you know it
and we just cannot stop
not an option

I got a surprise phone call from the Nevro rep yesterday, a new bloke. I haven't heard from them since January. He wants to meet me on Monday to try a different program... Not aware I was already on P3 level 6, or that I have only one lead, that it took 3 hours to do the procedure and that they had problems or that they are supposed to be liaising with the Boston rep to get me a Boston paddle.

Feeling frustrated doesn't begin to describe my emotions. We are nearly at April 3 months and they have done diddly squat. I know a squeaky wheel makes the most sound and gets attention paid to, but I'm just not a squeaky wheel, I'm clearly far to tolerant and understanding of how busy they can all be and I pay for it by being forgotten. Just don't know what to say anymore, have to start all over again and have this guy fiddle around and do all the programming over again despite the fact it's already been done. does he think I'm telling him big fat porky pies ???

i am so sorry
so sorry
that frustrating
feeling of not
getting anywhere
i hear you loud and clear

Oh the pain, the pain... but then that is Doc's line.

How I pray the pain would be less, be managed better, be.....well, maybe GONE for all. I do not understand the recommendations of some care givers on "hey, we should try you on no meds" when pain is highest ever. I just do not understand.

Oh, how I got to the point of hating the meds, and the fog, and the....well, being stopped up, you all know what I mean. Gee, I still carry a bag of prunes around in my briefcase.

Then reading of reps who are not responsive, who think they might "try another program," of equipment failures....it just seems so all fired awful.

Yeah, I do still hurt, and it has to do with the lower lumbar and leg nerves [the ones I can still feel] which don't always respond well to the stim, or maybe I am not using enough signal..... yet I am SO glad to have withdrawn from the opiates and such. The process was unfun. The backlash was absolutely dreadfully near end of lifeish, and there I was at the time, seeing a psych for the "so, why do you think you felt hopelessness and helplessness" discussions.

These things all of us have struggled to handle are so VERY difficult. Those about which I just read make the eyes cry until they are sore, and we still strive. That spirit of We Still Strive is what keeps all of us putting one foot in front of the other, of seeing to it our spouse or significant other may enjoy a moment if not two, of wanting to have more than two nickels to rub together [or maybe pence depending on locale]. This stuff is not easy. It is exhausting.

So, I resort to praying, and some more praying. Helps me, and I believe helps others. It is my thing.

May each of you feel just a measurable bit better....I pray

I'm so very tired and worn out from it all. My PN is spreading I swear up and down the left side, none of it touched by the one SCS lead.... Pain flares today in my back... lower, upper and cervical all self inflicted, lifted something heavy, silly silly me, what was I thinking, oh well I know the answer to that, sometimes we just have to do what we have to do knowing what the consequences will be, pain meds to the full will have to be taken along with extra "make you go".
Lol, oh dear, the things we have to deal with. Someone posted somewhere else about the side effects and the explosive "wind" ..... why does the subject of "farting" make us giggle so. I can sometimes be in stitches of laughter, it's hilarious at times, made worse I suppose because I've suffered so many obstructions that we, husband and I are now very aware if I haven't "passed wind" and conversations such as have you gone today have become the norm.

Oh dear friend
Oh you know it
My granddaughter
gets on a roll
It is so true
herbal tea for a
more friendly way
Not happening
Love prunes especially if you
put them in the freezer
they do not freeze
a nice chewy texture
Or afraid the toilet will
overflow however imbarassing
but the real thing
It too painful when speaking
seriously

May all be well

I certainly feel what you are going thru and I am so sorry that it has to be you dealing with this terrible frustration. You've been through your share (and more) of trials and tribulation......yet you always rise above it all. ..... YOU are truly one to be admired my dear friend, truly I say. For I know not many others who can start a post on a note of understandable frustration, yet end thy post by giving credence to such a noteworthy description of a blast of wind from within, somewhere between that of a faint 'flufffffff', to the other end of the spectrum from which we measure an explosive wind of monumental velocity, perhaps with the capacity to reflect such force on a richter scale.....I do declare with all thine wisdom..... that....as long as it is merely an explosive WIND of which we speak, then thankful we must be. I shall leave it at that.

My hope and prayer is that this awful suffering you've been going through will please GOD stop!!!

Rae

Well consider me stunned. I have had this device in since December and had little to no pain reduction to the never ending referred pain that spread out to my hips, both sides. Most of you will know what I mean, that agonising pain that comes as you turn from side to side at night trying to find relief and you drop off to be woken shortly after "in" more pain. Or as you walk it knifes in sharper than sharp?

The rep conducted a sensitivity test, never had one before. Experienced nerve jumping tingling on the right side of my body, nowhere near the spine, on the right side at waist level. You know, that muscle jumping tingle you get when the physio puts the pulse machine on to high. I asked did it mean the lead had migrated, but no, he's happy with it. First time I have ever felt any indication the thing is on.

So he reprogrammed it, explained the electrodes work in pairs and different levels activate different electrodes meaning different areas are targeted. None of this been explained to me before, I was of the impression p3 level 6 meant all electrodes blasting out, but no... So now I'm on P1 level 4 and I'm sitting here in surprise. My thoracic is weeping, cervical screaming, left arm and hand buzzing, BUT reduced hip pain.

The rep agreed I have every right to be annoyed and he was disappointed in the June date for me to see my PM. If I get the paddle with its 32 leads I will get coverage to my thoracic, cervical, lumbar and my left arm/hand. Nevro are working on developing a paddle but it's a long way off, so it's going to have to be the Boston.

Learned my PM is going to retire and that's why the list halved and appointments so far out as he is working 2 to 3 days a week instead of 5. He is a miracle man and he is tired. So hope I can find another PM as good and as communicative as him, bear in mind most PM start out as anaesthesiologists so talking not high in their patient skills. I can see the PM I used to, he is brilliant but he only works out of the hospital where they discharged me with a broken back and treated me so atrociously. Much thought will have to go into that one.

August looms ever closer so I've booked an appointment with my current NS for May and they have me on the cancellation list. I'm seeing my GP this Friday and will get her to refer me to the NS who does the paddles. All this waiting has got me nowhere so I'm taking the bull by the horn and will do the legwork myself to get me in to seeing this new NS instead of waiting until May or June for my existing specialists to do the referrals. I've been so stupid, waiting and waiting being quiet and compliant. It's time I became a squeaky wheel, August will be here and nothing happening unless I take back control of my own path. I want / need to be well enough by the end of August to get back in to the workforce.

Woohoo, just got call from my NS receptionist, she's fitted me in for April 14. I'm going to push for the L2/3 fusion to sort the lumbar pain and paddle insert for the cervical, thoracic and left arm/pain. Yay, I'm excited, I might be in and out and recovering in time for my husbands 50th in July and ready for work by August. It's good to have a goal and dream, yes it might be dashed, but for now, I have some thing to hope for again....

and that's the way it should be
to be given valuable information
why shouldn't you look forward for
the future
i am happy for you and your
loved ones

that you to will not settle

to be able to make plans
for the future

you know you
like no other

you figured out you

and only for the better

God be the one
to make any important
changes

so happy for you

keep the faith
and empower yourself

sending gentle hugs

Originally Posted by PamelaJune View Post

"Feeling frustrated doesn't begin to describe my emotions. We are nearly at April 3 months and they have done diddly squat. I know a squeaky wheel makes the most sound and gets attention paid to, but I'm just not a squeaky wheel, I'm clearly far to tolerant and understanding of how busy they can all be and I pay for it by being forgotten. Just don't know what to say anymore, have to start all over again and have this guy fiddle around and do all the programming over again despite the fact it's already been done. does he think I'm telling him big fat porky pies ???"

My God Pam,

I am so sorry that you have been dealing with so much pain from all sides... oh
that is NOT good, as you have had far more than should ever be your share!!!. I look up to you Becky, Rae Mark... and feel that I am to follow in your footsteps..? Oh no...no. I pray for your successes and will keep on as Mark says.. Speak loudly to anyone of those turkeys who will listen to you... Now don't give up on your strength! (I can feel it!) If it is in your heart then fight those bad medicals..we are all with you. I Right now I'd say that I may rethink my course, and just deal with a day that lasts for 5 hours;now maybe it seems like a very good deal. You are stronger than strong Pam. I admire you and know that you will triumph over this, too.

May you rest tonight and feel better tomorrow, and on that way each day.

Hana