[emily24]

Hi everyone!! i've just dicovered this forum its fantastic!!!
I'm really looking for other ppls experiences with having a SCS.
Here's my story: I'm 24 years old and have had chronic pain in my right flank just below my ribs for roughly 3 years now. The pain is caused by my kidney which is scarred and has a reduced function due to renal reflux from when i was a child. I only found out i had a problem with my kidney 3 years ago when i was hospitalised with recurrent kidney infections and they did a scan which showed my right kidney to be half the size of a normal kidney (sorry its a long story) Anyway after numerous tests and poking and prodding my renal specialist said that he could do no more and he wasn't happy with removeing it due to the fact that it still has some fucntion. I was referred to a pain specialist who proceeded, over almost a year, to do nerve block after nerve block (8 in total) none of which gave me any relief. I've been referred onto a new pain specialist now who is sending me for a SCS. That is pretty much all he was able to tell me! 'yes emily i'm sending you for this, no its nothing to worry about' (his exact words!! the consult lasted a whole of 5 minutes during which time he poked me in the back with apaper clip saying 'yes you have an area of hypersensitivity there alright!!')
My SCS trial is due to go ahead on Nov the 18th. I have another consult with my specialist on Sept 28th which i made myself as i feel so unprepared for this and wish to have a proper talk about it with him but i want to be prepared which is why i'm looking for your opinions and expereinces on the SCS.
ps sorry about rambling on and on!

[Mark56]

Given your specific area of pain and the consequent question that just has to leap from the mind to be spoken, the consult with the specialist would need to be based upon what nerve bundle the specialist would plan to address so as to target the flank over your problem kidney? I, for instance, have unrelenting pain from lumbar spine throughout the legs, so my specialist targeted T8-T9, thus producing a nerve result which hits me at the waist and below. The consequent benefit has been fantastic. In your case you just must be curious which nerves the specialist will target to address your specific target relief zone.

Next, a good many of your friends in Ireland have received Medtronic units which either due to its function or placement [ not to say its construction ] have since shown themselves to be of little to no assistance. Also available in your part of the globe is a unit by Nevro which produces no side effect sensation while disrupting the pain, and the St Judes ANS EON if I remember correctly [Jackiey aren't you a St Judes patient? I am beginning to lose track]. Giving consideration to Medtronic alternatives would be worth your while, as each unit has its benefits and detriments. No doubt your country folk on this forum will chime in soon [Sinead? Maybe even Jenna?].

So two major questions for your specialist consultant are addressed above, and I hope above all hopes you receive LOADS of other comments from the folk who prowl these threads looking to add experience, wisdom, and care.

Prayin for ya,
Mark56

[Rrae]

WELCOME to the forum! So glad you found us!
And from IRELAND! How exciting! We've got several wonderful friends from your neck of the woods

You'll soon see that this forum is like a sweet little family, which is wonderful....especially when it comes to a procedure such as this. It can seem pretty scary when left on our own, but when we all come together to share our experiences, it really takes the edge off.

There is much to read here at the SCS/Pain Pump forum. A diverse group of testimonies for alot of different pain conditions.

There is some very informative stuff at the top of the screen in the section called the 'Sticky's'. Just holler if you need help in finding your way around and don't be afraid to ask questions!

It'll be great getting to know you!

Rae

[PatriciaB]

Hi Emily,

Like you I am awaiting my SCS trial planned for next month. I am so nervous. I have been visiting the NT website for over a year now and find it fantastic. Hi to Mark, Rrae, Jenna, Sinead, Saffy, JoanB etc,etc. I love reading all your posts. I have chronic neuropathic pain syndrome, severe facet joint disease, severe sacroillitis , illioinguinal and illiohypogastric neuralgia. I have chronic neuropathic pain syndrome and had had numerous procedures in the past 2 years---- nerve blocks. radiofrequency abalation, pulsed radiofrequency lesioning, all to no avail.. I have had to give up work and now live with many limitations in my daily living. Medication leaves me with a foggy brain. My consultant plans to use the Nervo unit. Maybe we have the same consultant.

Best wishes,
Patricia
:

[Mark56]

Originally Posted by PatriciaB

Hi Emily,

Like you I am awaiting my SCS trial planned for next month. I am so nervous. I have been visiting the NT website for over a year now and find it fantastic. Hi to Mark, Rrae, Jenna, Sinead, Saffy, JoanB etc,etc. I love reading all your posts. I have chronic neuropathic pain syndrome, severe facet joint disease, severe sacroillitis , illioinguinal and illiohypogastric neuralgia. I have chronic neuropathic pain syndrome and had had numerous procedures in the past 2 years---- nerve blocks. radiofrequency abalation, pulsed radiofrequency lesioning, all to no avail.. I have had to give up work and now live with many limitations in my daily living. Medication leaves me with a foggy brain. My consultant plans to use the Nervo unit. Maybe we have the same consultant.

Best wishes,
Patricia
:

You have been through much, and I hope as you approach Trial fully informed the very beginnings of the stim application to your many issues will bring peace. Understanding that with the Nevro unit there is no "side effect" tingling or buzzing, the wish for peace from the Trial IS the true objective. My, but our group of friends from Ireland grows and grows!

Caring!
Mark56

[JoanB]

Hi to emily and Patricia! I'm glad to meet you and to have you join our little group. It's sort of like having new family, except that you don't wind up getting asked for loans, and nobody winds up sleeping over because they're in their cups at your holiday dinner. Or at least this has not happened to me...yet.

[emily24]

Cant tell you how good it is 2 know that i can talk to ppl who have been through or are going through the same as me! its such a relief 2 have ppl to talk to about it my own family and friends are brilliant but it feels sometimes like i'm speaking a foreign language when i start on about SCS and nerves and dural spaces!

I've done so much reseasrch i'm hopin to be fully prepared for the 28th of sept when i'm going up to chat 2 the specialist and hopefully i wont be fobbed off with platitudes! I cant believe the last time i was in with him i didnt even get a brochure or anything for the SCS my head was just so fuzzy trying 2 take it in!

How is everyone keeping? what stages are ppl at with their treatment? How have people found it?

hope you are all keeping well!!!

love

emily xxxx

[Mark56]

Emily, in a word, I am delighted! The SCS has worked in my specific situation so as to re-enable my entry into the workplace, something for which I have prepared with great diligence as I fully want to support my family once more.

My career was stripped away with the pain I endured after a serious car wreck and I now feel fully capable of making that step back into an office environment. We are now in final negotiations regarding a position which will most assuredly provide the proof whether my body is up to it........ but I have been very much into the hardening of my body, mind, and spirit toward reaching the goal. Spoke with my physiatrist/pain doc yesterday and he was ecstatic at how I present myself and says basically "you on your own initiative have done the work necessary to harden yourself in preparation for work!" He was a smilin as we ended the appointment.

I know I am only one example of a patient on the continuum of folks who have been there done that, so you plot my experience far to the side of successful implant and there will be others with experiences who fall at various places on the continuum, all of the way to the far end of unsuccessful and have to go through removal of the system. GREAT importance is found in the efficacy of the TRIAL implant which SHOULD last a week as it does here on the far west side of the pond- while I understand in Ireland, Trial occurs for as much as a 24 hour period. In my mind, due to the NHS so much emphasis is placed on minimizing expense that Trial is NOT allowed to remain effective for sufficient time to determine whether it is truly effective. Fight for a longer TRIAL if you can. The proof is in the TRIAL, not in the rapid permanent implant of the NHS system.

CARING and CONCERNED from Colorado,
Mark56

[PatriciaB]

Mark,
I agree with you that the trial should be as long as possible to enable one to make a well informed judgement of its effectivness. I think that mine will be over a week long. It will be hard not being able to shower during the trial but I am sure that I will get over that inconvenience.If I stink, so what!!!! Please God it will help me. I so want to be able to invest my emotions in life rather than in pain. I am tired of having pain as my constant companion. It has taken me 10 months to consider all aspects regarding surgery. I nearly freaked out when the consultant put it bluntly to me last November. But I know now that I cannot go through my life wondering "what if". I must try it. It does worry me when I read many peoples' experiences that are not very positive. Your story, Mark, inspires me. Of course many of my family and friends who have little understanding of living in chronic pain are the first to try and put me off.

Jenna,
I am so sorry that you have to have your SCS removed. I pray that the Nervo will bring you great relief. I read somewhere recently that it melts pain away. Let's hope so.

Have a good weekend everyone,

Best wishes,
Patricia

[PatriciaB]

Sorry Jenna and Sinead. I got you mixed up. You two are such great pals. It is you Sinead that is getting your implant out.

Jenna, I know how difficult things are for you. You are so brave and resilent. Remember that the darkest hour is before the dawn.