Oh the burning is just awful....... at first when it happened to me I thought Id gone mad!!! how could my leg be burning, its so cold and it has never left me. The SCS tries its best to mask it at times but I have to keep rubbing my legs to get that awful feeling out of them.

Abbie I hope you get relief asap

I also have the deep bone aching pain. Where it feels like my bones are going to EXPLODE!!!!

This goes hand in hand 24/7 with with the burning/freezing pain.

I have severe muscle cramping and spasms. I often sit and watch my muscles moving somewhere in my body when I am not moving.

The softest of touch is very painful!!! I also have what I call a delayed pain sensation...where if I touch something or something touches me it may not hurt instantly...but a few moments later the pain is intense!!!

I never have ANY moments where my pain is below a 9+ even with the pain medication.

Because so much is happening all at once it is so hard for me to describe ALL that I am feeling. I should probably write all of this down for the doc I am meeting for the consultation?

I AM SO SCARED!!!! I HAVE A LUMP IN MY THROAT AND I FIND MYSELF CRYING SO MUCH. I HAVE NEVER HAD ANY KIND OF SURGERY.


Abbie

Except for the freezing part, I have been there known that. Print it out. You have already written it. Take it to your doc with you. Let them know what is happening to you. There is a reason. Diagnostics CAN reveal, maybe not right now, but soon. Convince doc you have GOT to have some relief. My God, how I tried. Then the screaming came, the rhythmic so closely spaced spasms I thought I was going crazy...... screaming..... then things began to shut down...

IF and only IF doc believes clinically through diagnostics there can be a cause demonstrated and thus recommends to you treatment which may help, THEN and only THEN is there a discussion about scalpels. Surgery is usually not the first course on the menu.

This may ring hollow right now as you are feeling so desperate, but we ALL CARE what is going on with you. Just a while longer, and you can take that printout to your doc. Let them know. Take your spouse, significant other, SOMEONE with you who can vouch for what has been going on. Was there a reason why my wife went with me to all of those appointments besides that I was in such pain I could not drive? She was my witness. She could provide credibility. I was never and am not now a surgery junkie.... they do exist. But, by the time things were shutting down she PUSHED and got me in. I was too busy screaming.

Hugs beyond measure, prayers beyond understanding,
Mark56z

At my last appointment I told my Neurologist that I wanted to call him and beg him to cut off my legs...that's how bad the pain had been.

Right now I want to crawl out of my skin!!! All of it!!!! The temp outside is 57 F. It's supposed to get down to 49 with a small chance of rain.

Oh how I love what the weather does to my body.... NOT!!! I feel like a freakin barometer.

I'm covered up in a sheet, a double fleece, and a down filled blanket....and and holding on to another fleece. === still freezing.

I am heading to bed... sweet dreams to all

Abbie

Oh, my friend, that is not the answer. Believe you me when Cleo and I were wondering what to do with me, we even ASKED my physiatrist "can't you just go in there and CUT the stinking nerve bundle?" He let us know that while he Could..... I would be reduced to using a wheelchair forever, oh, and there was the thing about phantom pain that he taught us [of course I already knew due to my Sis Terri] even with cut nerves or amputations that will not necessarily shut off the neural memory of the brain. It has learned a LOT about pain from that region of the body.... a Lot!! It would be more likely to broadcast that same signal than not if we were to take out the nerve......

Same with you, you know. So, you have been given an opportunity to contemplate the SCS possibility as a means to manage pain at least to an extent. One thing I figure, is that my body will ache forever.... Forever! There is a great big BUT in there though, and it is my Boston Scientific SCS. That hummer has worked for me, and does work for me. Does it Always manage All of the pain? No. But it allows me to manage LIFE again without pain meds and I tolerate the balance. Am I a wuss and the pain was not really all THAT bad? Well, my thread chronicles that story, and I know full well when I drop the signal Way down, that BURN is right there where it has been since it first manifested and every bit as bad.

So Abbie, please give thought to your doc's discussions with you. Think about possibilities. Contemplate blessings. Count what you DO have and ponder whether it could be better if your doc was allowed to help you if it is suggested that the possibility is available. No, there are no guarantees at all, and some of those helps do come at a price and some more pain.

I am just trying to give you food for thought. Trying to take your mind in another direction for a while..... provide a diversion.

As sure as my word, I am praying for you Abbie,
Mark56

I'm so sorry to hear that. I too have begged my doctor to amputate. Since I get my treatment at military hospitals, it's very disheartening to see amputees walking around with their new legs while I'm still stuck in a wheelchair. (Please believe that I'm NOT saying I'm worse off than them - so very not true!)

I've been reassured, though, that amputation will not do anything to help with the pain and will likely make it even worse, if possible.

I'm getting the St. Jude's SCS on Tuesday. I've done the trial already & it went really well, so I'm very excited!

I'll be happy to answer any questions about it that I can.

I'm SO HAPPY for you! I know you've been waiting on this for a long time! The trial went off without a hitch, this is great!
PLEASE let us know how it goes with the permanent!

Rae

Thank you! Yeah, I'm really excited and nervous at the same time. I guess we'll soon see!

Soon you will be there! May all go well for you in the permanent implant. Especially since you learned amputation is not a viable remedy for the pain, you will still now have your limbs which should be responsive to you once the effect of the stim becomes fully useful to you. I can now ambulate, albeit with use of a cane due to my permanent nerve damage.... but, you know what? That is something I could not have had prior to the implant. The pain was just too great.

Praying that angels watch over you in your procedure and that through your implant you are blessed as I have been.

Prayin,
Mark56z

I too remember being so desperate for relief that I mentally pictured myself hacking off my legs with an axe ....... also I asked my Dr about getting the sympathectomy to permanently sever the nerve bundle that led to my legs from the lower spine.

It certainly does become a stark reality for one who's pain level is that high - constantly. It's the most helpless feeling in the world, aside from contemplating ending it all (I was there too)

Something HAS to give! It just has too, Abbie.