[KathyUK]

Hi everyone

Today I got to see the SCS surgeon and unlike my pain consultant he thinks it will help me a lot. He has some "new technology" to work with that he feels could improve my mobility and pain levels greatly.

The 'downside' is that it's going to be a long while before I get a trial as he wants me in peak condition mentally and weight wise. Normally the plan would be for me to be referred to him after completion of the pain management program, but having been referred to that already, I've been told I am getting one on one, which isn't the "official" pain management program. So, in my case he's making an exception and the SCS nurse is going to liaise with the pain management program physiotherapist that I see to determine when I'm ready.

What I'm here for really is for any advice anyone has on preparation, given I've got loads of time and need to lose as much weight as possible? I am not allowed to take exercise classes etc at the moment as I am learning "pacing" with the pain management program so at this stage I have to hold myself back on the physical side. Does anyone know of a "diet" (I use the term loosely, what I mean is guidance on weight loss) for those who can't use exercise to burn fat? I can't afford Weightwatchers and the likes so need to do it alone but having done WWs in the past the support from the group helped me stick to it. I'm quite nervous of doing it without that motivation. Of course the SCS will be motivation!

I'm in the UK and another interesting thing the surgeon said was that while the standard SCS doesn't address back pain, he has some "new technology" available to him that does. Does this hint to anyone what he might be talking about? I wish I'd asked him to go into that more, I was just in shock that he'd said yes after I'd been told no way by the pain clinic.

Thanks very much!

[Rrae]

It's great to have you!
I'm wondering what this 'new technology' is that your Dr is speaking of. I guess this is something you'll be able to research while you are in the process of your pre-surgical conditioning. Drill the doc for details!

Losing weight can be a real joy . Other than the basics of watching your carb intake, no sugar, sweets, etc., that's about all that comes to mind. Others will chime in with some good suggestions.

One thing that popped into my mind is -- have you had your thyroid checked? In my case it was discovered via bloodwork that I was hypothyroid. There's a slew of symptoms that come with this condition, one being weight gain and fatigue.
I began losing weight as soon as I was put on the proper medication.
So, if by any chance your thyroid is running slowly, this might be a means of dropping some of the weight.

You've come to a great place for support, so stick around and we'll be your support team while you endeavor to reach your goal! Feel free to vent too! This is a good place to bring your frustrations

Caring,
Rae

[MDinpain]

That new technology would be high frequency SCS. Developed in US 30 miles from my house in Menlo Park, CA by Nevro, but only available in Europe because they are less litigious and therefore allow devices in earlier. It will be Nevro only for some time as they have a rock solid patent. Therefore if you have a BS, Medtronics, St Jude whatever - you can't hook up with your leads. You would need a total rewire.

The stimulation is delivered at 10,000 Hz vs. the 80 Hz you get with the standard boxes. It is imperceptible. You just feel "better". Currently a filled trial in US for back pain. Probably out in US in a couple years.

The upside is that it can work well even in for some that did not benefit from regular SCS. I would have loved to hook up and try that - case reports show success with CRPS (Europe).

I would localize the best CRPS program, then turn the Nervo unit on full blast. Sadly, this won't be a reality for a while.

The amount of juice I need to cover my CRPS is huge. I prefer the paresthesia by far, but would love not to have to feel it - hits like machine gun!!!

Get yourself into the best shape you can without killing yourself. Don't drop too much weight if you are overweight. You want the battery placed at the right depth.

My 2 cents

[KathyUK]

Thanks both of you. I didn't get the impression it was anything as revolutionary as the Nevro to be honest but you might be right.

Unfortunately for me I don't get to blame my fattiness on my thyroid lol, I had it checked in March. I'm just a fatty. I lost 4 stones before my last surgery and gained nearly two back still on the diet just from being laid up lol. I've lost a little this last couple of months thanks to coming off Lyrica which had made me pile it on - I gained a dress size in a month!

Carbs are my weak point - I did the Atkins diet many moons ago and it made me go into a cycle of migraines and kidney problems that was pretty awful. That said, I loosely follow a GI style plan and that doesn't hit quite as hard although I have to be careful to eat enough carbs not to get the headaches. I have to be careful with sugars anyway as it is as my identical twin sister is diabetic (as are my parents as of this year, despite being slim and active) and I don't want that happening to me. As of this month I am nowhere near even pre-diabetes so I am happy with that. I'm not happy that my cholesterol is creeping up and so is my blood pressure (problems with both run in the family)!!

It would be so much easier if they would clear me for some exercise. I was swimming 4 times a week and doing beginner's tai chi before my last op and have not been allowed since. I got a bit of hydrotherapy and pilates through the NHS two years ago but nothing since, not even physio. At first the excuse was they wanted to make sure I wasn't damaging myself by getting me an MRI and now that's relatively clear they want me to hold back on any exercise until I've been pacing long term. It's really frustrating. Especially seeing as as of next week I'll be in a bloomin wheelchair at least part of the time. I'm going to have to get really strict with the diet as it's the only way to fix this. My metabolism must be going at a snail's pace!

[Mark56]

Of sounding, well....... off, I venture to add I have been working to reduce anew. The foundation of this maneuver is the use of a regimen known in the U.S. as Medifast. I laid in a supply of bars, soup, shakes, and crackers since it was the means to a prior reduction by which I lost 68 pounds [I never figured out what a stone might be, although Sinead and Jackiey tried to teach me... ].

Since using the Medifast over the course of the recent eight weeks, I have dropped 27 pounds. The use this time was more integrated into my approach to eating, as I believed a more measured less dramatic approach might leave me with sufficient new habituation to avoid the "bounce back" effect by gorging..... SO, I use the Medifast for breakfast and lunch and a mid-afternoon snack. My evening meal is a normal meal just as the family eats, although I have successfully moderated portions and I truly eat less and differently now.

I am not a spokesperson for this particular method. I do not work for the people. I am not even all that crazy about the stuff, although I know it works for me. You would be well advised to contemplate such a process in league with your Doc, as to do otherwise could be a detriment to your health. I have dropped two waist sizes as of this morn, and I am glad of it.

Walking more can help if possible, even though I did read a wheelchair is in your future. I use a wheelchair from time to time, as walking too great a distance is far too much for me. Not the athlete I was before the car wreck, that is for sure.

Well I have "bent your ear" far too long this time,
Hoping the best for you,

[KathyUK]

Hi Mark

Thank you so much for the advice. I have always been a bit wary of meal replacement diets as eventually you have to go back to cooking for yourself and if one hasn't learned to monitor your own intake it would just go back on. I'm also on a very low income and have a family to feed so have always felt I'd be costing us too much if I tried one. That said I've never been working towards such an important goal before and am willing to throw that wariness out of the window if it gets the weight off in a decent time. We don't have Medifast over here but there are other meal replacement diets.

The GP rang yesterday. He has referred me to a "Level 2" (whatever that means lol, it's an NHS term) weight loss and exercise program. He said he has explained to them in the referral that the exercise part is unlikely to happen unless the physio okays any of it. So getting that help on the NHS is a huge bonus. Don't know how long the referral will take but any help is better than no help and at least this way they will be healthcare professionals too.

Ahh yes the wheelchair. I had my assessment (over the phone?!) and there is going to be a six month wait to get one. I can't afford to buy one and the Red Cross will only loan me one for 6 weeks so it's looking like I will be limited to within 5 minutes walk of my house til it is sorted. I'm going to see if anyone else can help. I'm going to need one even more if they're right about me needing both feet operated on!

It sounds daft to say that having a wheelchair will help me walk more but it's true as without it I can't do the pacing I'm being taught and have to rely on hobbling between public benches which are hoarded with grannies (understandably, I'm not waging war against them lol).

Thanks again for all your advice!

[Rrae]

Lyrica did me dirty too, Kathy!! I don't even want to SAY how much rapid weight gain I experienced

I'm down to my normal weight now, thank God.
Swimming is a wonderful way to drop weight without putting undo stress on your joints. Even just walking in waist-deep water is great for toning the legs and not stressing your knees.
You'll get there! You sound determined.
The weight DOES come off. just don't make the mistake of weighing yourself every day! Maybe once a week.

Rae

[DFW_Andy]

Oh, man....I should have stayed out of this thread! I'll try not to stand too long on my soapbox but, alas, I think readers need to see this.

My pain doc put me on Lyrica for a short time - very low dose of it...and I had the absolute WORST side-effects from it. Yes, I know everyone is different and not all suffer from all meds but PLEASE be careful. I literally had periods of 100% memory black-out where I would do things and a few minutes later was completely unaware I had done it. As a technologist that can be a bit embarrassing, to say the least (well, I'm sure that's true for any profession).

Meantime, I am not alone in this. I ended up posting within this forum once I found it.
http://www.medschat.com/Discuss/Does...-173971_s2.htm

Anyway, back to your regularly scheduled program...

[Rrae]

Perhaps we should start a support group exclusively for Lyrica victims!
My LORD it was a bad experience

[Mark56]

Originally Posted by DFW_Andy

Oh, man....I should have stayed out of this thread! I'll try not to stand too long on my soapbox but, alas, I think readers need to see this.

My pain doc put me on Lyrica for a short time - very low dose of it...and I had the absolute WORST side-effects from it. Yes, I know everyone is different and not all suffer from all meds but PLEASE be careful. I literally had periods of 100% memory black-out where I would do things and a few minutes later was completely unaware I had done it. As a technologist that can be a bit embarrassing, to say the least (well, I'm sure that's true for any profession).

Meantime, I am not alone in this. I ended up posting within this forum once I found it.
http://www.medschat.com/Discuss/Does...-173971_s2.htm

Anyway, back to your regularly scheduled program...

maybe that is why I do not remembe......r.................when.......
I was at one point and for quite a while on 1800mg Lyrica per day for extreme nerve pain.
Yup,