You all are my HERO's:
A hero is somebody who is selfless, who is generous in spirit, who just tries to give back as much as possible and help people. A hero to me is someone who saves people and who really deeply cares.

This last week would have been so much harder without all of your support.. from the bottom of my heart thank you and now it's....

Wow its been a long week.. 6 days of trial and error with medications but, it paid off we have finally found the correct dose!! YIPPEE YAHOO. It was definitely more difficult than I thought it would be.. for instance 24 hours ago they changed the medication that was in the epidural and 12 hours later, not only was I back in agony but, I was also so numb again that I couldn't walk. We had to try a few different medications so that we would have a plan B,C,D & E... just in case for some reason the one that had been working no longer did. Making these adjustments and trying new meds was obviously much better and safer to do while I was here in the hospital. The plan now is to send me home with this epidural catheter while we await insurance approval & OR room for the final and permanent implant. This means a home health nurse will need be visiting me daily while I have this unit in place. The hospital will make all those arrangements - thankfully one less thing for me to worry about.

How do I feel? I feel great - like I could run a marathon! Pain levels at the moment are 1-2 - simply amazing!! The only pain that is breaking through the epidural is the lightning bolt pain that occurs down my leg with every single step I take. This was excruciating and now.. tolerable. There is still the tenderness (like a permanent fresh bruise under the skin) but that is also tolerable. The sensitivity is gone, the burning gone, the bone crushing gone.. etc., GONE!

What medications are in the epidural? Ropivacaine (same family as lidocaine) and a very small amount of fentanyl.

So far the only additional medications I need is Baclofen for the muscle spasms/jerks everything else we discontinued the day I was admitted. Yippee Yahoo !

Do I think others would benefit from this? YES absolutely!!

Now... let's hope I get to go home today.

Wishing everyone the best day possible,
Tessa

YAY!!!! Such wonderful news Tessa! So happy for you!!

I hope you get to go home today and get there safely. Please keep up posted!!

Nanc

I'm so happy for you Tessa! I hope you are home now and still feeling great!

Thank you Renee! lol.. I had hoped I would go home yesterday I'm pretty sure I will today, if not they might have to catch me, because I've already got my running shoes on and those elevators are calling my name!

How are you feeling?

Tessa,

Awesome!! Thanks for sharing this exciting process...and prospect for future CRPS treatment...for following through on this treatment! I had a temporary(placed in thoracic spine) years ago when it was being experimented with and it worked like a charm for 2 months for my severe CRPS- in my arms. I had surgery that temporarily "cured" me so that "I could get back on the road". I had better time afterwards and didn't pursue it again til now. I'm also in the severe category of causalgia, now arms worse than legs. However, I also have DDD and spinal stenosis at several levels to compound the issue. At this point I have been offered a pump in addition to a stimulator, but they want me to try the stimulator first... I don't think my CRPS can handle it in my upper body, so I'm going slowwww. I'm thin and I have a plate from an ACDF cervical fusion. I vibrate already...

So I have choices and am following your journey with hope and prayers that you rock with this.. that you heal into a more pain free existence. I admire your strength and courage!!

May you be well!! We all want for your success!!

Hana

I secretly wonder if you have any idea at all how brave you are… and check this out, it was ALL worth it! Right on T. I am so incredibly happy for you, you have no idea. You go girl! Your husband and family should be so proud of you! I am sure it will feel great to get back home. There’s just no place like it.

Hana,

Forgive me, but I didn't understand if you had a temporary epidural or something else in your thoracic spine? I'm curious if you wouldn't mind clarifying? Sorry it didn't last longer for you but glad you had at least a period of relief.

I don't know if you have read some of my other posts but I also have an SCS implanted for almost a year. It has been amazing for me.. just not enough especially since it has spread from legs where the SCS provides stimulation to both arms and to my bladder. I still have it running 24/7 and still grateful that it is working to at least some degree. Its not any different that how meds work .. offering some relief but just not enough for it to work on its own with out further intervention of one type or another. If you have questions about the SCS feel free to send me a PM.

This epidural is amazing!! I feel incredible.. not only because of reduced pain but even better is that this is not causing me to have all the side effects that I had with taking so many pills. I'm only slightly groggy which could be from boredom or from the baclofen that I am still taking orally but, so much better than the daily vomiting, itchiness, groggy feeling etc., that I we all suffer from all the pills that barely work!!

So glad this is giving others hope! We all need that and I believe 100% that this is way under utilized for treating CRPS and can be used in conjunction with additional injections/blocks etc.,

I didn't get out today like I had planned so I was a little bummed out earlier today so please forgive the delayed response.

Wishing you the best,
Tessa

Oh Vrae - that was like the warmest iHug ever!! lol.. I wish I had made it home but apparently the pharmacy didn't stock the meds that go into the epidural so now I wait until tomorrow.. bummer!

I wonder if you all know how much your kindness, encouragement and support has carried me through when the moments were tough?!! It has been through all your support that lifted me to a place where I could find that strength!! I couldn't have done it without you all..

Sorry Tessa that you haven't been able to flee the scene yet, but perhaps a higher power needs to sit on you for another day?
AND Congratulations on the success!!

I too shared that experience of success with the pump, and it was utterly the best !!.
Mine was implanted for the sake of an extensive surgery that I needed. If I was "cured" by the surgery then I shouldn't need it going forward...? I had no brachioplexus left from the multitudes of surgeries including sympathectomies and rib resection in my chest shoulder and arm. Part of the surgery was exploratory part sympathectomy and more clean out...my case was complicated. The drip would not be enough, no pain patches on the mkt yet, and I had no ganglions left to block..
It was put in a week before the surgery, tuned in the hospital and i went home in bliss before my surgery.. In fact, I felt that I shouldn't need surgery at all. Unfortunately it fell out the night before surgery, and during the surgery they forgot to replace it. I woke up in the worst pain I could EVER imagine and it took two days again before I could be calm enough to put it back, then the relief was beyond amazing.
It was only for the sake of the surgery that they did it, because each surgery was looked at as it were a cure. haha.. I raced out of the easiest recovery i can remember. I got up tenderly but without anything excruciating. No nausea, vomiting, bad pain constipation ...et al. I barely needed oral meds for anything, only worst break through. I raced up and down those halls.. just itching to fly.. ....I'm with you on the absence of all of those horrible side effects!!!

I cant imagine having a stimulator and then getting more RSD .... Definitely praying for this to not do that to you, and that you have no new side- effects. What the doc has told me now is that the risk of it being put up so high T2-3 is risk to breathing if there is complication.. so that is my consideration,
I am definitely interested in your stimulator experience also in regard to this, and would like to PM you, thanks. I'm a little slow from a TBI so please bear with me all. I was once a fluid writer. 2 working fingers and a TBI with a non-multitasking ability changed all. So, I can't take anything for granted!!!! Life is a good ***** (or beach)...if you don't mind my saying. Sorry the long.... post.
I will post my own thread with greater response, eventually, but I am slow.

Now Tessa. Please go forth gently until it all cements. And then fly girl fly. We are so happy for you this great opportunity.

And all, pray you can rest and heal, finding relief from your pain..

Hana

OH Tessa, I am so happy for you. All I can think of is tinkerbell and how happy she was when she flew and with the golden glitter around her and the stream behind her. May your days be as golden Tessa but go with caution when they open the gate. Hugs and best wishes.