[Spiney95]

I have been one big mess since I had the scs trial removed several weeks ago. It's a Fibro flair. This happens whenever my body perceives that it has been violated in some form. It's so darn crazy when you stop and remember that the trial eliminated ALL of the neuropathy. I was shocked at the degree of success. Not that I was feeling negative but who expected total relief?

The flair started two days after the trial started and I wasn't surprised. I have been layed up for several months after surgeries. Now I am concerned about going through with the implant. I know it is far more aggressive than the trial. Per my extensive history, I will have a big flair. I just don't know how long it will last. I have discussed this with Pain Man and he agrees that it will most likely happen but will be worth it once it is over. Intellectually, I agree. Emotionally, I am not prepared to go through a giant flair. I'm not a kid anymore and not as tough as I was 25 years ago. Living alone makes it even harder. Thanks for listening.

[Mark56]

Spine, venting is a big part of the participation on these pages. Things do not always seem fair, and for you to feel the need to air your concerns about flareups is an important part of receiving support from your fellow SCSers. Get it out or be eaten alive by the frustration, so I hope and pray you will feel comfortable giving us your grief and anxiety over the prospects of a flare taking over IF you do the permanent implant.

You vent all you want to young lady.....
Yup,
Mark56zzzzzzzzzzzz

[Spiney95]

Originally Posted by Mark56

Spine, venting is a big part of the participation on these pages. Things do not always seem fair, and for you to feel the need to air your concerns about flareups is an important part of receiving support from your fellow SCSers. Get it out or be eaten alive by the frustration, so I hope and pray you will feel comfortable giving us your grief and anxiety over the prospects of a flare taking over IF you do the permanent implant.

You vent all you want to young lady.....
Yup,
Mark56zzzzzzzzzzzz

WHEN I do the implant. I am really concerned about the flare but I have no choice. The autoimmune and dysautonomia are going downhill rapidly and it is aggravated by all of the nerve pain. The nerve pain is the greatest aggravator with me. It must be removed from the equation. My blood pressure goes up and down. No control. My baseline a year ago was 110/70, unmedicated. This morning it was 190/100. There is no medication to stablize it as it could drop to 90/50 this evening on its own. My baseline temp is now 95.5. Everything is whacko. BTW, I have gone to a super neurologist who specializes in autonomic disorders. He pretty much shook his head as I was already on the meds he would have put me on.

I have the psych. eval. on the 18th and promised Pain Man I would behave myself. I worked in mental health and can give her whatever it takes to get approved. As long as the surgeon thinks I am up to the procedure, I should be good to go. I am just so sick and tired of being sick, tired and in non-stop pain. I know all of you know that one. Have a good night and thanks for being there. Blessings.

[Rrae]

If only it were a simple matter of ..."do the surgery and face the flare with plenty of pain meds as ammunition until things die back down".
Wishful thinking on my part tho
With your autoimmune factored in, it becomes pretty complex and I totally understand your frustration. The implant will take away your nerve pain....but at what cost? And for how long?
I'd sure like to think that everything will be fine once the SCS takes away the nerve pain, which aggravates everything else....and that will certainly be my prayer for you, Spine. Maybe by some measure, it will be that easy. ?

Meanwhile, your frustrations are not falling on deaf ears. We certainly know and understand what this ongoing pain does to every aspect of our lives. Being able to speak freely of our pain here means so much, because of the empathy that is spread amongst us. I have lost friends because of trying to talk about what this has done to me and frankly they don't want to hear it.
It's not that they don't care of course.

Thank you for sharing how you are feeling. This reminds us all of how huge of decision this is. People who come here searching for 'real' discussion on this can see the reality of what is involved.

We're all in this together.
We all care.

Rae

[Mark56]

WHEN you receive your permanent implant, I, like Rae, pray all will be well in all manner of things, and more importantly your pain management profile may turn out as with Coral Toe and me, Managed with the Stim- no meds.

I do understand fluxuating BP, as through these past seven and a half years with all of the surgery and all of the meds, my BP would be wacko just as yours, as low as 80/39 at one such measurement. I recall feeling faint at that point.

So, where does this bring the circle? Back to your upcoming psych eval, and may you not feel compelled to give them so much what they want as that the real you will be demonstrably center line with the standards of care expectations.... why? Because the real you demonstrated on these threads is within the program as I know it, and because I always found answering questions straight up to be the better plan.

Prayin for ya,
Mark56zzz

[Spiney95]

Originally Posted by Mark56

WHEN you receive your permanent implant, I, like Rae, pray all will be well in all manner of things, and more importantly your pain management profile may turn out as with Coral Toe and me, Managed with the Stim- no meds.

I do understand fluxuating BP, as through these past seven and a half years with all of the surgery and all of the meds, my BP would be wacko just as yours, as low as 80/39 at one such measurement. I recall feeling faint at that point.

So, where does this bring the circle? Back to your upcoming psych eval, and may you not feel compelled to give them so much what they want as that the real you will be demonstrably center line with the standards of care expectations.... why? Because the real you demonstrated on these threads is within the program as I know it, and because I always found answering questions straight up to be the better plan.

Prayin for ya,
Mark56zzz

I want to avoid any discussion that might lead to the subject of getting back into therapy for depression. While anyone with REAL pain deals with a certain amount of depression, I accept it as part of the profile and do a pretty good job of dealing with it. I don't even want to consider anti-ds as I have had way too many side effects with them. That's why Pain Man set me up with a psychologist instead of a psychiatrist. Over the years, I have spent way too much time and money on unproductive psych. treatment. Besides, she won't be taking me on as a patient since she doesn't take Medicare/Medicaid patients. She is just doing an eval. and an MMPI.

[Mark56]

There is a perspective I could deliver, but will not, feeling you are centered well in your focus. No, I do not and have not advocated going places where you feel threatened by the process, Spine.

When I had the eval I was still unemployed in the sense I desired, but had made quite a bit of hay providing pro bono services for those who could not afford to pay a professional although so many in the present marketplace have needed legal help. I assisted people with the work necessary to modify their mortgage loans so they could hold onto homes from which they faced expulsion through foreclosure.

During this time my wife and two eldest sons had taken what little remained of our retirement funds and started a business which helped people deal with their pain through a widget I had patented. It was a good time of sharing with people who by and large were feeling blessed by the widget and they gave responses which buoyed my spirits. I was, and still am, the legal guy for the company.

Further, I had been counseling people who were without work, having started up a group of people who were seeking employment in our community and the efforts resulted in all finding gainful work.

Things such as this gave me blessings about which to speak at the time of the eval so the psychologist who did refer me positively as a selectee for surgery. I just told the story the way it was.

Yes, my wife and I had lost millions in the crash of stock values in which we had invested. Yes, I had lost the job which had enabled me to ride private jets and limos as I did my "so called" important stuff around the country. Yes, the wreck in which I was involved had isolated me in the prison of our bedroom, because it hurt too much to do all I had done previously. Yes, one of our children decided at this time to act out and have brushes with the law, then he ran away and we knew not whether he was dead or alive.

So, did I go into all of that bad stuff, no. Sure, I admitted the wreck, the injuries, the consequent loss of job, but I spoke of blessings which were far more important. I told what was at that time the truth about our circumstance and our feelings of hope as a family. Such is the perspective I presented.

If you have blessings in your life, talk about them! If you are experiencing hope for a brighter tomorrow, share your feelings. Do you have pain?? You sure as shooting DO, otherwise you would not be seeking SCS intervention. Does pain deal you hard blows? Yes, but are you able to see the positive? Yeah, you are, since you have learned something of good from your Trial. Do you have unrealistic expectations about the process as a whole, including its outcome??? This is the trick question, because insurance wants to weed out unrealistic expectation as they are concerned about paying for a procedure and paying later to have it removed because it did not meet expectations....... I hate that particular wrinkle...... So, how did I answer the trick question? I looked the psych in the eye and said, "look, in my profession I have had to deal too often with the unrealistic expectations of clients. I understand the drill. I weigh the pros and cons and analyze the situation. My trial was a positive event over all, and pain management was achieved. The hope I have if I am allowed to proceed with permanent implant is a better means to manage pain than with narcotics. None of us can predict what the future holds, even you, Dr Soandso, but for me, I am willing to give this approach a go if I can find the restorative opportunity for life shown to me via the brief window in time during my trial implant."

I was not sent off at that moment for further counselling. No prescriptions were suggested for me as a consequence of the interview via my physician. I received a go ahead signal.

Guess what? The reason I ever made Rrae's acquaintance in this little corner of the universe was because I bumped into Neurotalk as I attempted to learn something about the psych eval. I reckon that pretty much puts you, Spine, and me around the same starting place. Rrae told me I would live through the event, just as I am telling you..... and she did not fear I would blow it. I have no such fear for you either.

Go in. Do your best. Go home, and you will learn the results in about ten days to two weeks as I did. It will be OK, especially if you go in fresh, rested, and ready to tell it like it is. I did.

Prayin,
Mark56z

[Spiney95]

Between my education and work experience, I am totally familiar with the eval. My biggest concern is having to take a several hour written personality test which I find uneeded in determining whether I fully understand what lies ahead and have realistic expectations. The MMPI is not mandatory and is a real cash cow. I have a lot of arthritis in my hands and would rather not take it when an experienced neuro psych can determine what she wants to know in a matter of minutes if the patient is cooperative, which I will be. I will subtley mention that I had not been looking forward to the written part of our appt. due to the hands and hope she takes mercy on me. OOOOH, company is here. Later.