scs and what to expect
 

Hi everyone,
I have been dealing with RSD in my hand/forearm for 2 yrs now. Been through nerve blocks, PT/OT, pulsed radio freq. ablation and now hoping to be able to try a scs. I have a tens that works great, am on lyrica 300mg, cymbalta 60mg and mobic 7.5mg.

My question is what can I expect? What limitations? I used to run my dogs in agility trials...will I be able to again? I just want my life back. I'm going through a bad flare right now and think it's spreading into my elbow, I have been getting BAD stabbing pains in my elbow. Having trouble opening my hand, doesn't seem frozen because I can open it with my other hand but my brain just can't get them to move.

Welcome Stressed!
 

You are now among us in a good place to find out about the effects of SCS in a variety of placements, especially with your thread on this subforum! I expect many will reply and give you their thoughts about SCS, and as for me, my thread is the Boston Scientific Mini Rechargeable under Mark56, it is pretty long and takes you through the whole of my process to date, but it is laid out there in detail. I have been able to wean off of all medication and use the SCS to control all pain. I am now actively looking for a return to my profession, law, while before SCS I was so doped up on the likes of morphine and 3000mg of Neurontin a day that I spent most of my life in bed. I am working to get back that zest for life I knew before my car wreck, and I believe you may be able to do so as well! Goodness, I was so messed up after the wreck I had a host of surgeries over the years, four of them on my hands, and my hands are returned to functioning, when my doc had given me the prospect that the nerve in my right arm was dying at an alarming rate, thus preceding one of my surgeries.

My SCS is positioned to assist my nerve damage in my lower extremities and it works well for me there. Hopefully someone who has had it positioned to help with hands will join the discussion you have started here; but this I know it is used for a variety of treatments, even nerve induces facial pain, so giving it serious thought in your situation truly bears a read through some of what we who are now part of the SCS community have on our threads may provide hope for you and your situation.

May you know peace, and be able to run your Dog friends once again in trials as you so thoroughly have enjoyed.
Prayin,
Mark56:):hug:

Hello Stressout!
 

So glad you paid a visit to this sweet little forum! :hug:

I am so very sorry about the RSD battle. The loss of function to your hand sounds very frustrating!
My first (encouraging) thought that comes to mind is that it's a good indication that you may benefit from the SCS, especially since the TENS unit seems to do you good. This could be a good indication that your hand is willing to 'respond' to the type of treatment the SCS would offer. The pain signals would be blocked by the stimulation.
Have you lost much muscle tone to this hand? (Atrophy)
Hopefully the blocked pain signals would allow you to get better PT and strength back.
There are several here who have the cervical stimulators. Hopefully they will pipe in. It would be good to know if you will regain motor function to your hand.
Like Mark, I too have a lumbar SCS for lower extremity nerve pain, which truly does a wonderful job of covering over the burning pain. Initially, I responded (very briefly) to SNB injections, but that was encouraging enough to go thru with the trial since I DID respond.

I do not know if the stimulator would help you to regain function or not. All I do know is that it does a wonderful job of covering over burning nerve pain.
I recall briefly taking Mobic for a wrist injury. I believe it is an anti-inflammatory?
Also, it might be good to address your Dr regarding the new 'shooting' pains you are experiencing. I've heard things regarding the nerves possibly trying to reguvinate and shooting pains could be part of this, but, this may be hearsay. May be a good question to bring up.
I'd certainly express your concerns about the possibility of the RSD spreading. SCS's have been known to carry a risk of spreading.

I wish you the best! Please keep us posted on how this unfolds for you.

Caring,
Rae
:hug:

SCS trial feb 8th
 

Thanks. I am approved by wc to go for the scs trial on Feb 8. I am scared and excited. I so want this to work. I've gained over 20lbs with the meds. I want to be able to come off and lose some weight and get my life back. My kids plan on calling me "electro mom" when I explained the scs to them. The oldest is almost 18 and the twins are almost 16. Kids can be funny sometimes but at least they are understanding and want to help me get better. I want to ask to go back to PT after the scs is in if it works so maybe I can gain more stregnth and function in my hand. I do favor it, it's painful. I ussually wer a fleece arm warmer that covers it up so it stays warm. My three fingers are very hard to open and getting tighter. I do try every day to pull them open. I can't wait to get this done. Scared about the limitations though. Once this is in will I be able to run and dance etc if it blocks enough of the pain or will I still be limited??

Limitations
 

Hi Stressed-

Of course, the post operative limitations will at first be impressed on you by your doc, the recovery room nurses, and your doc's PA, for those first many weeks of recovery. Then, since your case is Work Comp, and if you have helping you through that process, they may have thoughts of their own regarding what you should and should not do as your case is pending so none of your conduct post op might "cause new injury." So the best thing is to ask your care givers and those helping you with this matter what may be your limitations and for how long.

You should anticipate physical therapy if your doc believes it has likelihood of therapeutic benefit and prescribes it for you post op. I had many weeks of physical therapy post op.

Looking forward to your trial,
Mark56:)

Electro Mom :)
 

I like that! I too have 16 year old twin (boys) and boy do they keep me on my toes. They are sweethearts tho and are always looking out for 'mom'.......

Electro Mom has a nice 'ring' to it....... some of us 'Lumbars' call ourselves the BIONIC BUTT BUZZERS!! :D

I think that once you settle in here, alot of these 'jitters' you are feeling will dissipate and you'll begin to foresee a future as one of getting your life back. That's what the SCS is all about. Yes, it is quite a process and it's a high dollar procedure, but just take it a step at a time and soon you'll be looking back on this....

You'll find so many caring people here and we are always learning from each other.

You've got friends
Rae
:grouphug:

Hi Stressed out or 'electro mum':)
I have rsd in my left leg which was very bad. in my pelvis also which made it so difficult just to stand up or sit down and i also had dreadful lower back pain and it had just started to go into my right leg, I had the scs put in just over a month ago after going through nearly 3 years of pain and meds. i am finding it fantastic and am finally getting a taste of what life can be like again. I am off the lyrica ( which does pile on the pounds ) and all the heavy pain killers already. the coldness which you describe is now gone from my legs and i now sleep like a baby every night without the aid of sleeping tablets. I would definately go for the trial as the possible relief you may get from this is so worth trying in my opinion. I found this site just as i was diagnosed with the rsd last september and the support i got before during and now after op is amazing! J

getting nervous
 

As the trial (2/8) gets closer I am getting more nervous. What happens during the procedure? More pain? What can I or can't I do during the trial? I have 3 teens & my 3 dogs to care for while hubby at wk.(he frequently has to go away on business) Will I be able to drive?

I believe it will be a Medtronics scs. My Dr did not explain much to me but gave me a Medtronics packet (he only had one for lower back and not cervical but said similar). Mine will be for RSD in my hand up to my elbow.My husband is taking that day off but will he need to take more days?

I guess I'm just hoping someone can walk me through the procedures so I know what will be happening? I keep telling myself this will work....I want to be active again (I show/train my dogs in conformation and agility & want that back). Tired of pretending it's not bad FOR EVERYONE ELSE's SAKE.

Patty

The trial
 

Dear Stressed-

The Trial usually lasts one week or less, and the wire leads are secured with a couple of stitches where they emerge from your skin, they are taped securely and then connected to your electronics package. Mine was Boston ?Sci, and I wore a waist belt which secured the electronics for the trial. I did not drive, because I was warned the leads are not held in position by much. Walking was certainily OK, but driving for me was not allowed.

Be sure you ask your doc or your rep in your scenario to get down EXACTLY what your restrictions will be. This is coming up pretty quickly, so a call to the doc's office before hand would be in order, like today.

Hope this helps for you and does not increase your stress,
Prayin,
Mark56:hug:

Patty
 

It's perfectly normal to feel nervous as your day approaches.....especially if your Dr didn't explain much! Shame on him! :rolleyes: One of my pet peeves is how 'complacent' these Dr's can become. They do so many of these procedures that they somehow lose sight that this is the FIRST for us. Not only that, but this could potentially spell out how the future goes for us! Our quality of lives depend on this.

Thank God we have forums like this one to turn to! I've learned so much more by communicating directly with other patients, as opposed to researching online.
There is a very informative link that Fiona provided.....it is at the top of the page in the 'stickie' important info section. I'll tag it on to the end of this post. I can't remember if I've already given it to you or not. I refer to that particular link quite often. It really explains in detail what is involved in the actual procedure.
Aside from that, it's just good to hear from other people who've been thru this. We speak 'real people' language. Not propaganda 'sales pitch' stuff.

The main thing I can stress is to Have the medical team explain the post op instructions to you BEFORE you go in for the procedure!! It's very frustrating trying to comprehend what they are saying and handing you the equipment you'll be using for your trial period....when you are sedated from the procedure! It becomes overwhelming and intimidating.
Simply put, it's better for the stress level to be as familiar as possible of what is going on.
Usually (I think) they send home a DVD with your trial kit, so you can become familiar with the settings in the comfort of home.
It's also good that your kids are older. Put the teens to work around the house. Have a 'family meeting' of sorts :) so everyone can be on the same page to understand what mom is going thru and what you will need help with.

The first day you will probably be sore from the procedure itself. Please don't become disheartened by this. Pamper yourself and use ice on the incision (but no ice on the RSD area!) and rest.
By day 2 and 3 you'll feel more excited about the options the SCS has to offer and you can mess around with the settings and try to do simple things around the house.
Of course, if your Dr says anything otherwise, HE's the BOSS. I'm not sure what he'll say regarding the driving. I would try to avoid it if I were you. It requires turning your head and there are always 'idiots' around every corner. You never know WHAT might happen.

You'll have plenty of support here!
Do your best to allow this to be an 'exciting' time for you. This could potentially bring you back your 'life' and the things you love to do!

Here's that link....
http://www.nationalpainfoundation.or...e-technologies

Rae
:hug::grouphug::hug: