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-   -   New and just found the right forum (https://www.neurotalk.org/scs-and-pain-pumps/163565-found-forum.html)

ginnie 01-19-2012 10:09 AM

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

ginnie 01-19-2012 10:28 AM

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

Paulb_47 01-19-2012 02:48 PM

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.

ginnie 01-19-2012 03:50 PM

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

Rrae 01-19-2012 05:24 PM

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:

Mark56 01-19-2012 10:52 PM

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

Paulb_47 01-23-2012 04:31 PM

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:

ginnie 01-23-2012 04:54 PM

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

Rrae 01-23-2012 05:04 PM

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:

fionab 01-23-2012 06:54 PM

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:


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