[zookester]

Hello everyone,

So I am now 3 weeks post SCS implant for the treatment of CRPS 2 in my hips/thighs and tailbone. I am healing well - walking everyday, using my recumbent bike and just today started aquatic therapy and in less pain than I was prior to the implant, thankfully.

My first question to those that have the SCS is: is it normal to be increasing the amount of stim almost on a daily basis? For example my resting mode is now over 100% of an increase since the first week post op and I was wondering if this is normal? I assumed as my activity level increased I would need to turn it up a bit but, worried as I am still stepping it up and having breakthrough pain at higher and higher levels. It has never covered all the pain (and I never expected it to) but, it seems that the percentage of pain coverage is shrinking.. or maybe I am just doing to much to soon?

My second question is: at what point did you all notice the pain in the upper back (in the area of spine where the leads are placed) to go away? Seriously.. I want to stretch like a cat so bad!! I think the pain is from trying not to bend or twist.. but it also hurts there when I take in a deep breath; anyone else notice that?

Lastly: does anyone know if it is okay to run/jog after the SCS is healed up? I was told skiing would be okay as long as I stayed out of mogul fields but, I'm realizing that with how the cold affects the CRPS that I may have to give that up.. so thinking of my other passions to fill the void.

Oh shoot.. one more: how long do I really need to BLAST? I'm not a very good patient

Thanks to all who chime in with tips/support!!
Tessa

[Hannabananna]

hi Tessa...sounds like you are doing very well...just when in doubt...don't.

I did increase my levels although only after about a year ...I relied on my meds until I could quit work and take better care of myself...so yes...as I back off of my meds at times I increase my levels.

That wretched back pain between the shoulder blades that feels like a "runners stitch"...i had that for a good 4 months...OMG it hurt....that is where I still feel pain. I so get the cat stretch...I craved it too...I am able to give my body a full, complete, wonderul stretch every morning now...16 months post op.

I think I shall BLAST forever.
so good to hear the optimism and relief in your voice
Johanna

[Nanc]

Hi Tessa!

Glad you are healing well. Yes, I think it is normal to max the stim out quickly. It is normal to need to see the rep fairly often in the beginning for tweaking. I know I did

Sounds like you are doing a lot for only three weeks post op. You really need to be careful. It takes at least 6-8 weeks just to heal. Not sure how long it takes for the leads to scar in, I am sure others will chime in with that info. You need to be a better patient and have more patience , it will be worth it. I must've bent a little too much or reached a little too high because my thoracic leads migrated within two months. I had to have a revision...that was two years ago and I need another one.

My surgical pain was intense at the beginning, but faded away within the six week timeframe they gave me. I did have two SCS's implanted at the same time. I only missed a week and a half of work...I really went back too soon!

You probably could run once everything is healed, leads are scarred in and the dr gives you the go ahead. I have read on here where some others have resumed golf, kickboxing, etc.

I hope you continue to improve!
All the best,
Nanc

[Rrae]

Now, don't go callin yourself a 'bad patient' ! The mere fact that you are concerned enuf to address these issues makes you a GOOD patient ya hear!!

I can't really add to the wisdom that Nanc and Johanna provided because they pretty much said it all.
I can't remember if you've had any tweak sessions yet? The 1st few weeks can seem a bit tricky as you heal from the procedure. Scar tissue is forming around those very fragile leads and ANY slight wrong move could potentially cause a lead to slip a little. This would possibly cause the stimulation to change, perhaps even stimulate in a different area.
Usually it takes a few tweaks to help keep the stim where you want it.
I surely do NOT want to see you make the boo boo I did.
As we heal and start feeling better, we tend to get a wee bit ambitious. It is SO very easy to reach too far or twist and turn the wrong way. And you certainly don't want to have to go in for a revision.

The aqua therapy is wonderful! Stick with that. It did wonders for me.

I too had the pain where the incision was on my back. It felt like a bee stinging me when I would first turn on the unit.
That went away after some time.

well, gee whiz....here I've rambled on even when I said I didn't have too much else to offer

Rae

[Hannabananna]

I have not seen this problem mentioned here. This plagued me for quite awhile.
Because of the awful sharp pain inbetween my shoulder blades....I found it quite difficult to "wipe and clean my rear privates". I would contort...more pain...and get the job done. Many mornings I designed in my head a gadget for the purpose. My spinal nerve injury is along the colon line so pressure would cause intense pain...still does....and me all contorted...what a sight and scream!!
I love and own (she owns me) a Blue&Gold Macaw...she makes all those sounds so I must have been using much enthusiasm for her to learn them.
I got thru it tho I laugh at myself.
Go slow Tessa...it is worth it...I am scarred in beautifully. If I was not working I was in bed...rest tons.

Johanna

[zookester]

Many thanks for the reassurance that everything is going along normally.

I haven't yet had any adjustments to the programming yet. My area of stim seams to be pretty good as far as the area of coverage goes, so I am reluctant to have any changes done yet. I have an appt. today so maybe I'll go ahead with some tweaking.. a little scared that I might lose the current coverage but, I'm sure that is just my own fears.

The pain in the back/shoulder blades - after reading all your posts I do believe this is pain of 'disuse' and that once I am able to stretch and bend a little it will subside. Trying to be patient.. 3 more weeks, 3 more weeks..

The hot tub has been a big help as has massage therapy. My massage therapist stays away from the leads and IPG site but works the rest pretty good.. oh if I could just go in more often

I feel like someone is dangling an ice cream cone in front of me.. but telling me I'm on a diet at the same time. I know I can do more now that I have the SCS but.... the BLAST really sucks!! I really, really want that chocolate chip mint.... patience I know, patience. Here is one reason it is so hard...


I was BLASTING.. here I promise!



The mountains are calling me. Wishing you all the most enjoyable, rewarding day possible,
Tessa

[scarbran]

My dr. has scared the bajezzes out of me - he said the pain was horrific and that as soon as I wake up take more pain medication. I have had 3 back surgeries, 2 neck surgeries, 3 sections and breast reduction and I am petrified about this procedure - also when did any of you feel like returning to work??? thanks Scarbran

[zookester]

Hi scarbran,

I don't know why your doctor would say things to scare you like this.. geez who does that?! Anyway's I just had my SCS implanted a few weeks ago and honestly it really wasn't as bad as I thought. Since you have been through multiple surgeries I am sure you will cope just fine with the surgical pain. The most uncomfortable part for me is the pain in my rib cage or just between/below shoulder blades but this isn't from the incision it seems more like pain from trying to stay straight and not being able to bend or stretch.. like someone mentioned earlier 'a bad runners stitch'. The 3 hour car ride home was also uncomfortable but that was expected and resolved once I got out of the car. The battery site still causes some discomfort when I go for walks or my pant line is pressing on it when sitting .. but I am sure that will continue to get better over the next few weeks. All of the discomfort felt from surgery is nothing compared to the pain caused by the CRPS 2!!

Good luck and might I suggest finding or at the very least questioning your doctors intentions by his/her scare tactics.

God bless,
Tessa

[Hannabananna]

Tessa has a good point on the doctor although all mine said was that he increased my dosage because I would need it.

For me it was very painful ...my one and only open me up back surgery ---the pain between the shoulder blades and I went back to work at 10 days and I don't think I healed until I quit working 6 months later.

It is such an individual decision...the pain over rides logical thought at times...read all you can.
Johanna

[zookester]

Originally Posted by Hannabananna

Tessa has a good point on the doctor although all mine said was that he increased my dosage because I would need it.

For me it was very painful ...my one and only open me up back surgery ---the pain between the shoulder blades and I went back to work at 10 days and I don't think I healed until I quit working 6 months later.

It is such an individual decision...the pain over rides logical thought at times...read all you can.
Johanna

Sorry hanabananna to hear how painful your SCS was! Glad to know though that you were able to quit working and have since healed up. Do you plan to return at some point or have you decided not to? Sorry if that is to much of a personal question.. I'm wondering if I'll be able to go back to my job.. and trying to think things through.

.. I don't think it was as painful for me only because of the 11 other BIG BIG surgeries I had during the previous 1.5 years.. surgical pain became sadly normal for a while..

The one thing I am learning quickly is that one minute things feel tolerable and the next WHAM.. out of the blue everything changes. Ugh. I did go in today and got my SCS tweaked and added some new programming. lol.. I wasn't even aware of it's capabilities until today.. happy, happy JOY JOY. Wondering if anyone has used medical marijuana for breakthrough pain and if so, what was your experience? I live in WA so it is not illegal here and although I have been told by many to give it a try, I am still hesitant. On the same hand though I would think it would be better than opiates or higher doses of neurontin to cover the flares? What do you think?

So glad to have this board full of wonderful people!!