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