Hello All,

Recently I posted a case report about the use of and Epidural Cath-A-Port that had given a young woman 10+ years of excellent pan control for CRPS II / Causalgia. I am excited to share with you all that after sharing this article with my doctor and a few others on the same, that we started the first steps to see if this will work for me also.

The first test was an Intralaminar Epidural Injection - this was a long acting right sided lumbar injection with Lidocaine, small amount of morphine & versed. The idea was that this would show whether or not the medication did indeed relieve the pain from where the nerves are damaged and caused CRPS II. I am happy to say that it did that 100% .. actually it worked to well (as expected) in that I was so numb from the right rib down that I could not walk. Much like getting an epidural for surgery to the lower limbs.

The next step is to place a temporary continuous flow epidural as in inpatient so that the meds can be adjusted to allow me to walk and most importantly still relieve pain. They will also monitor closely for any signs of infection as they would anytime you have an epidural. The insurance companies generally require this part of the process but, the bonus it that there are many studies that indicate the effectiveness of an epidural infusion so perhaps I will benefit just with that alone - there is always that hope. I am being admitted for 3-7 days starting at 11AM today .. oh am I looking forward to the relief, some directed PT and mostly for some much needed rest as pain has been increasing daily for months.

The final step as long as this is successful is placing what they call a 'tunneled epidural catheter w/port'. This is slightly different that the pain pumps that are used in that only the catheter and epidural are buried under the skin - the infusion part is attached when needed by a pouch that connects to the internal port. A home visiting nurse would come weekly to change meds and flush system.. another great bonus for me, since I live 3 hrs from my doctors office so that will be much less driving YIPPEE. This system will be filled with non-narcotic medications like lidocaine etc., more of an anesthetic effect rather than narcotic pain control which is what works best for neuropathic pain generally. That is also very important to me due to the cognitive effects of pain meds.

Oh.. I am dreaming of wearing something other than stretch pants, showering without the fear of water drops hitting my worst leg, actually wash my legs with soap!, going into a building and not immediately looking for all the air-vents so that I can plan my route accordingly with hopefully less pain and so many other things.. oh I hope this works!!

I know this isn't a common procedure but the theory behind the inpatient epidural is similar to that of a ketamine infusion only less potent and in my opinion dangerous meds. I plan to keep you all updated every step of the way since I really think this can help many of us who have exhausted all other options for pain control without any significant relief.

I do have an SCS and although that still works and runs 24/7 it isn't enough. For those curious about the epidural along with the SCS - the epidural catheter will be placed right along side or one vertabra lower than where the SCS leads are. Wasn't a problem when I had the initial injection so I am not worried about any problems there.

Wishing you all the best day possible - I'll check in as soon as I am able.

Tessa



Everybody needs beauty as well as bread, places to play in and pray in, where nature may heal and give strength to body and soul alike.
- The Yosemite

Tessa, I am so happy that you are possibly finding something to help your pain, and possibly help others too! Please do keep us posted on your progress. I wish you the best of luck durng this process.

Nanc

Wishing you the absolute best today Tessa!! Please keep us posted as you feel up to it. I pray you wake up and feel no more pain!

I am so pleased to hear of your progress Tessa. The best of luck and may all your wishes transpire. What a blessing.

That's fantastic Tessa! Do you know if this works for people with upper body RSD? I also have crps type 2. But mine is in my upper body and arms and my dr told me I would not be a candidate for even the SCS because it wouldn't help.

Hi Tessa, I am so happy you found something that may help you feel better. I will pray that it helps and that you are painfree soon! Take care my friend. Sincerely Renee.

Good Morning All! Warning medication is making my normally poor spelling and grammar even worse ! Please forgiver typos and brevity, thanx.

Thank you Nanc, Vrae, Krow47, tos8, RSDRenee, Az-Di, visionoisiv & the others who reached out to wish me good luck yesterday - that little gesture of kindness means so much!

It has certainly been a long 24 hours. After getting the epidural placed, I received the first to medication bolus injections while we waited for the hospital to assign a room. The medication was fantastic except that it paralyzed from the chest down and limited use of my hands/arms. Gosh, what a bummer since the pain was completely gone :/ Let me tell you what an eye opener that experience was though... I have always had respect for those who are physically incapacitated, but I cannot explain how deeply I feel for anyone enduring that kind of daily challenge. I mean I know I often say 'I can't do something' because of pain.. but this experience has given me a whole knew understanding of what the term 'can't' actually means.

Anyways, moving along.

After getting my room number it was actually almost 8 hours before they were able to start the 'continuous epidural' due to one problem after another. I was beginning to think I wouldn't actually get this therapy after all. Thankfully after a mechanical failure, battery change and an expert nurse from another floor being called in to help with this machine they did finally get it going. By this time however I was beyond miserable. People going in and out of the room, bumping into my legs and this stupid air-vent blowing ever so gently over my bed all together brought tears to my eyes and and uncontrollable shake to my lower body. The nurses tried there best to avoid causing me pain but as you and I know all to well that this thing we call CRPS is relentless, not caused by anything in particular, just made worse by them.

After adjusting the meds in the epidural I was able to re-gain the use of my arms and the less painful CRPS leg. The right one and most painful one is still numb to where function is limited and sadly.. still has a couple of the painful symptoms breaking through. That seriously bums me out - I do hope that with some fine tuning of the medications, that we strike a perfect balance between pain control and functionality. Not giving up yet!! The next few days are more about blocking the pain party my nerves have been having than anything else.

Good news - I slept for 3 hours straight!! Whoot Whoot that was so nice. Normally I only sleep for 30min to 1 hr at a time before pain jolts me out of my dreamland. That was what I was looking forward to the most honestly.. just a little quality sleep It is amazing how much more we can endure, when we aren't sleep deprived.

I really do hope today goes a little more smoothly.

Tessa

Hi Tessa. I'm glad to hear you are slept well and that the procedure you had helped a little. I'm sorry it took so long to get it done and that you were unable to move some of you body during the procedure. That must have been terrifying. I am glad it helped a little, and hope that it will help more especially your right leg that seems to be giving you the most trouble. I will be praying that your day tomorrow goes even better and am proud of you for still trying. You are always so positive and an awesome role model for the rest of us. Make sure you rest up enough for tomorrow. From your friend, Renee.

Oh Good, good! There you are!

So sorry to hear about the paralyzation, good grief. I do know what that feels like though. Was that way for me when i woke from my 2004 surgery and stayed that way for a week, but only from the waist down. Can’t imagine from the chest down. Wow Tessa, so sorry hon. I agree w/ you about those who endure those challenges daily. Anyway, glad that got that worked out and you can use your hands and arms again.

Yikes, an eight hour wait? ugh! You’re amazing! What a trooper. Perhaps after they bathe the nerves in the analgesic for a bit they will calm down more and you will see even more relief. But for now.. Yes, that’s fantastic that you got a few hours of uninterrupted sleep, in a hospital no less. You poor thing, yes.. you need rest badly. I hope you get more today. Sleep deprivation sucks and exacerbates everything.

I hope today goes more smoothly too Tessa. Goodness, what a patient woman you are. My hat is off to you! I’ll say it again... amazing! Keep fighting T, Keep fighting! I’ll be looking forward to another update!

Omg! You crack me UP!! huktonfonix ...lmao! me either <sigh> I hope you have a good night tonight hon. ((((((Big Hugs))))

Hey Vrae,

Thank you Vrae and Renee!! I am doing better now. Rough night and morning but it wasn't anything we didn't expect. Finding the perfect balance is going to be a challenge but, I am confident enough in my doctors that we will do it!!

lol.. I wanted to message you and post more but my fingers and arms just wouldn't work. My heart especially goes out to those of us who suffer with CRPS in the hands and fingers - I will do whatever I can possibly do,to help create awareness and or find a cure. My doctor and his ARNP spent a great deal of time this morning discussing the many affects of CRPS with several nurses who are caring for me. They were fascinated and blown away to not only hear about it but to see first hand the severity of it.

I have so many funny and eye-opening stories to share with you guys when I can focus a little better.

Vrae - I couldn't do this without you!! You have inspired me, you keep me focused and you crack me up when I don't think anything could possibly make me smile - love ya for sure!!

Update on condition: After being so numb that I couldn't even feel myself peeing (pardon) all over everything. I am now walking down the corridors, peddling with mobile PT peddles and working with thera-bands. lol.. I haven't pee'd myself in 4.5 hours so the nurses are much happier now.. haha. Seriously though, I felt so bad for them and for me! Oh well the amazing part isn't the falling I do along this journey it is the moments where we get to rejoice in little triumphs. So today my triumph is that I can tolerate my legs being exposed to the air, to touch either from me or someone else and I can walk without limping Yipee Yahoo!! Those are huge things for me and a reason to rejoice!! For those of you who need a little inspiration today go here: https://www.youtube.com/watch?v=b8VoUYtx0kw makes me want to get up and dance!

Thanks again ya' all - you really do make a huge difference in my life!!