[Hana]

Today is a rough one...with increasing pain, part from the weather.

I haven't been reading much in the last few days because i have become FLOODED. So far, I have been thinking about the SCS and after having read some of your stories, I decided that once I get my logistics squared up, I will probably go ahead with the SCS for the lumbar alone (not ruled out cervical yet) but I think I am not comfortable with any vibration at all...

A fear I have is how this is for very thin people? Is there room for a battery without it causing too much pain?I don't have any extra padding at all. Has anyone experienced it good or bad?
Also, how can I find out about reps and if they are in my area?
The doc says my PCP will continue to do my meds, which is good, but how do i care for the stimulator if needing help without a 4' drive?

At least if I do the lumbar I will be able to walk and sit some! My hands are another story altogether. So far i have one hand that works part of the time..the other---well, entire left side of my body is atrophied with CRPS and neuropathy from my neck. . I can move my arm but only with excruciating pain. Still, I'd rather have this than something worse. I am trying to weigh my options carefully.

My vent: I really wish I had someone to talk to around here(at home) My partner can't tolerate my condition so can't talk...and now we have another pain caused by pain. I also wonder how it will be and if I can continue to manage without much assistance at home..
Stressed is my mood but I can't get a mood icon to work.

Thanks all for your inputs,

Hana

[Rrae]

Oh Hana! Unbelievable.. I had typed out a very heartfelt response, and then my @$#%&^ Laptop decided to power down for NO apparent reason and I lost the whole post.......I am fumigating. Darnit.
Now I have to get ready to leave to go to a wake.

You ask very good questions. I'll try to get back on here and answer your Q's as soon as I can. Meanwhile I'm sure others will be along....

If you haven't already, I would suggest reading the posts that are up in the "stickie" section while you wait for responses. Very good information there. FAQ's, suggestions for what to expect after surgery and tips on how to be prepared at home.

TTYL
Rae

[Hana]

Originally Posted by Rrae

Oh Hana! Unbelievable.. I had typed out a very heartfelt response, and then my @$#%&^ Laptop decided to power down for NO apparent reason and I lost the whole post.......I am fumigating. Darnit.
Now I have to get ready to leave to go to a wake.

You ask very good questions. I'll try to get back on here and answer your Q's as soon as I can. Meanwhile I'm sure others will be along....

If you haven't already, I would suggest reading the posts that are up in the "stickie" section while you wait for responses. Very good information there. FAQ's, suggestions for what to expect after surgery and tips on how to be prepared at home.

TTYL
Rae

TTY Rrae,TTY Rrae.
I'll find the stickies and have a look. yesterday I lost 2 posts to to timing out, and never caught up! lol I appreciate you writing again...

Warm evening,

Hana

[ger715]

Hana,
I feel for you....what a huge decision. As you have indicated; the lumbar might be the way to go since you have so much difficulty with the cervical area.

I do remember a post sometime ago regarding the person being thin and was experiencing some additional difficulty because of not having the extra padding. I have heard of some who had the battery inserted in the stomach area. Seems like the battery; especially early on take quite a while healing and getting accustomed to it.

It would help to have someone to talk with. My husband is a dear; but I can tell when I start mentiong having a "bad" day. There is very little, if any, response. Then I try to change the subject.

Praying you make a wise decision. I am glad you are looking into this and not being pressured into making any hasty decisions.


Gerry

[pooh_ac]

Hanna, I remember those thoughts and feelings when I was presented with the option of a SCS. At that point in my life I had been treated by MANY different medical providers, from my primary care, person, his supervisor ( a very dear MD second in my heart only to my primary), an orthopedic surgeon, many chiropractors, a pain management doc, a couple of psychiatrists (cause I was crazy and seeking medications, yes not narcotics but medications) A multitude of physical therapists (most who I would have been pleased to have never met since I didn't have a "true" injury and they went forward on the assumption I was just a "faker" ) At some point I decided I was truly someone just taking up space on this world and at that point I DID need some serious mental health care..... ended up being sent to a hospital that was charged with fixing my crazy and my very active (and almost successful) reach to rid the world of myself and my constant insistence that SOMETHING WAS WRONG! Then one day out of yet more desperation I managed to get myself an appointment with one of the orthopedist who take care of the Cornhusker team. Mind you this drive was 4 hours one way and I had decided that if he felt there was nothing wrong with me I would no longer seek help just keep on keeping on until....

Mind you my own provider and my friend the MD both believed me, the MD even told me at the time of my injury "you would've been better off if you would've broken your leg"
So after many x-rays being taken and compared to my other x-rays and CT scan he walked in and was in the act of telling me my films all looked good he stopped and LOOKED at me and my dammed leg, he sat my films down sat on his stool and told me the best and worst news of my life, "I know what you have... its called RSD, but we are probably too late to "cure" you" I then went on yet another mission to find some sort of treatment to help,,,,,
Sorry long story, my point being that yes it is a very long distance to your surgeon, yes most people do not TRUELY understand where we with this big time nasty, Not family, not healthcare providers, not friends. We NEED each other here and in other support sites, just someone who truly understands. I have decided long ago that until and or unless I find a better pain doc I will travel to see mine.
Now to your questions. My battery is in my stomach, at the time my 1st unit was placed almost 100% were placed there, the only question they really asked was " where is your panty line" My next unit was just a battery change out, I was told that there was a new rechargeable unit "coming soon but you would have to have your leads changed" Figured it would be awhile before my third unit would need to be placed My last unit is indeed a rechargeable unit placed again in my abdomen after much argument. The current standard is to place the unit in your upper backside (don't need to roll the patient and risk infection or breech sterile technique.
As far as reps, call your doc ask what brand of unit he primarily places also ask for their reps name and phone number-- call him/her and ask about reps in your area, where you could be seen, do you need to travel that far for reprograming or tweaks, ASK, ASK ASK their job is to answer your question address your concerns etc.
Finding someone local to support you isn't very likely. You may be able to find a chronic pain support group (my nearest one is 2 hours away) If not come here, let us answer your questions, address your concerns, and offer our support. We don't really stipulate you must have a unit or pump of some sort. We just understand the stigma, the lack of support, and the lack of knowledge in our world!
PS: Yes we do a lot of "fluff" but no one knows how we suffer and how good a cyber hug and empathy can feel especially when there is no one in real life giving a rats rump

z

Originally Posted by Hana

Today is a rough one...with increasing pain, part from the weather.

I haven't been reading much in the last few days because i have become FLOODED. So far, I have been thinking about the SCS and after having read some of your stories, I decided that once I get my logistics squared up, I will probably go ahead with the SCS for the lumbar alone (not ruled out cervical yet) but I think I am not comfortable with any vibration at all...

A fear I have is how this is for very thin people? Is there room for a battery without it causing too much pain?I don't have any extra padding at all. Has anyone experienced it good or bad?
Also, how can I find out about reps and if they are in my area?
The doc says my PCP will continue to do my meds, which is good, but how do i care for the stimulator if needing help without a 4' drive?

At least if I do the lumbar I will be able to walk and sit some! My hands are another story altogether. So far i have one hand that works part of the time..the other---well, entire left side of my body is atrophied with CRPS and neuropathy from my neck. . I can move my arm but only with excruciating pain. Still, I'd rather have this than something worse. I am trying to weigh my options carefully.

My vent: I really wish I had someone to talk to around here(at home) My partner can't tolerate my condition so can't talk...and now we have another pain caused by pain. I also wonder how it will be and if I can continue to manage without much assistance at home..
Stressed is my mood but I can't get a mood icon to work.

Thanks all for your inputs,

Hana

[ger715]

Pooh,

All I can say is "what a great post". Thank you. As you indicated the "stigma", lack of support, most of all).....knowledge" are the real culprits making our lives even more difficult.

Needing one another is sooooo very important. Someone; just might have a bit of info that really needed to be told. Fluff; whatever it may be called; we need to "hear, see and listen" and be there for one another. Most of all the caring about one another is real, from the heart.


Gerry

[PamelaJune]

It brings a smile to my face, I hear the word fluff and my thoughts dive to my friends on NT. Then I think of my guilty of fluff, downright fluffer post and my dogs fluffing and I get the giggles. The night I typed the fluff post I had a dream, I was in a pub eating and received an unusual looking dish, the woman handing it to me said its a fleautier, I looked at it and said oh a floater, I woke up laughing, and continued to laugh and giggle away before falling back asleep. I have no clue as to what a fleautier is, and even the fact that the spelling was in my dream worthy of a giggle. Laughter does make us feel better, maybe it's because we don't do it so often...
I have my battery in my butt, I'm thin and still losing weight, the battery can be felt and is visible on occasion if wearing a thin dress. But it doesn't really hurt enough for me to pain scale rate it. My PM flushed both sites with some sort of epidural like substance and subsequently both surgical sites gave me little to no pain. That said, apparently I have a high pain threshold so that may be why. Like. Pooh said, ask ask and ask and we are all always here for you

[ger715]

Pam,

I thought you gave a great response to the poster that mentioned "fluff". YEP !!!!!! We need lotsa fluff and then some.

Glad to hear you are coming along well and able to give Hana some insight.


Gerry

[chrelsey]

Every time y'all start talking about fluff - or fluffing - it just cracks me up! Don't know why . . . well, yes I do - it was when Pam wrote about her dog "fluffing!" I guess I'm just silly like that - thanks for the smiles!

Regarding the implant - when I had my surgery in December, I had 28 lbs. that I wanted to lose. However, where they put the battery, there wasn't a lot of excess - there were certainly more areas of "excess" that they could have put it!

Since December, I have lost 15 of the 28 lbs. I can definitely tell a difference in it being more visible now than when I got it. And while it no longer hurts, per se, it is uncomfortable at times. I told my husband the other night that when I lay on my back, it is kind of like having a stone under my hip.

And while it is more visible now than it was 15 lbs. ago - and may be even more so when I lose the other 13 lbs - for me, it is a small price to pay.

Blessings to you all!

=Becky

[Rrae]

Originally Posted by Hana

yesterday I lost 2 posts to to timing out

Hana

Well, my dear There is a simple solution to keep from getting 'timed out' while posting....when you first log in, where you put your user name and password, you will notice a little box right there that says "Remember Me"
Click in that box and then you'll be able to stay for the rest of your life . without getting timed out....
Just be sure to click that box every time you log in.

See! I KNEW you'd get good responses! This place never ceases to amaze me
Rae