70% of empty space and the energy they may account for. The whole thing is way over my head, but I just keep re-reading until something sticks. I am lost on the geometry of space, but can follow along somewhat with diagrams. When I was small, I thought our own galaxy was all there was. I am blown away, to know space is as big as it is! If this is geeky indeed, well I am in good company. It really is some cool stuff to read about.
Take care Paul. Good luck with you SCS. ginnie

Hi Ginnie, I've been keeping up with that stuff out of curiosity. I'm a systems analyst for accounting systems. The last I read is the probability is good but not enough evidence to say with certainty.

Hi Paul
 

It seems your mind is geared for science. Heck I flunked geometry in HS. and avoided science like the plague in college. Now I find myself drawn into these areas that amaze me so I keep on reading. One thing cool I read is that for a nano second, time stood still. They spit red and blue light frequencies with lazor, and inbeween that split, time did indeed stand still. I thought that was something else, more like the spooky science to me. Keep in touch with what you read, I sure am interested. ginnie

Here's a fine example!
 

Just today, a visitor to the forum stopped by and posted his success story in the upper section of this forum (where Paul first posted) Here it is:
http://neurotalk.psychcentral.com/post842815-29.html

I just LOVE it when someone takes the time to share like that!....especially for those who are convinced the SCS is nothing but bad news....yes these people do exist. :rolleyes:

btw, thanks for explaining the higgs boson :o I layed awake all last night wondering what the heck that was ......yes, I'm slow :paperbag: ....a complete simpleton am i. Please pass the salt...

Rae
:icecream:

Awww
 

IF only Chupachickie had posted HERE!!!!! What a WONDERFUL account. I will lay dollars to donuts if Chupa had been allowed to run the program session there would not even have been the tweak session. I would bet anyone on that...... golly, how do we get reps like MrsD has shown us and like Ger experienced to help people make success like Chupa a part of their lives and their patients' lives.

What a great post! Thanks Rae for bringing it here!!

a grateful,
Mark56

I got the call from Pain Management today. I'm to be there at 11:15am next Monday. Installation of the 'trial' SCS will be for 7 days. I worry about 7 days without a shower. Can't bend, can't lift, can't strain, can't poop, can't whatever.
How do I keep from stinking? I would like to go to work during the trial but my coworkers may kick me out. How can it be a true tiral if I don't go to work?

It gets even more challanging. My wife was diagnosed with breast cancer at mercefully an early stage. It is also the least fatal type. She will be getting outpatient surgery also. We don't know how the timing is going to work out but this could get like a Keystone Cop movie. Her surgery is not schduled yet. She still has a couple of test yet to come. She will probably keep her breast and just lose a chunk. I honestly don't care if she does or not, I just want her to be OK. This is another of those things that require patience. I never asked God for patience. Six weeks of daily radiation treatment will be the big bother. After that we hope all is over for her.

We will probably pre-cook a few meals if we need to. We just don't know yet. We also have friends and relatives we can call in. All this not knowing is an experience we all know well I would guess.

Nobody will spend a night in a hospital and that makes us both down right giddy.

The surgeon we picked for her is a fiery red headed woman who communicates very well. Amazingly well. She was fantastic! Almost as good as my pain Doc!
Y'all pray. I really need for this trial to work.

What? Spell check doesn't work. Please forgive any miss spellings.:confused:

RE: good doctors Paul
 

It sounds like you both have fantastic doctors.! I hope it goes well for both of you. I do have a solution to the batheing issue. At Walgreens there are adult wash cloths that are for this type of situation. They are large and have a cleaning solution on them that cleans and smells good. Air dry in a second. I have used these before, and they do just fine for that week. I was also glad you have some friends willing to lend a hand. I wish you both all the best for your surgeries. You will be in my prayers. Ginnie

Ah yes, the cleanliness....
 

Hi Paul! How to keep clean is usually one of the top concerns when getting a trial. There are lots of ways to manage it, believe it or not! We'll flood you with our ideas :D

I'm so very sorry to hear about your wife. This is a very trying time for both of you and I can see you have a strong bond with each other. I know you will make it thru this spell, plus you'll come out the other end having better quality of life!.

You can sure bet you both will be in my prayers.
Yep, lots of prayers going out....

:hug: Rae :hug:

What I did to keep clean for that week: I gave myself sponge baths and had someone help me for those hard to reach areas. For my hair, I went to a local hair salon, told them I couldn't shower for medical reasons, and they washed and dried my hair for me, no questions asked.

I would do what you normally do during your week (just don't try anything new or overdo what you normally do), because how are you going to know for sure that this is what is going to help your pain if you don't test it out properly? My dr. told me to live the week as I would normally just without driving (the moving of the leads can be a little bit of a jolt and they're concerned you'll jerk the wheel and run that big rig off the road).

Sorry to hear you're both dealing with such serious things at the same time. The blessing is that you have friends and family who can help out! Don't be afraid to ask their help. Maybe you could set up a meal schedule ahead of time and let them know what meals/days/times they need to bring you sustenance so they can also plan ahead. And preparing food and freezing it ahead of time is good idea also.

Good luck to both of you and you're in my prayers:smileypray::smileypray:

Almost forgot the one thing I get on my soap box about everytime someone is going to have a trial: once the leads are removed at the end of the trial you MAY experience increased pain for a while so have pain meds. at the ready. Not sure why this is...if it's because you've enjoyed the reduction of pain or if it's cause the nerves were messed with...probably a combination of both.

Enough said...I'll go now...:rolleyes:

Re: Shampoo
 

There is also a shampoo that is put on in liquid form, and you just dry your hair. It is good stuff, for got the name, but it works great. ginnie

Prayers for you BOTH Paul!!
 

I will certainly join in on the praying as you will have so much to deal with at once. Goodness, with Eva recently having to deal with cancer before her pain surgery and now your family is afflicted with both by hitting you and your wife!!! So glad you are blessed with family and friends who can help with the meals and the driving during this time, AND you both feel you have been led to the docs from Heaven. You have to remember BLASTS, I had to add an S you know, No Bending, No Lifting, No Stretching, No Twisting, but Squatting is OK. Now, bringing up the rear end..... well, you did mention it.... one of our sons is in the Army and when field work comes into the picture, he loads up his pack with field rations [NOT MRE's] and he says they clog him up for a good week, they are full of protein and vitamins and such, and it helps avoid the John Kerryitis style of injury. So, I reckon if they work for him, and if you have an Army post somewhere nearby, maybe a friend can get some for you. Anyway, then you wouldn't haveta fret about that one. But, to tell you the truth, it was not a problem for me during the Trial. I did not drive, and we went out and about.

There Ya Go,
Praying,
MARK56:grouphug:

After the temporary stem is installed.
 

Now I'm thinking.

Put everything I might need at chest to waist height.

Make sure frozen dinners are available. I will try to cook, this is a test.

Check with doctor about the return of a very angry pain monster.

I will drive with stem turned off. I understand that is the way it will always work.

Get cat bath stuff. Make a visit to hair place for a cleaning and a hair cut since I'm there.

Take someone with me to the park when I walk around the lake. This is a major goal. This is a previously stated goal and test! I will have dog with me. I'm doing squats as a part of exercise. Must remember to continue after implant. Stretching will stop I think. Oddly, I can still bend over and put knuckles on the floor, never mind finger tips.

If that works, me and dog will make our library visit. This is a test so I have to at least try.

I still have to keep my wife (and myself) calm about her immanent surgery. All freaking out will have to be internal. I'll admit, it usually is anyway.

Within a couple of weeks, with Gods' help, maybe there will be a light at the end of the tunnel.

If this doesn't work I'll head over to the mental part of Neuro Talk.

how do you post a question on this website? and good luck on your recovery

Welcome to NeuroTalk:

Go the the first page of SCS & Pain pumps:
http://neurotalk.psychcentral.com/forum118.html

On the left at the top is a button...."new thread". Click that
and a box will come up for you to type in what you need to ask.

They got that for people too? Is it made by Hartz Mountain? :p

I joke, but I should look for it; there are times when I can shower, but bending the neck/head over to do what's left of my hair... Some days I have to take 2 showers with a 2 hr. break between.

Doc

:ROTFLMAO: Yes!

Oooh, I LIKE this guy! :D

Best of Luck & Results for you ALL!

Doc

Hi Paul
 

You are doing so very well in getting ready. For both of you to have issues, is most difficult. I will be praying for both of you. don't keep it all tucked inside, we all need a realease valve somewhere. It is alot to handle. Be good to the both of you. ginnie

Doin great Paul!
 

I certainly agree with Ginnie in regard to internalizing the stress.....DAWN'T DOIT. That's what we are here for :Clever:......yes, I'm preachin to ya. And don't feel like you can't talk about things that aren't scs related. Yes, we're a group of folks who have scs's, or are in the process of getting one, but we're all human beings as well. We vent. If you've read thru Mark's thread you'll see how he is posting it in journal form, including the ups and downs of what he experiences, all the while having such high regard of appreciation to his Boston Scientific SCS.

btw, if you do get hit with anxiety/depression, those forums are really great. I visit them from time to time. Since you and your wife are both going thru a rough time, sometimes it's good to share with each other in your feelings, fears, etc....rather than 'hide' them, but who am I to talk :rolleyes: like I'm a marriage counselor.

You're certainly on top of everything Paul. You should go in to this thing feeling pretty confident and expecting a great outcome!

:hug: Rae :hug:

Hey Paul!!
 

Look, you are approaching the full complexity of this the best way you can. So much going on, and YES INDEED, if you get slammed in the whirlpool of anxiety and depression THROW OUT THAT LIFELINE. I kid you not. There was such a dismal valley through which I passed, it is just sometimes that darkness which waits to swallow the unprepared.

Visit those areas now. Read what some have experienced, and have OPEN COMMUNICATION WITH YOUR WIFE ALL OF THE WAY!! If I had not, I could have gone down the drain........

Keep faith strong... count on God. The means through which I survived the valley of the shadow of death.

Saved from me,
Mark56:grouphug:

Almost!
 

Insurance approved the 'test' yesterday. I was a little worried about that.

I go in Monday the 30th at 11:00am. Out patient surgery. I have talked to the Boston Sci rep three times now.

They want me to have three goals for my test run.

1. Walk a mile which is impossible right now. This is two times around the local lake or 1.2 miles or 2 kilometers.
2. Wash dishes, sweep and mop a room but without bending.

3. Bake bread from scratch and without the bread machine. I want to be able to kneed the dough!

4. I may add to or replace the above. Maybe get out my horn after 5 years and give it a go? It's a tuba, small but heavy. I would have to have it already set up and ready to go before surgery. I have a way of putting it in my lap that is almost effortless. I just can't carry it very far, maybe 10 feet (about 3 meters ).

There has to be something else but I'm stymied right now. Ideas?

I am stressed but my wife and I are handling things pretty well. I have the assignment of reading all the cancer stuff this weekend and then explaining it to her. She doesn't want to look up the words. I'm just going to use my Kindle or the PC.

Between oncologist and surgeons we've been given a lot of stuff to read. I wish I had taken Latin in high school instead of Spanish. The German I learned in the Army is no help either. Live and learn.

:eek:

Congrats on getting your date Paul!
I like your goals! ....... bee careful with that tuba! .....yes I am nagging!

I'm glad they are encouraging you to have goals set. The first day or two you'll be very tender and it takes awhile to get used to all that tape they stick all over your back.....and it's pretty much guaranteed that no matter how careful you are, you'll probably snag your wires on something :rolleyes:. To avoid an unthinkably bad experience, I made sure to add more tape in a second location on the wires. So, in case they do get yanked, there would be backup resistance. ....yes I was born a genious.

I hope and pray that peace will come upon you and your wife as these dates get nearer. Try to picture all the things you'd like to do if you were able to get better pain control with the SCS. Picture the things you'd like to do with your wife once all this passes......this might keep the stress away....

Caring Lots,
Rae
:grouphug:

Good luck Paul
 

I hope all goes well for you Paul and that you get the help and improvement you so truly deserve.

Take care and keep us updated too. :)

Jackie :)

Go for IT Paul!
 

Much of English and Spanish are Latin based, you can get the gist after you have encountered several. Hey, and THANK YOU for your service in the Army! Our youngest son serves, Fort Bragg, just made Sgt. He and his wife are happily working on our grandchild, a joy to come in May.

Back to you and your wife. Your goals seem realistic, and getting the feel while using the Trial Stim is the super goal of the week. Use the remote. Select differing things and use the up and down arrows to gain a feel for the variance of intensity within each program. Stay away from hay bales. {inside grimace]

Yes, Rae is a genius, and she offers up tremendous advice, so listen to her when she writes as her words leap off of the page.

Next area to tackle, since both Heather and I are the only two known to program our permanent implants, both Boston Scientific, start the dialogue immediately regarding your desire to be personally involved when it comes time to program the permanent implant if your Trial is a wondrous success. YOU are the only human on the face of this planet totally in touch wih your pain and the impact of stim. THIS is the foundation of seeking to program the permanent with your personal input in mind. The key touches on the computer to set programs is simple, and with your direct input you can immediately tell what works and what CAUSES problems. Your rep will watch over you and help.

May your wife be healed from all cancer with the lumpectomy and follow on treatments she will endure. Early enough caught, it is far better on the statistical trail for gaining remission or conqering it. So do the reading, you will learn much, and we all pray here among your team that ALL will be well.

Prayin, my friend,
Mark56:grouphug:

Paul: you and your wife are in my prayers! You've gotten some very good advice from the others on the forum...but they know me, I always have to add in my two cents :winky: When the trial is over, have pain meds. on hand as the pain MAY be worse for a while afterwards...probably due to a combination of your having gotten use to some pain relief and them messing with your nerves.

I know I cried when they removed the leads after my trials because the pain relief had been so wonderful and I didn't want them to take it out. They told me that they've had to send police out to bring patients back in because they don't want to give up the pain relief they got with the trial!!

Then it's on to counting the days until you get the permanent one. Best wishes with the trial!!

Paul!!!
 

Not caring one whit who may employ you and being quite frustrated with the journal which has not returned my attempts at contact, I had this moment of Epiphany today. Buried in my thread is a release of a version of the article I wrote at my doc's request. Might be hard to find now, so, I became inspired to put it HERE for you..... Why? Purely because I have the best interests of patients the world over at heart. Once I was No 3 in an organization Fortune 500 sized sitting there serving with other Fortune 500 folk, enjoying my career, and I remember one pivotal consideration always on the mind of the Board was the then current state of the revenue stream, the growth ratios, the EBIDTA if you will.

So, you likely now work in an environment formerly known to me. Your Board has to have the same concerns ours did. YOU have a means to take the message Heather and I share regarding patient involvement in programming the permanent implant FOR OPTIMAL PATIENT CARE AND SATISFACTION, SURELY A CONSIDERATION WORTHY OF RESULTING IN ENHANCING THE EBIDTA OF YOUR COMPANY. Print this last sentence and take it to your heirarchy, and their mouths should water. Thus, it has become my thought YOU might bear the article draft to someone who gives a CARE both for patient health and company earnings simultaneously. Therefore, medicine be doggoned, and here is the Draft Article. Do with it what you will in your organization. The world only knows because I have written on this forum patient involvement is KEY in success, not the ONLY factor, but KEY:

Handing the Patient the SCS Wheel
Mark R aka Mark56, 20111211

I now love taking my vintage ‘95 Eagle Talon out for a bracing drive. Feel the grip of its all wheel drive protesting a high speed curve as its purring turbo powers me faster than some might enjoy. This has replaced the backpacking and alpine skiing thrills of my Colorado homeland viscerally ripped from me along with the high flying legal executive career I enjoyed before a 2005 car wreck ruined my body.

Pain, prescription medication, physical therapy, surgery and myriad doctor appointments became the stuff of my life. I was consigned to life away from the boardroom, the private jets, the joy of family life, even the simple pleasure of sitting at peace with my family in worship. I was sidelined and imprisoned in pain.

Not one to take easily this life of pain filled leisure, I began fighting for restorative therapies; a means to regain the gusto. I wanted life again in a big way.

At last teamed with John Sacha, MD, of Colorado Pain and Rehabilitation, my certified interventional pain management specialist, Sanjay Jatana, MD, of Denver Spine, my orthopedic surgeon, and Mike Canning, my precious rep from Boston Scientific, I became poised for the adventure. I was about to re-merge into life in the fast lane no longer bumping around on the detour road of pain.

May 2010 I was allowed the opportunity to have Trial surgery toward implant of the paddle version of the Boston Scientific Precision Spinal Cord Stimulation device. It was not especially a comfortable procedure, but having those Trial leads powered up for the first time at the T8/T9 location brought a wondrous sensation to my spine. Quickly as Mike tested program settings, I realized possibilities the process could be beneficial!

Once released for my one week Trial, I began typical experimentation with the remote control and its varied programs with immediate real time variances occurring while I adjusted signal strength. It was day two of the Trial when I knew we had found credible means to address pain management as I responded to my wife’s query that I felt no pain sensations. The difficult task was returning to Dr. Sacha’s office for removal of the Trial leads and device at week’s end for that hellfire return to the burning of barely manageable nerve pain utilizing prescribed medications and an interferential neuro-stimulator topically applied in a criss-cross fashion to the lower lumbar area.

30 June 2010 Dr. Jatana and Mike assumed their roles for permanent implant of the SCS device, entering via a partial laminectomy enabling emplacement of the electrode paddles at the T8/T9 location. Surgery was uneventfully successful and I returned home the same day prepared with an appointment to return to Dr. Jatana’s office two weeks later for device programming. This is where my case took a grand turn for the better compared with so many I have met via my blog thread with readers approaching 50,000.

Returning to Dr. Jatana’s office for incision checks and programming, my wife and I were taken to an office following the exam where Mike was prepared with his laptop, connection cords, and a remote cradle. Inviting us in for the session, we discussed whether I might like to “drive.” I thought the question novel, not realizing just how novel. My remote was inserted into the cradle, and assuming the position before the computer under Mike’s watchful gaze and instructive attention, I proceeded to touch the mouse pad and keys, testing stimulus, response, reaction, correction over and over again until one by one I “dialed in” my program settings for the SCS device used in me to this day. I have never required one of the many tweak sessions I understand are par for the course for patients whose devices are programmed by the manufacturer rep going through game after game of “how does this feel” with SCS patients.

Patients depart tweak or program revision sessions often expressing a sense of woe and discontentment with the procedure, the device, the programs, or any combination if the dialogue on my blog pages have been any indication. Post SCS implant pain manifested in patients is the mantra expressed by those with whom I correspond, learning from them their program is always manufacturer rep set. No one, not one of the many from whom I have heard around the world express a situation remotely similar to my experience of sitting in front of the computer to even try manipulating settings of their SCS devices regardless of manufacturer of origin.

The dialogue has at times reached a fevered pitch with wonder why I, who was allowed to establish working programs which are subjectively determined by the patient, me, to be so successful as to have FULLY withdrawn from all pain management medications under the watchful care of Dr. Sacha? Why have I found such unequivocally sufficient pain management solely through the SCS device as to manage all pain spikes, resume my professional endeavors, and restore much of my family joy? Why me? Could it possibly be the unique combination of precision care by studied medical professionals AND the subjective programming session to which I was privileged? Surely there are medical professionals across the land and the globe who would not hesitate to compare credentials with my team suggesting their credentials to be comparable; so, is it just possible there may be some subjective understanding of pain at the patient level into which SCS professionals might tap? What if a patient was allowed the opportunity to sit before the computer which sets their pain management controls and under the care of the manufacturer rep was tutored through self programming?

I submit a higher patient satisfaction with procedure goal would be met by many a manufacturer. Costs of radiological studies ordered up by surgeons or revision surgery might even tend to decline as some of those procedures went unsought. Patient involvement in the programming strategy may even produce more results mimicking mine, with pain levels managed with fewer or no pharmaceuticals at all, with patients experiencing life of greater quality, perhaps with patients, like me, who are truly able to return to work and life in general.

So consider allowing your patients the charged up rpm acceleration thrill of uniquely successful SCS use to rejoin the rank of healthful living. Place them in the driver’s seat of carefully observed self programming their SCS implant. Watch their lives re-bloom in joy perhaps without pain medication. I AM the unique example: resumed my profession and living life large. I’m loving it!


There you go Paul, you can maybe sway some of the minds involved in this business.
Praying and Hoping for the sake of US ALL,
Mark56:winky:

Righto Paul
 

OK, so we know your point of origin, employment wise. I have read press and 10-Ks for all of you, every competitor, the litigation, the issues faced. Seems to me in a Kentucky Derby style race, the horse with just that one nose in the lead takes the crown, the rose wreath, becomes the champion. So, bend a manager ear since you have been allowed the grace of attaining self programming with your reps due to your connection.

Patient Satisfaction overall without bloody need for repetitive visits to tweak programs playing 20 questions, avoided revision surgeries which may have occurred for some because they were programmed by guess and by gosh, and the reality patient satisfaction overall DRIVES the medical practices you all hope to penetrate ARE THE ENGINE WHICH PRODUCE PROFIT. Perhaps I am speaking a bit too bluntly here; however, as a former Board member of that caliber I found Board meetings to be open frank discussions of JUST WHAT IS GOING ON.

The formula is yours. Try it yourself. Make your evaluation. Take the article and the public testimony of Heather and me..... then see whether HELPING THE PATIENT TO TRUE SATISFACTION earns your company some marketshare percentage points. The world is a large place even though communication has seemingly brought us closer together.

I believe you will find what Heather and I know first hand. No one else seems to be listening..... maybe it is your employer's turn. How about that?

Mark56:winky:

RE: question from an outsider
 

I read the article about the SCS pumps, just out of curriosity, why don't all professonals allow people to adjust their own SCS pumps? It seems to me, under close work with the doc, that pain management can be better controlled with the SCS with people doing their own adjustments. It gets rid of the middle man. I am not sure why they don't allow this with everyone? Isn't the goal it to relieve pain the best degree one can? I am an outsider, just questioning the medical professional. It seems the re-adjustments cost money, and that there is a financial issue involved. In laymans terms, would any of you answer? When a patient has more control over their pain, in any setting, you get better relief. ginnie

Ginnie my Friend
 

You have hit the nail on the head as did my Pain Management Specialist, prompting me to write the unpublished article..... he and I sat in exam room together saying and sharing patients could receive better care [supposedly everyone's goal], time and money would be saved in achieving better results, AND the big kicker for the company that takes the LEAD on SCS patient involvement in programming is SALE OF MORE UNITS PROVIDED THE TECHNOLOGY IS SAFE, FUNCTIONAL, AND ADDRESSES THE NEEDS OF THE PATIENT.

Unfortunately, the current wisdom as is many times written here in thses threads provides a glimpse into the world of reps who are undereducated in the reality of PATIENT SATISFACTION as the true means to drive sales, profitability, bonuses, and the like. Unfortunately most of them as MrsD has shown us believe patients are walking meat sacks capable of receiving technology which, if sold, regardless of outcome, adds to their PERSONAL bottomline. Were I on the Board or Executive team of such a company, I would eject every such rep and EDUCATE THE REMAINING REPS TO THE MISSION IS PATIENT SATISFACTION AND BETTER HEALTH THROUGH COMPANY TECHNOLOGY. Any other sales strategy and "assistance" in the OR and in programmig is just dollar sign focused WHOLLY WITHOUT attention to the party who is supposed to benefit most by the sale of that next unit TADA- THE PATIENT.

MrsD did us a grand favor allowing a glimpse into the backwater world of rep communications. The corporate sales strategy in all of such companies is flawed, definitely without concern for the patient, and off the mark.

So, here is Open door, I walk through it, and I would pay airfare for each of Heather and me to attend a Senior Managemnet/Board conclave to any company which would LISTEN to a strategy to overhaul their market approach to develop servanthood for the benefit of the patient. THAT will sell more units every time.... every time.

So, Paul, are you going to take me up on this? I would have to check with Heather, of course. Medical Technology companies need a serious overhaul in patient approach to fulfillment of life expectations post surgery. Seriously.

The dare is on,
Mark56:winky:

P.S.- Thank you Ginnie!:hug:

Hi Mark, thank you
 

I sincerely hope you and your wife, and Paul will go to such a board meeting. This approach they are doing, messing with the pain of an individual, is not acceptable. The patient must have control, so they themselves can determine what is best. I actually am horrified and somewhat discusted, that the medical profession, via the Reps. can get money at the expence of peoples pain. Mark, this is something that needs change desperately. We are not sacks of meat, but breathing souls that have pain. I sincerely hope you are able to reach those who control this issue, and make a move to stop this practice. In my book that is an abuse of both money and power. It reminds me of the world situation where greed rules. I hope you can be an agent for real change. I will pray for that issue. Thank you for answering my questions. I understand all too well now. ginnie