[Sophie_]

Hi guys,


I went to see my Consultant last Wednesday and he has decided to take my Medtronic out. I'm probably just as bad or worse than I was when I first saw him, last December, I've been in so much pain these last few months, he tried revision surgery but that didn't work. I'm truly in so much pain, that I can't concentrate, I can't sleep properly because my nerves are twitching so much, i'm just not getting enough quality rest. So out with the old and in with the Nevroe, after the Medtronic he will do a MRI Scan, if necessary I might have to have spinal surgery, he didn't want to predict what that could be but a fusion is in my mind! Then have the implant put in... I swear to god I feel like i'll never get there, and as for the time frame... it could be anything between 6mths to a year because he has to do it on the HSE and not through my Health Insurance as they paid for the Medtronic to go in.
I am wondering if I want to have two major with the possibility of a third, the General Anathestic effects me something terrible. Can I go through more of this frustration after surgery. Then will it work, will I find myself in the same place this time next year with the same problem not knowing what to do. All these thoughts go through my head and yet I know there is no way out except through!

Yesterday before going to see the consultant I had no idea what he was going to say, he could have easily said I've done all I can for you and that's that, just as other doctors have said over the last 4 years but nope, he knew exactly what needed to be done and how it was going to happen. I trust him alot, he's the first doctor i've ever met that I actually trust and that I have confidence in and i've seen many idiots over the years that are more interested in playing golf, nice cars.

My hubby showed the Consultant a recording of me sleeping and my arms, hands and legs going every which way and then he said it was no wonder that I was so tired when I am so uncomfortable and restless. I have some time to mull all of this over and get my mind around it all. I don't know how I feel about it, I don't want to take the risk but then I know I have to because I don't want to be left in pain wondering what if....

He also changed my Meds, it's a new drug, I only started it yesterday evening so as yet I don't know how it makes me feel, i'm certainly not feeling drowsy or sick but my tummy was a bit upset today and it could very well be the meds, then again it could just be.

So that's my news, it's enough me thinks!

I look forward to what you guys think, i appreciate any advice that might comes my way.

Love to all,

Sinéad xxx

[Mark56]

Ah...... dear Sinead-

I sit here hands no keys wondering, how can this be? Knowing as well, the credibility of video evidence truly helps doctors who so often try to sift through the implications of spoken reports. We took a video in for our son's psychiatrist to view at one point, and it spurred true and helpful action vis-a-vis his situation. It truly enlightened him, as I am sure Paul's video of your lack of rest did for your consultant.

So now you await the HSE to time the next step. Makes me so SO nervous about the Obama/Congressional mess we have here especially when her "lowness" Rep Pelosi the Speaker of the House at the time said something to the effect of just pass the legislation and READ it later. That kind of political lunacy has set me into a frame of fire everyone and start over with a tea party mentality [and I mean everyone].

I ache for you waiting at the mercy of state medicine for the timing of what must come next. I have had back fusion with screws and rods, and I thank God for this, because prior to the surgery I was screaming constantly from the pain, as you know, though the fusion did not bring an end to my saga. If you require some surgical help to address the mechanics of your spine, may it be done with such precision as to leave you fully prepared for the following step of a Nevro implant [the next step your consultant presented]. It took a good six months for me to heal from the fusion before diagnostics revealed the next steps in my situation. I write this not to frighten or alarm, but to steel your mind for the process however it unfolds in your situation. At the very least, removal of the Medtronic and the mechanical work on your spine should be able to be accomplished in one step so the healing may occur preparatory to the re-implant of some then far better SCS technology, whatever it is at the time.

In the meantime, meds should be prescribed for you to both manage your pain AND allow more restful sleep. The meds are sure to affect your mental acuity but be able to help you endure the meantime.

You and Paul are both very much in our prayers!
ZZZ abundant,
Mark56

[Sophie_]

Hi Mark,

Thank you for your kind words of wisdom, I had forgotten that you had all of these surgeries, did you know at the time of your fusion that you would have to have more major surgery to fit your implant, I imagine that it was taken one step at a time, analysing as they went. I wasn't surprised when he suggested it, saddened because it didn't work. I've been in such terrible pain of late.

I've heard that Obama is trying to put some sort of Public Health system in place. Even though it doesn't work properly here or the UK, it's better than nothing and it allows people to gain treatment without having massive medical bills to pay for the rest of their lives.

I've to meet with Pain Management Clinic people in two weeks and i'll have a few more questions for my Consultant, about success rates etc, how likely is it that this implant will fail on me too? That kind of thing.

Chat soon,

love Sinéad xxx

[Rrae]

..... speechless.

I am ever so sorry to hear about this. My heart sank when reading this.
I hate it that you are living with the horrible pain and that the answer isn't in plain view yet. Why oh why does it have to be like this.
Whatever it takes to keep you as comfortable as possible, I pray that you can somehow rest and find peace and hope to hang on to.

I pray that your doctor stick by your side and give you the best possible care you can get. He seems like a very good man and his heart is in this.

I know this is a huge setback for you Sinead..... please hang on to God and keep strong. We are with you every step of the way - you know that.
We always will be

Love to you
Rae

[Mark56]

Dear Sinead- Going into my long history of surgeries since the wreck..... all 28, I learned each was a careful step in hope the issues would be addressed without the need for more. The 6 January 2006 first deep invasion of my spine for discectomy/laminectomy/fusion was emergency and related to my body's descent into cauda equina syndrome as my body was shutting off every thing below my waist, even elimination while the pain was so so horrific that all I could do was scream myself unconscious [holding a pillow to my face to muffle the screams for my family]. You know the rest of the story from there, that ultimately with the spine corrected, the nerve was nevertheless permanently damaged... leading to more surgeries and at last the bliss of SCS implant. Oh my dear friend, I hope your path on this road is shorter than mine, that your handling of pain is easier, and that your doctors focus on YOU so as to relieve you as quickly as possible.

Prayin mightily,
Mark56

[Sophie_]

Dear Mark & Rae,

Thank you both for such kind words of wisdom and support and I've a feeling I'll be needing lots more of it.

Chat soon

Love and God bless, Sinead xxxx

Sinead I'm sorry to read this post this morning.

I have to say that I'm reading thru your post and I can hear a voice shouting inside me saying NO, NO, NO..............

Why would you have to have spinal fusions at this stage????? wasn't this all tried BEFORE you had the SCS implant!!! The SCS was my last resort!!!!

I'm sorry for sounding so bad but I went thru the agony of two spinal fusions at different times and all I can say is it's absolutely no picnic. Like Mark I don't want to frighten you or cause you worry but after my ops I was ten times WORSE than when I first started complaining about my back. That's why now whenever I hear of anyone needing surgery or thinking about it I always always say to them that hindsight is a wonderful thing. Because if I knew then what I know now I would never have let them open me up at all!!!!!
When after a year it was realised that the fusions were of noooo benefit to me the metal rods and screws were removed as they too were causing me discomfort!!!

It was at this stage that they too realised that surgically they could do no more and from there I was referred to the Pain Clinic and the rest as they say is history!!

This post might seems negative but I just wanted to let you know what it's like and it's not a decision that can be taken lightly. I know you trust your Consultant as I did mine, but it's more surgery and from what I've read in recent years not always a successful one.

I'm still confused as to why you would need a fusion at this stage, would it not be wise just to go ahead and put in the Nevro system or is your Consultant just 'filing in ' time before the HSE can pay for your next SCS!! Just a thought.

But whatever you decide Sinead I pray you get the relief you deserve and that you and your Consultant will come to the 'right' decision.

Take care and sorry for the long post

Jackie


Obviously you want to try whatever they think might help but this is major surgery and it has a long recoupment time.

That last line of my post is out of sync oooops. Can't delete it on my iPad. So just ignore ok.

[Sophie_]

Hi Jackie,

Thank you for your reply, this is what I need to hear. You are right that they considered a fusion before and because it was so extensive at 4 levels they decided against it as like you said it's of no benefit, with this in mind I too decided that I would never have that kind of surgery. I guess they won't know what to do if anything at all until after a MRI. Personally I don't see them wanting to do anything at all except go straight for the implant. I think my Dr is covering his own *** and all bases.

All of this is horrible and for me it's like what a waste of time, a waste of horrible agony, all I want is like the rest of us is to feel better!

Thanks again hun

Sinead

[Saffy]

Am so sorry about this. The other day my surgeon said it's either ... take it all out or try a paddle.

You mention Medtronic through a health scheme ... we are with BUPA but the refused to cover it as it isn't a "cure". (I've got Medtronic by the way)

They wouldn't do a fusion as they said it will only spread to the disk above .
Keep your chin up x x x