Welcome Aboard!

Yes indeed you are at the right place! There are several here who also have the Nevro, so you certainly are not alone.
I'm very sorry for the problems you and the others in your group are having with your units. Also the fact that your insurance has dropped coverage on your spine health. This is SO not right that they did this.

Do your doctors give you and the others any type of options in the effort of trying to find out why these units quit working, such as re-program sessions or tests to see if leads migrated? Here in the states, the Nevro isn't being used (yet)...as far as I know. I wish I knew more about these. I will surely study up on them, as there are more and more people getting them.

Do stick around. Like Pam said, plenty of caring people here and we are always looking out for one another. Even if you just need a vent.

Hopefully answers will begin to come

Caring,
Rae

I can't tell you how much my heart hurts when I read your stories of the pain you endure and the attempts you make to live fulfilling lives. As y'all know I don't have CRPS, I'm stuck with chronic lower, upper and cervical pain, fibromyalgia, PN, a dodgy bowel, a compromised immune system and these never ending headaches.

I try, I really try every day to be positive and to start to do things to live a life. I'm only 52 and I'm determined to prove them wrong and be able to work again. In August my minimum wage superannuation payments will stop so I need to be well enough to be able to get back into the workforce to relieve some of this burden from my husband as I won't qualify for disability due to his income. I'm waiting on a cancellation appt to get into see my PM as the scheduled June 6 is too far away. If I need to have another spinal fusion or the Boston paddle and laminotomy I really would like to get it done while I can still afford hospital bills and medication etc.

I'm over, totally over feeling blue, sore and sad. So I've gone mad and booked tickets to go to the football this Sunday to see our footy team, no clue how I'm going to manage the train journey, the stadium walk and staircase to our seats, but at least we are not up in the nose bleed stands... It will be worth it to see my husband smile, I will as usual have my walking stick and if the crowds (expecting 44000) are pushy i will stand back and make my way after it begins and finishes. And then on Tuesday I've booked to go away down South for 3 nights to my birth town and stay in a lovely B&B self contained oldy worldy cabin that has its own spa so taking champagne, chocolate and cheese. The great news is the local hospital where I was born is only 200 meters away so Lyndon feels it's manageable lol.

I just had to do something, I can see him slumping further and further in the depths of depression as he struggles to accept he is the main breadwinner and I may never return to work. I'm praying I can just get these procedures done before August and that they will work. Something has to go our way sooner or later. I used to be so house proud, now its all I can do to clean the bathroom, kitchen and make the bed. We have a biggish house and I can't do anything outside other than water. Running the vacuum fills me with dread and dusting is so over rated ha ha. Today I've dragged the vac and all the cleaning materials out and tomorrow first thing as soon as I've taken my meds I'm starting. Lyndon will leave for work at 5am so I can begin before it gets to hot. That way the house will be clean for when mum comes for her Friday night roast that I cook and it will still be clean enough for her to stay here next week and mind the pets. Amazingly family members who always rely on me to help them out when they need it are unavailable. Gee what a surprise!

Ok as you guessed, it's going to cost money, too bad, I will scrimp on something else. I rarely go out and in comparison to what we used to spend this will be bottle tops. Hmm maybe I should make it beer, cheese and nuts instead...

I feel your pain - literally. I understand the cry from the depths of your soul to LIVE. Good for you for making plans for the game, and to travel back to the town where you were born. I will be praying that during both of these outings - each with their own unique challenges - that you will be kept safe, your pain manageable, and that these times will bring a ray of joy and happiness into your days.

I understand, too, how hard it is to clean. Vacuuming is so hard - but when I finally dragged mine out one day last week, all I could see was the dust and dirt, and I began cleaning with a vengeance - even vacuuming the dust from the ceilings. I paid dearly for it for a couple of days, but I can't stand a dirty house, yet I also can't bear the pain that it causes to clean it . . . so I have had to let some things go. I agree - dusting is WAY overrated! Haha!

My birthday is in 10 days - I will be 50. As I look to the future I want so much more. This was supposed to be the year everything turned around - SCS is in place, diet is almost finished (yay!), I was going to be able to start pulling my weight on the farm with the chickens - as well as with the new miniature goats we are getting this month (another yay - they are so cute!). But the challenges just keep coming. I'm frustrated - my leads may have moved, as I tend to lose connection frequently - my rep wants me to get an X-ray to either confirm or deny that reality. Also, my pain management doctor has decided that now is the time to wean me completely off of my pain meds - even though he knows I'm having issues with my stim and that my pain level on a good day is a 5, and on a bad day a 7, with more bad days than good. He said that once I'm off completely, we can determine if I perhaps need to go onto a long-term, more effective pain med. I understand his reasoning, but I don't understand why not just make the med change instead of insisting that I be off of all pain meds for a month. What value is there in me being in so much pain? What will that tell him? How will that help? I'm frustrated with the process, and with a doctor who can so easily dismiss my pain by saying, "I know you're strong - you can handle it." But I'm not "strong" anymore - chronic pain has a way of sucking that strength right out of me, and as I gradually wean off of these meds and my pain increases, I continue to dread the weeks when I am not on anything at all.

But in the midst of pain, a dirty house (*smile*), etc., I have to remember to redirect my thoughts, my eyes, and see all of the blessings. Our middle daughter is a week-and-a-half past her due date, so that means that any day now (hopefully!), I will have another sweet little grandbaby to snuggle and kiss! They live almost five hours away, and as soon as little Kaalyn makes her appearance, we are hopping in the car to go up there so that she can meet her Mimi and Papi! We can only stay overnight, as we are only paying someone to take care of the animals for one night, but what an incredible blessing - a new baby.

New life.
New hope.

A reminder that the world is bigger than my pain, and that my perspective needs to be, as well.

Sorry for such a long ramble. Fluff? Maybe. I've been silent - lurking - for so many weeks now - feeling like anything that I typed would sound like I was complaining, and I never want to have a complaining spirit - but rather one that encourages and uplifts others. Even though I haven't posted, I check the forum several times a day and read everyone's posts. And as I read, I pray for each of you - your struggles and your burdens - and I pray for all of us - that our days will hold special, surprise blessings to remind us that every day truly is a gift.

=Becky

oh my goodness
saying it lightly
i wish you well
the weather most certainly
affects my body
drop in barometer
will do the job
you are right if you
notice
this is great listening to your body
it talks
we must listen
be well

Im sorry. Im new to this site. Can someone please tell me how i can post my own thread. I have many questions but i cant figure out how to post my own question/Concerns. Any advice will be greatly appreciated. Thank you

Hi Stephie
most questions on using the site have answers in this thread on our new member intros forum
http://neurotalk.psychcentral.com/thread18185.html

see post #8 on how to start a new thread of your own

Idk how to do it. I tried but i didnt see anything. Does this mean my post/ thread noone can see it?

Hi Stephie,

I moved one of your posts to our new members forum for more help there..follow this link to it -
http://neurotalk.psychcentral.com/thread202346.html

Becky
You know what? this sounds very familiar to me b/c my PM doc mentioned doing this to me on a couple of occasions. He termed it a "Drug Holiday" yeah right, hoot hoot. His reasoning had to do with my tolerance to my meds. By tapering me way down, he would be able to get a baseline measurement of my pain, kinda like starting over. The 'holiday' is the period of time it takes to wean way down or even completely off the meds. He would then be able to start a different pain med plan without me having a tolerance build up.
Well, he retired before we actually tried this (thank God) so I didn't have to do it. But yeah, I was a bit p.o.'d about it b/c how on earth are we supposed to go without pain meds??!!! And for him to make it sound so lah dee dah easy, it seemed completely unrealistic to me.
Your Dr probably has other reasoning for what he's saying about this, but I thought I'd share this with you. Maybe you've already heard the term 'drug holiday'.
Another term I've been told is 'hyperalgesia', which has something to do with long-term pain medication actually causing a sort of 'rebound' effect to where the pain meds actually causing more pain. ??
Not sure if I described it correctly.....here's a Wikipedia description of opioid induced hyperalgesia:
http://en.wikipedia.org/wiki/Opioid-...d_hyperalgesia

Well, whatever the case may be, I sure hope your doc doesn't actually take you completely off your meds. To me, that is just plain 'BAD MEDICINE'
I know me well enuf - I'd end up on my local psych ward.
With what you are going through right now, this seems the worst time ever to try that.
Turning 50 is a big deal. If your doctor ruins it for you, I will personally jump in my cybermobile and pay him a visit........ not a nice one that's for sure.

You don't deserve this!
Rae

Rae, you literally made me laugh out loud! The thought of you hopping in your cyber mobile and giving him "what for" - priceless! Thank you for that smile!

I have heard the term "drug holiday" but not from my pm. Like I said, on one hand I want to say I understand his reasoning - but on the other hand, being in pain just doesn't make sense. Also, his lackadaisical attitude towards pain has always baffled me. This is the man who doesn't believe in any type of sedation for procedures, so everything I have let him do to me has been VERY painful, especially the two ablations and the epidural lysis (to break up scar tissue). I refuse to go back into his procedure room again, or as I now call it, the torture chamber.

But I'm a stubborn one . . . he wanted to wean me off ever so slowly - like over the next three months (which in my mind just prolongs the agony), so I am weaning myself off just a tad bit faster. I want to go into my next appointment in four weeks and tell him that I am completely off the meds and ask him what his game plan is for going forward. I'm honestly not on a ton of meds - I was taking 10 mg. of hydrocodone twice a day, and 20 mgs. at night. Over the past two weeks - just on my own - I've gotten it down to where I am taking just 10 mg. of hydro at bedtime only, so I don't think it is unrealistic that over the next couple of weeks I can wean down off of that.

What about withdrawals you ask? I've honestly experienced none. Nada. Zip. And I've been on hydro for the past four years, except for the three months last year that he switched me to Oxycodone, but I weaned myself off of that one, too, after I got my implant and just went back to taking the hydro, as it wasn't as scary of a drug to me as the Oxy was.

Am I in pain? Oh yeah. I'm betting that by the time my appointment rolls around my hubbie will have to drive me, as it is an hour away and I don't think I'll be able to drive myself. But, I would rather get off of it now - show him just how strong I really am - and then move forward, instead of dragging it out for 3-4 months. You just don't mess with us Texas girls!

=Becky