NeuroTalk Support Groups - My story so far!

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- - My story so far! (https://www.neurotalk.org/scs-and-pain-pumps/130974-story.html)

Quote:

Originally Posted by Jackiey (Post 688095)

Hi everyone

Im writing this as I lie in my bed in a house that is oh so quiet. The day outside it wet and miserable and making me feel somewhat fed up today!:( But grateful that I have come this far.

I was an ordinary working housewife back in early 2005. My husband is a loyal caring and wonderful man and we were blessed with 3 beautiful daughters and 1 beautiful son, all of whom Im very proud of indeed. They are wonderful children who have looked after me along with their dad even in my darkest days. We are also blessed that one of our daughters, our youngest, has Special Needs. She is a wonderful young girl and a blessing to have in our home. So out life was fantastic, idyllic and happy.

Then out of the blue my legs hurt then my back hurt and in one foul swoop I couldnt move or walk. I was sent to see a fantastic Spinal Consultant who whipped me into hospital straight away and removed a disc which was pressing on my spine and nervous system. I had the burning, tingling, painful symptons which of course would be gone once the dreaded disc was removed! WRONG!!!! now that didnt happen.

I continued to have endless epidural needles inserted into my back assuring me each time I would be ok. But alas each time was as bad as the first time with no relief. This carried on until the end of 2005 when I started to also have stomach trouble. I was admitted for tests only to be told I had a low blood count (8) and that I had gall stones to boot!!!!.......I was scheduled to have a spinal fusion in early December L4/L5 only for that to be cancelled as I lay on the theatre trolley. I was devastated. I was sure this was going to put me on the road to recovery. By now I had lost over 45lbs in weight, not a lot you might think, well I was only 135lbs to start off with. I began having awful thoughts , I was crying all the time, I couldnt accept that I was now a delapadated woman and nothing was working.

In early Jan 06 I was rescheduled to have my Spinal Fusion done. I was now in the depths of depression, however, I didnt realise it then. I lay in my hospital bed with my morphine pump at 4am wishing it would all just end and my suffering would be over. I couldnt eat, sleep, think, or even care. I begged the Consultant to let me go home to my family where I knew I would get better in their care.

After being at home and eventually having the strength to walk and try to get back to some sort of normality I had to undergo another Spinal Fusion in June 06 at level L5/S1. OH how I hated going back into hospital. This operation again didnt help. I was now worse off that I had been at the very start. Now I was having all sorts of pains shooting down my legs and across my back. I was on a coctail of tablets and medications that I didnt know whether I was coming or going.

This went on for another year when I just asked my Consultant to TAKE OUT the metal in my body. I didnt find I was having any benefit from it being in there I WANTED IT OUT!!!
So in Aug 2007 the metal was taken out. I continued to 'live' my life.I couldnt do anything. I couldnt be a proper wife to my husband or mum to my children. They were rallying around me. Life just felt so bleak.

Soon I was referred to the Pain Management Clinic. I was told that basically all they could do was try to manage my pain. I was so sad to hear that after all I had been through that this was it.

I had various new meds, rhizotomies, spinal block injections, epidurals, lignucaine and ketamine infusions, Lidoderm patches....you name it I had it all to no avail. Then my Consultant mentioned the SCS!!!!

This was my light at the end of the tunnel, this was my haven.
So I went through the rigerous tests and psychie tests to be told, NO your not mad, your in pain.

I was scheduled to have my trial done in April and oh how good did that feel. I had it for a few days and I felt wonderful, relaxed even. It was great I WANTED IT NOW!!

But I was told I had to wait as my Consultant was away thru June/July so it would be August before I would be implanted. Can you imagine how I felt, that after 5 long years there was finally something to help me AND I HAD TO WAIT nearly 3 months.

Well during that time I became a nana to my first granddaughter, which was wonderful and took my mind of the waiting.....

So eventually on the 5th August that day finally came. Im now 19 days post surgery. The SCS is doing some of the work. It does need some tweaking here and there and I want to have it TURNED up so that I can get rid of some of the horrible sensations I have at the back of my legs. But so far Im being optimistic.

Ive read lots of your stories here on this forum and Im encouraged that this is what Ive been waiting for all this time.

I used to wonder if there was a GOD up there watching over me. I have always tried to be a good person and to have to endure all this pain I have found it hard to keep believeing. Even though HE sent us a beautiful daughter with Special Needs I do at times feel , well we were picked for this as we are strong people, we can do this.

So now as I type here this morning, after sharing my story, I realise that me being fed up this morning, Is NOTHING , compared to that awful depression I felt back in those dark dismal days. You know I often say, oh I feel a bit depressed today, but hey, thats not depressed thats just a 'down' day.
I hope that my story is of some benefit to some people. You know during those dark days there was no light at the end of the tunnel, but today, yes there is. I know that Im on the road to recovery. I know that I can turn my life around and try to be more active and get on with this wonderful life that GOD has given me.

I pray that you all will get to a stage where you too can be grateful for the wonderful life you have and that your pain and suffering will one day be pain and suffering of the past!!!!

Thinking of you all

Jackie :grouphug:

I am getting depressed from this nerve pain in my legs and hip, when I first get up in the morning the pain is so intense, I am getting ready for spinal fusion and I hope it take some of the edge off my pain

Quote:

Originally Posted by msmarilynjane (Post 729524)

I'm so sorry about that wretched nerve pain! Oh how I know!
The SCS is known for it's high success rates for neuropathy, especially in the legs.
I sent you a message on your visitor page.
I hope you are feeling at home here at NT!
Holler if you have questions!

Truly Caring
Rae
:hug:

Hello

I too am sorry about this dreaded pain you have, it most definitely is not nice one bit. Where are you having the fusion , mine was L4/L5 & L5/S1....I didnt benefit from that surgery at all...but we are all different and I hope that it works for you..

As Rae said yes, the SCS is great for the nerve pain in your legs. It is definitely helping my legs a lot, especially when Im sitting down and lying down.

I hope you find some answers here on NT as there are a great number of truely inspiring stories and positivity.

Take care

Jackie:hug:

Here is hoping and praying that your fusion handles all you need to have addressed. My lumbar fusion did ultimately so help with the BACK pain which seemed as though it would kill me, but the nerve pain persisted and persisted, ultimately leading to SCS implant with which I am fully thrilled!

Prayin your solution is found and that it is the best for you,
Mark56:hug:

Havent been on for a few days as I am having a few up and downs lets just say!!! Am hoping to get to see my Rep soon, Im ringing on Monday, and see if we can get a session in soon;)
I have to wait to see if my Consultant will be doing anymore implants as thats when the team/rep come over from the UK etc........ I do need a tweaking session!!!

Hope you are all over the Christmas holidays now and looking forward to a painfree/painless new year too...... I know I am!

Looking forward to hearing how Tara gets on today, I do hope she has some good news to tell us!!!

Jackie:hug:

Quote:

Originally Posted by Jackiey (Post 732490)

:hug:Jackie, I am sorry to hear you are having ups and downs again. I hope that you get your tweaking session in soon ;) I am doing better each day especially now that my stim is charged up and working again! It is not helping my back pain but it does cover the legs again and that is a HUGE blessing! I am going to have to get reprogrammed too though because they really changed my settings around and I lost my good ones :( but there was a lot going on in the hospital when they were trying to use it and I was in so much pain/out of it half the time so I am not mad about it. I also think my back is going to be bad for awhile because of my incisions since the dr said it would take a couple more months for things to heal up. I am just grateful to have relief in my legs again and be able to walk around and do normal things like cooking, dishes, and playing with Gigi ;) I hope that you get to feeling better soon and thanks for checking up on me! Take care of yourself and as always you are in my thoughts and prayers :) :hug::hug::hug:Tara

Jackiey, so sorry to learn of your recent ups and downs. Here is hopin and prayin that you do get that consult set up soon so you can find out whether a tweak to the program would do you good!

AND Tara, good to know despite lingering surgical pain, you are really noticing the benefits of your surgery in the legs, allowing you to do some regular things once again.

Winter wonderland here in Colorado for the next few days, expecting a foot of snow. The ground needed the moisture!

Best to you BOTH!
Mark56:grouphug:

Thank you Tara and Mark for you good wishes. My Consultant wasnt back this morning so Im hoping to catch up with him tomorrow......

Great to hear that Tara you are getting the relief in your legs, how fantastic!!! Im delighted for you that you are up and about, brilliant news!

Mark a foot of snow:eek:now I know you are old hands at that amount of snow and 'digging' out etc:D but to us thats a MAD amount , although having said that in the past couple of months we have had as much ourselves...how odd is that!!! :D Well I hope you wont be 'digging' out if you do get snowed in........;)

More tweaking a coming!!! ;)

Well I got speaking to my Consultants secretary and she tells me that the Rep from Ans, my SCS people, will be coming over from the Uk some day next week. After confirming this with the Pain Clinic I am now awaiting a date and time, hopefully next week, for another tweaking session.

I fiddled around last night with some more of the 8 programmes I have to date. I generally only use no. 2 as I found that the most helpful. But lo and behold I tried no. 6 last night and fiddled around with the settings and I got the sensations in my legs WHILE IM ACTUALLY WALKING!!!! ;)so very pleased about that. Now I need to get that again in another programme but that I can have a middle ground, ie low but not too low and high but not too high but somewhere inbetween that would be comfortable...so fingers crossed:)

At the minute I have a stabbing pain in my butt:eek:has just come on me over the past hour!!!:confused:dunno what it is as I havent been doing anything different today. My granddaughter was over with her mum and we sat and chatted so I was relaxing most of the day!! so hmmmmm not sure whats up now.. Have turned up my stim now and its 'nearly' covering the pain.....so a couple of pain meds hopefully will also do the trick!!

Hope you are all keeping well and relatively pain free, if not altogether.....

Jackie:grouphug:

Hello Jackie!
I'm SO glad to hear you're gonna get some attention to your programs!
Maybe write down the ones you found (#6) to work good, so hopefully they won't mess with those programs.
And when he's working with you at trying to get that 'middle ground', walk around as he's messing with it. Lie down for another one.....sit, etc...
And then maybe have them print off your settings, so you'll have them in case you need future tweaks and a different rep is there.....The print off can serve as a 'back up' to your settings you've worked so hard to achieve.

Oh how I hope you get what you're looking for!!
You've waited so long.

I wonder what that stabbing pain is that you are experiencing!
Always SOMEthing new for us 'Nana's' !! :eek: ...... My grandson keeps me on the straight and narrow tho. I liked the way you worded it, that the pain somehow slips to the 'background' when we are with our cuties! :)

Anxious to hear an update!
Rae
:hug: