Let me be Me Community Group
A support group for those of us that need a safe place to share what ails us. Or what doesn't! This group is your group so you can be the person you really are, no need to pretend, no need to create some successful cyber image. Whether sharing our trials and tribulations, or our success's in life. Whether in sadness and needing comfort and support, or just...
Any idea yet if that thing is going to do you some good?
Luv n hugs..jc
Luv n hugs..jc
Love and Hugs "Shoes"!
Point is I'm afraid to say anything.....I'm taking this real slow after Ketimine Infusion gave me three days pain free, then back with a vengeance. That messed me up. The deal with that was the theory that the infusion may break the " alert" message to the brain. Well it didn't and I really had a bad flare prior, so thatbthree days were so incredible my hopes were up and the crash of disappointment was huge. I felt very vulnerable.
So, my apprehension to talk about this current " trail" might be understood? I don't know, I just feel scared. I have to answer questions about the program ajustment each day, and I think to myself.....ok, but ...
OK....by now you have figured out, I'm apprehensive!
I better explain because I have the leads on the outside, a wound on left higher but cheek, a wound left side above hip and another right side of thoracic spine....all of that makes me very sore fore a start, I can't get comfortable. My neck is fused and plated so finding a comfortable resting position is a bitch in itself!
I am finding relief however in some areas from the stim. No doubt about it. But also I can't move around too much or do much to really test it, ( in my mind?) weather fluctuations have still been effecting me and I'm only down one med. But.....as I said the cuts/ wounds are very sore and causing me to try to put my body in positions it is not used to.....
My situation is that I've had two lumber spine surgeries and one cervical. Cervical surgery last year gave instant pain relief in that area.....my arms do get weak, but no pain! :)
Lumbar...first surgery result of car accident, multiple problems, but I was young, they fused L3 to L5 I recovered well and looked after myself, swimming etc...was blessed and got on with life.
2004 had a fall whist renovating at my home.....landed on floor from 1.5 story stair over the side! Not good!
Resulting eventually in surgery as I had fractured above and below the lowest lumbar fusions. They fused L5 to S1 supporting the lumbar area with rods and screws from L2 to S1......... At first it seemed this was successful. I was careful in healing time....but was very restricted with movement ...pain was progressively worse. Upon X-rays my Neuro declared it failed spine surgery....it happens.
So, back to meds and trying to cope. Very restricted life. Then 5 years ago it was suggested I try the Boston Scientific SCS .......I did, I found some relief....I agreed to the implant and all seemed a bit better for about four years on and off. In time as my neck became extremely bad, I was also experiencing server burning in the bottom of my legs. I started a diary on everything I was doing wondering how the hell this could be happening. At first the Dr thought it was because of my cervical problem, but even after that had healed these horrible episodes with my legs continued, along with the problems of the failed spine surgery.
I was at my wits end! I kept getting the SCS reprogramed, but it was becoming clear that it wasn't having any effect and maybe making it worse. I turned the stim off.
Then other episodes started occurring ....pudental nerve pain that was unbearable, trips to emergency room due to urine rendition ..scary suggestions of CE syndrome. They couldn't do MRI due to implant.
My pain was now completely 100 per cent my life....constant. I tried everything suggested, the list too long.....
Any who! To now.......PM doc tells me of new SCS developed through Mayo Clinic. Nervo Sensa SCS.
He explained it was still experimental but had a patient with pudental nerve pain that had found a degree of relief that had enabled him to get a substantial life happening. No, this Man did not have my surgical history, but if you have ever experienced pudental nerve pain.....I think you would understand one would try ANYTHING for relief. Coping with the other pain and the Pudental nerve pain was sending me to the darkest place I've ever been.......
After experiencing the three days during the " ketiemine break" / infusion......my HOPE for a Mirical was sparked. I was desperate .....
When my PM Doc suggested I trial the Newest and Greatest! ( his words) stim. I decided I had nothing to lose.
The BS SCS wires were cut. At this " trial" stage I have the BS SCS still implanted. The Trial wire for the Nevro is placed higher than the BS wires in thoracic spine. It is stapled around my waist with control trial unit. The program is changed each day vis instruction over the ph that I can do myself. The Nevro works on the highest frequency made in this type of SCS. It can not be felt like the BS ScS.
I'm aware of the change in pain relief when the program is changed. I DO believe it is helping.
I hope after reading my history, you will understand my reluctance to declare anything as " successful " at this point.
They will take this lead out on Wednesday and connect the disconnected wires from the BS stim to the trial box of the Nevro to see if I get even more coverage....or I might decide this is as much as I can cope with!
Understand, I'm weighing up everything here. I think at this point I will go ahead with the next part of the trial.
My bowell is now working as is my bladder, I'm afraid too much might over do and I will get burning pain that now SCARES me!
I will discuss all of this with the Dr on Wednesday, I have the option to just stop, take everything SCS out, or continue with the next two leads as further trial coverage, or be satisfied with the relief I have now and finish the trial, let everything heal and proceed in 4 weeks to have BS stim out and Nevro stim implanted in it's place! Shit, I'm exhausted! Do you understand how confused I feel?
I'm afraid in one way to go for the further coverage and afraid I could be losing the last shot I have at further coverage and less meds!
Thank you ALL for caring taking the time to read this RAMBLE!
The looks on the faces of my family of HOPE to have me back with less pain and more mobility, even the slightest improvement......well it ....it, makes me want to try anything! But I'm scared, I'm tiired....I'd love to soak in a bath!( sponge baths are NOT enough! ) ;(
Well, that is about all I can explain for now as I understand it to be.
Love you all! Lisa x
{{{{{HUGS}}}}} for healing sent your way!
That breaks my heart for what you have and having to endure.... Can only Wish, Pray, what ever I can to get you Sparkly.... So hope Wednesday's appointment can give you some hope...
Love you Sweet Lady.... Huge but very gentle Hugs... xox
Wow..what decisions to be made. What a long hard road.
I understand your fear..
Especially that look of hope from family that you don't want to be disappointed.
And the pain.
Thanks for the update.
( I don't expect you to have answers for us that you don't have for your self, hun..
Just want to know how you're doing.
Not just physically.
Luv n hugs..jc
Hugs Hon from down under.
Can they allow you to take things at a slower pace? Leave the BS stim in place without turning it on or removing it? Can you make the decision to add new leads to your new stim to extend coverage later? I guess what I'm saying is.....you've hardly healed. Can your doctors make your new stim permanent without having to add or remove anything.....just let you fully heal and recover?
Then you can make decisions as to what you want to try next?
But to answer your question......yes, I can understand your fear, your apprehension. I wish I could be of more help. Please know you're in my prayers.....I'm thinking of you. I'll be here for you if you need to talk.
Hugs, love and prayers!
Deb
This will be for another week. Deb, I know what you are saying about healing, but this wire has to come out before scar tissue sets in. My Pain Dr is in our Town tomorrow, usually for procedures I have to go to our Capital City and hour plus away! I see him here for regular appointments ....... Deb, it wil be one step at a time, thank you so muchbfor reading my ramble...I really did need to get that out! Hugs and prayers right back at you! X
I appreciate you making the effort to share it.
I can't write out my Med history like that..too twisted and convoluted..
But..you DID! That takes a kind of strength I don't have.
It's as I've thought since we first really started becoming friends..
you ARE a strong woman.
I know you don't always feel you are, because the pain is so ass-kicking...
But..you're still kicking back, aren't ya?
Luvnhuhs..jc
Thinking of you n sending wishes for answers,relief n Hopes.....
Sparkles n Hugs.... xoxoxox
Deb
Well.....things went OK today! It must have been all the advice and strength I had with me from you guys! Toni holding my hand, Seek had the sparky Rope!, Steva was working a Miricle, Pauli made me "still"my Soul, and trust myHeart!, Deb had me believing I was Strong, Jan reminded me that I was fighting back, helped my perspective, Hippy, my Twin was traveling with me, sending the " force" to Be with me too! And Sis reminded me ....one step at a time, then indulge in a box of chocolates ! Well, I'm home, ( it was a day stay procedure!) I'm in bed, eating my box of chocolates feeling pretty dam proud of the peaceful way I got through the day!
One wire was taken out of Thoracic area, and the two existing wires from the BS unit are hooked up to the "trail" pack control unit. They moved it to the opposite side so I could try and get more comfortable! So the " trial" continues for another week. I need to rest now. But please know I really believe without you Guys, I wouldn't be feeling this strong or supported! My dear Husband, said I looked beautiful when he picked me up and held my hand in strength. It made me cry. This is my Sanctuary, thanks for making it that way! Xx
Great guy you have !
Rest and get better and better Hon!
I so hope you are okay now and that this will work out for the better.
Just thinking about you, hope the latest appt well n, the new stimo is tuned and helping...
Hope your healing up OK.....
Huge hugs n healing sparkles xoxox