[KathyUK]

Hi guys

I'm finally getting to meet the SCS surgeon today. I'm nervous because I'm worried he's going to judge me as having gone over the pain doc's head to get to see him, which wouldn't be an unfair judgement.

When I was diagnosed with CRPS, the neurosurgeon wrote to the pain clinic recommending I be put forward for it. Up here all referrals for SCS go via the pain clinic so when they refused to even let me talk to him I was gutted. Their view was that it wouldn't fix all my problems, which was never an expectation of mine anyway. They also saod noone has ever had a successful SCS that they have seen and they say they see every patient as aftercare is their domain. Fair enough but all I wanted was to talk to the guy as he also takes on complicated cases and I thought he might also have other ideas.

So when I mentioned to the GP that the pain clinic had refused to let me see him, he was fuming and referred me directly, which like I said isn't the 'done thing' up here.

So I will come back and let you know what he said. I imagine it will be a no for SCS but at least I will have heard it from his mouth. I am also worried about not knowing what he's watching out for in a patient as a yes or no. But at least without knowing that I can only be honest!

[Brambledog]

Good luck Kathy, that's a tough situation to go into, but at least you will end today with a decision and hopefully some closure on the idea of an SCS. I read a lot about SCS at one point when things were really bad, and I remember one of the criteria they have is that the patient must have a realistic view of the implant and the possible outcomes - I think that's what your doc was trying to say with the 'it won't solve all your problems' remark....but honestly docs can be so heavy-handed!

Some folk who try an SCS have a breakthrough in their pain cycle, but there are quite a few things that can be not so good, as well as some potentially serious risks involved. Only you and the surgeon can decide whether you have a chance with one.

I hope things go well today. Stand your ground, you have a right to ask the questions you need to!

Bram.

[KathyUK]

Eh up Bram! I'm baaack!

He said yes. He said I'm an ideal candidate. There's a lot of work to do in preparation, I have to lose a lot of weight for a start and initially they wanted me to finish the PMP, however I told them I'm doing it individually and that officially I might not even start the group PMP til next May, so instead they're going to liaise with my physio and work out from that when I'm ready as they want me to be "in the best possible place physically and mentally for it".

He said they have some new technology in SCS that means he can actually have a go at hitting the back pain as well as the sciatica, AND he says he often has a problem NOT stimulating both legs, so he is certain it will help me a lot.

He doesn't believe in the CRPS diagnosis but he said he finds it hard to get his head around that anyway and it doesn't matter regardless. I didn't go in there for a "cure" for my CRPS or a miraculous answer to all my pain, I went in to see if he thought it would give me some mobility back from my right sided sciatica. I wasn't expecting anything more and I wasn't even expecting it to be a yes for that. I told him that I had three types of pain - my back pain, my burning pain and my sciatica. I said I was expecting to have to live with the back pain and the burning pain, but he said that this new technology could be the answer for at least part of all of them, or at the very least the sciatica. He said it can go three ways - I could feel the stimulation and it helps my pain, I could feel the stimulation but it doesn't help my pain or they can't find the positioning so I can feel the stimulation in the right area. He said it's very unlikely to be the last but I have to be aware of it, which I was. I said if it helped me even 5 or 10% I would consider that the miracle, so I wasn't expecting too much - at that point the nurse and him both said if it was only going to help me that little they wouldn't have said yes at all.

So, I can't see it being within the next year but I will be doing the trial. Now I have to crack on with losing weight. God knows how but I'm going to do it.

[Brambledog]

Originally Posted by KathyUK

Eh up Bram! I'm baaack!

He said yes. He said I'm an ideal candidate. There's a lot of work to do in preparation, I have to lose a lot of weight for a start and initially they wanted me to finish the PMP, however I told them I'm doing it individually and that officially I might not even start the group PMP til next May, so instead they're going to liaise with my physio and work out from that when I'm ready as they want me to be "in the best possible place physically and mentally for it".

He said they have some new technology in SCS that means he can actually have a go at hitting the back pain as well as the sciatica, AND he says he often has a problem NOT stimulating both legs, so he is certain it will help me a lot.

He doesn't believe in the CRPS diagnosis but he said he finds it hard to get his head around that anyway and it doesn't matter regardless. I didn't go in there for a "cure" for my CRPS or a miraculous answer to all my pain, I went in to see if he thought it would give me some mobility back from my right sided sciatica. I wasn't expecting anything more and I wasn't even expecting it to be a yes for that. I told him that I had three types of pain - my back pain, my burning pain and my sciatica. I said I was expecting to have to live with the back pain and the burning pain, but he said that this new technology could be the answer for at least part of all of them, or at the very least the sciatica. He said it can go three ways - I could feel the stimulation and it helps my pain, I could feel the stimulation but it doesn't help my pain or they can't find the positioning so I can feel the stimulation in the right area. He said it's very unlikely to be the last but I have to be aware of it, which I was. I said if it helped me even 5 or 10% I would consider that the miracle, so I wasn't expecting too much - at that point the nurse and him both said if it was only going to help me that little they wouldn't have said yes at all.

So, I can't see it being within the next year but I will be doing the trial. Now I have to crack on with losing weight. God knows how but I'm going to do it.

I believe you will

That's fantastic news. Ideal candidate! Always nice to hear - I really hope this happens and you get some success with it. I bet the day can't come soon enough for you!

Fingers crossed here. Just cut out the sugar and fat (except good fats, keep those ) and you'll get there - especially now you have a goal.

Whoop!!!!!

Bram

[ginnie]

I know medicine practice is different in the UK. However, I believe patients have the right to see another physician for their own peace of mind. If a doctor tells you he doesn't want you to have a refferal, I would have done the same thing you did. Hope the consult goes OK, and that you get some answers. ginnie

[AintSoBad]

I've always been under the impression, that the pain pumps are more successful than the SCS, but that's a personal decision.
For help with losing weight, try Glucerna, it's a drink for diabetics, and it's helping me take some of my unwantted belly off.
I get it by the case from Amazon. delivered for free.

Wish you the best Kathy!

pete




asb

[KathyUK]

Thanks all of you! I'm not a massively unhealthy eater to be honest, I use olive oil (sparingly or even Frylight olive oil) for everything and am careful with sugars/carbs (although I get really ill if I cut carbs too much). I have been conscious of the GI side of things when I plan meals, in a relaxed way. I lost 4 stones at Weightwatchers, put two back on after surgery and can't afford to go back, so I have to do it myself. Half my problem is I don't eat in the morning at all and so end up cramming rice cakes into my mouth at about 2pm. I don't even like rice cakes. Tea is generally chicken and salad, or variations thereof. I started to lose weight after coming off the Lyrica but have plateaued. I say all this not having weighed myself at all recently and going on the fit of my clothes like the GP said. Now I can't find my scales lol.

The pain pump risks terrify me to be honest but it is another thing I haven't ruled out - difference being it has never been offered. Mind you if I waited round for the pain clinic to offer me anything, I'd be waiting all my life! Each appointment is just a farce now and once this SCS is either done or forgotten about (depending on the trial) then I will kick them to the curb. I can't til then in case I miss out on the PMP and I need that.

[AintSoBad]

Kathy,
I've turned diabetic in the past year and ahalf, and never was big on breakfast (but for cereal), so, have a glucerna along with my insulin in the AM! Weight is coming off my belly slowly, but fer sure!

Hope things go great with you, please, check ALL your options!


Pete



asb

[AZ-Di]

You must be in a really awful way pain wise if you are anxious for the SCS. I have been getting the nerve blocks to get me by (12 in the last 41/2 months). I guess they can't do those forever so I am getting my SCS trial this coming Monday. With the nerve blocks so often I'm not sure where my pain level really is. I guess that is why I'm not so thrilled to get the trial. I still hope for the "magic bullet" of course so I will give it a try. I will try to post my experience on here for all to compare if anyone is interested.
I am really afraid right now.

[KathyUK]

Yes I'm in a lot of pain, I also don't have the luxury of having any other options such as nerve blocks. I had facet joint injections twice that made things worse. Like many others my CRPS is one of a few issues I have, I also have degenerative disc disease, a reherniation of L5/S1 and sciatica that is severe enough to mean I don't have strength in my right leg at all and have had several falls that have landed me in hospital. To top it off I also have retrocalcaneal lumps in both heels which I have been told this week I will most likely need ops on too. I don't even have medication options any more, because I don't have a supportive pain doctor. My options are live with it or the SCS. If I hadn't explored other options to the full then I could understand the negativity but as it stands it's the only thing I've got to look forward to so I would prefer to keep it that way unless someone wants to pay for Dignitas.

On a side note I had my wheelchair assessment (over the phone?!) and she said there is a 6 month plus waiting list. Joy.