My 4 hour car ride to the City yesterday was for a SCS pep talk by the doc. If I want to go forward, I see the pain psychologist in 2 weeks and surgery can be scheduled immediately. I made the appointment . I'm wondering if i should get another opinion, although my options are limited for what can be done. 43 years of treatment have eliminated choices. I have both gained and suffered overall for the aggressive treatments and surgeries done to save my arms from the beast...and now I also have degenerative spondy..

I was to be ready and have decided… but I had more questions: I asked the doctor what he would do if he were me. He explained that he felt it was best to start with the stimulator for both upper and lower spine. Then, if that doesn't work we'll do something else… Like the pump for my lumbar and (something else for my cervical spine) Honestly, I feel a bit of caution for the RSD in my upper body. I have nowhere else to go with it. When I told him vibration is a trigger he grimaced... yet he still thinks it's best. ** Does anyone have an opinion? So many times I've been on the verge of an amputation, so I'm cautious even of a needlestick., and I'm uncertain now!
I agreed to a psych eval. and a new MRI of my cervical and lumbar spine. He also ordered me the flector patch. Can you believe my insurance said "fine" to the pump or stimulator and denied the patch? I'll wait til monday and hope the doc can get it approved.

RSD began when I was 13. I was an athlete swimming miles every day and a DVT formed in my arm. by the time I was 30 most of my upper sympathetic chain had been removed, and I still had severe symptoms. Block after block was done (some successful, some not)... and eventually, a last exploratory discovered extra crossover sympathetic fibers into my arms. I was in the middle of so many arguments with the doctors about what was going on. As of ten years ago,my diagnosis was Severe Basal Spastic Disorder. My last surgery for this version of RSD stuff was a peri- arterial sympathectomy, and my symptoms were mostly absent during and long after my tumble off the road. A bump on the arm 2 years ago set of a horrid new round and I haven't gotten it under control yet....


(Here is a little vent) OWWW!! I want to post more... but I can't sit, or stand...my hands not able to hit the right keys... To sit my hips ache and legs have stabbing and jolting pain. To escape the pain, I am running from the kitchen to either of my 2 chairs that are tolerable for a short while,.. then I get up for the next task. When it is at level 10 I go to my massage table~ the best investment I ever made! I can lie face down, otherwise impossible because of my cervical fusion. I must do something...I must!

I am still learning about how devastating back problems can really be. I know about CRPS.. My heart is with all of you who suffer and thank you here for your support too.

Just FYI Hana-

Mine is a Boston Scientific model and the sensation is as though vibrations via my nerves..... rather like a bzzzzzz.

I have been blessed to receive it and am thrilled at its restorative benefit in my life these past 3 1/2 years.

May all be well with you in your decision and your Trial if you go for it!

Thanks Mark!

Your story is one of legend, and I appreciate the support. I don't mind buzzing, but I in this body 'i never can manage to get buzzing to stop... my nerves always vibrate, but if there wasn't all the pain.., I think, !!! It would definitely be tolerable. My body is weak at this point, as I'm sure is the case for many, but I think I that will not stop me.
Interestingly, this time it is about 'caring for' and not 'fixing' my body, so I am evolving.

May you and your family continue to heal!

Oh Hana,
You have so much going on. You certainly don't want to risk possibly worsening your conditions either. There have been some very good SCS outcomes and some not so good.
Some have had very good trials; but different when permanent implant. Often it has been the migration of the leads.

Mark has a very good recommendation which he uses BLAST which each letter stands for what to do to help leads stay in place until they are permanently scared in the position originally intended. I am sure he will explain this for you.

I, myself, had an unsuccessful lumbar trial a few years ago. The vibrating was in the groin, top front of legs and knees. My biggest problem was spine pain, leg pain, as well as the burning in my feet. The trial did not go anywhere near those areas in spite of the rep trying to reprogram. My Pain Management doctor recommends another trial. But for many reasons, have declined.

I completely understand your "OWWW". I have an extra pad on my kitchen chair with a foot rest to put my feet on so as to relieve some of the back leg pain. Also, use my elbows on table putting pressure to relieve some of the spine pain. Have one comfy chair in the family room with arms to put elbow pressure and a couple of throw pillows on the floor to rest my feet. Have to keep getting up and walk around or after a little while; gets too painful to continue sitting. Yep !!! Not nice indeed.

Wish you all the best in making your decisions; especially with possibly two SCS's.


Gerry

Thanks Gerry for your kind words. I've been reading about the good and bad outcomes,and it seems to parallel my experience over this lifetime if surgeries and treatments. The last major treatment I had was steroid facet injections at 4 levels in my spine. My pain went from 10 to 2000 in one treatment and I haven't gotten it back to where it was yet, so I have a fear of further treatment.

Sounds like your experience's similar to mine in things that you do every day just to say comfortable! Actually I'm going to adopt some of them so thanks so much. I'm going to buy some more pillows to help me around. Right now I'm carrying around a bunch of bed pillows that I sit on in the house and one that I take to go outside, in addition to the normal seat pads.

I feel a bit stuck because I am alone and I wonder if anyone has done this by themselves? My right hand works most of the time, even through pain i can do a lot, unless my fingers are numb.

My partner has been MIA because of the difficulty of pain and a TBI since i woke up by the grace of a very benevolent God. It has become dysfunctional so that i left am alone when i am sick or in pain. Sadly, i am not allowed to reach out either, and the issue is not love. Somehow we lost most of our friends in the several years i was " gone". I know that they tried to call..and no one ever answered the phone. Anywhoo, this is a different life than the one i left.. Full of pain and still the sun keeps shining, even when its raining, even at night, there is light.

I am thinking that I will probably go for this trial... and ask them to only activate the lumbar area of it and not my cervical spine just yet. I want to test one area and not blow my whole entire body out if it doesn't work. I guess I would say that I'm healthfully cautious.

The Trial has lead emplacement to a single generator passing to both the cervical and lumbar spine..... assuming the programmer has half a clue, they should be able to provide temporary programs to allow you to select lumber alone, cervical alone, OR both. Just a thought, but going the distance for a Trial can give clear indication what works and what does not.

Prayin for ya, M56

Thanks again Mark...

I had a reply that was eaten when I got up to rest earlier.(they are dear... for the cost of sitting to type can be high! )
Anyway, this is great for me to know...and you're right! I will be able to get it all over with at once,and thank God for a trial. Still.. As I said my main concern is making this CRPS worse... so I'll continue to get informed!
Also, I don't have leukemia but close, and my immune system is suffering a bit too. The hematolgist says my platelets are high enough to proceed, so, that's good. I see my GI doc for the final seal of approval next week. On we go. Like BLAST, don't forget to REST, and well!!

Namaste, Hana

Hi Hana, my SCS is By Nevro. Nevro Senza HF SCS is widely used in Europe and Australia but still in trials in the US. It runs at a much higher frequency than some of the other brands and because of the higher frequency you don't get the buzzing sensation. I think I read that the Boston scientific precision spectra plus also runs at the higher frequency now as well.
Please Check with your practitioner as I was told yesterday that the higher frequency without the buzzing has had better results in patients with CRPS. Seemingly the buzzing can in some cause the CRPS to spread. I don't have CRPS and can't comment, but I can tell you, I have my unit running 24/7 and I don't get any feeling whatsoever to indicate it's running. When I turn it on and off, I only know it's off because the unit tells me it is off.
Be well, be safe, be pain free, my new mantra for us all here on NT.

YOU my dear
are a smart intuitive
amazing beautiful person
and so happy to meet you
you are never to second guess yourself
only YOU know your body as you do
doctors are Not gods
we hope to be in the hands of
qualified knowledgeable doctors
and although time gives one
knowledge but experience
by listening to there patients
thank you for sharing your experience
strength and Hope
you go
kick butt
as MD
is on my mind know
how one challenges their
limits
with much care

again you GO

Hi Hana,
Your fear is in my opinion completely rational, will it work or not but at the end of the day you're only going to know by having it done and if it doesn't work you have it taken out. This is of course the worst case scenario.
Why won't it work, your Doctor has identified your problem areas. He puts in the wires, you behave your self for a while using Marks idea of BLAST and you should be feeling a whole lot better after a few weeks. I found it took me a while to get used two the bzzzz sensation but it was worth it. I think I was more upset when it had to be switched off, I fell in the garden, let's say I hurt another few discs in the Thoracic region, leads didn't go far enough and out it had to come. I guess if I hadn't have a fallen I could still be using it.

I was happy about it and I wasn't afraid of the surgery. I had complete trust in my Doctor and that's important to me and I'd been to theatre so often for procedures and what not, I knew what to expect, I was fine and so will you. I wish and pray the very best and every success for you.

Sinéad